tag:blogger.com,1999:blog-89346099799104643802024-03-12T17:28:29.181-07:00Mirroring GraceAmberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-8934609979910464380.post-85717864692136703612018-03-13T14:10:00.000-07:002018-03-13T16:47:18.567-07:00New Springs<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "trebuchet ms" , sans-serif;">We moved into our home in mid July, 2014. Ryan's previous job, like many accounting jobs, required a huge number of hours. However, this one didn't only require them during tax season. He worked 60-70 hours a week during what is widely considered "tax season" (though not doing taxes), most of July, October, and a couple of other times during the year. It also wasn't unheard of for him to get phone calls at 3am. During the weekends he wasn't working, and during "vacations," he was tied to the email system via his smart phone. We were slaves to his job.<br /><br />This is going somewhere, I promise.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">In July of 2014, we moved. We had tried to time it so that our move fell between "busy seasons," but that didn't work out. Therefore, Ryan not only had no time off, but was essentially not home at all. A couple of older teenage girls helped me empty boxes, but we're three years in, and we still have curtain rods that aren't up and pictures that need to be hanged. There was no time to settle in.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Within two weeks of that move, <a href="https://mirroringgrace.blogspot.com/2014/08/when-life-is-hard.html" target="_blank">I was hit on the interstate</a>, thankfully in the commuter car, with no children, which is an exceptional rarity. The car was totaled and I had some whiplash, but otherwise, was okay.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Pip is 6 months old here, and obviously not a master of head control, despite hours and hours of tummy time. None of my babies were "container babies." You can also see the beginnings of the ridges and lumps that ended up eventually getting us referred to a specialist in a craniosynostosis scare.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">While all of this had been happening, Pip had begun to fail to thrive. He was six months old, and had been steadily dropping on the growth charts. He had also had the worst stomach flu I'd ever seen in anyone the week before we moved, let alone had ever seen in an infant. He was our fourth child, and I'd seen the stomach flu, but this was bad. I even called the after hours nurse line. He did it twice more after we moved, which is when it hit me that it always happened two hours after eating sweet potatoes. That third time, he went limp, pale, and grey. We should have gone to the ER. We later learned he had likely gone into shock, and we were very, very fortunate.<br /><br />The day after that accident on the interstate, he was seen by the pediatric GI, diagnosed with FPIES, and placed on elemental formula. He was at the -3% for weight, and 10% for length. A month later, he had an NG tube. A month after that, he had surgery for G-Tube placement. Two months later, at 11 months, his development was at roughly a 4 month level, and it was determined that we had far more than a GI issue, and thus our referrals to multiple specialists and multiple therapy appointments began.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyDZcDe81hIu8X-Nj1dx8lrAbCGDjKQWA2mUPh0Chz4UThXDBLcZTKXiPzsJyTrHMdwf3tt1NXG730MFGHI8-aqAE4eg0ylBg6oF1znhlH149XfheoagYdyFeW1udPkfzY8USSxMBRP19e/s1600/Pip+sitting+with+boppy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyDZcDe81hIu8X-Nj1dx8lrAbCGDjKQWA2mUPh0Chz4UThXDBLcZTKXiPzsJyTrHMdwf3tt1NXG730MFGHI8-aqAE4eg0ylBg6oF1znhlH149XfheoagYdyFeW1udPkfzY8USSxMBRP19e/s320/Pip+sitting+with+boppy.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pip sitting (slumping?) with support right before getting his NG tube. His head looks huge because his body was now so small.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;"><br />Within six months we had moved, had a car accident, had a child placed on a G-Tube, and then learned that he likely had a neurological disease. Moving all the way in, let alone anything else, was put on the back burner. Oh, we had also been told that our other two boys had developmental delays. So much for all of the developmentally appropriate activities and lack of screen time over the past several years.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Our initial gardening area. Small, but yielded a surprising amount of produce, since all of our beans and peas went verticle over the arches between the beds.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW_gUlXp16xtNFHssSUt7uymqlXdXNg7HP-eCZwcmiGJDX5hNSJTMZjB7gzW_hppp28Uj-miyqW-w_JCjnJ7qkau6YdtHWadFnF1WvoUQz85Nbfisunro9vLwS0Et4mZS7fakT-aZD9F0y/s1600/Mercy+with+Garden.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW_gUlXp16xtNFHssSUt7uymqlXdXNg7HP-eCZwcmiGJDX5hNSJTMZjB7gzW_hppp28Uj-miyqW-w_JCjnJ7qkau6YdtHWadFnF1WvoUQz85Nbfisunro9vLwS0Et4mZS7fakT-aZD9F0y/s320/Mercy+with+Garden.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mercy wanted a garden for her 7th birthday, so this particular bed has always been hers.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">Despite all of that, I was determined to garden. We might live in a subdivision, but our lot is large for a subdivision--nearly .25 acre, with a two level house, so it doesn't take up a ton of the property. I have dreams of a half acre to a full acre someday, but that's going to have to wait. I've told Ryan I want to be a nerdy, urban farmer. I can finish up my graduate degree and have chickens and a garden and an orchard and keep up with everything else, right? Regardless, for now, we have plenty of room for gardening, play, and more. However, I've barely managed to get a small one in every year thus far. We have a few strawberries by the house, but because Ryan was so rarely home, I didn't manage to get the edging in. Now there's more grass than strawberries. We also have grass encroaching on our rhodedendrons in the front. Same reason.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">The current garden arrangement. Next year the plan is to add another 4x8 to each end of the smaller bed lines by the fence.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The makeshift green fence is the keep the giant, digging puppy out of the gardens. We're not really "handy" people. As he was finishing up, my husband said "this is the man you married." I have no regrets. I'll take a kind nerd and a good man over handy any day. Though I do wish I was handier, and hope to find time to develop more of those skills in the future.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;"><br />I also wanted to expand the garden this year. This is the first year I've managed to get cool weather plants in on time. I grew up on the Oregon Coast, which is a vastly different climate from the desert of Southeastern Idaho. In case you wondered, I prefer the coast. However, this is where I live, and I'm making the most of it. You can't plant my favorite things, like broccoli and cauliflower, in May here. They positively wilt. It gets far too hot. Therefore, you have start them inside when there's basically still snow on the ground.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Broccoli, Cauliflower, Brussels Sprouts, Onions, Lettuce, and Asparagus seedlings.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">I did it this year. For a brief time, I wondered why I hadn't been this on top of things before. Then I realized that this is the first year we've had in which Ryan has actually had weekends, or evenings. In the past, I was so busy just surviving four young children that there was no way "extra" projects were going to happen.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><br /><br />So, we're happily discovering what life is like with weekends. I have three years worth of backlogged projects. I'm sure it will take at least that long to get through them, but at least we can start working our way through them, and I'm really thankful for that. It feels good to make some progress, and to get my hands in the dirt. I also love that my children love to garden, and they'll try things they never would otherwise if they had a hand in growing it. This year we're going to try Brussels Sprouts!</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">So, here's to a fresh, new season. One with weekends, and cool weather veggies, and time as a family. Hopefully a reprieve from the tyranny of the urgent. We haven't been able to eliminate the appointments, but gaining weekends as a family is a huge start.</span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-37879725534636768772018-02-26T15:05:00.000-08:002018-02-26T15:34:19.776-08:00Death of Dreams<span style="font-family: "trebuchet ms" , sans-serif;">Letting dreams die is hard. And, dare I say it, it takes courage. Courage to admit that letting it go isn't failure. That conceding that this life that you're living doesn't look the way you always imagined it would doesn't mean that it's less. It doesn't mean that you're doing something wrong.<br /><br />We're living in a social media era. One in which everyone wants to see #blessed on every post, every time. So we try. I try. Until we can't anymore.<br /><br />The truth is. I pictured a very different life for myself. For my family. I loved, and still do love, hiking, cycling, long walks--just about anything active, really. Given my degree, music lessons were going to be given, starting about the age of five. Not only is music something I'm passionate about, but there's a fair amount of research showing how wonderful it is for brain development. Oh, and good food--I love that, too. Cooking it and eating it. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Then I had children with motor delays. The first three have taken awhile (they walked between 16 and 21 months), but I figured they would get it eventually. We worked hard at it. Then we had Pip. Pip who has defied early expectations, and yet still struggles.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Right after starting to walk.</td></tr>
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<br />I'm a member of Facebook groups for nature exploration with young children, but the truth of the matter is, I can't go on a hike with Pip. Not during the winter in particular. Though I recently acquired something called "The Freeloader" that will hopefully make this possible during warmer weather, I haven't been brave enough to bundle up my full sized 4 year old, strap him on my back, and then venture out. I'd rather try this new thing when we at least have a normal amount of clothing on. Then we'll have to see how long a hike I can work up to--and how far my other kids, who still have some delays and stamina issues, can work up to. This isn't what I pictured.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><br /><br />We used to walk 3-5 miles a day. We can finally push our older three about a mile on their bikes and scooters. But Pip? Well, that's why we need his adaptive stroller. Walks are dead in the water. Thankfully, in the meantime, we've been given one to borrow, but that isn't a long term solution.<br /><br />And food. Pip is making terrific progress with feeding therapy. We're really so pleased. But what does that actually look like? It means that I'm cutting his rice macaroni into three pieces. Then encouraging him to chew them with his back teeth (and celebrating when he does!). The same is true with pretty much all of the foods he can eat--which isn't many. I think we're up to 11. Or maybe 13. At 4 years old. We're not only cutting his food into pieces the size most people are cutting food into for their 8 month olds, but we're also having to remember to feed him on the kind of a schedule people do with their infants. In fact, because he's 4, and life is busy, we often have to set the kitchen timer so that we don't forget a feeding--particularly the 3pm one. He still doesn't have enough for a nutritionally balanced diet. Nor does enough go down to sustain him. He's still 99% feeding tube dependent.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><br /><br />I'm often reminded by well meaning others that these are things that they're doing for their toddlers or infants, but the key difference is that I no longer have an infant or toddler. This is a game I've been in for years--and my youngest is 4. It's also something we don't have a visible end to. The same goes for our "adventure" status. We're not just waiting for the baby to get a little older. This is our life. Indefinitely. We're having to reinvent our dreams.<br /><br />We have two children on the autism spectrum and one with probable mitochondrial cytopathy. Actually, they're all likely to have mito, it's just that Pip got the shortest end of that stick. But explaining that to people is difficult. I can watch foreheads try to puzzle it out, and I stop trying.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">And it's hard.<br /><br />I don't like park days. I don't get to visit with the moms. I'm the "helicopter parent," making sure my child isn't tumbling off the equipment, and helping him up the steps and the ladder. I don't like fielding questions about why he has AFOs when he looks so perfect. In fact, I asked about going to a lesser brace this last week, and was told he isn't ready yet. It isn't the questions so much as the feeling that people just really don't<i> get it.</i> I leave feeling like the impression is that I'm just making it all up, when the reality is, I'm the mom who didn't get him fitted for new braces, and pulled him out of physical therapy last summer. I was that desperate for everything to be normal. So I pretended it was, until he started falling so often I couldn't anymore.<br /><br />Those music lessons that were always going to be non-negotiable? Well, the plan is now for Mercy to get to start next year, at twice the age I originally planned. Hopefully. I'm having to learn that plans are always changing, though.<br /><br />This is a serious work of sanctification. In so many ways. No only because I'm watching my life turn out in so many shades of different colors than I imagined, but because I'm having to learn to set aside my tendency to want to please others, and be what everyone else thinks I should be. That is probably the hardest part.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">If I'm being entirely honest, I have a hard time seeing these colors as beautiful right now. I watched my son try to get onto a chair at church yesterday, arms quivering, and then fall off. That wasn't beautiful. It made my heart hurt. I don't see a reason behind that. I don't see beauty. I want a cure. I want strength. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqKrQ_JspjRNMGMu4A5nTc_LShsyxOWi0lnOKHepUhzuJj_Bpjo2KU7yDCZ98cuemSCxuE-QbnIaLljQFVrYBEQzu0509xKfVo67WnNUxT-mOlXL4vMOQYXjnmVn3uEbsof-2guZgBs4hx/s1600/Camping.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="540" data-original-width="960" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqKrQ_JspjRNMGMu4A5nTc_LShsyxOWi0lnOKHepUhzuJj_Bpjo2KU7yDCZ98cuemSCxuE-QbnIaLljQFVrYBEQzu0509xKfVo67WnNUxT-mOlXL4vMOQYXjnmVn3uEbsof-2guZgBs4hx/s320/Camping.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We managed our first family camping trip this summer. There was no hiking involved. The kids loved it. Note Pip's lack of AFOs. We were living the "everything is perfectly normal" dream. And it was fun!</td></tr>
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<br /><br />I want them to jump and climb and race with other children, and keep up. I want to relate to other parents. To have friends and belong. As it is, I don't fit with the parents of disabled children, because mine are so high functioning, but I also don't connect well with parents of typical children. And it's a lonely and confusing place.<br /><br />But as winter melts into spring, maybe we'll take that Freeloader out for a hike, and the borrowed stroller out for more walks. Hopefully we'll start some music lessons, and my children will be introduced to the arts in more thorough ways. We'll find our new dreams, our new adventures, and maybe we'll even find some families we can connect with along the way.<br /><br />These dreams that have died will hopefully bring the birth of new ones, like seeds that have been planted in the ground, then burst forth as seedlings from the soil in the spring, full of hope and life. Growing stronger each day.</span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-39140289854572533312018-02-22T17:01:00.001-08:002018-02-22T19:27:37.609-08:00Quality of Life is Irrelevant<span style="font-family: "trebuchet ms" , sans-serif;">Wow, it's been a long time since I've been here. There have been so many times I've wanted to write, but finding the time, and allowing myself to be that vulnerable are both huge obstacles. There are times in life when it's hard to believe that God's weaving anything beautiful, and this has been one of those seasons.<br /><br />The kids are growing and thriving. In fact, this summer, I decided to live the dream, and pulled Pip out of physical therapy, didn't take him in for a new pair of orthotics when he outgrew the old ones, and generally pretended, as much as possible, that everything was typical.<br /><br />Then we started to notice that his stamina was waning and he was falling more. I finally made an appointment with the orthotist, and was tremendously disappointed when Pip ended up back in AFOs (ankle foot orthotics--leg braces up to the knee) rather than the SMOs (ankle high braces) he had had the previous time around.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb9AG5lIaFb8NEAPX1rre9HQ9Mjqu-NakA2Jye5BCMP8AWg5qjRDMT8LMVOH0gI5IMJwE8687qlpHODUsZMok2to9w1EYrN83tjb-XcpvxdZElE61UpE1SZ-FA_6uwQDH6FtofF8Vlxyi3/s1600/Pip+Putting+on+AFOs.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb9AG5lIaFb8NEAPX1rre9HQ9Mjqu-NakA2Jye5BCMP8AWg5qjRDMT8LMVOH0gI5IMJwE8687qlpHODUsZMok2to9w1EYrN83tjb-XcpvxdZElE61UpE1SZ-FA_6uwQDH6FtofF8Vlxyi3/s320/Pip+Putting+on+AFOs.jpg" width="176" /></a></span></div>
