Undiagnosed Children’s Day 2013
Aidan is my giggly 12 year old non-verbal son who uses a power chair like a nobody’s business. I had a normal pregnancy, labor and delivery with him and yet he was born with an undiagnosed disability.
I know what you’re thinking: we spent three months in the hospital when he was born with many excellent doctors looking closely and running numerous tests. They must have found SOMETHING. Perhaps we didn’t try hard enough.
Nope. Nothing… at least nothing with a name. He has plenty of medical issues but no one knows why.
Let’s face it, none of us like the not knowing. I spent the first many years of Aidan’s life in agony wanting an answer, wanting a cure, wanting to know what his future would look like, wanting an in with the moms of kids with DS or CP or Autism. We want to understand and we want to belong. Over time that desire has faded and given way to the day to day tasks of daily living, which has its own complexity. I’m not as anxious about having a name for Aidan’s disability.
So why does Undiagnosed Children’s Day matter?
First, some of us lose services because our kids lack a diagnosis. This is incredibly important to understand because we play a ridiculously stressful name game just to get help. No diagnosis can be a deal breaker which can be a sanity breaker too.
Second, sometimes there is a weird stigma attached to not having a diagnosis, as if we as parents haven’t done enough. Every family has to make their own decision about what they’re willing to try to help their child. I try to balance the quality of our life as a family with what I can do for Aidan and sometimes that means I say no to seeking out a far away doctor or signing up for more therapy.
Third, sharing our stories brings attention to the issue and attention sometimes brings research dollars. The field of genetics is changing at a rapid rate. Someday there may be a name for what Aidan has and some baby in a NICU somewhere may not lose precious developmental time getting help.
But wait, you just wore purple for us on Purple Day because Aidan has Epilepsy. Isn’t that a diagnosis?
Yes, it most certainly is and Aidan does have seizures. That is one piece of his medical puzzle. There are many pieces of his medical puzzle (low muscle tone, motor impairment, cognitive delays, orthopedic issues) but there is no big picture diagnosis that connects them.
Um, well, that’s a tough one. Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, childbirth or after birth up to about age three. Yes, that sounds a lot like Aidan and he definitely has neurological and motor control issues. However, the doctors did not believe that was his diagnosis so the search continues.
Since starting Undiagnosed Children’s Day three years ago, I have been comforted in knowing I’m not alone. Thank-you to SWAN UK and SWAN USA for using this day to get people talking. Please wear pink or blue on Saturday the 13th in support of our children and grab one of the talking points from above to share with others. Link up below and share your story.
This is why it matters to me:
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