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.

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.