<span style="font-family: "trebuchet ms" , sans-serif;"><br /><br />We also realized that, if we were to continue to live an active lifestyle, and go on family adventures, or even shopping, we were going to need a solution for Pip. By November, we could no longer fit him in the seat of the shopping cart with his AFOs and feeding pump backpack. Or, if we could get him into the cart, we couldn't get him out without removing his shoes and braces. He was also rather uncomfortable.<br /><br />Pip doesn't make it beyond the entrance to the produce department (you know, at the entrance to the store), without petering out. This obviously eliminates activities like walks, the zoo, the discovery center, the farmer's market, and any number of typical "kid" activities. Or even necessities, like the aforementioned grocery shopping.<br /><br />Therefore, at the pediatrician's recommendation, we decided to pursue an adaptive stroller. With the help of his PT and our home health company, we picked out the <a href="http://leggero.us/products/?p=reach" target="_blank">Leggero Reach</a>, and had him measured. It's a beautiful option for him. He can get in and out himself (unlike most, and unlike wagons, which cause face plants). It has an I.V. pole for longer rides, when wearing his backpack isn't desirable. It offers the postural support he needs to stay in an upright position without slumping, as he does naturally. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">This one doesn't offer the postural support needed for him. It's the demo model, and had a different positioning system. He's obviously very slumpy here.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;"><br />All of the paperwork was filled out and submitted to insurance for approval, and we commenced waiting. His first denial from Idaho Medicaid* came within a day. Because he is independently ambulatory, he didn't qualify. Essentially, he can walk. It doesn't matter how far or for how long.<br /><br />I had a phone number I was given for someone within the department of Medicaid, to call, in case this happened. So I called. A couple of days later I had a call back from an insurance reviewer. It's a rather unique opportunity to get to talk to the people reviewing a claim. This was a fascinating and educational conversation.<br /><br />Essentially, this boils down to a few things. First, the device must be for the child's "activities of daily living," or ADLs, and <i>not</i> in any way for the comfort and convenience of the parent. Then, it must be least expensive option that will meet the child's needs. It must also enhance, not inhibit, independence.<br /><br />It was said somewhere in his paperwork, that Pip couldn't go more than a short city block. I was told that this absolutely killed his chances. At this point I asked "what do you envision happens after that one short block?" I didn't get a response. So I reiterated that I would really like to hear her tell me what they're envisioning happens. She had no response. At this point, I was becoming emotional. I asked if they would prefer to hire somebody to accompany me, so that we could take turns carrying him through the store (I've now carried him through Costco), the zoo, the market, etc. That obviously wasn't happening.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLRlwGxTeQ6QmWWbBnJhPhpEYa_H2YYjSosxUX_DAiiHQSWB9v5ur-9fRo66EiMTwzGGbwVMqOQKUVpyCOimBaB251FlBMMF98Mxe8OSdLbWkS6DMqAriu4yk3hrarDbZ6JcBYE7TEk71a/s1600/Carrying+Pip.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLRlwGxTeQ6QmWWbBnJhPhpEYa_H2YYjSosxUX_DAiiHQSWB9v5ur-9fRo66EiMTwzGGbwVMqOQKUVpyCOimBaB251FlBMMF98Mxe8OSdLbWkS6DMqAriu4yk3hrarDbZ6JcBYE7TEk71a/s320/Carrying+Pip.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me, carrying Pip through Costco. The fact that he looks beautiful, thanks to lots of care and his feeding tube, probably doesn't help our case.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">I was finally able to express that, the message they are sending to families like ours is that, if your child is disabled, but doesn't fit into their tidy boxes, you get to remain home bound. I was assured that this wasn't the expectation, and yet there was no viable alternative to an adaptive stroller or wheelchair offered.<br /><br />The reviewer called Pip's physical therapist after talking to me, and then called me back a couple of days later. She expressed that, in talking with Pip's PT, she'd gotten quite a different picture. There would be another letter written by the PT, and then it would go back into review.<br /><br />Two weeks later, and it was still denied, despite a letter stating that he can't sustain more than 100-200ft. of continuous ambulation on a good day, and none at all on a bad day. The denial still stated "independent ambulation" as the reason. It doesn't matter if you can walk 100-200ft in AFOs (on a good day), or 5 miles. If you can walk, you can walk. End of story. At least according to Idaho Medicaid. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Don't get me started on a safety bed not being "medically necessary" for a 3 year old (now 4), who is hooked up to a feeding tube overnight. Apparently pulling out the tube isn't a concern. But that's another story, from a year ago. No, neither Aetna, nor Idaho Medicaid covered that, either.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">After we were already well into this process, Pip became eligible for coverage on the private insurance that's available through Ryan's employer. Therefore, after all of the Medicaid denials, we tried that. And got denied. Our Blue Cross/Blue Shield plan essentially excludes anything that isn't necessary for life sustaining essentials within the home.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Pip with Liam, his doll, who now also has AFOs.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">Essentially, if you can eat, sleep, and poop, you're good. Activities of daily living can be checked off. Quality of life? Disabled children* don't need that, nor do their parents. We can ClickList our groceries, so we're covered.<br /><br />Welcome to America. A land where those of us who are upset about these things, particularly if they're happening to us, are told we're "entitled." While those who move with so much ease they don't even have to think about it, go on hikes, on walks, to the zoo, and anywhere else they take a fancy to. If we follow this think-train far enough, our American prosperity gospel really just boils down to the fact that those who need help, have to earn it. If we can't afford that device that costs thousands? Well, that's too bad. We should have worked harder, prayed harder, <i>been more, </i>found the right alternative practioner to find our "underlying cause<i>." What it boils down to, is that fact that we haven't saved ourselves. But the truth is, there are some things that only God can fix. We're all broken, just some of us are obvious about it than others.</i><br /><br />Yes, I'm angry. I'm tired. I'm trembly from all of the anger and exhaustion. I'm having a hard time seeing God in this. I'm tired of everyone spewing that healthcare isn't a right, it's a privilege, and they shouldn't have to help others with it. These same people then spend the amount of money the wheelchair/adaptive stroller Pip needs costs on an HD television, all while telling themselves that they've earned it. But we haven't earned Pip's freedom. Or his involvement in his community. Which also means community involvement and freedom for the rest of us.<br /><br />In the meantime, I'm sure Idaho Medicaid is very proud of themselves for saving a couple of thousand dollars on a kid who doesn't need it, because he can get to the kitchen, the bathroom, and bed. And the CEO of BCBS can carry on with the multi-million dollar salary he apparently "deserves." All while his company denies wheelchairs to kids with mitochondrial disease. Because that's the American way.<br /><br />I'm told I'm making an impact. On my children. On others. But all I see right now? I'm failing my son. I'm advocating and praying until I'm blue in the face and a puddle of tears, and it isn't working.<br /><br />I still have my faith. I love Jesus. That's actually one of the things that is so angering about this. My faith and my understanding of Jesus tell me that he wouldn't be denying these claims. He's be having mercy on those who need it. And yet, many Christians are blindly supporting a system that perpetuates this, because Christian is equivalent to American. And I. Just. Can't. If I try to express something different, not only does it feel like our personal lives are being shredded in the minds of others, but anything other than the status quo in America? Now you're a communist. A socialist. Don't we know that hard work and faith bring blessing?</span><br />
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<tr><td class="tr-caption" style="text-align: center;">This book, "Everything Happens for a Reason, and Other Lies I've Love," has actually been very encouraging. American Christians have a hard time handling hard thing well, because we, often subconsciously, subscribe to the prosperity gospel.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">We didn't earn it. We didn't have enough faith.<br /><br />And he isn't "disabled enough." Not according to Idaho Medicaid. Not according to Blue Cross/Blue Shield. We fall into a tidy little gap.<br /><br />But we can eat, sleep, and poop. So we're good, right?<br /><br />*<span style="font-size: x-small;">Before anyone goes on a rant about Medicaid recipients just needing to work harder, it's important to realize that Idaho hasn't taken a medicaid expansion. Your income has to either be really low, or you have to be disabled, to be on it. Pip has had private insurance in addition to Medicaid most of his life, so Medicaid actually pays very little--everything runs through our private insurance first.</span><br />**I<span style="font-size: x-small;">t obviously isn't only disabled children, but all disabled individuals. Children are simply what I'm dealing with in my life.</span></span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-41687484457655014542016-11-20T19:30:00.000-08:002016-11-20T19:48:15.899-08:00Holding Space<span style="font-family: "trebuchet ms" , sans-serif;">I've only recently become familiar with the term "holding space." As I've gathered, to hold space for someone is to be with them and support them in a way that allows them to <i>be </i>wherever they are in life, without trying to fix them,judge them, or otherwise interject ourselves into their pain.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Biblically speaking, I think we could say that this would fall under the realm of "mourn with those who mourn" (Romans 12:15). It is relatively easy to rejoice with others, but most of us likely need to work on mourning with others. Coming into another's pain is a difficult thing to do.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2ZEb-gnPtq7CBwnlelBe3kw9j3qv-lFs7Kt7pYzH9WTTy-BbvEbluislHjZa49M2c7ALpZURpYL4OpM3GZvAOZIshp5xVm42Hml1FPeEfT7kAkt3i9dOEjatazOOSzhvw4R_dXygumFxo/s1600/Daddy+and+Pip2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2ZEb-gnPtq7CBwnlelBe3kw9j3qv-lFs7Kt7pYzH9WTTy-BbvEbluislHjZa49M2c7ALpZURpYL4OpM3GZvAOZIshp5xVm42Hml1FPeEfT7kAkt3i9dOEjatazOOSzhvw4R_dXygumFxo/s320/Daddy+and+Pip2.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pip's first day with a feeding tube at 9 months old.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">The past couple of years, this time of year, I'm again struck with an overwhelming feeling of isolation. This year a couple of other things have compounded that. However, overall, we come to about November, and cold and flu season hits. We can have been sailing merrily along through late spring , summer, and early fall making terrific progress with feeding, occupational, and physical therapy, only to have everything come to an utter stop in November.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Starting in November we struggle to simply <i>maintain</i> at our house. Every virus that comes in is a potential battle to keep Pip out of the hospital. It often means weeks without going to church. We see all of that work, particularly with feeding, regress. I start to wonder if I'm being overly optimistic about his future when I envision him without a feeding tube, and if I should resign myself to the reality of him having it forever, which we're told is the most likely possibility.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">And, this time of year, more than any other, we get more "words of wisdom." Because I don't know what it's like from any other vantage point, I don't know those realities. However, I can't help but wonder if things would be any different if we had a diagnosis that was better understood. That wasn't still so heavily in the research phase--if we weren't waiting for a cure, or even a treatment with solid promise of slowing the progress of mito. If people could knowingly say "ah, an extra chromosome. Not your fault." Or "there's nothing you could have done to prevent that cord around the neck." However, in our world, the one I know, outcomes are unsure and the condition is poorly understand by most. We hear "you can't trust the doctors" when we've been told the condition might be degenerative. This is meant to be hopeful, but when you're trying to wrap your mind around this possibility, it feels dismissive. Or "this must be the result of a vaccine injury," especially since we also have two children on the autism spectrum. What do we hear? "Too bad you weren't as smart as we were." </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I've actually heard people tell those with autistic children "we were planning on vaccinating, but then we educated ourselves." I'd like to make one thing very, very clear here. There are more than likely many causes of autism, but regardless of that fact, not one of our children is a "bad result." That may not be how it's intended, but that's certainly the way it sounds. Also, don't assume others haven't done their research or prayed about their decisions, either. It is possible for educated, thinking, Bible believing, Jesus following adults to come to different conclusions, and we must, <i>must </i>be able to walk with one another in love and not assume that another's suffering isn't our own because<i> we knew better. </i></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">We've had the pink drink, essential oils, fermented vegetables, and any number of diets suggested. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAD5Dbjog6etp6L1cH7buq2s8CqfOFsA8CDLkRk7Q8S7KEj5dBcOpTwgG-jRh3kHoGiAbMllmjwNXUF_h-qdG-Vv8c2rDwyFHiMe9OKKhFpkB_YJg2xpEjF5m_kfbULL5mmShs0h5ZZ4e1/s1600/Pip+in+walker2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAD5Dbjog6etp6L1cH7buq2s8CqfOFsA8CDLkRk7Q8S7KEj5dBcOpTwgG-jRh3kHoGiAbMllmjwNXUF_h-qdG-Vv8c2rDwyFHiMe9OKKhFpkB_YJg2xpEjF5m_kfbULL5mmShs0h5ZZ4e1/s320/Pip+in+walker2.jpg" width="176" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pip taking his first steps with the help of AFOs and a walker. Such a happy day, and oh, how far he's come!</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">When you have children with medical complications--particularly ones that are potentially degenerative, believe me, parents are capable of stunning amounts of research. If we haven't actually tried it, we've read extensively enough to know why we haven't. In many of our cases, prayer has been coupled with that reading. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Mitochondrial disease, like many other conditions, is complex. There are no easy answers. And it really boils down to this--only God knows why. So what do we, and so many others walking similar journeys need? We need a friend. Someone who can understand why we're not scheduling a million play dates--or even one or two, though we desperately want to. Someone we can call. Someone to "hold space" for us. Those days when Pip hasn't eaten anything orally...again? Someone I can talk to who won't say "don't be discouraged." Because really? It's discouraging. It is. I know that there's always tomorrow, or next week. But he's almost three, and I want to leave the house with a regular snack and not a medical arsenal, and plan a play date, and <i>be seen. Be known.</i></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I think that's what most of us really want, ultimately. To simply be seen. Through the managing all of the stuff <i>so well</i>, because we have to, because you would to if your child's life depended on it. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I like to think, I truly believe, that if Jesus walked into my home, and any other with children like mine, that, apart from healing these precious ones, he would weep with us, as he did with Mary over Lazarus. He would know this is hard, and not ask us to pretend otherwise. He would see us, and know us. To be known and loved. That, in itself, is a balm to the soul, and a kind of healing that no other offered remedy can come close to touching.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxQfbn8iAqrHcLHjHPr_Pdx0DUHh_zz0ewaW8y317ItOEcZn3yY3oqOdrdDmoHzUYgtIGCP5mFnhrRen40yat5JjOGcI13azb8EFJ-kfbETap3tTwP5_e1Oxbw3_Ro4UJMfAtjrCxS1jS_/s1600/Myers11-wm+%25281+of+1%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxQfbn8iAqrHcLHjHPr_Pdx0DUHh_zz0ewaW8y317ItOEcZn3yY3oqOdrdDmoHzUYgtIGCP5mFnhrRen40yat5JjOGcI13azb8EFJ-kfbETap3tTwP5_e1Oxbw3_Ro4UJMfAtjrCxS1jS_/s320/Myers11-wm+%25281+of+1%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was over a year ago now, and no, we don't always look this put together.</td></tr>
