Bad Day

It's been a not-good 24 hours. Last night Claire fell out of her specialized chair that we sit her up at the table with. I have no idea how she wriggled it off the chair but I just felt like the worst parent in the world. The straps are all screwed up and we've been making the best of it until she gets her new one, but it obviously wasn't secured well enough. I know that kids fall and get bruised and hurt themselves, but it just feels different when she doesn't know how to brace herself or put her arms out to break her fall - things like that just make me feel so protective of her.

The past few days I've been having a hard time waking her up in the mornings, which has made me glad that we have afternoon preschool in the fall. Today we had a music class that I was braving by myself for the first time in awhile and I barely got Claire coherent enough to take her formula with her g-tube (I don't like giving it to her when she's sleeping because sometimes when she wakes up she throws it all up). I was running around the building with a repair person trying to coordinate things before we left and Claire must have had a seizure while I was out because she was so groggy and out of it when I got back. We got ready and left for the music class - Claire had a huge poopy diaper (I find it so stressful to change her anywhere but home because she gets scared on those pull down changers and she's too big to use them anyway) then she fell asleep (which she usually does after seizures) and so I'm trying to hold her dead-weight body while chasing Madeline and helping her participate in the group. Not to mention that we got soaked on the way in and the way out.

So Claire slept almost all day. I tried my best to wake her up so I could feed her lunch, but had to do milk again. Madeline has totally got cabin fever because our apartment is crowded with boxes and she couldn't even go out on the deck because of the rain. I was trying not to be worried about Claire. I really worry that Madeline picks up on my stress and worry about Claire but I don't know how to pretend that it's not there. I know it will have to be a part of her life, like it's a part of mine.

Now she just had another seizure sitting in her chair. So four hours after she finally woke up, she's back asleep again. That means she'll probably be up at midnight or later.

Why does my sweet girl have to go through this? Why isn't the medication we're pumping her full of, work 100%? Sometimes I really wish I just had the "typical" worries of motherhood instead of these things that keep me up at night like, Will she ever say 'mom'? Will I be changing her diapers when she's 30? Will she have problems with seizures her whole life? Will she ever have a friend? Will she ever be able to take care of herself? Sometimes those worries about the future really weigh me down.

But there are many good moments too. We were at the Muttart Conservatory yesterday and a lady walked up to Claire and started talking to her - I can always tell that those type of people either have worked with people with disabilities or have had someone in their life deal with those challenges. She told me she has a son who is 33 and who has cerebral palsy - he is quite severe and is non-verbal. She was so encouraging and told me that he was in a regular classroom right through grade 12 and is now living in a facility with two other disabled adults who have 24 hour care and that he is happy and enjoying life. She told me to never hang around with parents who have given up on inclusion. She even gave me her phone number and told me to call her day or night if I needed to talk. I would have never met this lady if I hadn't been there with Claire. There is such an instant connection with other parents of kids with disabilities - even if your life situation is so different, you feel as if you know them and can trust them. There have been so many people who have helped us and I hope that maybe we've helped others to be more aware of people with disabilities.

This is addition to how many sweet moments we have with our babies. Madeline is becoming a little mother hen and I hear her saying things to Claire like "No kicking" or "Don't worry Claire" or "I love you" or "Claire's just talking" (when she's screaming). It almost makes me cry when I see them playing together - when Maddie brings Claire something or reads her a story, or when they hold hands in their car seats. I have moments when I worry about how having a sister with disabilities will affect Madeline, but I hope that it will just make her a better person who can see past those outward appearances. Helping Claire to learn and grow has been a challenge to my faith and to my physical strength and my emotional self - but hopefully I've become a better person along the way. All those huge worries don't seem so daunting when I see her smile of pure joy or when I'm holding her and she is very still for a moment and it feels like a hug. I guess it's those little things that see us all through the hard times.