I can’t breathe.
I am breathing but it pains me to breathe right now. The pain in my chest is so tight from stress I can’t relax. You see the truth is, I haven’t been able to relax for the last few years and specifically now the last 17 months and 5 days.
My beautiful Bee had her first spasms at 18 months. Prior to 18 months she was a physically typical developing child. Did she have cortical dysplasia already and was she born with that birth defect? Yes. But to the human eye and especially a first time parent she was also perfect.
Looking back and experiencing everything for a second time now, I have seen many differences between my two girls development. If I had to guess I would say Isla has around or over 500 words. She can repeat anything, and she says please, thank you and your welcome. She is a 17 year old in a 17 month olds body. She is a saucy little monkey but she is an incredibly loving child. She is able to express her likes and dislikes so clearly with me, tells me when she’s hot or cold, thirsty or hungry, hurt or sad, needs to rest or “nap”, tells me when it’s “tub time” and since 11 months old has told me that she “wuvs” me. I waited FOUR YEARS for Ailbe to say that she loved me. FOUR! I never knew when she was hungry, hurt, tired or any of the descriptions above because she told me so. I strictly relied on my understanding of her facial expressions and different noises. Ailbe barely had 10-15 words by 18 months and I was told that it was relatively typical. We know many kids right now that are completely healthy and have no birth defects with that same word count.
In my heart I knew she was “okay” when I met her for the first time and then a little more each milestone thereafter. But, I still think about it. I’m still haunted by the horror that plagued my child. Asking me if IS is genetic to me seems like the cruelest question to ask a mother but to others seems completely normal. For those of you who ask the questions of how and why, I don’t have the answers and I never will.
The feeling of guilt I have as a mother worrying about Isla but knowing it happened to Ailbe is unexplainable. I can’t express the depths of my emotions on the subject.
You’ll have to excuse me if I’m not able to go a day without crying. If I’m not able to stop worrying. Or if I’m basically motioning through each day until Isla is 18 months +. You see I’m living a life that many will never have to even think about. Sure, everyone has their own hardships, I completely understand, but the test of fear is one I don’t wish on a guilty soul.
Fear wakes me up in the morning. Fear accompanies me to breakfast, school, lunch, play dates, dinner, therapies, family time, shows… Fear is faster than I am. I’m told what I need to do. I listen, but I can’t hear over the deafening sound of the fear in my head.
Most days are good, but some are ridden with doubt about everything.
Today is one of those days.