Support

Thank you to Lauren and Anonymous (Julie?) for that comments on my last entry.

Lauren, you're right about the reframe. I love how you put it. I love that Olivia is a testament to what a 5p- kid can do, that her potential can help give any parent who is faced with this diagnosis hope.

Because sometimes, hope is all we have.

When I first started blogging, I hoped to reach out and be found by other parents of 5p- kids and show them how amazing their child is.

At my first (so far, only) dance marathon, after I'd given the speech about how much Riley Hospital for Children helped our entire family by giving us a diagnosis, one of the other attendees of the dance marathon approached me.

She was a mother of another Riley kid. But that wasn't why she wanted to talk to me. She wanted to tell me about a friend of hers who'd been given the 5p- diagnosis prenatally. Her friend had been told that her child would be blind, she would never walk, never talk, wouldn't be able to feed herself. She was told that her child probably wouldn't survive past birth.

She chose to end the pregnancy due to this grim diagnosis.

Yes, 5p- can be severe. I'm so sorry, Lauren, that you and Akeelah had to find this out. It breaks me heart every single day.

But it isn't always.

And doctors don't seem to know that.

I know they have to give parents the worst-case scenerios. They'd be negligent if they didn't. But why can't they give the best-case scenerios too?

I think of Olivia as a best-case. She's proven everyone wrong.

Her doctor warned me from the start not to research 5p-. She said the data is outdated. I wonder of the woman who ended her pregnancy was given outdated information? I wonder if her doctors were using information from over thirty years ago to advise their patient?

I can't judge that woman for her choice. But...what if she'd been at a dance marathon where Olivia and I were in attendance before she'd received her baby's diagnosis? Maybe she wouldn't have me the choice she did. Maybe she'd have remembered Olivia's laughing face, her running antics, her DANCING and thought, "That could be my baby too."

The woman who spoke with me said that the termination had been a very difficult decision for her friend. I would never want to add to her grief.

But if Olivia can change one person's view of what it means to have a genetic disorder, I want that. I want to be able to support other parents who are facing this syndrome. I want to encourage people to seek out early intervention as soon as they can. We didn't get into therapy until Olivia was almost a year old.

I should have followed Julie's advice when O was three months old but I didn't. And yet...look how far she's already come.

Tom and I are very proud of both of our girls. We are so greatful for the therapists who worked with Olivin the beginning and I'm so glad we found a supportive gym that continues to work with her to keep her strong and encourage her confidence in herself and her abilities. Her abilities are endless.