I was asked recently to write a post for a site I’ve been a part of for over five years. The topic of my post was birth defects because January is Birth Defect Awareness Month. I wrote a sort of stream of consciousness post about the beginning with Olivia, the two years before we got her diagnosis but still knew something was wrong as well as about the day we got the confirmation that she has 5p- syndrome.
I realized as I typed that I don’t write about 5p- syndrome here much. I almost ended that last sentence with ‘anymore’ but I don’t know if I ever really concentrated on her actual diagnosis as much as I did on her and Alyssa and yes, even Tom, much to his mild annoyance. Heh.
We are almost four years away from the day we got O’s diagnosis. But we’re still living each and every day with her, and who she is and how she is and all the joy and yes, frustration, that can bring. Quite honestly, I often feel like a fraud.
Am I really the mother of a child with special needs? Does she really have a birth defect? She can appear so…dare I say it? Normal.
And most days, she is just Olivia, the 5p- diagnosis is not at the forefront of our minds. We think about what most every other family thinks about, getting breakfast on the table, lunches packed, hair brushed, the girls on the bus and later, what in the world to make for dinner.
But then come the days where I get multiple emails/notes from O’s teacher and I feel it, that pang that comes when I’m slapped in the face by special needs. She needs extra help, she needs patience, she needs expectations. She needs…what every other child out there needs, regardless of whether their needs are special or not.
Alyssa can be just as needy as Olivia, often more so as she becomes a moody preteen. She sees how much help and attention that O gets and it frustrates her that her sister is so demanding. This means I take extra time with my older daughter to be sure she knows that I love her as much as her sister, that her sister’s diagnosis didn’t buy her extra love.
It’s a tough line to walk but we walk it every single day because that’s what parents do. Parents walk lines of discipline, lines of indulgences. We face challenges every single day, whether those challenges are brought on by a birth defect or just a moody ten year old, it doesn’t matter.
Life with a six year old diagnosed with 5p- syndrome is probably very much like life with a six year old that wasn’t diagnosed with a birth defect. At least I think life with MY six year old with 5p- syndrome is like that.
Here are the things she does that Alyssa did when she was six. Olivia dresses herself, she feeds herself, she puts her own shoes on (but we do tie them for her.) She writes her name and traces the letter of the week, she counts to 49 but only stops there because she’d bored, not because she doesn’t know what comes next.
She climbs stairs the way everyone else does, she runs, she somersaults from one end of the house to the other. She laughs at sarcasm, especially when it’s directed at her sister. She pushes her sister’s buttons just to see her explode.
This birth defect didn’t defeat us. It challenged us and I’m proud to say we all, Tom, Alyssa, Olivia and I rose to the challenge. We took it on and we made it normal. Our normal.
I know we’re lucky that she doesn’t have lingering medical issues. That is one thing I know we dodged. But even if we hadn’t, I’d like to think we’d have figured it out anyway. That’s what life is all about, taking the challenges and making them work for you.
To that end, I will say that I don’t see Olivia as defective. She is who she is and I think she’s perfectly amazing.