I was talking to the research assistant at the Engle Laboratory today giving her an update on Makenna. When I told her that Makenna was currently in a brace and was, for all intents and purposes, corrected.... her response was a resounding, "Brilliant". And she's right. It is brilliant. Using the natural growth of a young spine to actually correct the deformity - brilliant. Completely avoiding years of invasive and risky surgeries - brilliant.
This week has been filled of ups and downs. New discoveries, anger and outrage, relief and comfort, and resolve. One week ago we returned from Chicago where my fears were put to rest and x-rays proved that brilliance had worked. And then we worked our way to the weekend...
And then it was Sunday. Church usually finds me at my weakest. Not my saddest, but my weakest. I think it provides a quiet time for reflection; which often brings about emotion. I used to get boggled down with the three most dangerous letters for a parent with a child who has faced challenges - W H Y? It seemed in church, where it was quiet and my brain wasn't constantly being inundated with "Mommy, can I....?" over and over again.... I could ask my own questions, and "WHY?" is what used to come up all the time.
Why our family?
Why was so much being dumped on us at once?
Why did it feel so lonely?
Why was it sooo hard?
Why couldn't I handle it any better?
I don't feel those things anymore. I don't ask those questions. I don't feel overwhelmed (very often ;)). I have come to terms with the fact that there must be some depth perception issues between heaven and here that makes my plate look much bigger than I think it is. And I realize that I must have strength and patience in reserve that I am unaware of. But I have to continue to have faith that I will be able to handle whatever comes my way - even if I have to make it up as I go.
So that was my Sunday. Realizing that I don't have that anxiety anymore. I realize that Makenna is an example of what is possible. Someone once told me, "There is a gift there." I feel strongly that the gift in Makenna's story is to share her story - with others who have scoliosis and need the treatment, to raise awareness about early diagnosis and intervention, to help parents of other kids with rare disorders that need to advocate strongly for their child, and to guide them in their journey. That is the gift - now I need to focus on how to share it the best:)
And then the week just started rolling - really fast... I was presented with the two extremes: a mother with a sixth month old that most likely has a self-resolving case of scoliosis, and a mother with a 19 month old who has a 90 degree curve. How do you balance those two? How do you relax about the potential self-resolving case when you see what can happen? How do you stay calm to help the parent of the child with the 90 degree curve? I am happy to say that I think I did ok... It wasn't easy, but I think both will get the help, guidance and support that they need.
But their stories, presented right on top of one another, sparked something in me that has generated an incredible amount of momentum.
I spent this morning conducting google searches that a parent with a potential diagnosis of progressive scoliosis might make. I discovered that the about.com page on infantile scoliosis does not include casting as an option for infantile progressive scoliosis. I e-mailed them and requested that they review the current literature and consider updating the page. I posted replied to youtube videos on infantile scoliosis that only discussed rod/veptr surgery - leaving Makenna's website as my signature.
I submitted Makenna's story to the Today Show (Kathie Lee and Hoda) segment "Everyone has a story".
I am currently gathering stories of children who are treated in Chicago and submitting the story to Oprah.
And as if some sort of cosmic karma heard all of this... the researcher in Boston told me that they would like me to share Makenna's story with a media relations person from the hospital for possible publicity for the Congenital Cranial Dysinnervation Disorder (CCDD) Clinic at Children's Hospital Boston. No guarantees the story will be picked up, but at least it's out there. Even if the woman I talk with tomorrow is the only person who hears Makenna's story, that's one more person who has heard it. One more person who may have a friend, or a friend of a friend who has a sister with a child with a curve. Her story - and the message - WILL spread; slowly or like wildfire - and I'll take either :)