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</span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com3tag:blogger.com,1999:blog-8934609979910464380.post-18359437310139469412016-04-29T15:36:00.001-07:002016-04-29T15:36:52.404-07:00Hospital Ups and Downs<span style="font-family: Trebuchet MS, sans-serif;">Over spring break Pip went down with strep throat. Because of his probable mitochondrial disease he had extreme feeding intolerance and became dehydrated, hypoglycemic, and had wacky electrolytes. He earned himself three full days in the hospital.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">That episode really threw us for a loop. After all, this was<i> strep throat</i>. It's miserable, but it's a common childhood illness that's very treatable. I asked both the doctor and nurses how often they get kids in the hospital with it. I kept hearing "almost never." When Pip is healthy we can almost forget he has anything going on. <i>Almost</i>. The feeding tube and leg braces make it a bit hard, but you get the idea. He does really well. This brought all sorts of fears racing through my Mommy mind. Most of all, it made the fact that there is, in fact, something going on with his little body very real.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">A few weeks after that we loaded up the car and trekked to Seattle to see Pip's mito specialist and have a repeat MRI and muscle biopsy done. I asked if what we experienced with strep throat is something that may simply be an issue for Pip with "typical" childhood illnesses, and he said that yes, it might be. Not what we wanted to hear, but something we need to be prepared for. </span></div>
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<tr><td class="tr-caption" style="text-align: center;">We had a day to spend at the Pacific Science Center before our appointments and tests, which was so much fun!</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">We had a full day of appointments and learned that Seattle Children's has an anesthesiologist who specializes in mitochondrial diseases. Pip's been under a few times, and he's never woken up so well.</span></div>
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<tr><td class="tr-caption" style="text-align: center;">Resting between appointments</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Riding around between appointments at Seattle Childrens</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Waiting to be called back for his MRI and muscle biopsy</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">In good news, Pip's MRI appears to be normal this time around! If you'll recall, last year his brain MRI showed white matter damage of unkown molecular origin. Basically, they were checking to see whether what was going on was degenerative. But his brain actually myelinated! We're so, so thankful! Apparently this can happen with mitochondrial diseases. His MRS also showed a tiny lactate spike. We're still waiting to hear what, exactly, that means. We have to wait another few weeks to hear about the muscle biopsy.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So, much uncertainty yet, but also much to be thankful for.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-68945053735849076282016-03-11T09:57:00.000-08:002016-03-11T15:51:09.120-08:00When the Waves Keep Coming<span style="font-family: "trebuchet ms" , sans-serif;">The waves keep rolling over me in crashing torrents. I shake, I cry, I feel panic wash through me in ways that are new and frightening. This life, this unexpected life that we've been given has given us opportunities to trust God in ways we never imagined--because we've hit places in which only God can reach us like never before, too.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Last week I was out with the boys, and we had an event that proved to be my emotional undoing. We were, once again, at the local thrift store to search out free books between school and therapy. The boys rushed to the toy and book section. This is also always feeding time for Pip. After assuring him that he would get to look at books, too, in just a minute, I lifted his shirt to connect his tube to his pump. However, upon lifting his shirt, what I saw instead of his button, was simply a puckered hole in his abdomen where his button should have been. Feelings of panic filled me so quickly that instinct took over.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">These two pictures show what I should have seen upon lifting Pip's shirt--both without (above), and with (below) the dressing.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio3OhY0ON7o3aTYk7Rr5SBcPGYPNmbtlXwCunTmn6NxY5DTNYeb3ZG7YWSeF2l3N3guvPPXzxxNjDzvxuGpj3YmuBgVF-zJep8SxAWeXCiowN9Td8fivHDjoiZuy1nWOysV_8wq-q4opM1/s1600/Pipster.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio3OhY0ON7o3aTYk7Rr5SBcPGYPNmbtlXwCunTmn6NxY5DTNYeb3ZG7YWSeF2l3N3guvPPXzxxNjDzvxuGpj3YmuBgVF-zJep8SxAWeXCiowN9Td8fivHDjoiZuy1nWOysV_8wq-q4opM1/s400/Pipster.jpg" width="220" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">You see, it typically takes less than an hour for a G tube stoma to close enough to require going back into surgery to replace it. We've had the tube fall out once before. That time, when it was noticed we happened to be at the hospital. It took the GI many, many minutes of sweat and uncertainty to get his tube back in. Pip screamed and screamed in pain while I held his writhing little body down and cried and whispered what comfort I could in his ear. When the tube finally went back in the doctor let out a huge sigh and said "wow. That was close." It isn't something you forget.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">So, when I lifted Pip's shirt, and rather than seeing his button, I saw this, I panicked.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">It had been two hours since I'd last fed him, and I had no idea when in those last two hours it had come out. For all I knew, it was already too late. So there, in the middle of the thrift store, I said "Oh God, no. Boys! We have to go to the hospital. Now!"</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">And even though they were in front of a display of toys and books they're allowed to play with, the boys moved--fast.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Once we got to the car I realized that I had two emergency kits--one in the diaper bag and one in the car. I emptied both, saying "please, God, help!" all the while. During this time one of the boys asked me why I was saying that. I said something to the effect of "this is what praying sounds like when you really, really need God to help you!"</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">I found the Foley catheter, the one that the doctor tells you he hopes you'll never need, some lubricant, tore both open, lubed it up, kept crying (literally) to God, and it went in! His stoma was open!</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">At that point what was in his stomach started pouring out the foley catheter all over the seat of the van and my clothes. I found a diaper that was in the emergency kit and wrapped it around the end of the catheter to at least soak up the flow. Then I picked up my phone, called Ryan at work, and cried. He said he would leave work and meet me at home. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdnS7ugWh0eEPpjSWc7sj_V0_1PikSuJxoMtPZ5TBEhnCUI_9QBOq6KMX4qI219SUfsWkY79X4pNG0-v4pMMMYEGUp5esN2d2WiFV7XKzEJ6f4rTHklwwdi0KkA5IVxWbn9y753rC-xqQi/s1600/Pip%2527s+tube+replacement+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdnS7ugWh0eEPpjSWc7sj_V0_1PikSuJxoMtPZ5TBEhnCUI_9QBOq6KMX4qI219SUfsWkY79X4pNG0-v4pMMMYEGUp5esN2d2WiFV7XKzEJ6f4rTHklwwdi0KkA5IVxWbn9y753rC-xqQi/s320/Pip%2527s+tube+replacement+1.jpg" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgot7cKdOKWtQ5CQ3yreehluijXtCe5D608tlTFF_30FUTSwb9O_YXcTbqW9bYCzOfP09enYEdqF3qm52lhAQ45yBkKIF_tNhj3jd5Z5b9GRdWaeDmuYlRlGuMyZfI7B8Xs0wuSnRSmOYZA/s1600/tube+replacement+3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgot7cKdOKWtQ5CQ3yreehluijXtCe5D608tlTFF_30FUTSwb9O_YXcTbqW9bYCzOfP09enYEdqF3qm52lhAQ45yBkKIF_tNhj3jd5Z5b9GRdWaeDmuYlRlGuMyZfI7B8Xs0wuSnRSmOYZA/s320/tube+replacement+3.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The aftermath of having replaced Pip's tube on the living room floor.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">Once home I was able to replace his button with a new one, and physically, all was well.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Emotionally, however, is a whole different story, and one I'm still sorting out. Things have been stacking up for awhile. I've been trying to get developmental disability services set up for both Abel and Pip. This is the sort of process that makes you realize that getting support services is more theory than reality in many, many ways. The red tape, bureaucracy, classes to be taken, and stacks and stacks of paperwork to complete are unreal. And I broke after this incident. I became a jittery, crying, shaking, illogical mess.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">What is hardest for me to process is the fact that my faith is not gone. It is very much here, and it is real. God is here, and HE is real. However, I always imagined, reading others' stories, that knowing His presence would feel somehow--I don't know, empowering, maybe? But I am broken. I'm so far beyond a place in which I can handle this. The same week in which this happened, Mercy was home from school one day with her Cyclic Vomiting Syndrome, and in our bed all night with it another. And Abel is clever and witty and hilarious, but autism is also exhausting. And these things don't rest. Mercy can't just stop feeling like throwing up, and Abel can't control his neurological function any more than Pip can make his white matter regenerate.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">We live in a fallen world. And I am fallen, and falling.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">There's beauty in the fact that our children get to see moments in which we are literally, <i>literally</i>, crying out to God, and then they see him answer. That is not lost on us. But just because beauty rises from ashes doesn't mean that the ashes aren't there with the accompanying burns and scars, or that when the waves come we don't inhale some water, enough water to cause some damage, before the storm subsides and the sunset paints glorious color on the horizon.</span></div>
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Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com2tag:blogger.com,1999:blog-8934609979910464380.post-21317836798008898222016-02-24T15:58:00.000-08:002016-02-24T16:13:58.418-08:00This Special Needs Mom's Daily Schedule<span style="font-family: "trebuchet ms" , sans-serif;">I've toyed with the idea of sharing what a day looks like at our house, and decided to just go for it. This was Monday, and while this particular Monday had an extra appointment thrown in at the end, that isn't atypical. There are the regular, recurring appointments, and then the frequent specialist visits we deal with.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">5:30am: Ryan wakes up. On Monday mornings he works from home from in the mornings because Pip goes to a therapeutic preschool program, where he gets PT, OT, and Speech/Feeding in a three hour drop off program.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">6:30am: I wake up, forego a shower, and prep everything for the day as quickly as I can. This means packing lunches for 3 kids, making sure we have water, formula, diapers, extra tube supplies in case of an emergency, etc. ready for the day. I also pack Pip's little backpack, which he takes with him, with a bottle, applesauce, and extra outfit, water, and anything else they want with him that week. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">7:30am: The kids all wake up. Mercy (7) dresses herself, Gilead (6) needs several reminders, but gets it done in the end. Abel (4), who is on the spectrum, needs maximal direction and still can't fasten pants or get his compression shirt on himself. Once Pip is up we disconnect him from his feeding pump and tubes, change him, change the dressing at his tube site, and administer his meds. Now that he's awake and I have access to his pump I prep it for his morning therapists. This involves opening a new feeding back, loading it into his little backpack, priming formula through his pump, and making sure all of the settings are correct. The process takes about 10 minutes. In the meantime, Ryan puts Pip's car seat in his commuter car.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">8:00am: I leave to take Pip to his therapeutic preschool program. Ryan is left to feed the other three, comb their hair, etc. and get them to school by 9:15. This is not as easy as it sounds when you have a child on the spectrum who requires full guidance to get these things done.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">9:15am: Ryan and I meet in the school parking lot to switch cars. I go home for an hour and a half and madly do as many dishes and as much laundry as I can in an hour and a half.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNPJ4bz3egcxbPUMCIupT34_2UNj2oVw06RPMZiKc7fgTTFTktZQOv5kHfHlyWt79xFgcA6YobWrJyu_DTylWtWqwBQBm8VAcg4jbNhPbWvRdMxs8QojpPn7w6jIXPrIi-LDkXcdKSqikd/s1600/Pip+in+Special+Tomato+Chair.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNPJ4bz3egcxbPUMCIupT34_2UNj2oVw06RPMZiKc7fgTTFTktZQOv5kHfHlyWt79xFgcA6YobWrJyu_DTylWtWqwBQBm8VAcg4jbNhPbWvRdMxs8QojpPn7w6jIXPrIi-LDkXcdKSqikd/s320/Pip+in+Special+Tomato+Chair.jpg" width="176" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pip plays at the table during a feeding while I do dishes on a morning he doesn't have therapeutic preschool.</td></tr>
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<span style="font-family: "trebuchet ms" , sans-serif;">11:20am: I pick Pip up from therapy/preschool and get updates from his speech/feeding, occupational, and physical therapists. Then we head to Abel's preschool to pick him up at 12:00pm. Next we get Gilead at 12:15pm. The boys eat a packed lunch in the car on the way to therapy.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">1:00pm: Gilead and Abel have therapies until 2:30pm.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">3:30pm: Mercy has a GI appointment to keep up on her trouble with neurogenic dysmotility, which we're told is likely a result of a mitochondrial disease. I mention that she's also had several bouts of the "stomach flu" recently that have increased in intensity, but nobody else has caught. An hour later we leave with a diagnosis of Cyclic Vomiting Syndrome and three new prescriptions.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">5:30pm: We get home. I haven't been on top of things enough to have a month's worth of freezer meals or whatever stashed away in a long time, so I frantically try to think of what to feed my starving family. I start in on a from-scratch stir fry. It's both economically difficult and nutritionally difficult to eat pre-fab meals when you have food allergies in the house. In the midst of preparing dinner Pip is due for a feed, so he needs a bottle, and then it needs to be poured into his pump and he needs to be set up with that.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">6:30pm: Ryan works on getting the kids ready for bed. I work on yet more paperwork until I start reading to them at 8pm. Most of the time Ryan does the reading while I switch to laundry or dishes and have a bit of "alone time." By now, since it's the end of the day and everybody's tired, we're usually into meltdown time, too. Those of you with children on the spectrum know that the meltdowns we're talking about aren't typical preschool meltdowns. By the time the kids are in bed, we're sucked dry.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">8:30pm: The kids are in bed. I do more paperwork. Ryan works on dishes. At 9pm we call it quits so that we can actually see one another a little bit before we go to bed. Tomorrow we'll wake up and have a very similar day. And we'll start it with dishes in the sink, laundry on the couch, and stuff on the table, because we quit at 9pm the night before, if all goes smoothly. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">This week our Saturday morning will consist of taking Mercy in to have fasting labs drawn to check for metabolic problems. Seattle wants them before seeing her, and GI here wants them before starting her on preventative meds for cyclic vomiting syndrome.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The first week of every month we get our medical supply shipment. Roughly a dozen boxes filled with formula, syringes, feeding bags, venting bags, extensions, etc. It takes approximately 3 hours to properly put it all away. Sometimes 4 by the time we break down the boxes.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">This week alone we will have had GI, PT, OT, Speech, Feeding, and Developmental Disability appointments. Plus lots of phone calls. I often get phone calls during other phone calls. And I have three stacks of paperwork pending.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I lived life before special needs, and it was different. Even when we were "busy," the pace was much, much slower. As the parent of children with developmental and medical needs, there's a constant tension between meeting their needs and maximizing their potential and not going completely crazy. I don't think I'm there yet...</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-57552372091398480882016-02-24T12:40:00.002-08:002016-02-24T12:40:43.979-08:00On Looking Good<span style="font-family: Trebuchet MS, sans-serif;">I sit down with yet another stack of paperwork, and a tear slips down my cheek. I've already been to three appointments with my children today, one of which brought yet another diagnosis, and I just don't feel like I can do it anymore.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But we don't look like we're falling apart. In fact, I hear at every turn that we look so good. And I am thankful. I shudder to think how overwhelming this would all be if Pip weren't at a baseline. However, I'm apparently good at unintentionally looking more together than I actually am, which makes answering questions like "how are you?" feel like a huge dilemma.