Christian Taylor Buchanan

Christian Taylor Buchanan

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.