Friday, April 13, 2012
A New Reality
By Cortney AbouElSeoud 4/13/2012 02:18:00 PM
"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Christopher Reeves
I've had days where I felt like giving up. Where curling up and escaping life seemed much easier than getting out of bed. I wonder why me and my family were given this genetic disorder, a fragile x chromosone that travels silently through generations. A grandfather with Parkinson's. An aunt who was unable to have children. A sister with anxiety problems. A cousin with autism. Auto-immune disorders scattered throughout parents, aunts, uncles, cousins, nieces, and nephews. A child with developmental delays. And then a diagnosis, one that shatters the reality of so many (or at least of those who choose to acknowledge it). The diagnosis should be a relief, an answer to the many medical issues. Instead it turns your world upside-down and forces you to face the reality that what you expected your life (and your child's life) to be almost certainly will not come to pass. In its place, a new reality is formed. One that includes words like "occupational therapy", "sensory integration", and "IEP". A reality where you more than likely know more about your child's medical diagnosis than your doctor does. A reality with more questions than answers. A reality that is mine.
So I wake each day and make a decision to get up and face this new reality. One that I've discovered isn't all that bad because despite the unanswered questions and despite the trials we face as a family - one thing remains: love.
No matter what diagnosis or label or how my children's X Chromosones are built, I love them unconditionally. I've loved them from the moment I knew of their existence and somehow I love them more each day. They are the best of myself and Mr Awesome and they (all four of them) are why I am strong.
One year after receiving Ayden's diagnosis, I found myself yet again waiting for the same phone call - but now for my one month old daughter. This time was different though, we had expected Ayden's to be positive - I would have been suprised if it wasn't - but I was hoping that Emmalina's results were negative. We had no reason to think either way as she was only a month old but I was prepared for a positive result. I thought I was prepared at least. I knew when the voice on the other end was the doctor. Doctors don't usually call with negative results. Turns out I wasn't prepared.
The most difficult part was being the one to give the news to Mr Awesome. He came to me as usual to hug me when he got home and I finally broke, unable to even form the words I'd been going over in my head. Through the tears I got out "the doctor called". It was all I needed. He just held me closer and let me cry for a few minutes before leading me over to our sleeping daughter and said the only thing I needed to hear: "Look at her, she's perfect. Nothing changes that."
And so another new reality begins for us. One that certainly gives us more questions to which only time can provide the answers.