As part of the National Health Blog Post month, I am still trudging along. Albeit at a slow speed, but I’ll get there eventually!
When I became a little bit more serious in blogging, I had gone to Blissdom Canada in 2010 to learn from the best of the best and get a little bit ahead with my blogging. When I arrived, I told people I didn’t exactly have a niche. Whenever someone asked me what I blogged about, I usually said “whatever. A total mish-mash of things. I don’t really have a niche” After a few late nights with Nolie, I decided that I really do have a niche and that would be Cerebral Palsy for the most part.
But why cerebral palsy? Besides the obvious- Jillian has cerebral palsy, I realized that many people had absolutely no clue what CP was. Case and point? When I told one of my friends about Jillian’s diagnosis- she replied with “but she doesn’t LOOK mental!” uh…what? So, I figured I can use my blog as a way to learn about CP, plus whatever other random things I find.
Cerebral palsy is a group of disorders that can involve brain and nervous system functions, such as movement, learning, hearing, seeing, and thinking.
There are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed.
I’m always honest here. And I’m also careful about what/how much I share. After all, this is Jillian’s story and I just happen to be the narrator. If she ever reads this, I want her to know that we don’t view her as “broken” or something that needs fixing, we’re all thrown challenges in our lives and perhaps this is one of them for us.
Shortly after diagnosis, we were seen by Jillian’s awesome paediatrician. I asked him what her MRI really said. Give me a ball park or something. He explained that he has seen other MRIs where the brain was clear and the child had spastic quadriplegia or a child who had a ton of brain matter affected and be perfectly fine. It’s all a very delicate balance of hurry up and wait. And I really suck at that game.
Even though no one could predict the future, Jillian has come a long way in her 4 short years. And I really think she’ll keep progressing. Her PT at school even said “I’ve never seen a more motivated child”. In fact, I had to pick her up from school at lunch time because she had a fever, yet didn’t tell anyone at school that she wasn’t feeling well- even though I had a hunch she was getting sick in the morning and wrote her teacher about it. She just kept on working.
I honestly look up to my daughters (both of them). They have taught me so much about being a parent and decent human being. Now that Jillian is getting older, I am sometimes struggling to answer some of her questions. I know the answer but I’m not sure how to word it since she is only 4 after all. And since I’m all about educating, if you have any questions or have a blog post idea, please let me know!
Hold onto your hats because I fear this will be a wild ride, now that she’s asking questions!