Um, Hello?? Is this thing on? Oh yes! You sir, in the back! Please sit down and I'll try not to bore you too much! I suppose I should state the obvious...If you're looking for Ellen, she's in a closet wondering just WHAT exactly I'm going to talk about. It's ok. I gave her cookies and water, she's all set.
My name is Cheryl and I blog at http://www.beautifulsideofhectic.com/. I enjoy long walks on the beach, candle lit dinners and... Oh. THAT introduction is not going to work here. I will be celebrating the first anniversary of my 29th birthday in May. I have a wonderful husband, Adam who has put up with me for 10 years and married for 5, although, I do see a lot more grey hair popping up, I'd like to blame that on the kids. Speaking of kids, I have 2. They are mostly cute, usually when they're sleeping, unless they're talking in their sleep.Lauren is my "typically developing" child who is 4 (although, sometimes Adam and I wonder if the right child was diagnosed. ;)). My other daughter, Jillian is 2.5 and as a result of a premature birth, Jillian has Spastic diplegia Cerebral Palsy.We also live happily ever after with our cat, Timbit.
Jillian was born on a warm, sunny September morning, 10 weeks early. She had a pretty decent NICU stay, mostly there to eat and grow. After 5 weeks in the NICU, we took Jillian home. Being 10 weeks early, we had to take into consideration that since she's not supposed to be BORN yet, she'll start making milestones a little later then "typically developing" children. Nothing really struck me as delayed until she was 6 months old. She wasn't really babbling, not attempting to crawl/sit/etc. and had some severe oral aversions in regards to eating solid foods.I brought this up with her pediatrician and he advised we would keep an eye on it. When Jillian passed her 6 month corrected birthday, it was evident she was behind. Thus began our completely insane schedule.
We started with the basics, PT/OT/early intervention. When Jillian was STILL not meeting milestones, her doctor ordered a sedated MRI. Jillian went through that procedure quite well and we didn't hear the results until October 22 of 2009. I was taking Jillian to a routine appointment (ironically to plot her development on a graph) when the doctor announced he had Jillian's MRI reports back and she was diagnosed with Spastic Diplegia CP. I guess I was a little shocked, even though this would be a REASON why Jillian was behind.The doctor then told me it was ok to grieve. I thought "what?! Grieve?! We still have 2 living children!" It wasn't until about 4-6 weeks later that I understood what he said.
The shock has warn off and now I'm finding myself researching a LOT about CP. I firmly believe that knowledge is power and I needed to submerge myself in knowledge. The only bad thing that annoys me a little bit is the wait and see attitude. I do appreciate it, but sometimes I find it frustrating that we don't have anything set in stone like when Jillian will take unassisted steps.
So, there's my life in a nutshell. As much as I feel like CP doesn't define Jillian or I, it's a huge key in our lives, in our families lives. Honestly, Jillian has taught me SO much about myself. Who knew there was so much strength, determination and love inside of me?
Hi Cheryl! Nice to see you here on Ellen's blog!
ReplyDeleteYep, there definitely is grief after diagnosis...we have to grieve the loss of the child we thought (or hoped) to have.
And yes, you're just like me. Knowledge is definitely power.
Cheryl you are fabulous. You have two beautiful daughters who adore you.
ReplyDeleteI never thought about it that way; the fact that you have to grieve after a diagnosis. I hope the day comes soon that she will take unassisted steps and how you manage all of this facinates me.
ReplyDeletewe are given challenges in life to bring about the best in ourselves...and in finding the best in ourselves we can in turn teach our children to be the best they can be. It's a two way street and you were meant to have wee Jillian just the way she is - perfect.
ReplyDeleteCheryl, as always, you are absolutely a rock star! Your girls are gorgeous and Jillian is going to rock this world with a mama like you! If we could all be as strong and dedicated as you, the world would be a much better place!
ReplyDeleteIt only makes sense to grieve. We as parents need to let go of the image we had when we gave birth to that wee babe, and then make room for the new exciting life ahead. I love the Trip to Holland story to describe this feeling.
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