Christian Taylor Buchanan

Christian Taylor Buchanan

Thursday, April 20, 2017

"He Should've Been Aborted"

There has been a lot of heated debate lately on my social media accounts about children with special needs. What could anyone possibly find to debate about them, you wonder? Their value and worth. Oy!

Shocking as it is, it's the truth. I have heard it all of Christian's life. The argument is always  that parents who carry children with disabilities to term and allow them to live are selfish. The premise of that argument is that people with disabilities are better off dead than disabled, that having a disability means they are suffering, and that they are a burden on society anyways, financially and otherwise.

I just wanted to take a few minutes to debunk this way of thinking once and for all.

First, let's address the selfish parents thing. Parents of special needs children are literally the most selfless people I know. I don't say that because I am one but because I am a personal witness to it. I say it because I know the amount of sacrifice I have personally had to make so that my disabled child can have what he needs and I know countless others in my own community that do the same. I'm curious as to how many folks who are out there calling special needs parents selfish actually have first hand experience with what they are talking about.

My guess is zero to none. I have given up so much sleep over the years that my health suffers for it. I have given up more meals than I can count. I have spent the last six years of my life driving Christian to appointments, doctors, specialists, therapies, educational opportunities, and a school for blind kids, totally on average 3000 miles per month, spending upwards of $300 a month in gas, wearing myself thin, giving up the things I would rather have been doing, so that he could get where he needed to go, get the care he needs, and have every opportunity he deserves. I have given up so many of my wants and even needs for his sake. I have given up countless hours that should've been spent with my husband, and my marriage has had to suffer. I have given up countless hours with my younger child, who deserves me just as much. I have given up times that I wanted to spend with my friends, and have had to place friendships on the back burner. I have given up my peace, stressed to the point of vomiting, so many times while I sat in OR waiting rooms waiting on his surgery to be over or waiting on phone calls from higher ups who get to make decisions about Christian that I don't get a say in. I couldn't even guess at the extra expenses that we have incurred because of Christian's medical and educational needs. Thousands upon thousands. Not to mention the fact that I had to quit working to stay home and care for Christian since we couldn't put him in a day care. Not that I'm complaining, I have loved staying home with him and would much rather be with him than at a job, but it sure does make finances tight.

And I am not special in that respect though. It's not to brag, but to just show the reality of it. Every parent of a special needs child that I know does this exact same thing. They give up careers, marriages, friendships, their entire lives, to ensure their child has what they need. And the thing about them all is that they don't complain about it or regret it. In fact, they all say they'd do it again if they had to, because their child is worth it. And, none of them consider themselves special. They are simply doing what it takes to care for their child properly. It just so happens that their child needs a lot more care.

I'm just not sure how anyone could see a parent of a special needs child and see selfishness. I've heard people say, "You only kept your disabled child so you could fulfill your selfish desire to be a parent," I can't even understand how anyone could use an argument that is so illogical. If someone just wants to be a parent, why wouldn't they abort the disabled child and try again for a child who won't cause so much emotional, mental, physical, and financial strain? The truth is that human beings are not disposable. This isn't Sparta. We shouldn't just toss out the children deemed "too weak" or "imperfect." And yet, some basically glorify the same thing in our society don't we? We call killing "compassionate" and tell ourselves it's "for the child" to ease make it sound not as terrible as it is.

Moving on, let's tear apart the way of thinking that causes people to make such silly arguments as the one I just ripped to pieces above. Let's just be blunt here. No use pretending it is something it's not. Call it what it is. There are people who actually think that being dead is preferable to having a disability. The only thing I can tell you here is this: If you don't have a disability or if you are not intimately acquainted with someone who does, you really can't make an educated decision in that area. Go find a disabled person and ask them if they would rather be dead or have their disability. If you are hesitant to go up to someone and ask that question, ask yourself why you hesitate. Is it because maybe, you realize that it might be offensive? Well, it is. Mostly because it's ignorant to assume that a disability is worse than death. Ignorant literally meaning that you lack knowledge. So, educate yourself. Go talk to someone with a disability. Get to know them. Learn what their life is like, really like, and then maybe you will have a better understanding of this subject.

Let's discuss this suffering thing now. Name me everyone you know who is currently suffering with a disability. Ready, go. .................