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When I'm asked how I am, there are two options before me. I can go with "fine," like the majority of good Americans, and people can take from that what they will, or I can answer honestly with "tired," "overwhelmed," "scared," or whatever is most appropriate at the time. Then I get to watch the listener wrestle with the obvious contradiction between how I look and what I just said. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Life as a special needs mom is a unique kind of exhausting. I read once that it isn't as easy as we make it look, and that sounds so....conceited. However, I really believe it's true. There's a lot that happens behind the scenes that nobody sees. And quite frankly, when we aren't looking "good," we're so far beyond good we aren't out--unless we're at the hospital or some such.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We've adapted to tired, and overwhelmed, and just plain so exhausted we can't see past our tears. I try to remember that all of the best intentions are being laid forth when I'm told I look "good." That it doesn't invalidate anything that I'm feeling. But I wonder if I'm this exhausted and feel like I'm accomplishing nothing, when will I ever do anything that matters? I see other special needs moms being support brokers for other special needs families. They're working a job. Or getting another degree. Or volunteering for church ministries.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm not doing any of that. I'm surviving. On minute, one hour, one day at a time. From where I sit, this doesn't feel good. It feels like failure.</span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-44116544260261242852015-11-25T14:15:00.002-08:002015-11-25T14:21:17.249-08:00A Long Diagnostic Road<span style="font-family: "trebuchet ms" , sans-serif;">As many families of children with complex medical issues can tell you, the road to diagnosis and treatment is often long and exhausting. It's looking like ours will be no different.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">We just returned from our second trip to see a neurologist who specializes in mitochondrial disorders at Seattle Children's Hospital. The first trip the appointment was for Pip, and I flew with him. This appointment was for Gilead, since he constantly complains of muscle pain and fatigue and disautonomic issues. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">This time we went as a family, which was quite the adventure. Lots and lots of car time over four days with four young children. The doctor is highly suspicious that Gilead and Pip both have a nuclear form of mitochondrial disease, meaning that they inherited a faulty gene from both Ryan and I. Apparently there's a one in four chance of your children getting it if both parents carry a faulty gene. However, given Abel's autism and Mercy's neurogenic dysmotility, motor delays, and motor ticks, we may have "won the jackpot" and have passed the genes on to all four of them.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Because Pip is the most involved, given his severe GI issues, his motor delays, the *leukoencephalopathy on his brain, and other quirks, the next step is to repeat the MRI of his brain and perform a muscle biopsy on him. A repeat MRI will show us whether the leukoencephalopathy is progressing, and a muscle biopsy will hopefully show us whether there are damaged mitochondria and help identify DNA. There are three drugs in the pipeline for mitochondrial diseases, but they're targeting them to specific DNA, which is why it's important to try to nail those down.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The MRI and muscle biopsy will be done in Seattle, which means another tip. A longer one. We'll meet with the anesthesia and surgery team on one day, and then he'll have the MRI and surgery the next. Then we need to remain in the area for at least one day following the biopsy just to be sure there aren't any complications. Mito kids are more prone to those. I'm not sure how we're going to manage this. Taking all of the kids would be hard, but I want Ryan with me. However, childcare may be downright impossible if he did come. We're just breathing and trying to trust God one day at a time.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Some of you may recall that since someone hit me on the interstate last year I've had a phobia of interstates since. After successfully completing the trip to Seattle I was finally relaxing. Then, about halfway home, we were hit on the interstate. Again. You can't make this stuff up. It was incredibly ironic. We were passing a vehicle that had spun into the median (a big, grassy one), and police were already there. Traffic was slowing. A lot. Then the car in front of us suddenly pulled over. We managed to stop on time, but the guy behind us didn't, and rear ended us. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">As it turns out, the car in front of us that pulled over was the news crew, pulling over to get footage of the accident--and in doing so caused another one. Thankfully, we'd slowed enough everyone was okay. We now need to replace all of our children's carseats and go through the hassle of a claim, but we're thankful God had his hand on us.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">So, now we need to figure out when will be best to return to Seattle for more extensive testing, and this mommy needs to rest in God and not panic about logistics and potentials. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">*<i>Leukencephalopathy </i>means that Pip has white matter damage to his brain, that appears to be a leukodystrophy-like disease of an unknown molecular origin.</span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com1tag:blogger.com,1999:blog-8934609979910464380.post-29510339833959676502015-11-25T09:24:00.000-08:002015-11-25T09:24:11.978-08:00Leaving the CREC, Part 3<span style="font-family: Trebuchet MS, sans-serif;">We said we'd explore why we thought the CREC had so many issues with abuse. However, we've come to realize that we just aren't qualified to really, fully analyze that. We do believe we have some pretty solid ideas, but we also aren't prepared for the kind of backlash that posting those could potentially bring. Especially in light of the fact that there are many, many people in the CREC who we truly love.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Therefore, at this point, we are happy to be listening ears for those who need someone to talk to regarding their CREC experiences. We know the pain is real. We've experienced it. We're also thankful to be in a place of hope and healing now. We're thankful that God has delivered us into a church community that is full of grace and compassion and gospel love. We'd love nothing more than the ability to extend that love to others who need it.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So here we stand. We've been broken by our experiences, and forever changed. We aren't fully healed yet. Some things send me into almost PTSD type states. However, slowly but surely we are being shown that Christ's love doesn't look the way we thought it did. It is glorious, and we are made new in that revelation.</span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-59799589634070506142015-09-19T21:44:00.000-07:002015-09-19T21:44:34.423-07:00Leaving the CREC Part 2--The Job<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">Several years elapsed between that engagement and the series
of events that transpired and opened our eyes to what was actually going on in
the CREC. We had now been married just
over four years and had been through a period of extended unemployment. Our third child was also born, and spent most
of the first two weeks of his life in a NICU unit. During that NICU stay, Ryan was offered a job
at a small accounting firm on the other side of the state in which one of the
partners was a deacon at the local CREC church.
One of the senior level staff members attended there as well. To even further tie us in, I had known the
pastor my entire life—literally since birth.
He was also the pastor who had married us. Therefore, there was no question of where we
would be attending church. We were
already part of the CREC, and we held great love and respect for the leader of
this church in particular.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">Everything started well at the new job. At the end of the first three months, Ryan
was even given a raise. However, right
after that, the partner from the church left the firm and the other church
member took his place as partner. And that’s when things went south. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">It was only a couple months after Ryan had started the
position that the new partner – a prominent member of the church – came into
Ryan’s windowless basement office and asked him a question. The firm had a very
wealthy tax client in Spokane, and the partner needed a staff accountant to
accompany her on a week-long trip to prepare this client’s taxes. Did Ryan want
to go, or did he want the partner to ask one of the other staff accountants? Having
just moved, and since I was freshly off a c-section, Ryan said that he would go
if needed, but if it made no difference, he would rather one of the other staff
accounts go because they had no families. This was the wrong answer. We later
learned the question was a test of Ryan’s loyalty to firm, of his willingness
to place work above family, and he had failed. It was the beginning of the end.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">Soon after, as tax season went into full swing, Ryan began
to run into ethical dilemmas while doing tax returns. He notices that tax
breaks were being given to individuals who hadn’t really earned them. He had to
work on projects that gave valuable tax incentivess to people who didn’t
qualify for them. And then, Ryan
discovered the quirk in the internal messaging system. The messaging system was
a primitive instant messaging system that the partners used to communicate with
the staff accounts and each other when they were too busy to leave their
offices. And all messages were archived. And that archive was accessible to
everyone in case someone needed to reference old message while working on a
project. And while searching this archive for a project, Ryan stumbled across
something shocking: even though these messages were archived where everyone
could see them, the partners used this system to talk about the performance of
their staff. He learned that other staff accountants were about to be fired,
and that Ryan himself was close to the chopping block. But most disturbing of
all, she complained about me wanting Ryan home more during tax season.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">Since this partner was a member of the church in good
standing, Ryan felt it was time to go to the pastor. He explained his ethical
dilemmas, as well as the poor treatment of fellow employees he witnessed on a
daily basis. The pastor listened, and talked to the previous partner, who was
still a deacon in the church. But the deacon believed the ethical issues were “gray
areas.” And the problems of backroom gossip and poor treatment of employees were
simply not addressed.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">A few months later, in the middle of October, Ryan received
another visit from the new partner. This time, she told him he would be let go
at the end of the year, and that he needed to start looking for work elsewhere.
This deal changed several times, ranging from one week, to “as much time as you
need” and back again. The stress was unbearable, and one Sunday morning I
cracked. The wife of the deacon who used to be a partner asked me how I was
doing, and I lost it. It was a mix
between sobbing and yelling about how apparently cheating on taxes was a “gray”
area, that lying about Ryan’s work ethic was just fine, and the pastor, who I
thought cared, obviously didn’t.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">Soon we, the partner, and her husband were called into a
meeting with the pastor and the other two elders of the church. I was so shaken up I was using my inhaler
repeatedly. The meeting mostly consisted
of the pastor wanting everyone to exchange apologies and call it good. Ryan repeated that he was thankful for the
job multiple times. However, it was
mentioned several times that I was unsupportive of Ryan’s career, which floored
me. Ryan’s boss’s response was “well,
this comes from your facebook page, Amber ‘well <i>this</i>
sucks.’” When I denied having said any
such thing the pastor wouldn’t hear me out, and Ryan’s boss insisted that I
had. I was asked to apologize, which I did, and that
ended it. I was rather in shock over it.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">When we got home I combed through my facebook page for at
least two hours, looking for that incriminating post. This must have been it, because it was the closest
thing there was—“<span style="background: white; color: #141823; line-height: 115%;">Nearly 50 degrees today! I got to
enjoy a long walk with my husband. During tax season, an unexpected day off
feels like a vacation. We can't get over how wonderful it is to rest and enjoy
one another's company!</span>”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background: white; color: #141823; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">Ryan continued meeting regularly with
the pastor over the last few weeks of his employment with the firm. He continued
to bring up ethical issues and the malicious gossip continuing to be archived
in the company’s message system. And several of those messages continued to be
about me. When Ryan told the pastor about this, the pastor told Ryan to stop
talking to me about work. There was another member of the church who had had
similar experiences working for the firm, and she valiantly came to our
defense, but she too was told to stop talking, to “stop encouraging them
(meaning us) in their sin.”<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="background: white; color: #141823; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">Thanksgiving came and went, and we tried
one more time to talk to the pastor. He came to our house, and we pleaded with
him to tell us why we were being thrown under the bus, why the new partner was
being so ardently defended, and the answer we received from him was this: “I
don’t have to explain my ministry to you.”<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="background: white; color: #141823; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="background: white;"><span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #141823;"><span style="line-height: 115%;">That was the end. We started
attending another local church, only to find out that the CREC pastor had
contacted the pastor of this new church out of “professional </span><span style="line-height: 18.4px;">courtesy</span><span style="line-height: 115%;">” to explain our situation. We had nowhere left to go. And it was at that point that Ryan drafted the
following letter which we sent to the elders of our former church (names have
been removed):</span></span><span style="color: #141823; font-size: 10.5pt; line-height: 115%;"><o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span style="background: white;"><span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #141823;"><span style="line-height: 115%;"><br /></span></span></span></span></div>
<div class="MsoNormal">
<span style="background: white; color: #141823; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">Dear Elders of [the church],</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">We want you to know,
first and foremost, that the decisions we've made and actions we've taken over
the past few months have not been knee-jerk reactions. We have been working
slowly and carefully through many issues regarding my former employment with
[the firm] and our membership with [the church]. Alas, the two became
inextricably tied.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">The chief problem, as I
see it, is that you and I have different ideas as to the nature of the crux of
the matter.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">Per my many
conversations with [the pastor], here is what I think you believe to be the
central problem. As you stated in your letter to us dated February 10, 2013,
"the forgiveness extended from both parties was intended to lay a
foundation for dealing with future issues." Therefore, since there has
been no progress toward restoration, the forgiveness on our part must not have
been genuine, or if it was at the time, it is no longer present. We have become
bitter, in your view, and have refused to make amends, either with the [new
partner] or with you, until there is some kind of justice dispensed, namely
[the new partner] being required by the church to either secure my position
with the firm or face a disciplinary action.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">Here is what we believe
to be the crux of the matter: Since the elders do not wish to acknowledge the
long and ongoing mistreatment of employees at [the firm], particularly by [the
new partner], and since they do not believe such treatment has been ongoing
since our mid October meeting with the [the new partner] despite the evidence I
have tried time and again to present, continuing to attend [the church] would
be to unnecessarily subject ourselves to abuse. To put it simply, the elders
believe no wrongdoing is taking place, and we are tired of being slapped in the
face by the elders and by [the new partner]. We have turned the other cheek to
no end, and we will continue to do so, but if staying away from [the church]
will take us out of striking range, who can blame us?</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">However, as much grief as
we have received from [the new partner], we have received more from [the pastor].
