The last few days have been challenging at best. This is not my typical cerebral palsy post, so I’m just giving you a heads up right now if you’re looking for sunshine and rainbows.
Friday was Jillian’s parent/teacher meeting and just as we were walking out the door, I checked my Facebook. I then read that one of my amazing cerebral palsy mama’s had sadly lost her son in his sleep at 2 years old. I was crushed. (Obviously this isn’t my story to tell, so I’m going to be a bit vague here) I had met this mom and her son almost a year ago when I started Parent Talk at Holland Bloorview. Her son was under the age requirement for the playroom, so she tended to bring him with her and how wonderful that was! Also? This mom hasn’t missed a single month of parent talk since it began last year and until September when her son started nursery school, he came with her. It was very easy to fall in love with both of them and I’m honoured and so lucky I was allowed to be a part of this magnificent little boy’s life. Losing someone always sucks but losing a child, and so young has me absolutely devastated.
Then to add insult to injury, Jillian decided to take another stab at my heart about walking. A few weeks ago, she commented that she wished she could walk without a walker and all I could muster was an “I know”. She was over it much faster than I was. And the same was true this time.
Now, I’m usually pretty upbeat with this cerebral palsy thing. But, that doesn’t mean I’m upbeat all the time. It just doesn’t happen that way. Sometimes, things bother me more than they probably should but that’s my issue, raising my daughters as we are.
I have a few adults with cerebral palsy on my Facebook. I always welcome their opinion and thoughts, but it doesn’t mean we all need to agree all the time. As a mom, I wish I can pick either of my girls up, find their boo-boo and kiss it better. Sadly, CP doesn’t just stop existing because of a kiss and I’m left having a momentary pity party as I try to get up and brush myself off again. Also, just like with anything, life experience helps a lot. Some of these people have had 20+ years to get used to CP. Between Jillian and I we’ve only banked 4 years. We are still very much a work in progress and just trying to muddle through the best we can.
So if you’ll excuse us, we have some more learning to do.