I normally keep most of my CP related posts casual and upbeat. Obviously, that isn’t always true and today it isn’t true either. If you’re here to hear about how CP is all sunshine and rainbows, you might want to come back another day. I’m very very lucky I don’t have many of these days anymore, but they still creep up.
A few days ago, I was scrolling through my Facebook feed, I came across a post from Kim about a recent law that passed to have all infants probed with a sat monitor to help alert “professionals” for a congenital heart defect. Honestly, such an easy test and wouldn’t cost much to implement it. But really, it got me thinking. (If you’ve never read about Kristine McCormick and Cora’s Law, it’s a must read!)
Jillian was on a sat monitor pretty much immediately after birth until she was finally discharged from the NICU after 5 weeks. The thing that gets me though is Adam took a short video of her at about 10 minutes old. (This was the only way I saw her immediately after birth. When my OB lifted her out, all I saw was her bum, since that’s the position she was in.) Watching the video immediately made me cry. She was struggling to breathe. They had the ambu bag next to her, but they weren’t using it. They kept her without a ventilator for about 2 hours. I’m not sure what their reasoning was, but I can’t help but think “what if they vented her prior to 2 hours old? Would she have still sustained a brain injury? ” I realize this trail of thought is irrational, but it can’t be helped. In fact, when I give our new hires their orientation on patient and family centred care, I always make sure to bring up the following: “100 people could tell me that Jillian’s CP is not my fault. And I will never agree with those people. To me, my body failed her. ” Rationally- yes. I can see their point. It’s NOT my fault. Emotionally? Never. It has guilt written all over it. Not to mention whenever I give a detailed medical history I’m usually asked if I drank or did any drugs while I was pregnant. I didn’t, and just in that last breath you said it wasn’t my fault, yet you’re asking me if I did something during my pregnancy to put her at risk. I’ve been asked those questions repeatedly over the last 4 years, and it still bothers me to no end. I’m sure we could sit around playing the what if game all day long. Although I don’t let this take up much valuable head space, it’s always at the back of my mind.
This school thing was such a tough decision for me. For us. As a whole family. I had issues with our ‘home’ school from January of last year. I made arrangements to speak with the principle regarding registering Jillian for school. When we were first looking at the schooling options, I was adamant that Jillian would attend the same school Lauren was. We’re very lucky she has no cognitive issues (which really isn’t here nor there… She should be accepted anywhere) and I wanted her to have the same school experience as her sister. Upon my first meeting with the principle, I was hopeful. She seemed on board. Great. No fighting, just what I like! Over the following weekend (after talking with Lauren’s fabulous ECE from last year) I drafted a letter explaining what Jillian would need while in school.
The principle has never been my favourite person at this school. She definitely didn’t give me the warm fuzzies. She showed her true colours the afternoon she confronted me when I was picking Lauren up from school. First, she tells me that I LIED about Jillian’s abilities (right. How exactly?) that there isn’t enough budget to hire a full time EA for her (she would only need assistance with SOME gross motor skills and toileting- at that time spoon feeding as well, but we’ve worked on that one!) Meanwhile, Lauren is tugging on my hand, anxious to get home. The principle then told me I needed to make a decision about what to do. I explained we had applied elsewhere (inclusive classroom) but the procedure was to register at your home school in case there wasn’t a spot for her at this other place. I explained that the decision would be made within our whole family. And Jillian would have a say too. She then went on to say how I was STUPID for letting a 3.5 year old make such an important decision. I frankly said “well, you obviously haven’t taken the time to get to know my daughter. That statement couldn’t be farther from the truth”. We promptly left when Lauren started asking me why the principle was calling me stupid. Stupid is a bad word around here. We don’t say it. That was a fun life lesson to teach!
With each passing week, I was holding my breath. I didn’t realize it though. I finally received Jillian’s acceptance letter into the program and finally exhaled. Finally, something was going to work out. But tonight, I’m filled with doubt to see if I did the right thing. Rationally, I know I did. (SUPER small class sizes- only 6 kids per class, combined therapy and the ‘typical’ JK curriculum, and it’s temporary. Only 3 years. I can do this, right?) Emotionally? I’m a scared little girl sitting in the corner, sucking her thumb.
Before anyone jumps the gun, I was completely this irrational when Lauren started school last year too. Irrationalities don’t play favourites!