As he put it during one of the last times I spoke with him face-to-face,
"I believe that you believe these things are happening." It was then
I knew that nothing I could ever say in the matter would make a difference. I
was, in his eyes, a "bitter" soul, and a man who is bitter is to be
pitied, but not trusted.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">"Bitterness"
is a broad and powerful term. When someone is labeled as "bitter,"
every word spoken and action performed by that person is scrutinized and
doubted. No real evidence is required to condemn a "bitter" person
because no matter how much truth may fall from his lips, all that need be said
is, "I wouldn't listen to him; he's a very bitter person." It is a
stigma that is almost impossible to shake once applied, and it becomes a
powerful weapon in the hands of those who have dealings with the person in
question. It became such a weapon in the hands of [the new partner], a weapon
handed to her in an email from [the pastor].</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">Throughout our dealings
with [the pastor] regarding our current troubles, he always refrained from
discussing his work or communications with [the new partner]. [The pastor] has
always believed that we must deal with our own sins and leave [the new partner]
to him. In general, that is a wise course of action. However, the reverse has
not held true. While [the pastor] refused to discuss [the new partner’s]
character with me, he did not offer me the same courtesy. Not only did [the
pastor] describe me as "bitter" in an email to [the new partner], but
he also discussed our reasons for leaving the church, the nature of his
meetings with me, and which church we were currently attending.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">Because the elders of
the church refused to believe [the new partner] had done anything wrong, they
failed to recognize the danger of giving her such personal information about
myself and my family. I had warned [the pastor] many times of the malicious
gossip spread throughout the firm by [the new partner], and it was no surprise
to find information about our status with the church in the hands of others in
the firm. I have attached a publicly archived memo from [the new partner to
[another partner] in which she discusses an email from [the pastor] regarding
our separation from [the church]. The message was filled with several
exaggerations, false assumptions, and untruths, as is usually the case, and I
won't bother to enumerate them.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">Not long after our meeting
with the [new partner] and the elders in mid October, [the new partner] resumed
her malicious conversations with [another partner], all the while presenting a
smiling face to me. Toward the end of my employment with the firm I was told I
was being let go because the firm had over-hired, and I was given a positive
letter of recommendation, yet her messages to [the other partner] told another
story entirely. In fact, when the Employment Department called [the new partner]
in particular to verify my status, she told them I had been fired (as opposed
to being laid off), but could give no reasons as to why. Fortunately, the
Employment Department determined I had been discharged without cause, and I am
now receiving unemployment payments.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">All of this to say that
[the new partner] has been saying one thing and doing another since our
troubles began. Most grievous has been her treatment of Amber. In our meeting
with the [new partner] in mid October, [she] vehemently denied badmouthing
Amber behind her back, and yet, in the attached memo you'll find yet another
example of [the new partner] spreading gossip about my wife that is completely
untrue. This is by far the worst thing [the new partner] has done to us, far
worse than taking away my job. But the greatest wound we have received in this
regard came not from [the new parter], but from the elders, when they assumed
[the new partner’s] words were true despite the evidence speaking to the contrary,
despite [the new partner’s] reputation in the community, and despite the
lifelong relationship [the pastor] has had with Amber.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">With the elders
considering us guilty of bitterness, with the congregation knowing only of
Amber's "outburst" and not the reasons behind it, and with [the new
partner] keeping close track of our church attendance for her own ends, the
Sabbath ceased to be a day of rest for us.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">Those are the reasons we
have left the church. Even the [other] church is no longer a haven for us as
[the CREC pastor] has been in regular contact with [the new pastor]. Since the
elders refuse to recognize [the new partner’s] duplicity, and because of the
powerful stigma of bitterness that has been attached to us, we have no more
desire to pursue the matter. We wish simply to be left alone. As for what to
tell the members of [the CREC church], I don't believe it matters. So long as
the elders refuse to hold [the new partner] accountable for her actions,
thereby restoring our good names, it is impossible for anyone to know or accept
the truth. So long as the elders' impressions of us continue to be based upon
assumptions and not upon facts (we have never before "left" a church
as [the CREC pastor] believed, and I had no "part-time accounting
work" as of the writing of your letter), reconciliation simply is not
possible, however much we wish for it.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">We do not sit in our
house stewing in our own bitterness. In fact, we don't think much about these
issues anymore unless pressed to do so. We search for work, we enjoy our
children, and we live our lives. You probably won't believe it, but we truly
did forgive [the new partner] that night in October, and we still do.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">We forgive you as well.</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Georgia, Times New Roman, serif;"><span style="font-size: 12pt;">In Christ,</span><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: 12pt;"><span style="font-family: Georgia, Times New Roman, serif;">Ryan Myers, on behalf of
the Myers family</span></span><span style="font-family: Arial, Helvetica, sans-serif; font-size: 12pt;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: 12pt;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">We never received a response to the above letter. Two months
later, we were in Boise, with Ryan starting a new job, a job that invalidated
everything that the partners of the firm thought of him, a place where his abilities
and work ethic quickly elevated him to management. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">Prior to our experiences, we had always heard
stirrings. Stories of people who had been
somehow abused by church members, church leadership, or both. However, the stories were always tidily
explained away, and the term “bitter” was generally attached to the victim in
the story. They weren’t willing to
forgive. Weren’t submissive to church
leadership. Weren’t willing to
reconcile. It wasn’t until we were on
the receiving end of those accusations that we realized that we needed to
revisit what we knew about those other cases.
That the church we had committed ourselves to for the past several years
was throwing people to the wolves. And
that we needed to rethink the theological tenets we thought we firmly believed
that had gotten us to this place.</span></div>
<br />
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">We’ll try to explore those tenets some more in part three.</span><o:p></o:p></div>
Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com3tag:blogger.com,1999:blog-8934609979910464380.post-19026269713635209882015-09-14T21:21:00.000-07:002015-09-14T21:21:02.871-07:00Why We Left the CREC, Part 1--The Engagement<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">I’m sure a question that begs to be asked at the outset
of this is “why now?” The answer is,
quite simply, because, in the wake of the public conversation regarding Douglas
Wilson and the handling of the sexual abuse cases, people are listening. We’ve been thinking and praying for a long
time about when would be the right time to share our story. We want to do it in a way that conveys our
sorrow over the events that transpired, our love for family and friends who are
still in the CREC, and yet still communicates that we are convicted that what
happened was not handled appropriately.
It, in fact, allowed, and continues to allow, abuse in many forms to
take place not just at Christ Church, but in other CREC churches as well.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">We’re also cognizant of the fact that we will be
accused, once again, of bitterness. We’ve
learned that disagreement with the church leadership in the CREC automatically
brands one as being bitter. Once labeled
as such, any testimony one brings forth can easily be discounted. Please know that our intention is to shed
light on things that we find to be disturbing.
Things that hurt the church and its members. Our concern is that these actions are pushing
people, believing Christians, no less, away from Jesus and the community that
should be acting as his body—that is proclaiming itself to be His body.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">My first experience begins before Ryan. Before my family as many of you know it. At that time, my sister, who is younger than
I am by not quite 17 months, was engaged.
I was a month shy of 22, and rapidly becoming an old maid by CREC
standards. In fact, I’d even been told
by one man that I was “too old and too well educated” and that made me
undesirable. And it seemed true. No one
was expressing any interest in me. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">Mom and I were at a wedding. Once again, the bride was younger than I
was. A rather eccentric man at the CREC
church we were attending introduced me to a man from a CREC church the next
state over. He was 16 years my
senior. My initial reaction was “no
way.” However, the next day, a Sunday,
he sat with us at the regular meal after church and asked for my email
address. I gave him my “secondary” email
address. We commenced writing. Then calling on occasion. The next month he came to visit for my
birthday and a courtship commenced.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">I grew to care for him deeply. Even love him. But I was still a bit uneasy and unsure. However, every Sunday a man from church
(various ones) would comment on what a great guy he was, and how excited they
were, and I would think “I’ll give it awhile longer.” Come February, he proposed. In my naievety, I thought,” If he wants to
marry me, he must truly love me!” And therein
lay my error. Despite misgivings, I said yes, and the wedding planning commenced. We set a date for mid-summer.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">Once we were engaged, he owned me. On one occasion, one of his family members
asked me what I wanted to change after we got married, and I said “I’d like to buy
two-ply toilet paper.” I knew it was a
dangerous question. One I didn’t really
want to answer, and that seemed like a safe answer. It was also honest. He was furious. I’d disrespected and undermined him. Talk about keeping me fit and trim—especially
after children, was constant. Then came
the tickling. He’d tickle me until I was
bruised. I’d ask him to stop, but it was
like he didn’t hear me. Until I was
yelling at him to stop. Then he’d get
angry and sulk, because, once again, I was being disrespectful. I’d also had surgery for some health
problems, and was on some “maintenance” medications. Several times he asked me how they would
affect my sexual performance. I had no
idea! Not only was I mortified, but I
was becoming concerned by the fact that my appearance and “performance” seemed
to outweigh my health in importance in his mind. By now I was scared. Genuinely scared and I had no idea what to do
about it.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">And then there were the photos. Once I’d gone to visit him, and stayed in his
mother’s apartment since she was out of town for the weekend. He had a key, as did I. When I woke up the next morning, my phone
wasn’t exactly where I thought I’d left it, but it was still connected to the
charger, so I thought I must not have remembered correctly. The weekend seemed to go as they typically
went, and I thought nothing of it. Then,
a few weeks later, I was at a friend’s house, and she was going through the
photos on my cell phone for fun. This
was a decade ago, when we all used flip phones and they weren’t generally used
for photography. There weren’t
many. She came across pictures of me,
fast asleep, in his mother’s apartment that weekend. He was the only other person with a key.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">Some hubbub ensued, but in the end, it was determined
that it was outside his character to do such a thing, and the matter was
dropped. Mom and I never felt easy about
it, but we felt we really had no recourse, and what could we really do, anyway?
Again, we were admonished to trust him.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">There was one particular instance in which some things
had happened. Like the tickling, my mom and
I weren’t heard until it escalated. We
apologized for the response that he deemed offensive, and I was genuinely
sorry. However, during what was to be
our last premarital counseling session, the elder who was counseling us did
press the fact that my fiancé at the time should also issue an apology for the
behavior, including the tickling, that led up to our response. We sat there for a solid hour. He finally said that he didn’t see how it
would make a difference. Awhile later,
he grudgingly gave an “I’m sorry.” But I
left that session and went to bed for the rest of the day. I kept going over and over in my head
everything that was transpiring. How was
I supposed to trust and submit to a man I felt genuine threatened by? I kept praying, and praying, but felt no
peace. However, all I got from the
elders was to trust him. He was soon to
be my head.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">Two weeks before the wedding, I was physically ill over
it. Even though I’d been having
misgivings, my mom was being told by the elders to encourage me to trust
him. However, at this point, we decided
to call it off. I couldn’t do it. We drove the six hours to where he lived to
do it in person. I’d written him a
letter, because I knew I wouldn’t be able to speak. After reading it, his response to my mom was
“What I’m wondering is, if this is a decision that she should even be allowed
to make.” Those words still ring
clear. A decision I shouldn’t be allowed
to make. Then, in my presence, he threw
away gifts I’d given him during our courtship and engagement.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">I was instructed by the elders in our CREC church not to
talk about why I broke off the engagement.
The elder who had been conducting our premarital counseling was a
personal friend of my now ex-fiancé, and he had speculated to mom and me that I
likely simply wasn’t quite mature enough to get married. A statement was sent to the church saying
that we had differences in communication that we couldn’t resolve, or something
to that effect.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">Afterward, a number of women approached me, saying how
relieved they were. That my ex-fiancé
had always creeped them out. He was too
touchy during church dances. There was
just something “off,” etc. That they had determined to be his friend, because
he would be my husband, but weren’t sure how to manage that. However, because there was nothing concrete—no
solid evidence, the men didn’t want them to speak out about it.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">At one point I mentioned on my little blog that I was
thankful we hadn’t yet kissed—that that was saved for the man that I hoped to
marry someday. Within a couple of days,
the elder who had overseen our counseling and was personal friend of my ex-fiancé
called me and asked me to take it down, because it was demeaning to his
character.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">And that was the end of it. The next several months were a difficult time
of recovery, but by God’s grace, I did recover.
Unfortunately, we didn’t realize at the time that covering up abuse,
both mild and extreme, was a pattern in these churches, and we stayed. We weren’t yet rethinking the theology that
drives these patterns. That came
later. Much, much later.</span></span></div>
<br />
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Trebuchet MS, sans-serif;">And my ex-fiancé?