Yeah, my list is about as long. People with Down Syndrome are not suffering. People with vision impairments are not suffering. People missing a limb are not suffering. People using wheelchairs are not suffering.When I think of "suffering" I think of people going through chemo treatments, and the havoc chemo and cancer can do to a person's body. But cancer isn't a disability. It's an illness. Chemo isn't a disability either. It's a treatment for cancer. Either of those might cause a resulting disability, but they aren't one. The person isn't suffering because of the disability but because of an illness or it's treatment. I think of someone who was just in a car wreck and how much pain they are in, the surgeries they might have to have, the broken bones, bruises. That, I would classify as suffering. But a car wreck isn't a disability. It might cause one, but it isn't one. It's an accident. And the car wreck is what caused the suffering, not the resulting disability. See the difference?

That's not to say that some of the things people with disabilities might go through don't stink. Many kids with Down Syndrome have to have open heart surgery. That is painful, no question. However, many kids without Down Syndrome have to have open heart surgery as well. The thing is, suffering, pain, hard things, aren't reserved for folks with disabilities. Suffering isn't something exclusive to the disabled club. People without disabilities go through sucky things too. People with vision impairments are not suffering from a vision impairment. They are LIVING with a vision impairment. Yes, it does suck sometimes having to navigate a world made for people who can see when you can't. I know this at least second hand from Christian. But does that equal suffering when he trips on a curb because he can't see himself approaching it? No, he tripped. He didn't suffer. I trip sometimes and I can see the curb coming. That isn't suffering. He is actually incredibly happy, loving, and cheerful, and when he trips, he picks himself back up and keeps going. Having a disability does not equal suffering, but, watch out, sometimes it causes tenacity and instills incredible strength.

I can explain one way having a disability does equate some secondary suffering. Social stigma. Can you imagine that just your appearance causes people to make a snap judgement about your value,your worth, what you can contribute to society, whether or not you should be ALIVE? Can you imagine a world where you are bullied simply because you look different, or walk differently, or do things slower than other people; simply because you aren't like everyone else? Well, welcome, because this is the world we live in. Having a disability automatically labels people in our society as "less than," less deserving, unequal, unattractive, awkward, unworthy, avoidable. Over something they didn't choose and have no control over.

That does create suffering among people with disabilities sometimes, and still, it isn't suffering caused by the disability. It's caused by people who choose to look down on or bully or stigmatize people with disabilities. The problem is the bullies, not the disability. The disabled folks can't stop being disabled, but the bullies could stop being jerks if they so chose. In other words, that is one type of suffering that could be ended immediately and forever if people would simply choose to end it.

Finally, I want to talk about just how little of a burden people with disabilities are on society. I was sitting in a Tennessee State legislature health sub committee meeting a few months ago, and a doctor was speaking. A bill's fiscal impact was being discussed. The topic of the bill isn't important at this point and I don't want it to distract from the issue at hand, but what he said rings true. A legislator said "When we are talking about human lives here, money can't be the most important consideration. Yes, we have to think about it, but it can't be priority number one."

I have heard so many times that Christian will be a "burden on society" because he will always live on government assistance. The funny thing is, people who are so uneducated to actually believe this don't realize that blind people can have jobs too. So can people with an array of other disabilities. What on earth makes people think that having a disabilities automatically means a person can't work? Christian is a higher belt in karate right now than most of you reading this, so how can you ever say "He can't" anything? Sure, there will be jobs he can't do. He can't be a NASCAR driver, or drive a taxi or be a surgeon, but I can think of a thousand jobs he could do! He could follow in my footsteps and be a lawyer if he wanted. I actually know a lawyer who is blind. We have never told Christian that he can't. He has no concept of the things he can't do! And it certainly isn't anyone else's place to start putting junk like that in his head right now. He can and he will, and so do so many other people with disabilities every single day.

And why is money the only thing people every consider when they think about what someone will "contribute to society?" What did Shakespeare ever contribute to the world financially? Picaso? Anne Frank? Mother Teresa? Mozart? Surely you are picking up what I am putting down here. Money isn't the only thing people can contribute to our society. There are so many people with disabilities that have done amazing things for our world, and surprisingly, some of the people I mentioned above had disabilities. Christian contributes joy, love, happiness, and completeness just to our family. I am sure so many other people could also name ways in which Christian has enriched their lives. (Anyone who wishes to share what he has contributed to your life, please feel free to do so in the comments section of this post if you'd like)

Overall, I think I can summarize everything I've said above with this: If you can say that a person with a disability should have been aborted or that they are better off dead or that they are suffering, then you obviously don't know anyone with a disability. You are simply uneducated, and so, I encourage you to get out there and meet someone with a disability. I promise you it will change you for the better.

