Today, for something completely different… I’m usually quite upbeat and positive about our journey with CP. I received one of my interviews back last night. And she was concerned that her post was negative, or too emotional. I had to explain that we’ve ALL been here before. We’ve walked this line. With my new found optimism, I realize that I can come off as portraying everything is sunshine and rainbows. ALL OF THE TIME. When in actuality, it’s not true. I try to keep my pity party days to a minimum, thinking that I’m only sharing what you want to read. But, after reading my wonderful friends responses last night, I realize that maybe I could do something just a little bit better than that.
Last month, I was given the opportunity to speak to new employees at Holland Bloorview. Since I was lucky enough to go to Wisconsin last November for a conference centered on patient and family centered care, that’s the topic of my speech. Easy. I know that subject matter!
Throughout my speech, I weave snippets of our lives. How much therapy I do a day with Jillian, how to make it seem like I’m not the only “bad guy” (Adam does therapy too) and certain stories that has crafted me into the parent I am today. Two things that apply in each talk? October 22, 2009 and guilt.
October 22 of 2009, was the day our family learned cerebral palsy was making itself very comfortable within our family. After the shock of the blow wore off, I found myself dwelling on that date. No idea why I focus on it so much. I mean, yes, it’s a part of her life, and I had a gut feeling something was wrong at and early age, that day will probably be etched in my memory forever. Also? I think I remember it so vividly because the doctor that gave us the diagnosis (Not Jillian’s pediatrician) he gave me the best piece of advice ever: “It’s ok to grieve.” Obviously, at the time, I was so confused! I had associated grief with death. I still had 2 healthy girls with me. After about 2 weeks, the reality set in. I finally understood what that doctor told me. I dealt with “what if” questions and horrible outcomes. Wondering just how far Jillian will take us.
When I share our story (all of it! ), I always bring up that no matter how many doctors/nurses/specialists/friends family etc., tell me it’s not my fault and to stop blaming myself, it never works. I feel that my body failed her. I couldn’t keep her in long enough to finish all that growing before her due date, 10 weeks after she was born. Logically I know it’s not my fault, but emotionally is a much different story.
When Jillian was 11 weeks old, she was hospitalized for an ALTE (acute life threatening event). Basically she had 2 blue spells. I had to rub her back and remind her to breathe. During our stay, Jillian began acting “off”. Even though she was only 11 weeks old, I was pretty confident that I knew her behaviour by then. Since she was so young, the doctor ordered a lumbar puncture (spinal tap), the nurses suggested I wait outside, but I wasn’t leaving Jillian. On infants, they perform these procedures without any sort of aesthetic or medicine. Just sugar water. When the results were in, I was informed everything was ‘normal’. I put Jillian through an unnecessary medical procedure.
When Jillian was around 8-9 months old, I was hospitalized for a 4 day migraine. They ordered an LP for me too. Figuring that if Jillian could do it, so could I. After all, I’m not afraid of needles. When the team came to talk to me, they attempted to get an access. I couldn’t stop crying and shaking since it hurt. I was immediately reminded that Jillian handled this with no problem. And I’m sobbing wishing I could just go home. In the end, they had to give me a sedative just to perform the test. Cue mommy guilt. I put an 11 week old baby through a test that was unnecessary for her (thankfully) and I couldn’t even get it finished. Panic attacks are weird and wacky things.
I carry that LP story everywhere. This is the first time I’ve actually said anything to all of you, my friends and some of my family. From one cerebral palsy mom, I don’t think I’ll ever be able to curb my guilt. I just think I’ll find better ways to deal with it in the future.