He’s now a deacon in a CREC church.</span><span style="font-family: Tahoma, sans-serif;"><o:p></o:p></span></span></div>
Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com22tag:blogger.com,1999:blog-8934609979910464380.post-53867411561896304042015-07-01T08:56:00.001-07:002015-07-01T08:56:50.614-07:00Letter to the Woman who Grabbed my Child<span style="font-family: Trebuchet MS, sans-serif;">We were there, in the thrift store, wandering the aisles and looking for treasures. My four children had already picked out their free books--a service that makes this chain a favorite, and we had moved on the looking for other "treasures." My 18 month old who is presumed to have cerebral palsy, has FPIES (food protein induced enterocolitis syndrome), and is feeding tube dependent was happily perched in the cart, and the other kids were walking with me.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">My 3 year old, who is on the autism spectrum, was touching. Everything. I kept reminding him not to touch. However, he wasn't being wild or out of control, and the thrift store has always felt like a safe place to learn. If something does break, we can buy it without experiencing financial distress.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYLOYoQlD2VhUkkw1Tm9Z49WxBemOSYE1hJjls6D9jT-QEh6xMlbmqA9lVSxsrEoeCyOCF2MTzuAM1MghYkzI8asZWiJxg3wBB2gxoIT0nmJGFUqbVSZZ0x0_APP-G6bmOnoKSdlc8NTB1/s1600/Abel+at+Chick+fil+a.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYLOYoQlD2VhUkkw1Tm9Z49WxBemOSYE1hJjls6D9jT-QEh6xMlbmqA9lVSxsrEoeCyOCF2MTzuAM1MghYkzI8asZWiJxg3wBB2gxoIT0nmJGFUqbVSZZ0x0_APP-G6bmOnoKSdlc8NTB1/s320/Abel+at+Chick+fil+a.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Abel on a fun outing.</td></tr>
</tbody></table>
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: 'Trebuchet MS', sans-serif;">We had just moved past a display that had a tea set in it, when I heard a harsh, whispered "no touch." I turned around, and you were reprimanding him. He'd apparently hung back and tried to touch it. I took him by the hand, and we moved on. Then, another aisle over, you were there, and you came down fast. Once again, he was compulsively feeling things, but doing so gently. You swooped down behind him while I, his mother, was right there. You grabbed him by the wrists, and said sharply, "look with your eyes, not your hands!"</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">He looked stunned. I was stunned. I'm ashamed that I was in too much disbelief to say anything. I simply told my children that we needed to go now, and we left.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm1QW3KWHSS6H63TLcMVMjq5yo3Drx9rO5j4RmhwHy5EYJdw5PwVpeLmV0Za6VRuAsEryp9LCSd11wxyyMJkoknIJYBezTXJ3WgJo3Tw8gQU17-mFQ8VhYJVyjkBtRcn7I3aZK1ZucnZC-/s1600/Abel+and+tractor.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm1QW3KWHSS6H63TLcMVMjq5yo3Drx9rO5j4RmhwHy5EYJdw5PwVpeLmV0Za6VRuAsEryp9LCSd11wxyyMJkoknIJYBezTXJ3WgJo3Tw8gQU17-mFQ8VhYJVyjkBtRcn7I3aZK1ZucnZC-/s320/Abel+and+tractor.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Abel obsesses over anything with buttons, switches, or levers and is constantly building "machines."</td></tr>
</tbody></table>
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Later came the rage and the feelings of utter failure as a mother. You had no way of knowing that we'd already had two doctor's appointments that day, and were doing something fun to fill the gap before therapy. The therapy that teaches my autistic child how to handle stimuli more effectively and that helps my 18 month old who can't yet walk (in fact, crawling is a recent skill) how to move.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">But that's the point. <i>You didn't know.</i> I'm so acutely aware of my shortcomings as a mother. That this journey looks nothing like I thought it would. I cry almost daily over my inability to make things different. To make them better for them. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSnZBb1Jy25ol-RdaeQHts2nOhoZ5NC1Ww8B8aojtY-dFzy5CEf2JN4cszVhYFfeLHXL3FYf88Ov4dAUpghjLyDrcUV0jogJcq407o_Va-TrcCAo19LNwDmKWkMqk2nw8Sn6nLPMROsKus/s1600/Swimming+and+feeding.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSnZBb1Jy25ol-RdaeQHts2nOhoZ5NC1Ww8B8aojtY-dFzy5CEf2JN4cszVhYFfeLHXL3FYf88Ov4dAUpghjLyDrcUV0jogJcq407o_Va-TrcCAo19LNwDmKWkMqk2nw8Sn6nLPMROsKus/s320/Swimming+and+feeding.jpg" width="176" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pip feeding while swimming. Having him home while dependent on a feeding tube would have been impossible in the not so distant past.</td></tr>
</tbody></table>
<br />
<span style="font-family: Trebuchet MS, sans-serif;">And, as thankful as I am for everything your generation has done, there is this one thing that I can't get over right now--two of my four children would have been institutionalized by your generation. Maybe not by you, and maybe you aren't aware of that. But it isn't that children like mine didn't exist then, that you didn't have problems like this. It's that they were tucked neatly away, out of the eye of the public. I'm sure families like ours are hard to comprehend and it seems like surely, surely we could have prevented this.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">I cry about that, too.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Right now I'm trying hard to spin what you did in a positive light. To think you were trying to help. But it felt like an attack on me, not to mention my child. I wish you knew how regularly I do that to myself. Attack myself. In the past 24 hours I've been praying for you, and for myself. That I would be able to love you with the love of Jesus, and that you might have your eyes opened to the real messiness of life. Of children with disabilities. I guarantee your life will be better for it. Enriched. It's not an easy reality--believe me, I know. But I also know that these children, my children, are every bit as much an image of God as you or I.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL35JaP2FfiDW6gUPW9Do3ajhLdcoblCSsVXChpsNq0Mb6p0RhuoApu0b32t9vg_IFxhfB7WE7wYEuZSjq5Mk5UCf49tYZDt-lzezl38cJJYcn5As_0_jOpbebTnQK0er_8OvZW-1tUwYb/s1600/Kids+in+Madsen.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL35JaP2FfiDW6gUPW9Do3ajhLdcoblCSsVXChpsNq0Mb6p0RhuoApu0b32t9vg_IFxhfB7WE7wYEuZSjq5Mk5UCf49tYZDt-lzezl38cJJYcn5As_0_jOpbebTnQK0er_8OvZW-1tUwYb/s320/Kids+in+Madsen.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ready for a bike ride in our Madsen--an amazing bike that allows me to take all four out at once.</td></tr>
</tbody></table>
<span style="font-family: Trebuchet MS, sans-serif;"> </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">You have been my first introduction to the fact that many people don't have room in their hearts for those who are different, and that--<i>that</i> makes me incredibly sad. For my children, and for those of you who are missing out on relationships with these precious little ones. Because they are precious. To me, and to Jesus. And I can only pray that someday they might be to you as well.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com2tag:blogger.com,1999:blog-8934609979910464380.post-42698006621238127592015-06-26T11:07:00.002-07:002015-06-26T11:07:38.957-07:00Periventricular Leukomalacia<span style="font-family: Trebuchet MS, sans-serif;">Since our last update Pip had an MRI of his brain. We were told that, if it was normal, we wouldn't hear anything, and we'd go back to see the neurologist in July. If there was anything to report, the neurologist would call.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">She called the next day.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">It was a very confusing call. According to the radiologist, Pip has something called periventricular leukomalacia (PVL), which is damage to the white matter of the brain. It's typically seen in premature infants or infants who sustained brain injury during delivery. Neither is true of Pip. Therefore, the neurologist is holding out hope that his brain might be slow to myelinate. But the question is, why?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">I felt like I had to pull information out of her. If it is, indeed PVL, then he has cerebral palsy. If not, it's still unkown. We were sent to the physiatrist, who said Pip's outside his range of specialty, and referred us to genetics.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">In the meantime, we have an appointment set up to go to Seattle Children's to see a neurologist who specializes in mitochondrial myopathy in August.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhozCZe_RnuQBTlJeozMu9q8NzXOn1MbQkJuftOcu5QXE0omz5NWZ_1FyZRBeY6YWnPM5SXn_NRykHo0ZAuCfHzqYK2uY18swMeke4RV0hdjQDXtmODtnTXEKP6kaL_-3QSA5cdMK2C_Nr5/s1600/Tubie+swimming.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhozCZe_RnuQBTlJeozMu9q8NzXOn1MbQkJuftOcu5QXE0omz5NWZ_1FyZRBeY6YWnPM5SXn_NRykHo0ZAuCfHzqYK2uY18swMeke4RV0hdjQDXtmODtnTXEKP6kaL_-3QSA5cdMK2C_Nr5/s320/Tubie+swimming.jpg" width="176" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pip feeding while swimming on a summer day.</td></tr>
</tbody></table>
<br />
<span style="font-family: Trebuchet MS, sans-serif;">Thanks to having therapy three days a week, Pip's motor skills are improving. It's looking he's going to beat the predictions for when he'll walk, which is amazing. He's now pulling up to stand and cruising the furniture. He'll be 18 months on July 1st. Of course, this didn't happen in a vacuum, it's been work--lots and lots of hard work. But it does muddy the water for those who haven't seen the work. We're learning it's going to make getting coverage for his needs more difficult since he's now teetering on the edge of being developmentally delayed enough and medically fragile enough for Katie Beckett medicaid. It's a very expensive and very uncertain place to be. We have a feeding tube, abnormalities on a brain MRI, multiple therapies a week. We're finally making progress, and that progress makes a diagnosis and insurance coverage that much harder. If we get a diagnosis, the coverage should follow.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">I'm ready for the roller coaster to stop. I'm having a harder and harder time just breathing. For those who haven't been on the special needs end, managing the paperwork, services, and coverage is a mess. Not to mention showing up for the appointments, following through at home, and keeping up with the other kids. It goes so far beyond the physical exhaustion into an emotional exhaustion that I've never known.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">We're praying for answers soon, and that if we don't get them, peace in the knowledge that God will provide the resources to meet Pip's needs financially and otherwise.</span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-12179887069798020602015-06-12T10:06:00.003-07:002015-06-12T10:06:45.022-07:00Mercy had a Birthday!<span style="font-family: Trebuchet MS, sans-serif;">Sometimes the normal happy things of life seem to get lost in the noise. Though hard things are happening, so are wonderful things. Among them is this:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Mercy turned seven!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">How did that happen? This sweet girl wanted a garden for her birthday.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">A lot has happened this past year, and we've seen Mercy grow in so many ways. She's a fun, sweet, silly, garden loving, people loving girl. We're so thankful God gave her to us!</span></div>
Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-91281680671125444732015-05-25T19:24:00.001-07:002015-05-25T19:24:56.172-07:00Gardening!<span style="font-family: Trebuchet MS, sans-serif;">I didn't think I would garden this year. After all, where would the time come from? And since we moved last summer, we would have to start from scratch. However, after I did some planting in the front, I remembered how therapeutic getting my hands in the dirt is, and decided to go for it. Not to mention how wonderful all of the home grown produce is.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Then I began to stress out. Ryan's work schedule is crazy winter and spring. Really, really crazy. I don't have time for laundry, let alone setting up gardens. And we're sick. I didn't feel like setting up gardens, but we had to, because the window for planting is closing fast. Therefore, sick or not, we got it done this weekend. I can't talk, I can't breathe, and I'm coughing up a storm, but thanks to my husband's encouragement, we got through it.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I found the boxes for a steal on Craigslist, and the trellises are inspired by Pinterest, but in the end, are of our own design (not that someone else doesn't have one just like it, but I haven't seen them if they do). I'm so excited, and so glad we got it done! We just need to add a bit more soil, and we'll plant! Hopefully they'll all be planted by the end of the week.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We also bought a praying mantis egg sack. It's supposed to contain 100-200 praying mantis eggs that will hatch in 2-3 weeks and help control bugs. Hurray for chemical free pest control! And it's just cool.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">They're incubating in this paper bag on the kitchen window sill. Once they hatch we'll take them out and sprinkle them on the garden and landscaping out front.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm learning that, although, as a mother of four children, there isn't enough time to do everything, as the mom of children with special needs, it's even more intense. Setting up the gardens pressured me even more, but I'm hoping that planting and harvesting will provide a much needed outlet when the stress starts to overwhelm me.</span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-24862877363887327342015-05-01T16:55:00.001-07:002015-05-01T17:05:40.603-07:00Special or Not?<span style="font-family: Trebuchet MS, sans-serif;">Today was hard. A day in which I scrolled through the contacts on my phone, looking for someone to cry to, but everyone I would have felt comfortable doing that with was either working or busy with their own crises, so I turned it off.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Where we're at is a lonely place sometimes. Or a lot of times. Something I struggle with probably sounds ridiculous, but it's this. Do my kids (Pip, and possible Abel) have special needs, or not? Both parties, parents of typical kids and parents of special needs kids seem to think they look too good to fall into the special needs camp. Maybe they do?</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We hear how great Pip looks all the time. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">"He just looks so healthy!" </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">"I can't believe how great he looks!" </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">"So, he's not walking. He just needs some more time."</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Maybe I should take how great he looks as a compliment. A tribute to how well we're doing with a difficult situation? But how it feels? If feels like it shouldn't be hard. Like my exhaustion isn't legitimate. Like the the fact that he has FPIES, takes in very little orally, and probably has cerebral palsy is completely irrelevant.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">He does look healthy and wonderful. Thanks to lots of prayer, energy, elemental formula, and a piece of silicone that's surgically implanted in his abdomen. And he does need more time before he walks. He isn't ready. He just started crawling, and that takes lots of thought and energy for him. He needs time--and more therapy.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And Abel. Abel had a CT this morning of his sinuses. It's thought that he may have inherited my structural abnormalities. He was terrified. So terrified. His little body was literally shaking as he was finally forced into laying down once it became obvious he couldn't be talked into it. They had me lay down on top of him and look at me. I kept saying "look at me, Abel. Look at me in my eyes." Only Abel has a hard time doing that in the best of times. He was trying. Oh, he was trying. But his eyes were everywhere. He was trying so hard that his jaw was moving with the effort, so I eventually had to hold his chin, too. He looked like a caged animal. When it was finally over, and he was told he was all done he dissolved into uncontrollable sobs. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Then later, I watched him "color" side by side with a much younger three year old. She stayed between the lines and grasped her crayon close to properly. I've seen children Pip's age hold the crayon better than Abel can.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I waver between feeling like I've failed miserably for not being able to get this child to focus long enough to actually hear what I'm saying and follow through, and feeling like I've failed miserably because something in his brain seems to causing his world to be overwhelming ALL THE TIME, and why can't I do something to help him with that? Then I get overwhelmed by him, and we both end up in a puddle of tears. We'll likely find out next month if he's actually on the autism spectrum.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We're too normal to be special needs. Too healthy. We look too good. I hear how well I'm holding up all the time. But am I? I feel like I'm floating in my own world. Someone else must be here, too. But I sure wish that that someone's world would intersect with mine.</span></div>
Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com1tag:blogger.com,1999:blog-8934609979910464380.post-2422058477297010362015-04-13T13:56:00.000-07:002015-04-14T14:58:12.446-07:00The Straw that Broke Me...<span style="font-family: Trebuchet MS, sans-serif;">In the past month or two we've been told that all four children might have mitochondrial disease. That Pip might have cerebral palsy. Abel may well be on the autism spectrum.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Big things. Hard things. And through it all, there have been some tears, but no break downs. We've been told we look good. I honestly haven't known why, apart from the grace of God.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Then the straw came. The one that broke me. Yesterday I remembered to check the mail, since I'd forgotten the day before. In it was the letter from the charter school Mercy attends. The one that was supposed to say that Gilead was accepted for kindergarten for the 2015-2016 school year. Only it didn't. Instead it said he was on the waiting list.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I knew it was a lottery. However, siblings get drawn before anyone else, and though there are no guarantees, it's pretty much an implied guarantee. I lost it. You see, giving up homeschooling was hard for me. <i>So hard. </i>It wasn't easy for me to trust God with letting go of Mercy during school hours.<i> </i>And now, Gilead doesn't have a place in the school that has been such a blessing to us in a really difficult season. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I took a long nap. Then I cried. And once the dam broke, I couldn't plug it back up again. The river flowed until I fell asleep. I woke up to tend to a sick Pip at 12:30am, then cried myself to sleep again.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">God's grace isn't any less there than it was when I was "standing strong." But it's different on days like today. Today I feel the uncertainty of the future. The pain. The heartache. Not knowing where Gilead will go to school. When Pip will walk. If Abel is "on the spectrum." What any of our futures hold.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And I'm so thankful that God doesn't turn away from the tears, but wipes them for me. That we now attend a church in which the pastor wants the congregation to be okay with Abel's meltdowns. That we are surrounded by gracious people.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Because today, I'm broken, and I can't guarantee when I'll be back together again.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">*<span style="font-size: x-small;">As an addendum, I was able to get in touch with the school the following day. After spending the day working on it, they discovered that we were the victims of the one lottery mistake of the year. One child with the same last name, and a first name just one letter off from Mercy's also entered the lottery, and her letter and Gilead's were inadvertently switched. He was, indeed, drawn for enrollment this upcoming year.</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> </span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-81172856207073055492015-04-08T08:05:00.005-07:002015-04-08T08:05:55.353-07:00Hope Blooms<span style="font-family: Trebuchet MS, sans-serif;">We just celebrated Resurrection Sunday. Easter Sunday. The hope we have in our risen Savior. This year I've found particular significance in the holiday. Nothing about the significance of Christ's work for us has changed, but our lives have.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We've had a lot thrown at us. A lot of labels. A lot of potential diagnoses. A lot of maybes and what ifs regarding our children.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And yet, the reality is this. These are the same beautiful children we've always had. The ones that God gave us. <i>Created in his image.</i> Cherished by him. <i> Christ died and rose for Mercy, Gilead, Abel, and Pip</i>. Not for mitochondrial depletion, autism spectrum disorder, sensory processing disorder, FPIES, or mild cerebral palsy. Those things, or the possibility of those things, are not who they are.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I still cry a lot. I'm exhausted and confused. I don't know how to be the best mom to them. <i>This is hard!</i> <b>But hope blooms.</b> It blooms when the child who struggles with empathy pats his baby brother and says "it's okay, we're almost home" when he's crying in the car. It blooms when Pip takes a whole three ounces from the bottle. It blooms when Gilead works up the nerve and strength to go down a tunnel slide.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;"> We have been so loved by the body of Christ. Our children know that Jesus loves them. They have no concept that he might not. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">So we keep living each day in hope. I administer meds. We go to therapy. Teach bodies to move properly, go to appointments, and teach little people that Jesus loves them. That they are created in the image of God--<i>feeding tubes, motor delays, and all.</i> They are no less a reflection of Him.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">And this year we celebrate our hope in the risen Christ. We don't deny that life is hard. <i>It is hard.</i> But Christ is risen, and He is here. <i>He is here.</i> He's alive. And there's so much hope.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-70611806960921184812015-03-04T14:21:00.003-08:002015-03-04T16:16:35.352-08:00Running on Empty<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4VXhmnxEhRIBrACsDKLGmURUlzr7h9D739WiDC6JBBD1tIvdsbJrm8e-nkt5T0x6j2h5yjGi3Cm-Kg8E8d6x4IBwgLipOmVRiCxr6NiaQRoC7PYUQHEYS5XgW12rnLUgwbLJH2zk5G_He/s1600/IMG_0374.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4VXhmnxEhRIBrACsDKLGmURUlzr7h9D739WiDC6JBBD1tIvdsbJrm8e-nkt5T0x6j2h5yjGi3Cm-Kg8E8d6x4IBwgLipOmVRiCxr6NiaQRoC7PYUQHEYS5XgW12rnLUgwbLJH2zk5G_He/s1600/IMG_0374.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pip swinging and feeding with his pump conveniently hanging from a biner clip. Those clips and command hooks are my new best friends.</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">Once again time has run away from me. So much life happening, and so little time for blogging. Here's a brief rundown...</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We took Pip to Salt Lake City at the end of January to see a craniofacial surgeon who specializes in craniosynostosis. His sutures were so tight that he needed a CT to be certain, but we had much rejoicing to do upon learning that Pip does not have cranio! </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Our trip was not without glitches. It was our first time traveling since Pip's G tube was placed, and I was meticulous about packing <i>everything. </i> Or so I thought. It wasn't until we attempted putting Pip to bed after we arrived at the Ronald McDonald House that I realized the one crucial thing that I had forgotten--the charger to Pip's feeding pump. Panic ensued (5.5 hours is too far to drive back and get it). It was 10pm, and we've never had to test the length of the charge. I put out a cry for help via an online support group for parents of G tube babies, and we were amazed by the way friends and total strangers alike pulled together to make sure we had a charger and could feed Pip.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We also got Mercy's EEG results back and she saw a pediatric neurologist. Another praise. Mercy does not have epilepsy. What she has is a motor tick, likely tied to excess dopamine levels in the brain. There's a 33% chance it will dissipate, 33% it will remain as it is, and 33% it will worsen. We'll cross that bridge when and if it comes. Because motor ticks are involuntary, she can't stop it from happening. We're praying it will simply resolve itself before kids are old enough to give her a hard time about it.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Gilead also turned 5! Just thought I'd throw that in there, because it's worth celebrating. I was worried he would feel lost in the midst of Daddy's crazy work schedule and Pip's needs and the like, but he loved everything about his birthday. He says that being five is "great! greater than ever!"</span></div>
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<tr><td class="tr-caption" style="text-align: center;">Gilead with his "dinosaur land" volcano cake. The kids were duly impressed by the dry ice.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB-0HYYeytPUATbDWzAuR_hE-medM79r9u8byaZ6mu7ottK4Qxwmghr-v-A0wsESKLc7eZj6pDqsmLrkpEi7NC-er6RH0aXx_9swXXGzG5kgD-ltLqjiSjeH4yAmyUYzFqXyXz7gbtxm76/s1600/IMG_0453.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB-0HYYeytPUATbDWzAuR_hE-medM79r9u8byaZ6mu7ottK4Qxwmghr-v-A0wsESKLc7eZj6pDqsmLrkpEi7NC-er6RH0aXx_9swXXGzG5kgD-ltLqjiSjeH4yAmyUYzFqXyXz7gbtxm76/s1600/IMG_0453.JPG" height="320" width="240" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Pip wore his "party duds" for Gilead's birthday.</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">This past month the preschool the boys attend talked with me about the possibility that Abel in particular, but likely both of the boys, may have sensory processing disorder. They've both had thorough evaluations by an occupational therapist, and, as it turns out, many of things we've struggled with with them are sensory related and can be helped. Such as, why are my children terrified of stairs? And playground equipment? Why does Abel freak out every time there's a drop of water on him? </span></div>
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<tr><td class="tr-caption" style="text-align: center;">They might not be climbers, but they love the swings!</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">In fact, Abel is so far behind in so many areas that he's being referred to a developmental pediatrician for further evaluation. Because all of our children have had global gross motor delays and some other quirky little things that do not resolve well with time (despite everyone saying they will), genetic testing is also being discussed. I'm trying not to think about all of that right now. I'm having to trust God one day, one appointment at a time.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Because the boys were found to have so many developmental delays, they're each in occupational therapy three days a week now, and speech therapy two days a week. Pip has therapy three days a week. This is my job now. I take children to therapy.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Pip is also still struggling with retching and vomiting. He was started on a new medication, called periactin, a couple of weeks ago. It's technically an antihistimine, but also acts as an appetite stimulant. The hope was that if he felt hungrier, his body would handle feedings better. Once on it, the first thing we noticed was that he was fussy. So incredibly fussy. But his oral intake nearly doubled (to 8-12 ounces a day!) and the retching was better. Therefore we were told to stick it out. We hit the "sweet spot" for about two days. The side effects were manageable and his retching was better. I was so happy! But then the retching came back. So the dose is now increased, but his oral intake is still back to the 0-6 ounces per 24 hours it was at before, and he's still retching. Last night it was all out projectile vomiting.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">If the periactin fails, we're out of options, and we'll have to go to a GJ tube. I keep being told it could be a wonderful thing for him. My biggest hesitation is the fact that he's already so far behind with his motor development, and wearing that backpack nearly every waking hour isn't going to help.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In the end, I just keep praying that he'll start to take more in orally, and that we'll be able to achieve a baseline, which might require the GJ. Once we can do that, we can begin down the exciting, yet terrifying road of seeing if there are any foods his little body can tolerate.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We have a minimum of 11 appointments a week now, and Ryan's working long, long days. On my own strength, I'm running on empty. Thankfully I'm not on my own. I have no idea what God's weaving through us in these moments, but I know that he is at work. There isn't a way to figure out why we ended up with three children with special needs. Three beautiful, smart, exhausting children who have brains and bodies that work a little differently than most.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">But I know that He is at work, and in that there is much comfort. And of course, fuel for the next day. Or hour, or minute, as the case may be.*</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">*And please don't read into that that I don't melt down. Because I do. A LOT. Like when I cried on the floor of the bathroom at the Ronald McDonald House...</span></div>
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Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com1tag:blogger.com,1999:blog-8934609979910464380.post-3015010834413917512015-01-20T13:18:00.001-08:002015-01-20T13:18:31.264-08:00Mildly Complex<span style="font-family: Trebuchet MS, sans-serif;">This past week has been full. Yes, busy full. But more full in the "I can't process all of these emotions without exploding or completely shutting down" kind of full. However, that isn't an option when you have so many little people depending on you, so by God's grace, we keep going.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">To rewind a little, at 9 months, Pip's physical therapist was concerned that his soft spots were closing too soon. However, his pediatrician wasn't concerned, and after doing some asking around, his therapist felt better, too, so the subject was dropped. I never thought about it again. Then, all of a sudden, not quite two weeks ago, it seems that everyone became concerned about his head shape all at the same time.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Pip may, in addition to FPIES, have a condition called <a href="http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pediatric_neurosurgery/conditions/craniosynostosis/">craniosynostosis</a>, in which the plates that make the skull fuse prematurely. This causes abnormal head shape, and can also cause intracranial pressure, which could explain the vomiting and retching we can't get under control as well as his gross motor delays. The fix for craniosynostosis is major craniofacial surgery. We're talking 8 hour, ear to ear scar, kind of head surgery. It makes my mommy heart panic to think about it. I swing back and forth between convincing myself that it's so rare that surely he doesn't have it, and nearly panicking because he must surely have it.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXuqQHjFSAi1DWxoMzQ8RmF2pfhmBs5vQYxPcJAFoUoWOW__eJu3TygVbbftXiJsIiFM14Jd1kkcSbZbPmWWrzxwbUFxa9q1fqOpY4X-1PHAG_J8eaoPu_SZggGTI8qpvAbe9R9sKDKzPh/s1600/Pip+and+balloons.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXuqQHjFSAi1DWxoMzQ8RmF2pfhmBs5vQYxPcJAFoUoWOW__eJu3TygVbbftXiJsIiFM14Jd1kkcSbZbPmWWrzxwbUFxa9q1fqOpY4X-1PHAG_J8eaoPu_SZggGTI8qpvAbe9R9sKDKzPh/s1600/Pip+and+balloons.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That "bubble" at his forhead is called frontal bossing, and can be a sign of craniosynostosis.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ridging at what might possibly be fused sutures at the back of his head.</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">Pip's GI wants us to change pediatrician's to an office that used to dealing with more kids with complex needs. And yet, in the realm of complex kids, he's mild. Which leaves me feeling really conflicted. I have typical children, so I can tell you that he's a lot more physical work and emotionally exhausting that most children, but I also know that there are parents who deal with much, much more on a daily basis. So I feel by turns overwhelmed and inadequate and then guilty about it.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We're waiting to further address Pip's continued retching and vomiting until cranial/neurological problems have been ruled out as the cause. So for now, we're waiting on those results.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Pip did have a great weekend before the vomiting and retching started back up again on Sunday night, and we enjoyed that so, so much. Then, last night he was up almost every hour. Sleep is scarce here these days.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In the meantime, our Mercy girl began having some odd eye behavior that continued to worsen. I meant to contact her teacher to ask her to keep an eye open for it, but her teacher beat me to it by contacting me to let me know she was concerned. I was able to film Mercy's eyes as they repeatedly rolled up and back into her head and show it to the doctor. The hope is that it's a tick that will go away in a few weeks. However, it may be seizures, so she has an EEG scheduled on Friday. We have to keep her up two hours past her bedtime and wake her up two hours early before the morning of the test. She's going to be one tired girl. The following Friday she has an appointment with the neurologist.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The physical exhaustion is a lot to deal with, but the emotional exhaustion is much, much worse. Not knowing is hard. I want to talk about it, and I don't want to talk about. Pip <i>might</i> have craniosynostosis. He <i>might </i>need major craniofacial surgery. He <i>might</i> need to move to a GJ tube. Mercy <i>might</i> be having seizures. Epilepsy is a scary word. We don't know yet. Waiting, and resting in the Lord is hard.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">If you ask us what we need, expect us to say "I don't know." Because I don't know. I can't really think beyond <i>the next thing.</i> The next appointment, school pick ups, the next meal. You might catch us in a smooth day, and wonder what the deal is. I think about that a lot, too. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">If nothing else, please remember to pray for us. People say they don't know how we do it, and I believe the prayers of God's people are big part of what keeps us going.</span><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-82555521855225142682015-01-05T09:57:00.000-08:002015-01-05T09:57:05.213-08:00Drowning<span style="font-family: Trebuchet MS, sans-serif;">There have been so many things I've wanted to write about, but I literally haven't had the time. Now I've hit a point at which it almost feels like there's no point in trying, I'm so far behind.