Saturday, March 18, 2017

To My Child Who Lives in The Shadow of His Brother's Disability

Chandler, my child. My wild one. My all-boy, car loving, star wars obsessed, sweet, three-year-old.

You have spent your entire life living in the shadow of Christian's disability. It's all you've ever known. You have slept on hospital couches, ridden literally thousands upon thousands of miles to make Christian's appointments, and spent most of your time as second string to Christian's internet popularity.

You have sacrificed so much to be so young. You have given up a "typical" childhood. You have given up days spent with "just the three of us" as nurses come in and out of our home all week to care for Christian. You don't act like the "baby" of the family, probably because you don't get to be the baby. You have had to grow up so fast. Your brother has needed you. I have needed you. To be more independent. To help out. To carry your share and,, it literally hurts me to write this, but part of Christian's share, too. Because Christian can't.

You have been measured and compared to your big brother for your entire life. Christian was never into things like you were as an infant. Christian would never think about getting into the stuff you have. We fought so hard for Christian's first steps that the day they happened was a celebration. The day you took your first steps in the front yard of our home one hot June morning, wearing that yellow shirt with the little crab on it, will forever be imprinted in my mind, but no one else seemed to make a fuss. So often people have approached us in public, doting over Christian, drawn to him or recognizing him, fussing over how wonderful he is, only to finally turn to you before they walk away, almost as an afterthought that it would be rude not to speak to you too, and ask what your name is again, because they forgot; or just call you "Christian's little brother."

You have spent so many hours in waiting rooms and parked cars while Christian was in therapy, hundreds at least, instead of playing. You didn't really fit in at therapies as a typical child. You weren't welcomed in the therapy rooms, but it wasn't fair for you to sit in a waiting room hours a week either. You were just sort of stuck. It broke my heart that my hands were tied and I had to choose between getting Christian's therapies or giving you necessary time to play. I knew which one I had to choose, but it wasn't because I chose Christian over you. I hope you know it was never Christian over you.

You learned patients at such a young age, waiting while I tend to Christian's needs first, even if you needed things, too. Sometimes his medical needs couldn't wait. Sometimes I had to choose to do a tube feeding or take my incontinent five year old to the bathroom again rather than just sitting in the floor and playing race cars with you. All you wanted sometimes was for me to sit and play race cars with you. But you waited.

One of my all time favorite photos of Chandler!
You had to grow up quicker than most kids. You didn't get to just be a kid. You had responsibilities right away, from the moment you were able to carry them. You had to watch your brother endure painful procedures and lie, bloody, in hospital beds, too young to even understand why it was happening. You had to step up, do and learn things on your own, because I was overwhelmed with teaching Christian.

In all that you have endured in your young life, you have the right to complain and feel cheated. But you don't.

Brothers Forever

You wake up every morning with a "Mama! It's a hot, sunny day!" even when it's cold and rainy outside, because for you, the sun shines even on the dark days. You are the sunshine on the dark days.

You have reason to be unhappy, but you aren't. Your joy is so radiant that it infects others and you are desperate to share that joy everywhere you go. Joy for you is so simple. It looks like a Hotwheels Car, a cup of chocolate milk, or bowl of spaghetti. As surely as your eyes open in the mornings, your mouth begins to turn up in a smile. Joy is your default.

Picking at each other and loving it
You have a deep understanding of what it means to be a family, to care about each other and work together for the good of everyone. You genuinely love people and always see the good in others. Your friendliness and acceptance of everyone you meet is admirable. You can't wait to show others your race cars, anxious to share your joy. You want nothing more than to share with others and love them.

You are wise  beyond your years, an old soul. I guess you've had to be. You've had to play the role of big brother, to guide Christian since he can't guide you. You've had to fill shoes that were never yours to fill, and yet you take it all in stride and do it anyways.

I'd be lying if I said I didn't sometimes feel guilty for all that you have had to go through at such a young age, for all you have sacrificed for your brother and for me. You deserve the world, and I want to give it to you, but sometimes you end up with so much less. It isn't fair. It's definitely not fair. You certainly didn't ask to be the younger brother of a little boy with so many extra needs.

