Dear Neurologist

Good news! We are going to Phoenix Thursday. This is so much better than Wednesday because Gabe's birthday is Wednesday and I have the big ultrasound on Thursday morning at the very hospital that I basically live in right now, 2 floors up. Now that the transport is Thursday, we can wait until after my appointment and then go up. Then Manny and Gabe will come up Saturday and we can celebrate Christian's 1st birthday!

It will be bittersweet, I won't lie. We were going to have a huge blowout in true Shauna&Manny fashion. I couldn't wait to get him a cute birthday outfit and let him dive into his cake. These thoughts make me sad and unexpectedly emotional. It tends to creep on me like that.

But we have bigger things to celebrate...he's alive! And we HAVE a 1st birthday to celebrate. For that I'm grateful and it's an even bigger celebration for us. It will be a little less boisterous and it will be just us but that's all he needs for now. We'll have plenty of time for big celebrations.

Christian had a few issues today. He seemed a little more tired and his muscles were more stiff. He threw up a couple times, once in the morning and once in the evening. We're doing some gradual adjustments to his feedings so sometimes he doesn't tolerate it well. But there's no pattern. He mostly tolerates the feedings and then out of blue he won't. I felt so helpless because when he threw up in the evening his eyes got red and two tears fell down his cheeks. I wish it wasn't like this for him. So I don't know if he was having an off day. Maybe he'd rather just ditch that pediatric formula and have some cookies.

And then the neurologists came. I don't know if you can tell how I feel about them but I really wish they'd stay away sometimes. In fact, if I didn't have to see or speak to them, I'd be fine with that. I'd rather rely on my faith than the worst case scenario they spout as doctrine. So to deal with this I've written a letter to put things in perspective...

Dear Neurologist/Neurologist Resident,

I'd like to thank you. I'd like to thank you for doubting my son because he has proven you wrong from the time he arrived at UMC. I'd also like to thank you for speaking to me about "considering his quality of life if...say...his heart should fail...would we want to revive him?"

From that moment on I knew where you were coming from. You are coming from a place of worst case scenario. You are coming from a textbook, a case study, maybe a patient you've witnessed. I am coming from a place of faith and hope and I know that's foreign to you, but it's gotten us further than your "considerations" for my son's quality of life.

You've poked and prodded and looked doubtingly at my son. Thank you for that because I challenge your doubts with belief. And it looks like Christian's up for the challenge. You've found things you think he's not doing and then something in his little brain wakes up and he meets your challenge. But you're not satisfied, you won't admit progress, you want to challenge him again. "Well, we like to see this and he's not doing this..." Thank you for that because with your disbelief, my belief is strengthened. This has taught me patience because I've seen you do your assessments with a straight face and no emotion as if you are working on a cadaver. And, you know, with time Christian will prove you wrong. He will do all of the things you "usually look for." I have NO doubt.

And thank you for chalking up all of his movements to primitive reflexes and finding a way to link these primitive reflexes to why his brain isn't working. Because now I know that any purposeful movements, which I have had the joy of witnessing, are mine to treasure, not yours. His little brain has so far to go and I don't much tolerate people who don't believe in my son's ability to recover. So thank you for showing yourself because now I know how to weed you out. Oh yeah, and thanks for coming to "check" on Christian while selling your practice for follow ups. Now I know exactly where I won't be taking my son.

Thank you for NEVER acknowledging his progress. Thank you for trying to get him to respond and "perform" for you right before his nap when he is visibly trying to go to sleep. And, of course, thank you for always coming to check on him when he's sleepy, asleep, or generally just tired of you. All of the above is why I don't put much stock in what you have to say.

Don't get me wrong, I know you've put in your time at your respective facilities of higher education but we are working on two different systems - you have faith in medicine and I have faith in God. And, don't get me wrong again, but when you come visit, yes, your words stick with me all day. But this just makes my faith and belief stronger. And it makes every one of his victories that much bigger and that much sweeter!

You've challenged my faith, and it's just grown stronger because every time you put limits on him, Christian rises to the occasion and shows you he's still fighting.

You've challenged my belief by assuming he wouldn't make it and he's MAKING IT! My belief is stronger than ever.

You show me your book of medicine and I'll show you the miracle of Christian. Something written by man versus the miracle given to us by God.

Thank you for giving us the bottom because we have no where to go but up. And that's exactly where we intend to go!

Sincerely and with great faith,
Christian's Mama