Since Cerebral Palsy Awareness week is almost over here, I thought I’d answer the questions as well. This will also help if you’re new around these parts. (same rules apply… Questions in bold, my answers in italics. Obviously I won’t have anything to add!)
1. Tell me a little bit about YOU. (As in the person… Since you’ve been a person long before diagnosis!)
Well, lets see… I am almost old enough to be celebrating my 1st anniversary of my 29th birthday. I’m married to Adam, we’ve been together for almost 11 years, married for almost 6. We have 2 beautiful little girls. Lauren who is 4 and Jillian who is 2. When Jillian was 13 months old, she was diagnosed with Cerebral Palsy. In my previous life (before I answered to the title of mommy) I studied music education and I can play 10 instruments. I’m just now realizing how much I miss playing. I think it’s time to take it up again.
2. Tell me about your children (even “typically developing kids”)
Well, Lauren is 4 and she’ll be starting junior kindergarten in September. She is Jillian’s number one asset, even though they fight like CRAZY. Jillian is 2 and she has spastic diplegia cerebral palsy. She was born at 30 weeks gestation after 4 days of hospital bed rest due to premature rupture of membranes (my water broke) .
3. What type of CP does your son/daughter have?
She has spastic diplegia cerebral palsy
4. What kind of therapy do you have set up (past/present/future)
So far she’s had physiotherapy, occupational therapy, speech language pathology, the foot clinic (for AFO’s) the seating clinic (for her wheelchair) and early intervention. In the future, I’m looking at getting her into conductive education and hippotherapy.
5. What are some of the misconceptions you run into about CP?
I’ve had some people who think Jillian is dumb. Or deaf. They talk to her V-E-R-Y slowly. A lot of other people think Jillian is much younger than she is because she’s so small.
6. What are your long term goals for your child?
Like many of the other moms (and our token Dad) that have been featured, I just want Jillian to walk independently. It’s funny. I’ve learned to re-evaluate my goals. Previously, this was the ONLY answer to this question. I DID realize though that there are a lot of steps before actually walking. Our PT sets goals for her every 2 months or so. The last time she made goals, she asked what I wanted to work on. I said independent sitting this time.
7. Have you had to deal with bullying about your child?
Fortunately, I haven’t. I know kids are cruel, I was bullied when I was younger. But I seriously hope Jillian (Or Lauren for that matter) are ever bullied.
8. What is ONE thing you wished people knew about CP?
Man, this is one crappy question. What was I thinking?! There isn’t just one thing that I wish people knew, but I guess the one that is most important is that ALL children are different. Each case of cerebral palsy is unique. And knowledge is power. (that was 2. I apparently can’t count)
9. Do you actually take time for YOU??
This one is a tough one for me. I don’t generally have “me” time, but, I’ve been getting more of it lately. Now if only I could find a sitter so Adam and I could go out together.
10. What other struggles have you had to deal with?
Well, this whole journey has been long. Born 10 weeks early, spent 5 weeks in the NICU, hospitalized twice within the first 5 months of her life, countless tests, getting therapy started when Jillian was 7 months old, being displeased with our PT and OT (different ones each time), and finally getting a diagnosis after 13 long months. Now it’s more stupid crap, like government paperwork and insurance policies.
11. Do you have a favourite quote?
Lately it’s “My kid has Cerebral Palsy, what’s your super power” I’m kinda in your face like that.
12. Do you have anything else to add?
Nope! I don’t think so! Besides the fact that I’m awesome? And my kids are totally adorable?