 But instead of letting it run you down or make you bitter, I am watching you turn into the most amazing young man. I feel honored that I get to see you developing into someone who is so kind and compassionate. You have let your short life experience refine you and shape you, and you are going to be the most amazing man one day. Chandler Tate Buchanan, you aren't living in a shadow. You are making your own sunshine out of darkness.

I'll show you the way Brother!

Tuesday, March 7, 2017

Feeling Defeated: An Update on The Nursing Appeal

Photo Credit To Lacey Orchid Photography
I received the appeal packet for Christian's nursing appeal today, have read through all 200 pages and I am feeling defeated before this appeal hearing even happens. Not because Christian doesn't qualify or need the nursing hours, but because the way the rules are written, they make it nearly impossible to overcome. He not only qualifies, if Christian doesn't qualify, you would be hard pressed to find many children who did.

Tenncare is riddled with injustice and unfair practises in their appeals process and decisions of care. The appeals process is set up to work in favor of the insurance company. It would be a miracle or luck for me to win this appeal, let alone someone who isn't an attorney. The basis on which they decide care is so intertwined with literal word vomit that no rationally thinking person could have come up with it, and no average, low income family trying to understand their rights could ever possibly make sense of it all.

Anyone who takes the time to read the Tenncare Rules can plainly see that Tenncare was not set up with the best interest of the children they serve in mind. It is written to place as many obstacles in the way of receiving care as possible. And we all know why that is. Money. It's about money instead of the child, and I am so disappointed in Tennessee and our government for letting Tenncare get to this point, of being such an obstacle in the way of care for children who need it, rather than

As medically complex as Christian is, there are still hurdles that he doesn't just plainly overcome, because Tenncare made sure that even the most disabled, medically complex child who needs the absolute most care required still has to prove things that they can't prove.

I am sick and tired of proving to people that Christian needs care. Look at him. Look at his list of a dozen different diagnoses. Look at his list of surgeries and hospital stays. Look at his list of specialists. It's not rocket science, but it is medical science. It's also not a accounting, but Tenncare seems to be crunching numbers on this one. My son isn't a dollar figure to the bottom line of a company. He is a human being, who needs medical care that Tenncare makes me jump through hurdles to get AND threatens to take away at the drop of a hat when they arbitrarily decide he doesn't need it any longer. A decision they came to based off some person who doesn't know Christian, doesn't know anything about his needs or his daily life, who comes to our home for one single hour and decides that Christian somehow isn't "that" disabled.

I am SICK of it. I am angry. I am frustrated. I am disappointed. I am man. Dang it, I am furious!!!!

Christian losing his nursing care means that I will have to look into someone who isn't a nurse to care for Christian for those hours his nurses were caring for him. That means that his risk of injury from having an unskilled person caring for him goes up, dramatically. It means I either never leave his side, or leave him with someone who isn't trained to care for him. It's maddening.

It also means that Christian won't be able to finish out his school year at the schedule he's going now. We will have to cut a day of his school, most likely, as that's the only way I can figure to make the hours work as proposed. And it certainly means that Christian won't be able to attend school full time until he is independent and self reliant, so maybe by high school?

It also means I can kiss goodbye my legal career any time soon. Which means my family will continue to be a single income family who falls within the low income bracket. Which means that we will have to depend on services like Tenncare for a much more extended period of time than we could have. Because that's cost effective, huh?

I am still going to go through with this appeal and I am going to fight my tail off. But I SHOULDN'T have to! I should.not. have, to!!!!!! The medical records speak for themselves. His personal doctor speaks on my behalf and thinks it's crazy to take his hours, and I quote his pediatrician, "If Christian doesn't qualify, who would?!" Exactly. My point exactly.

Friday, March 3, 2017

What Nursing Means to Me

Christian and his nurse, Carolyn at school.
Shared with permission
Some of you guys have been keeping up with the issues we've been having with her insurance trying to cut our private duty nursing hours and I wanted to discuss a little about our nurses.

Some of you might be wondering what exactly private duty nursing even is. Everybody's familiar with nurses, but some people aren't aware that there are situations where a nurse can work in a person's home to help care for that person. The reasons that a person may need a nurse in home are expansive, but the value that an in home, private duty nurse adds to a patient's life is consistently invaluable and backed up by research.

Although I don't need a medical journal to tell me so, science and medicine prove that not only is it more cost effective to have a private duty nurse in the home for certain patients who need that type of care, it is also better for the overall health of the patient and will prevent many more hospitalizations and other serious adverse health events.

