A Someone recently said to me that it takes a - special person - to raise a child with special needs. I told her, "It's actually quite the opposite... these kids make you a special person."
Exactly 3 weeks ago, our Physiatrist told me that Finley was an ideal candidate for this procedure called the SDR that they do in St. Louis. I knew exactly what he was talking about, because when we first learned of Fin's diagnosis it would always pop up in my google searches. The past few weeks we have been busy gathering documents, filling out applications, and making videos for her to get this crazy surgery. It was all consuming. The Selective Dorsal Rhizotomy is where they to go into the spine and cut the nerves that send the signals from her brain to her leg muscles, these are the nerves that tell her legs to be "spastic" or tight. That's my layman's terms of it for you, it's a big surgery. One Huffington post article called it "Life-Changing". In essence a "cure" for my daughters disability?? My 2.5 year old might be able to walk soon?? I could not fill out the paperwork fast enough! A friend that I made through an online support group shared her daughter's very recent SDR success story with me. This was the ultimate sign of hope, it made me feel as though our life could be "normal" one day. Words simply cannot describe the way it made me feel.
I think of my blog every time I'm in a waiting room, which marks 3 times this week (and it's Tuesday). We just got home from the Orthopedic Surgeons office. He encouraged us to wait on the surgery. Sigh, we all know waiting is my favorite thing to do. His words struck me to the core (I'm often dramatically emotional in these specialist's offices). As soon as he removed the possibility of this surgery from my immediate future, the little impatient girl inside me wanted to cry and say "no, I want it now!" He went on to explain the hypothetical risks. He concluded with, "She's still a baby. Look at her progress since even just a few months ago.. I don't want to give up on her abilities just yet, look at her! She's perfect." I was tearing up, I agreed with him. I respect him & his professional opinion. I've been through my share of doctor visits that I disagree with. (Including the Neurologist that told me there was "no hope" for our then 8 month old, to walk but that he could prescribe me valum to give her daily to "relax" her. I think, back then when I left I was laughing out of disbelief.)
This was different. This doctor has done so much for our CP journey with Fin. He was the doctor that diagnosed her and fought to get her insurance to cover more & more therapy coverage. He cares.
It's so easy to look to that quick fix for hope (even though Fin's quick fix would entail a very intense spine surgery in another state!) By longing for the future, I was in a sense "wishing away" the current moments I have with her. As mothers we can't help but hope for that next milestone, right? Like, oh I can't wait for the day when my baby can hold their own bottle, it will be easier when they can crawl, it will be so much nicer when they can tell me what they want... and before we know it they are grown up! (I've obviously been reminiscing - did you see my last post?? Lol.)
I honestly feel a little sense of mom-guilt now, I was blinded the last few weeks... Why was I putting so much pressure on this surgery? Was I getting obsessed with the idea that it could be MY "fix"? I think it's human nature, I'm not going to beat myself up about it, but I thought about it the whole way home from the Doctors office. I cried some more (note to self: get it together, good grief.)
Life as a parent is tough, and life as a special needs parent is definitely not for the faint of heart! Even on the days where I feel like I'm a big fat failure, my negative thoughts always subside and I feel grateful for the life we have and the perspective it gives us. That little saying, "A pair of shoes can change your life," couldn't be more true.. Having Finley's special shoes in our lives has brought immeasurable meaning.
Nothing that's worth having comes easy, and I'll be darned if we don't work our butts off the next few years getting our girl up and walking! I dream about it and I know she does too. That day will come soon and when it does... you better believe there will be some gi-normously special tears!
Special- adj. exceptionally good or precious
(I want to clarify that I fully support the SDR surgery! If Finley continues to be a candidate for it, we will pursue that option in the future.)