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Monday, July 27, 2009

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


Sarah and Mitch said...

Shauna- Christian has his perfect mommy. Someone who believes in him and is SO SO SO strong all the the for him. That your faith is unwavering is amazing, and I admire you so much. Thank you for being so strong, and for being an inspiration!!

Sarah (mcmommy2logan)

gavman306 said...

Shauna, your letter gave me chills. It is because of that faith and way of thinking that your son is here today. You are ALL amazing!! I am excited to hear all about his progresses in Phoenix, I know he will amaze everyone there too! Glad everything works out with gabe's birthday and your ultrasound...and just think about Christian's 2nd birthday!! Sorry to hear about Christian's bump in the road...everyone has their "days." I will continue to pray for him, and you and your family, you are all so strong!
God Bless!

JRose said...

I've been following Christians progress since I heard about his accident on FF.
He is such a fighter and I'm sure he's getting his strength from you and from your belief that he will get better. My prayers continue to be with your sweet little boy and your whole family. Keep proving those Dr's wrong!

Reba0729 said...

I love this letter Shauna. You, your faith, and of course, your Christian are inspirational.

Praying and thinking of you all day ever day,

Rebecca (RebaG)

Caroline said...

Christian has shown all of us what he can do and his progress! Those doctors should be ashamed. If they are going to be so negative, perhaps it's better if their attitude just flatlined and they just shut up..

We'll be thinking of Christian on his birthday!

Sarah said...

Don't ever lose faith Shauna! You are a great mama and Christian will heal!! (((hugs)))

Sarah (Rave78)

About us said...

So well said Shauna! Christian is his own person, no other like him. So how can they tell you what he will and will not do? He's making such great strides in a short time. He'll do it. Especially with a mommy like you.

-Tina (Logan and Cameron's mommy, August board)

ferfischer said...

Amen to that! You know how I feel about neurologists (at least during that time for us, too).

Lucy and Ethel said...

As one who has also had the pleasure of dealing with a pediatric neurologist who could be the same one(!), AMEN to your letter.

While I've heard there are some caring neurologists, in general they apparently cannot think outside their box of textbook jargon. If they can't explain a sign of progress when they'd told you to expect none, they either ignore it or mumble something about 'sometimes that just happens' and move quickly to the next item of pessimism.

You are wise to consider the source of doom and gloom. God is the only One who knows the outcome of this assignment, and that's where your faith will sustain you no matter what happens.

So far, it looks like Christian is more than happy to prove someone wrong :)

Have a WONDERFUL birthday celebration!

We'll all be eager to read of the tremendous progress in Phoenix -


Makenzies Miracle said...

GO SHAUNA!!! I love your letter! That is what I got when Kenzie was inpatient and I feel just like that! The box that doctors want to put our kids into just isn't right! Our God is the only true healer and if that steps on their ego then oh well!!! Keep fighting for your little man! He WILL FIGHT with you!! Love ya guys tons and pray for you all day!!

maz said...

I'm sorry the neurologists are being so negative....but you've expressed how YOU feel beautifully. I can feel your faith, hope and optimism seeping through every word....that's going to see you, your family and Christian through. Christian has just amazed us all with his progress....he'll continue to amaze. Little man. Although you'll be having a 1st bday celebration with just the family...Christian's internet aunties will be right there with you in spirit! ((((Hugs))))

Rochelle said...

Excellent letter. I hope you'll print out a copy and leave it for the Neurologists to read as you leave for Pheonix. Sometimes they need to be reminded that they don't know everything, they don't have all the answers and that their bedside manner and lack of emotional connection to their patient and the patient's family can be so discouraging (yet, as you well stated it, can be a driving force to remind us all that our faith is much stronger than their negative attitudes). I am thankful that your energy, faith and endurance is renewed. Keep fighting for Christian, and he will keep fighting, too. I so wish you could have that big birthday bash you had envisioned but I also know that celebrating quietly with family is sometimes a bigger blessing and even more special. Please give Christian a hug and kiss and tell him Happy Birthday from me and my family. Love ya!

tracyikeel said...

I saw this link on FF and am touched by your faith and your little miracle.

I said a prayer for you and Christian today and I will continue to pray that the Lord will continue to show you and your family his Grace.

Suzanne said...

Well said! I'm so glad that you're staying so positive despite the negative neurologists. I suppose they feel they should state the worst case scenario so that you can't come back in six months and say that he's not recovering like they said he would. Instead, you can come back in six months and be like look how much progress he made, he proved you wrong!

Christian's such an amazing, strong, little guy. He's fortunate to have such a strong, positive mother. Keep it up, don't let those doctors discourage you. You're both doing great!

kiera said...

This letter is PERFECT!! Through faith ANYTHING is possible!! Christian is a strong kiddo....and you are an amazing mommy!!

Dora said...

Love your letter and I think 99% of mommas who ever had the misfortune to meet one agree with you. I do not want to put them down, but they really are like that. I think they have a protocol to say these negative things so if they say something positive and it does not realise you won't come back complaining?! That could be an explanation... The main thing is that your approach to them is the RIGHT way, the ONLY way and a BEAUTIFUL way!!! Love your way with words! So take it from a mommy who they said to as well about her 1 week old son "he may not make it": He is here, almost 8 yrs old and a wonderful perfect little boy. You will get Christian back, WE have faith in that too like YOU.

Mommy2Avan said...

Hi there, I just wanted to send out my prayers! I learned about this through your sis, as we both met on Babycenter during our pregnancies last year. Stay strong! You sound like a wonderful mommy! Have Faith and this shows God is so powerful and full of Miracles!!!!

BunBun said...

Shauna, this is a beautiful letter. Christian is a strong boy who keeps proving them wrong. Keep fighting Christian! He's very lucky to have such a strong mommy. We continue to keep you all in our prayers. Lots of hugs.
Alice & Kayla

Shawgil said...

Shauna, I am moved by how strong you are, it is by faith that all of this is possible. It is wonderful to see and hear the little miracles every day and how God is healing your precious little boy. We are praying for you.

Faith & Jack

Tracy said...

Amen, Amen, Amen!!!!!!!! Your faith is so strong. What a blessing to have a mother so wonderful as you. Continued prayers and hugs.


Mel said...
This comment has been removed by the author.
Mel said...

That's right Shauna...Keep the Faith! Brain science is still so new and they are just learning so much only in the past few years. They really don't understand the full extent of what the brain is capable of and every case is different. Christian is super strong (plenty of evidence of that) and is surrounded by so much love, hope, and prayer that he has so much going for him. You keep fighting for him. We will keep praying and supporting you for him from afar. Hugs. :)

Melissa & Jaxon (August Mommies)

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