Now, all that is the medical side of it, and the medical side of it is why we have a nurse in our home five days a week. Christian's medical needs are complex. Caring for him is a huge job. Having a private duty nurse in our home who can go to school with Christian and accompany him to his various therapies and other things that he might need to do, not only guarantees that Christian is well taken care of and safe when I can't be there, but it takes a tremendous amount of weight off my shoulders.

Everybody wonders how I made it through law school with so much on my plate. Everybody wonders how it wrote a book with so much on my plate. Everybody wonders how I do everything that I do. The answer is threefold: lots of Jesus, lots of coffee, and private duty nursing.

There are so many battles that special needs parents fight. There's a constant struggle to be everything to everyone and do everything that's required of you and it's almost impossible not to stretch yourself so thin that you eventually break. 

Because of private duty nursing, I haven't had to struggle with trying to give Chandler enough attention because his brother require so much of me. Our nurses help me care for Christian so that I am able to care for Chandler, too. Our nurses allow me to go places when I need to, doctors appointments, classes, meetings, whatever it may be, because I have someone who is able and capable of caring for Christian. I don't have to struggle with leaving him with someone who isn't qualified to care for him properly or never letting him out of my sight. 

Private duty nursing has allowed me to hand over the job of "nurse" to someone else for a while, so I can just be Christian's mom sometimes. It has allowed me to breathe when the weight gets too heavy. It has allowed me the confidence of knowing that someone is standing in the gap for me who wants the very best for Christian, who I can and do literally trust with his life, and feel completely safe to do so. These women who nurse for Christian, I have literally asked them if they would take care of my boys for me if something ever happened to me. They are the ones I went to about the worst case scenarios of life. 

They are nurses, but they are so much more. They are friends. They are people that both my boys love like family and know no difference between them and a blood relative. They are trusted partners in raising my boys and in this crazy life of mine. 

Without Christian's nurses, I wouldn't be able to do even half of what I do now. Christian couldn't go to school without a nurse. He simply couldn't. I couldn't leave Christian long enough to work. I couldn't make these trips for my book. I wouldn't have been able to study for the bar. I wouldn't have been able to go to class when I was in law school. My life would be so much more consumed by providing Christian his necessary medical care that I wouldn't often get the chance to just be his mom. And i certainly wouldn't have nearly as much time to pour into Chandler either. 

This is why the thought of losing nursing hours is so terrifying to me. It's not that my children wouldn't be well taken care of without the nurses. I would do whatever I had to do to take care of my children and do it well. It's not that I couldn't do it alone. The fact is, I shouldn't have to. No special needs parent with a child who qualifies for private duty nursing should have to do it alone.

Thursday, February 23, 2017

Gifts Within The Pain

It's been six years since we welcomed my sweet Christian Taylor into this world.

It was such an exciting and terrifying time.

I remember walking out the front door of my house that morning I was to deliver, and thinking how different my life would be the next time I walked through that door. Having a child is such a huge life changing event anyways, but I really had no idea just what was to come.

We walked into the hospital that morning and went through all the routine things, paperwork, getting the IV hooked up, and all that. The usual nerves were of course, already set in, but there was certainly an unspoken element of fear in the room about what was to come. The unknown can be scary at times.

My parents showed up a little later before time for the C-Section, and we all stayed in the pre-op room. We really did talk casually and joke around. We were all scared, but still were calm enough to just spend time together. Honestly, we all knew that freaking out or sobbing or going wild wasn't going to help anyways. We didn't know what the outcome would be, so we figured we might as well have stayed calm  and kept the atmosphere peaceful for the time being. There would be time to freak out and sob and throw our fits later if it came to that.

A few hours seemed like an eternity, but I was finally taken to the operating room and given my spinal. (SO fun, by the way. Ugh!) Chris was brought in and I just laid there for the next bit while the doctors did their job.

The moments after he was born were nothing but a rush and a blur. There were people everywhere; three anesthesiologists at my head, two surgeons working on me, a plastic surgeon there working on Christian, nurses for me and for Christian, and so many others that I couldn't tell you who they were.

I began to hemorrhage while the doctors were closing me back up, so the already chaotic room really became busy. It was like something you'd see on an episode of a hospital TV show; doctors calling out orders for medications "stat," and tons of other staff racing all over the room. Meanwhile, I was careening my neck to try to get a glimpse of Christian as they assessed him. I couldn't see him. I wasn't allowed to touch him. No one would tell me how he was.

