Thursday, May 9, 2013

Take Her Home and Love Her

Did you know that most doctors, when they think about Cri du Chat syndrome, think that those affected will never speak, will never walk, will probably never be responsive and most often than not, will die at an early age?

We got lucky. The doctor who finally diagnosed Olivia didn’t tell us any of those things. In fact, she told us not to research the syndrome because the research is often more than 40 years old and is based on patients who had been institutionalized from infancy.

She pointed out that everyone does better at home, surrounded by family members who love them, who want the very best for them. She said that even a typical child, if she is put in a crib and never held, never spoken to, never sung to, never taught will obviously not do as well as a child who is taken home, held in loving arms, sung to, talked to, taught.

That’s what everyone needs. Human interaction, touch, gentleness, nurturing.

Olivia’s developmental pediatrician specializes in children with Down syndrome because there are very few (any?) doctors who specialize in 5p- syndrome in the world. We feel lucky to have this doctor. She understands that every syndrome has ranges. She understands and communicates with us the importance of not setting limits, not putting a cap on all that Olivia might be able to do.

We only have to see this doctor every two years because we’re so incredibly lucky that Olivia enjoys excellent health. But I will admit to being happy when our two year appointment is due because I get to go show Olivia off to this doctor who might not have saved Olivia’s life but did save my sanity.

The best advice this doctor gave me and my husband was to take our daughter home and continue to expect as much out of her as we expect out of her older, typical sister. She said that Olivia will need more time to do the things that Alyssa does but we should never believe that she won’t do those things.

She told us to let Olivia show us what she could do, let her be the one to set the limits if limits need to be set at all.

And she told us that people with Cri du Chat can live long, healthy lives. There isn’t anything in the research to show that Olivia shouldn’t have a normal lifespan. That missing part of her fifth chromosome isn’t something that takes twenty years off her life. She’s healthy, she’s strong, we provide her with activities that build and help maintain her muscles as much as her low tone will allow.

We took our daughter home the day we got her diagnosis and we loved her. We continued to meet with therapists who got her up and walking just two months after received the diagnosis. She talked just six months after she started walking. She ran a year later, chasing her sister and her cousin, Jaxon. Those two people, Alyssa and Jaxon have been instrumental in Olivia’s amazing confidence. They treat her like the little sister, the bigger cousin that she is. They don’t count chromosomes, they don’t care that she’s a little weaker than they are, they don’t care she might trip a little more often than they do. They love her, they laugh with her (and yes, at her sometimes). They wrestle with her without worrying they might hurt her.

They’ve toughened her up even as I sit on the sidelines and bit my tongue to keep from telling them to be careful with her. She’s just Olivia to them. She doesn’t have special needs, she’s not missing a single thing they care about.

For these things, I am eternally grateful.

1 comment:

Charity Deleon said...

We difinetly need more doctors like that in the world today. Instead of setting limits to what our children can accomplish we should be helping them to reach their full potential :)