Arnold Chiari II Malformation

(she loves her pulse ox...our best friend)

(daddy helping her stand in her bed)

The other day I was searching the internet and came across the Wikipedia definition about Chiari II malformation (which I've read MANY times before). It made me smile when I read the following paragraph and since it is Chiari malformation awareness month I thought I'd share my thoughts about it.

"Type II is typically diagnosed at birth or prenatally. Approximately 33% of individuals with Chiari II malformation develop symptoms of brainstem damage within 5 years; a 1996 study found a mortality rate of 33% or more of among symptomatic patients, with death frequently occuring due to respiratory failure. 15% of individuals with Chiari II malformation die within two years of birth. Among children under two who also have myelomeningocele, it is the leading cause of death". -taken from Wikipedia

James first came across this prognosis data when we first learned of the severity of Autumn's Chiari II malformation. It really upset him and I had to remind him that she was in God's hands and the dr. also reassured us that these statistics are outdated. We are now 19 days away from Autumn's 2nd birthday so she has already proven the data incorrect. It was just God's way of reminding me that His hand has been and continues to be on Autumn at all times. She's a miracle and each new day adds more and more miracles. You can give me data and tell me that my daughter will NOT do this or that but I only listen to God's Will for Autumn's life. I get asked a lot about what we've been told about "this" or "that" and how Autumn's future will be. I answer by telling what info we've been given by drs. but inside I'm just thinking, "It depends on what God's Will is for her life". We have no clue what God is going to do in Autumn's life and just pray His will is to keep her around for years and years to come and that she is happy.

My main focus for Autumn's life is that she's happy and that she glorifies God with and through her life. This goal is where I struggle on what to do for Autumn's future. At times I feel like I should be doing more for her. I feel like I'm suppose to be researching "cures" for her medical issues. I feel like I'm suppose to be pushing for more therapy for her. I feel like I should be on my knees EVERY night praying for healing miracles. I read ALL the things other SB parents are doing and wondering "should Autumn be doing that", "am I failing her and not doing enough for her future", "is she going to wish I was a more aggressive mom and blame me for not doing EVERYTHING possible" I though sit with the thought that God's got it under control. I feel like no matter how much or how little I do and push Autumn that she's going to do exactly what God has already designed and planned for her life. Is this peace or laziness on my part? Just like some of the parents who wonder why and what they did "wrong" to have a baby born with SB....I've NEVER wondered that...I DEEPLY feel I have a baby with SB because #1:God loves me SO much that he wanted to bless me with the most incredible child and #2: He knows my stubbornness and has used Autumn to discipline me in the areas I've been refusing to grow in to become more like Him. I honestly do NOT care if Autumn walks or not...legs do not make a person. I care more about her heart/soul than I do about her looks, abilities, etc. I wonder though how Autumn is going to view her life...will she care that she can not walk or will she have accepted herself just the way she is and be happy! I struggle with how to prepare for her future because our society feels if you are not able bodied you are less of a person but ofcourse that is not true (quite opposite).

Just like our decision not to give Gage growth hormones....people always question..why not, it will help him fit in more because he won't be "short" and it's harmless. Harmless (is questionable to us) BUT what it that teaching him if we decide to "change" the way God made him just so he can fit better into what society sees as normal. Teaching him that God made Him perfect and wonderfully is more important to us than him fitting in with his peers. Will he hate us in the future for it? I hope we raise him well enough that he loves and accepts himself just as we do and how God intended him to be. There is no medical reason he needs them...it's all for social reasons.

Back to Autumn, I want to give Autumn opportunities to excel in her potential but what is too much and what is too little? How much do you leave it all up to God's grace and how much do you intervene? These are things that I struggle with..what's the right way...is there really an answer to my questions? This is where I just do what I feel is best for Autumn at THIS time and what God has called us to do for NOW.

My prayer is God will fill her heart with His grace and she will have a peace and understanding of why God chose her to be extra special. I pray she embraces that God designed her with a disability to touch MANY lives. I pray she accepts the body and mind God has given her. I pray she understands we are ALL designed in unique ways and she finds ALL of her unique abilities. I pray this all happens whether she's able to walk or not, whether she's a nose breather or not, or whether she's developmentally/cognitively on the same scale as her peers or not ;)