Chris had been over checking on him and came back to me, crying. The mix of medications coursing through my body along with the chaos of the operating room made my head swim. I was sort of just lying there, at the mercy of everyone, waiting to hear about Christian and waiting to be sewn up so I could get up and get to my baby. It was almost as if I was dreaming, like all this couldn't be real. It was like I was in a fog, really. I remember looking down at my cell phone once, trying to text someone to tell them that Christian had been born, and not being able to make out the buttons to type. I was in the middle of a storm, but I was paralyzed and unable to do anything to seek shelter or get out of the downpour. I was being swept wherever the wind blew me, wherever the nurse wheeled me to. I had to wait for all the medications to wear off before I was able to be fully coherent and to myself.

I was powerless.

That is a good way to describe that day. Powerless. Everything that happened was out of my control. I would ask to hold my baby and be told no. I would ask for my pain medication and get a snooty nurse who told me she would get to it when she could. I would ask to be wheeled to see Christian in the NICU 1/3 of a mile away on the other side of the hospital and would be treated like a burden; like I wouldn't have taken myself, dragging my IV and catheter behind me, if I could have. I couldn't even get up out of a bed on my own for a few days. I was powerless.

There was so much pain that day. More than I could ever adequately put into words, but in the midst of that pain came the most overwhelming sense of love that I had ever experienced. In the middle of some of the darkest days of my life shined the brightest of lights. February 18th, 2011 was the day that I began to learn what it truly looks like to have joy in the midst of pain. It was the beginning of a journey where there would be so many days where I was terrified to take another step, but where I compelled to continue moving forward because I knew Christian needed me to. In so many of the photos I have of Christian's first few weeks of life, I was smiling. I was smiling because I was happy. I was holding the most beautiful baby I'd ever seen and he was mine. And if I had to go through all the pain a million more times to get to be Christian's mama, I would do it in a heartbeat. No question about it.

Sometimes, through our deepest pain, God can bring the most beautiful gifts. My gift on February 18th, 2011, was Christian Taylor Buchanan.

Thursday, February 16, 2017

At Their Mercy

Last Friday, I was driving to my next destination on a usual day of errands when my phone rang. I'd already dropped Christian off at therapy with his nurse, ran to kroger to pick up half of what I needed since they were out of the other half, and planned when and where I would go to the next Kroger to get the rest of my groceries. I picked Christian up from therapy and headed to yet another grocery store with the specific things I needed for Christian' s diet. My mind and body were exhausted. It WAS Friday after all and it had been a long week.

Chris had found out earlier in the week that he lost a large bonus at work that we were counting on, the boys had been battling a nagging cold all week, not sleeping well. We were all just over it. 

I answered my phone and it was Christian's nursing company on the other end. To my surprise, they had just received news that Christian's insurance had decided that he didn't need all of the nursing hours that he had, the amount he'd had his entire life. I was floored. My lawyer mind started going a million different places, and questions started falling out of my mouth. The nursing company couldn't tell me much. They were actually surprised that I hadn't heard about it yet. The best part was that Christian's nursing services were going to drop down to almost half of what he was currently six days. 

So, after several more hours of errands and dragging the boys all over town, we finally got home. I make all of Christian' s food, and he was almost out, so I had gotten groceries to blend him up some more. The nurse and I started on that while I made some phone calls to the insurance company. I got three different folks on the line and got three different responses to my questions, of course.

There just wasn't much anyone could tell me, or much for me to do. So, here I am, starting to go through yet another insurance appeal. An appeal is basically telling the insurance company that you disagree with their decision and why they are wrong.

A very kind friend offered to help me write the appeal since I haven't done it enough to really hone the skill. The craziest part of it all was the time crunch I was on. Christian stood to lose his nursing hours in 6 days. Generally, you have 30 days to file an appeal, and really, I did have 30 days, but if I didn't get an appeal filed and also convince the insurance company that this was important enough that they needed to expedite their decision, then the nursing hours would automatically drop that following Saturday. #MissionImpossible

Nursing care is so important for Christian's well being. Christian qualifies for nursing care because of his feeding tube and only because of his feeding tube. Blessings in disguise, right? You can't sit him down at lunch time and put a pb&j in front of him and expect him to chow down. He can't. Physically and mentally, he can't, and he won't. Feeding aversions and challenges are such a complex thing that I won't even try to explain it all here, Maybe I'll leave that for another blog post, but suffice it to say for now, that you can't "make" Christian eat. You can't "Make" anyone eat. And Christian would literally starve to the detriment of his health and possibly death without his feeding tube at this time. The saying "They'll eat when they're hungry," simply doesn't apply to Christian.

