More than a Syndrome

I am part of a couple of groups on FB for parents with special needs kids, parents with kids with 5p- syndrome, parents of kids with ‘invisible’ disabilities.

I read the comments and the cries for help. I post when I can in hopes of helping some poor parent out there who is in the first weeks/months of receiving the diagnosis.

What I most want to say to these people is to breathe. To take a breath and look at your child. This child will surprise you in so many ways.

I’ve said before that I feel lucky that we didn’t get O’s diagnosis of 5p- until she was over two years old. Because of her age, I never felt like her diagnosis took over and that I ‘lost’ her, the girl I’d thought I was having.

She was just Livie, that beautiful little girl with the amazing curls and big blue eyes. So what if the test showed she was missing part of that fifth chromosome? At that point, it didn’t change anything.

I love her developmental pediatrician. I feel like we were so blessed to be placed on her patient list. She specializes in Down syndrome so she understands that no two individuals with a syndrome are the same.

I loved that she told us that at the appointment where she gave us O’s diagnosis. She reminded us that Olivia, at two years old, was already doing better than the research said she was supposed to be doing. Dr. S gave us our daughter’s diagnosis, but she didn’t take our daughter away at the time.

And I think that’s what happens so many times when parents receive a diagnosis like 5p-. They feel like they’ve received a syndrome and lost the child they thought they were having.

But every single person with 5p- is an individual. He/She is special, amazing, beautiful in his/her own way. These beautiful people are more than their syndrome.

Olivia is more than her syndrome. Most of the time, quite honestly, I don’t think about 5p-. I just think about my girls, how proud I am of both of them. How they both surprise me every single day.

5p- is not who Olivia is. It may be in her chromosomes but it does not define her. It does not make her less perfect than any other child. She’s my Olivia, the child I sometimes consider bribing with a donut just for two minutes of quiet. She’s got a lot to say, that girl. 5p- hasn't taken that away from her. It didn't change her from the moment before hearing the diagnosis to the moment after. She's still Olivia, she's still my daughter, a child I wanted so much before she was born, a child I wouldn't trade for all the chromosomally typical kids in the world.