Tuesday, March 13, 2018

New Springs

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.

This is going somewhere, I promise.

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.

Within two weeks of that move, I was hit on the interstate, 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.

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.

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.

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.

Pip sitting (slumping?) with support right before getting his NG tube. His head looks huge because his body was now so small.

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.

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.
Mercy wanted a garden for her 7th birthday, so this particular bed has always been hers.

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.

The current garden arrangement. Next year the plan is to add another 4x8 to each end of the smaller bed lines by the fence.

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.

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.

Broccoli, Cauliflower, Brussels Sprouts, Onions, Lettuce, and Asparagus seedlings.

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.

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!

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.

Monday, February 26, 2018

Death of Dreams

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.

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.

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. 

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.
Right after starting to walk.

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.

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.

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.

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.

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.

And it's hard.

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 get it. 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.

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.

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.

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. 

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!

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.

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.

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.

Thursday, February 22, 2018

Quality of Life is Irrelevant

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.

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.

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.

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.

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.

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 Leggero Reach, 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. 

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.

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.

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.

Essentially, this boils down to a few things. First, the device must be for the child's "activities of daily living," or ADLs, and not 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.

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.

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.
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.

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.

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. 

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.

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.

Pip with Liam, his doll, who now also has AFOs.
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.

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, been more, found the right alternative practioner to find our "underlying cause." 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.

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.

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.

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.

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?

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.

We didn't earn it. We didn't have enough faith.

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.

But we can eat, sleep, and poop. So we're good, right?

*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.
**It obviously isn't only disabled children, but all disabled individuals. Children are simply what I'm dealing with in my life.

Sunday, November 20, 2016

Holding Space

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 be wherever they are in life, without trying to fix them,judge them, or otherwise interject ourselves into their pain.

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.

Pip's first day with a feeding tube at 9 months old.

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.

Starting in November we struggle to simply maintain 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.

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."  

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, must be able to walk with one another in love and not assume that another's suffering isn't our own because we knew better. 

We've had the pink drink, essential oils, fermented vegetables, and any number of diets suggested.  
Pip taking his first steps with the help of AFOs and a walker.  Such a happy day, and oh, how far he's come!

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. 

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 be seen. Be known.

I think that's what most of us really want, ultimately.  To simply be seen.  Through the managing all of the stuff so well, because we have to, because you would to if your child's life depended on it.  

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.
This was over a year ago now, and no, we don't always look this put together.

Friday, April 29, 2016

Hospital Ups and Downs

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.

That episode really threw us for a loop.  After all, this was strep throat.  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.  Almost.  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.

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. 

We had a day to spend at the Pacific Science Center before our appointments and tests, which was so much fun!

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.

Resting between appointments

Riding around between appointments at Seattle Childrens

Waiting to be called back for his MRI and muscle biopsy

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.

So, much uncertainty yet, but also much to be thankful for.

Friday, March 11, 2016

When the Waves Keep Coming

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.

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.

These two pictures show what I should have seen upon lifting Pip's shirt--both without (above), and with (below) the dressing.

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.

So, when I lifted Pip's shirt, and rather than seeing his button, I saw this, I panicked.

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!"

And even though they were in front of a display of toys and books they're allowed to play with, the boys moved--fast.

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!"

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!

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.  

The aftermath of having replaced Pip's tube on the living room floor.

Once home I was able to replace his button with a new one, and physically, all was well.

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.

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.

We live in a fallen world.  And I am fallen, and falling.

There's beauty in the fact that our children get to see moments in which we are literally, literally, 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.

Wednesday, February 24, 2016

This Special Needs Mom's Daily Schedule

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.

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.

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.  

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.

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.

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.

Pip plays at the table during a feeding while I do dishes on a morning he doesn't have therapeutic preschool.

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.

1:00pm:  Gilead and Abel have therapies until 2:30pm.

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.

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.

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.

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.  

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.

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.

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.

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...