Having a nurse ensures that Christian gets to eat wherever he's at. His teachers at school aren't trained to use a feeding tube. His teacher now, who is so intelligent when it comes to teaching blind kids, has no clue about how to use Christian's feeding tube. So, without someone able to feed Christian at school, well, that leads to the obvious: Christian can't go to school. Christian's nurse accompanying him to school means that Christian gets to go to school like everyone else.

Christian and his button! <3

Christian's nurse also ensures that some of the weight is lifted from my shoulders. I know I speak about Christian as a very typical kid, and in so many ways he is. But the reality is that Christian is medically complex. I had to list out his diagnoses for this appeal, and also had to get a letter from his pediatrician about the nursing care. His pediatrician sent with that a list of the diagnoses on file at that office for Christian. There were about 15 total diagnoses. Each one of those diagnoses takes a a specialist, a plan of care, treatment, and management. For example, Christian's cleft takes a craniofacial plastic surgeon specialist. It requires a plan of how to go about doing each surgery, coordination of care with us and with other specialists that might be involved, like ENT, and what surgeries will be done and which will be avoided. It takes actual surgery, being the treatment, and management, meaning lots of follow up appointments, planning, and just generally keeping the ball moving and Christian's care in that specific area going. Now multiply that by 15.

Christian is, as medical terms go, total care. He can't go to the bathroom without help. He can't feed himself. He can't even begin to bathe himself. He can help dress himself, but can't even realistically pull the appropriate clothes out of a drawer, or button up a shirt. He can't put his own socks on. He can't turn a shirt to the front to slip it on the correct way. He can't go anywhere outside of our home without someone guiding him. He can't walk out our front door without someone holding his hand to help him down the stairs. And the list could go on and on and on about all the things Christian can't do. Christian can do so many things, but self care is one that he simply cannot.

Nursing ensures that Christian always has that assistance that he needs. I can't be everywhere all the time. Chandler needs me sometimes too. I have to work. I have to clean. I have to go to my own doctor's appointments. I can't leave Christian with a sitter, or with a friend, or even with my own parents, for longer than it takes for him to get hungry. He has to eat, and he has to be with someone who knows how to feed him. I mean, I do need to eat and bathe occasionally myself, too. (haha!) But any special needs parent can attest that when you have a total care child, it isn't always practical or doable to actually shower daily or eat regularly. Heck, that's not even doable when you just have small children! #IDidn'tEatDinnerLastNight #TrueStory

The difference is that small children begin to grow and become more independent and so that stage doesn't last for long. But Christian is still total care at almost six years old. His self care skills will get better, lots better, but it will be a long time from now.

Our nurses are in our home to take care of Christian, but they indirectly ensure that I have my sanity and mental and physical health in tact, as well.

Losing nursing care, even part of it, would be a huge blow to our family. Everyone asks how I do what I do, and I always say, "I have nurses!" They shoulder so much of the weight for me that it's incredible. And we have incredible nurses who make sure Christian is always clean, fed, and taken care of. They love him, and it shows in their care for him. We have wonderful nurses who are invested in their relationship with our family and who lift my burden by being able to care for Christian when I can't or need help.

It hurts me so much to constantly have to be fighting someone for what Christian needs. I am so tired of having to prove to someone that Christian needs the things he needs. We aren't faking his disability. I wish we could say he was fine and didn't need nursing care or a feeding tube. But we can't, obviously.

I am so tired of being at the mercy of people whose job it is to sit behind a desk and shuffle through paperwork that paints actual human beings as mere words on paper, taking away their humanity. It's not the person's fault. They are just doing their job. It's the nature of the beast, I suppose. But at the end of the day, after they have cut someone's nursing hours, or coverage of medications, or refused to cover a medical procedure, they go home and their life is the same as before they used that rubber stamp. But for us, that simple rubber stamp that they don't even give a second thought to, it is life changing for people like us us. Losing nursing care would literally be life changing for us. It would rock our world. And yet, here we are, at their mercy, and praying that the paperwork I sent them will convince them that the last bit of paperwork they saw was wrong, and that the human being behind that paperwork is a real human with real needs, who really needs what the paper says he needs.