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">As Christians, we know that we're blessed. That God has bestowed so much grace upon us. However, at least I have always felt pressure to not allow myself to express myself as anything other than thankful. Anything less is lack of spirituality. I am thankful for all of the help and kindness that have been bestowed upon us. So thankful. But then there's this:</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm still drowning.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We can't get Pip's retching and vomiting under control. Then, on Christmas, the kids came down with a terrible respiratory bug. Mercy's turned into pneumonia, Abel's into double ear infections, and Pip's into croup so nasty that he required two rounds of steroids and epinephrine. We made two trips to the emergency room, two to the pediatrician, and still have 13 appointments on the calendar for the remainder of the month--and that's just for maintaining Pip.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7TzURjsJ0WtA2uAGQFN12sx0IgpOOS_VziD9tNAUIShAP7bXTenMivrVqzUM4swoUU-SNn-pOOvmsc0WhrgT6DOcjEhVjoSqQ-wzixir-DarKCcPmeINjdlG6N9fbny9JiBb23rw2RVXs/s1600/Croupy+Pip.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7TzURjsJ0WtA2uAGQFN12sx0IgpOOS_VziD9tNAUIShAP7bXTenMivrVqzUM4swoUU-SNn-pOOvmsc0WhrgT6DOcjEhVjoSqQ-wzixir-DarKCcPmeINjdlG6N9fbny9JiBb23rw2RVXs/s1600/Croupy+Pip.jpg" height="320" width="240" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And maintaining him is a lot of time and energy. He looks great, but it takes a lot to keep him that way. Last week I came home with the kids from yet another doctor's appointment and it was naptime. Pip had fallen asleep in the car, so I put him straight to bed. But it was also time for his feeding. After getting the others down I sneaked into his room to administer meds and hook him up for a slow feeding while he slept. It was a moment that struck me hard. <i>This isn't normal.</i></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSvakG4ksVUTcKHIaMiOJFXp6zYUgIKe5yFcSzsjwb7EeZJeIIaplxoxSGPy6VVRIDFJZ-qOXHmFtqiDItFJ-6z6vJu0eGci7HX2idJDyHz6YBnWngEShbNyNhxtdzgIZ-CAo3qtcAIXsD/s1600/Feeding+on+the+go.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSvakG4ksVUTcKHIaMiOJFXp6zYUgIKe5yFcSzsjwb7EeZJeIIaplxoxSGPy6VVRIDFJZ-qOXHmFtqiDItFJ-6z6vJu0eGci7HX2idJDyHz6YBnWngEShbNyNhxtdzgIZ-CAo3qtcAIXsD/s1600/Feeding+on+the+go.jpg" height="320" width="240" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">With the kids all having been so sick, and Pip fighting croup and his usual battles, we've been getting about 4 hours of sleep a night. It's almost like living in a dream.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">My house has never been so consistently messy, our meals have never been so haphazard. I have moments in which I feel like I'm going to burst with panicky feelings, and I can't really even identify them. There's the physical work and exhaustion, but there's also the weariness that comes from feeling so utterly helpless. Having a child who is uncomfortable or in pain, and being unable to help him. Dreading feeding him, because he inevitably gets nauseated and at least retches, if not vomits. <i>And despite doing my best, everything I can, he's still miserable.</i> </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">He cries "mama" between retches, and all I can do is hold him. And then, a couple of hours later, we repeat the process. It hurts. And yes, it brings on feelings of hopelessness and despair.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We're also about to have to start discussing changes in formula and food trials, which strikes fear into my heart. If he's this sick exclusively on elemental formula, do we dare risk making it worse?</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Living in the Northwest is hard when you have a child with FPIES. Nearly all of the specialists are on the east coast. We're hours from the nearest one. I don't know how we would manage a trip to see one of them, but I'm seriously starting to toy with the idea. Our doctors are great, but everyone seems to be running out of ideas.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivlBl3gdzjANyhVuyaYpAXtWEHlWFKTHhJS94qsnm2ia4v2gqolpwkLJ1dPNXqCAKV2-sOPxjIctKPMzeldlhsf-wjzI2E9u_N0xdZLno2Te0FEwdh7e65i7mRMRhA9C7UXQSmimbhrrtb/s1600/Christmas+tubie+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivlBl3gdzjANyhVuyaYpAXtWEHlWFKTHhJS94qsnm2ia4v2gqolpwkLJ1dPNXqCAKV2-sOPxjIctKPMzeldlhsf-wjzI2E9u_N0xdZLno2Te0FEwdh7e65i7mRMRhA9C7UXQSmimbhrrtb/s1600/Christmas+tubie+2.jpg" height="320" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1k61wKNgux-DURTxTx3T8izxmNazwQ60zkk9nFdZ_NnSR49ShnXJMs3ZgT_OtolSsCeo92YJoPMHvJYYH33WzWi5rmH4Q2XyWzinYipikyndDg20FGghgpGpSLJGcvkqeEHqQxkqKdCb-/s1600/Christmas+Eve+Pip.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1k61wKNgux-DURTxTx3T8izxmNazwQ60zkk9nFdZ_NnSR49ShnXJMs3ZgT_OtolSsCeo92YJoPMHvJYYH33WzWi5rmH4Q2XyWzinYipikyndDg20FGghgpGpSLJGcvkqeEHqQxkqKdCb-/s1600/Christmas+Eve+Pip.jpg" height="320" width="240" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Please pray for health for Pip. For sleep for all of us. And for hope. When he was diagnosed with FPIES we knew it wouldn't be easy, but we had no way of knowing how incredibly hard this road would be.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHdKolQaBFR9x40n6JVHsl8FWgvnRrlfFLP-Q5LkSpkOU-oslUkylMAsc0_1TRkH2975SC-70ej6IVpbnho4aXyW3VCMHbk_wur91OO4viaBevcdu9p_5gGpwcRe_EnRUiETi5Hd8IJVLF/s1600/Kids+in+front+of+tree.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHdKolQaBFR9x40n6JVHsl8FWgvnRrlfFLP-Q5LkSpkOU-oslUkylMAsc0_1TRkH2975SC-70ej6IVpbnho4aXyW3VCMHbk_wur91OO4viaBevcdu9p_5gGpwcRe_EnRUiETi5Hd8IJVLF/s1600/Kids+in+front+of+tree.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our four amazing children at Christmas. Pip's older siblings love him dearly, and are learning so much empathy and compassion.</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-72581641889337216602014-11-19T06:11:00.002-08:002014-11-19T06:11:37.022-08:00Failing to Thrive<span style="font-family: Trebuchet MS, sans-serif;">It's hard to believe it's been a month since Pip had his G tube placed. I wish I could say all's been smooth sailing since then. Pip had a harder time recovering than most, which kept in the hospital an extra day while we got a handle on his pain and nausea.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Once home, we were supposed to be able to give him gravity feeds, in which you put the formula into a 60mL syringe and let it flow into him with the help of gravity, which occurs relatively quickly. As has been the case, we always offer the bottle first. He was doing quite a bit of vomiting on the NG tube, but the hope was that that was simply because the NG tube holds the "flaps" that normally close to prevent that sort of thing open. However, even in the hospital, Pip wasn't handling feeds any faster than 2oz. over 30 minutes via pump delivery system, so we were sent home on 2oz. over 30 minutes every 2 hours. We were gradually able to increase that to about 3oz. at a rate of 20 minutes. He still didn't handle a gravity feed.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9s1no1Ly3uSID1K-MJNjkElrLjMaAjgAGQ96ede8O6srUp0gw_-dqjdhGRYVxaIazzOv53efF9kgZ_lS5F73Rbmoahm_DIhvAmSapb8doyAapifx4EQ48SSVmr-WU3XiakicX13Q4DwTN/s1600/Pip+eats+dinner.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9s1no1Ly3uSID1K-MJNjkElrLjMaAjgAGQ96ede8O6srUp0gw_-dqjdhGRYVxaIazzOv53efF9kgZ_lS5F73Rbmoahm_DIhvAmSapb8doyAapifx4EQ48SSVmr-WU3XiakicX13Q4DwTN/s1600/Pip+eats+dinner.jpg" height="320" width="240" /></a></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">However, the vomiting still hasn't stopped. In fact, last week was really terrible in that department. We were at the GI again yesterday, where we learned that, once again, he isn't growing. He's now officially "failure to thrive." We've made some changes to the caloric density of his formula and the delivery rate of his feeds. If we can't get him growing and thriving in the next two weeks, we're looking at a hospital admission.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJGSmD45vPZPwLczpU7eZyyNw7YZ4kdSjJ5VzEVB5Glvre5YAfr3aBDMJXmFWxpywSx1Vn4m4px9QdMg32fzgNBofWCNI88fMrn1ntNSah5BsN6iu9NbUpMB9o3v3fu2TSvb0wCqtdXUqt/s1600/Bathtime+Pip.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJGSmD45vPZPwLczpU7eZyyNw7YZ4kdSjJ5VzEVB5Glvre5YAfr3aBDMJXmFWxpywSx1Vn4m4px9QdMg32fzgNBofWCNI88fMrn1ntNSah5BsN6iu9NbUpMB9o3v3fu2TSvb0wCqtdXUqt/s1600/Bathtime+Pip.jpg" height="320" width="240" /></a></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">I realize in this picture he looks fine. He's a bit thinner than this now, and because he hasn't gained in a long time, his body got smart and stopped gaining length, too, so he still looks pretty good.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">If you know me, you know that I struggle with borrowing trouble, and right now I'm having a hard time with that. If we can't get weight on him, he'll be in the hospital. I knew something needed to change, but I didn't realize we were to that point. I'm working so hard, praying so hard, doing everything I can do, and yet we're here. I have to leave it at the feet of God. He knows. He sees. He loves Pip and the rest of us.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The kids have seen me cry a lot. And pray a lot. And I'm seeing the fruit of that. Now, if they see me melting down because the pump is having a problem, or Pip is having a problem, or I'm just utterly exhausted, I often get a hand on the arm from Mercy or Gilead and hear "Mommy, we should pray about that." From the mouths of babes...</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">And Pip isn't failing to thrive in every way. He is making gains in his gross motor skills. A month ago, this would have been impossible for him.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">He's still a long way from "typical" 10.5 month skills like scooting, crawling, or cruising, but for him this is huge, and cause for rejoicing.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So, FPIES continues to be hard. Really hard. But God continues to be good.</span></div>
Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-46194579178341386662014-10-14T08:07:00.003-07:002014-10-14T11:31:18.036-07:00Be the Voice: Global FPIES Day and No Clear Words.<span style="font-family: Trebuchet MS, sans-serif;">This month the <a href="http://fpies.org/">International FPIES Association</a> and <a href="http://fpiesfoundation.org/">The FPIES Foundation</a> have been counting down to today, October 14th, the first <a href="http://fpiesday.org/">Global FPIES Awareness Day</a>. Those of us who live with FPIES have been encouraged to "be the voice" of FPIES.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The problem is, I don't feel like I can talk about it coherently enough to be a voice for anything. I'm tired. So tired. When Pip was diagnosed with FPIES at the end of July, I remember thinking "okay, it isn't good, but we'll find an elemental formula that works for him, and we'll be alright." After all, FPIES is a rare condition as it is, and those who end up needing feeding tubes or other more serious medical intervention are even rarer.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We're there. On Thursday morning we'll wake up early, check into the hospital, and Pip will have surgery to have a G tube placed. At this point, we have to walk by faith. The doctors and other feeding tube parents assure us that once we're past the recovery and the learning curve, the G tube will be much easier than the NG tube has been. But it's so hard to get past the fact that there will be a hole in my baby's tummy. He's having surgery. Not to fix something, but because what he has can't be fixed, and this will allow him to get the nutrition he needs to grow until he can nourish himself. Until he has safe foods. Until his feeding aversions have died down enough that he'll allow himself to try foods once it's okay to do so.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm worn. I heard "Worn" by Tenth Avenue North for the first time a couple of months ago. I heard it again last week and I cried.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Pip smiles a lot. He charms everyone he comes into contact with. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">But he's also frequently in pain. He cries. He doesn't nap. I don't know what to do to help him. I've encountered an attitude of "it's just food allergies" from a couple of people at this point. Pip's "just food allergies" have necessitated surgery and a feeding tube. He doesn't just have a few food allergies, he has no safe foods. He's allergic to food. Food can send him into shock, it causes him to bleed intestinally. When you have a child with special medical needs, you rapidly gain a new vocabulary. One of our first new terms was "vomit to shock." I pray none of you have to experience that with your children. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We're asked what we need. How people can help. The truth is, we feel like we're wading through a fog. One foot in front of the other. Walking by faith, not by sight. We don't have the energy to think about what to say we need. We need help, and support. But we don't know how to respond. Just show up. Really. I might cry at you. Because I'm not brave enough or strong enough for this. I know that we're still standing and experiencing joy because of Christ and his body.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We've also been asked how to pray. That's something I've been thinking about. We've prayed a lot of prayers that are more groanings and mutterings than anything lately. However, when I think about it, I have come up with a few specific ways you could pray:</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Please pray for wisdom for Pip's doctors and medical team. FPIES is still relatively uncharted territory medically, and there's no standard of care as of yet. Pray that God would direct them in their care for Pip.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Pray for peace for Ryan and I. We're having to walk in faith, and I don't know that there's a harder place to do that than with your child.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Pray that we'll be able to invest in Mercy, Gilead and Abel. This is stressful for all of us, and they're feeling it. They need us, too, and I find myself feeling like I don't have the capacity to be there for all of them. I know that I don't. It's only by God's grace that I can care for them all.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">It is also our prayer that others would see Christ in us throughout this process. Even though we're exhausted and feel at the end of ourselves. I pray that it is at that end of ourselves that others will see that it is Christ who is sustaining us.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0tag:blogger.com,1999:blog-8934609979910464380.post-86843878431874861722014-09-23T13:17:00.001-07:002014-09-23T13:17:09.865-07:00Walking with God<span style="font-family: Trebuchet MS, sans-serif;">"This is a season. This is a <i>season. This is a season."</i> </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It keeps running through my head like a mantra. We are walking with God through a difficult season, knowing that He is always faithful.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Last week Pip was placed with a nasogastric (NG) feeding tube. We watched his formula intake drop from 26-28 ounces a day, to 18-20 ounces a day, and finally to 10-15 ounces a day--and only that much because we were forcing it down him with a syringe. And he was getting good at blocking that syringe with his tongue.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It was a feeding tube or a hospital admission. What kind of a choice is that? Of course I want him home. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">God knows I tried. I tried to nourish my child. I watched him go from being a healthy, happy baby, to being on a feeding tube in less than three months. This thing, this "weally, weally bad FPIES," as his brother would say, hit us hard and fast. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The hope has been that with stronger reflux meds he'll resume eating enough on his own soon and we can get rid of the tube. The GI specialist hoped it would only take a week. Tomorrow is a week, and he has a recheck then. His oral intake has decreased. The opposite of improvement. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I don't know why. I'm doing everything I can. I've learned there's a camp that believes that feeding tubes are a lazy parent's way out. I cried when I read that. So much sweat and so many tears went into to trying to get Pip to take in enough to stay hydrated, let alone grow and thrive. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm overwhelmed and discouraged. But I'm not angry, and I'm thankful that that emotion hasn't cropped up. I wonder why all of this is happening, but not in a "why has God done this to us and him?" sort of way. I wonder what the bigger picture is. How God will use this. Because I know that he will. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I also read a post recently by a Christian counselor claiming that there are some things, like life trauma, and the depression it can lead to "lower a person's tolerance for walking with God." I believe the opposite to be true. We might not be the bubbliest people you've ever met at the moment, but it is in these times that God draws us in the closest. It might not look that way to the world, but Scripture affirms it's truth. Jesus sought out the hurting, and there is tremendous comfort in that.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So in this season we are drawn close to Him. In the midst of the lost sleep, the worry, the heartache, the tears, and the unknown, He is drawing us. In all of it, we are pursuing and walking with God, just as He is with us.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Amberhttp://www.blogger.com/profile/09957130031534428914noreply@blogger.com0