Tuesday, May 21, 2013

Loss of innocence

   Arianna was 6 months old when we got the "diagnosis".
C and P became the two letters of the alphabet that I was on a mission to study, research, understand, and get a grip on what it was really going to mean for our beautiful baby girl. Frankly I had no idea that those two little letters could make me feel like I was learning a foreign language. I spent hours online with a medical dictionary of terms that were often seriously scary and too frightening to understand. Every medical report, lab result, MRI, medication, procedure, was a new class lecture that I was forced to study.
    In some respects I think intellectualizing the diagnosis was my way of trying to process my grief. In order for me to deal with the emotional pain I was experiencing I had to digest all the literature I could about Cerebral Palsy first. I needed to gain some sense of control because so much of our life was now out of control. We didn't have a say in all of this. We didn't choose this for Ari and it was not the life we thought she was going to have. No parent chooses CP. In retrospect it felt like one day we woke up and loss our innocence. Life could and did change in an instant, and we all felt incredibly vulnerable.
  I still feel vulnerable at times. I worry about the world that Ari lives in and how it treats her. As special needs parents most of us have come to know with great familiarity the prejudices and discrimination that our disabled children are faced with. Our fears get reinforced when we have negative encounters with medical professionals, family, friends, strangers, school personnel, and the public. Unfortunately this happens all to often. We find ourselves standing up for our kids, protecting them, advocating that they have the same rights and opportunities that the non-disabled have. Then we have the difficult task of repeating this over and over again like a broken record. If I had a dollar for every time Michael or I have had to defend, assert, and protect Ari's legal rights as a disabled person I probably would be a rich woman.
   I hope that our experiences will help other special needs families new to navigating the world of CP or any other disabilities. I didn't have a mentor to hold my hand and walk me through this process. I wish that I had had another special needs mother to speak with, to share with, to cry with, to laugh with, to calm my fears with. I had Michael though and together we walked through this journey and made it to the other side. Although we loss our innocence and sense of security we gained so much more. We gained  resiliency!
Wishing you Miles of Smiles ~ Team Ari


  1. Here's to resiliency! When we were first introduced to evaluations and diagnosis and the crazy grief and confusion that overtook us in searching for answers about my son (he's on the autism spectrum), I, too, went to Google. Since then, I've met some friends with special needs children but I'll tell you - I can so relate to wanting to help people who are now where I was then. Hat's off to you!

  2. Thanks Kristi and cheers to your resiliency too!!! You are doing great work with your blog @ Finding Ninee. I just found it through Kerri and I have been so touched by Our Land Series. Congrats on helping others through your blog!

  3. Oh I can relate to all of this xx beautifully written and indeed cheers to resilience xx

    1. Thanks Bron! We are a group of hardy parents aren't we!! Cheers to you as well:)