So, the battle continues with this insurance appeal. The appeal was submitted last week and so now we just wait. They did agree to continue our nursing care hours during the appeal process, called continuation of benefits. i.e. They agreed to allow our nursing benefits to continue while they make a decision on the appeal. If they don't agree to give us an expedited appeal, then the decision can take up to 90 days. If they do agree to one, they will make a decision in 3 days. So, when I know more, you will know more!

Please pray for our family during this appeal process! We are facing a giant, so to speak, and I am praying that we win this appeal. If not, I am not sure what we will do. I know we will figure it out, and I know that God is with us through this whole process. This is a mountain we will climb and get across, and when we get to the top, we will be thankful we climbed it, because otherwise we would miss the breathtaking views.

If you are interested to know how a tube feeding is done, I posted a video demonstrating how Christian gets a tube feeding that you can watch here:

Sunday, December 4, 2016

Sunshine after the Rain

I have been a mother for almost 6 years now, and one thing motherhood has taught me is that raising kids is full of highs so high you think it can't get any better, and lows that make you feel like you're scrapping the bottom. And sometimes all those highs and lows can come at once. 

One of the hardest things so far about raising Christian has been the fact that he is beginning to desire independence from me, but independence doesn't come so easy with a child who is blind. Don't get me wrong, that's part of it. If we raise kids well, then they won't need us one day, right? As hard as that is, it's just part of it. And as mothers, our hearts break and rejoice all at once as our children gain independence and come into their own. But with Christian it's different.

He is at the normal stage in his development where he desires independence. He asks to do things himself with his sweet little words, "Want Christian to do it." He lets go of my hand as we walk, hoping to make his destination on his own. He asks to do things that his lack of vision just won't allow him to do without assistance. He struggles to dress himself, feed himself, figure out a toy or device with only his hands, figure out other people without the use of seeing their body language or facial expressions. It's all a challenge.

His vision impairment simply does not allow for as much independence as Christian wants at this point. It's as if his mind knows what he should and could do, but his body won't let him. And I have to watch him fight against it every day.

How i wish i could allow him independence when he asks to do things on his own. But not everything is safe enough for that. How I wish he could let go of my hand and not concern himself with the dangers of falling, or sharp edges on tables, or steps that he can't see coming. The things a 5 year old shouldn't be concerned with. There is time to worry when he's older. This age should be a time of wonder, exploration, and adventure unhindered by fear or struggles.

How I wish I could point up at the sky and show him a star so that his little mind could grasp it. Explaining a star to a 4 year old who can't see it is not easy to do in a way that his young mind can understand. How I want to give him the world, but his world stops at the tip of his fingers, and there is only so much I can do to compensate for that, although I try desperately. But it's just impossible to place a star into his little hands.

Every day is a reason to rejoice. Every day Christian does something that surprises and amazes me. Every day he does something that doctors once said he'd never do. Every day he accomplishes something that at one time my dreams of him ever doing had been crushed. There are so many things to be thankful for and so many more happy moments than sad. There is so much laughter and joy in this little boy.

But I won't ignore the sad moments. I will listen to what they have to teach me and I will love my little boy with every ounce of me. I will give him the world as far as I am capable and I will teach him to understand the hard moments, too. I will teach him to learn from them and grow into the most amazing person he can be. I will teach him that the measure of a man isn't how many times they fall down, but how many times they get back up. I will teach him to always get back up.

I wish we didn't have to deal with these struggles. I wish Christian could see, so badly. The holiday season is especially hard, because Christian can't see so many beautiful things that come around at Christmas. Christian always makes the holidays so special because he loves Christmas so much, and his joy is just so contagious. He doesn't care that he can't see, but boy how my mama heart cares. 

I wish Christian's life was as simple and easy as possible. But since I can't control that, I will control what I can, and that's how I respond to the hardship. I will make the best of what we have and I will celebrate the simple things and love as deeply as possible. Because I wouldn't trade Christian's sweet Eskimo kisses for anything in the world. He is worth every heart ache that raising him brings.

There's a saying that sometimes it takes the rain clouds for us to really appreciate the sunshine, and how true that is. How sweet our sunshine is, because we have seen the rain.