I have joked that the reason Sonya has a mutation on her CDKL5 gene is it is G-d's way of saying "Ha try and control this". While I do not really believe G-d sits around and doles out disorders, disabilities, and terminal illnesses (etc.,) for fun, I do believe these challenges are given to families so each member can learn more about who they are "supposed to be".
For as long as I can remember, I have always thrived on being organized, a planner, a Type A personality if you will. I like to have structure and order; it is what keeps me grounded, what keeps me sane. Being the planning type, I tend to focus on the future. I have always looked weeks, months, and years in advance with clear vision. I have always been excited to see what "the future would hold" having very few big doubts that something negative would come in the way. Sure, with my neurotic personality, there were always those distant flecks of unknown shadows, but truthfully, I was part of the "it won't happen to me (us)" bubble. I guess when you live in a fantasy bubble you cannot be all too surprised if it goes "pop". The interesting thing about what happens to you when your bubble bursts; it happens exactly the way your worst nightmares would have imagined.
In a split second, you see flashes of a life you once lived replaced with blurred visions of uncertainty. You cannot see past a few hours, much less a day, and forget a week. You experience unknown symptoms of nausea, fear, and emptiness within the pit of your stomach. You learn all too quickly these symptoms define the term "panic attack". You end up like a ballerina doing pirouettes making sure to stay focused on that one stationary permanent fixture. You do this so you can breathe, so you can survive.
To be honest in all my coping and "acceptance" of all CDKL5 has to offer, I realize I have been focusing my energy on the "superficial" so to speak. Some of my concerns? Will Sonya be mobile? Will Sonya be able to communicate? Will Sonya be a functioning member of society? When I say those thoughts aloud, they sound so frivolous compared to the "bigger picture" of what CDKL5 could have in store. My short and long-term focus has been on her quality of life, which is extremely important, but at times not always a necessary focus.
This past week a fellow CDKL5 family put together "faces of CDKL5" for a fundraiser, I Golf FORE Aniyah. I read every story that he posted to the page, each written by other CDKL5 families. (I sent one in of Sonzee about 4 months ago.) A picture of a child was sent in along with a snapshot of his/her life with CDKL5. After reading a few of them, I felt like I had been hit in the chest with a fast flying baseball and the wind was knocked out of me. The panic set in, the tears filled my eyes, and I was transported back in time to the first night Sonya was in the epilepsy-monitoring unit. She had at least five seizures that first day from 10:26am until they administered her first dose of medication around 2pm. I was in the hospital alone and scared to death. When the medication was finally administered the doctors neglected to (or I did hear them) share with me that along with the potential side effect of irritability, she could sleep and not eat for 12+ hours with the dosage they were giving her. I spent the entire evening and night crying hysterically to her amazing nurse thinking she was brain-dead and never going to wake up again. When she first cried at 5am, it was the most beautiful sound I had heard I was not sure I wanted her to stop.
The reality of the situation is, besides the possibility Sonya could lose her skills following each seizure, realistically, she will always be a seizure away from losing her life. Incite panic attack. The reality sends my brain into a tailspin because it is too much for me to acknowledge, too much to handle. Therefore, I turn to what I can fathom, a crutch. I turn to FAITH. While I have no doubt there is more to myself than I am aware of. I have learned through this journey so far that I have more faith in G-d than I initially thought.
Faith. It does not make things easy, it makes them possible. -Author Unknown
My faith has led me to believe that Sonya will achieve her milestones at some point in her life. I also have faith that even if they are temporarily suspended due to increased seizure activity, those "Sonya-stones" will be mastered again. My faith makes this experience bearable. It makes the fear less overwhelming. It makes the "frivolous" turn into substance, into a much-needed focus. It gives me a sense of structure and control over the panic and has my Type A personality do a little happy dance. Most importantly, it makes me smile and appreciate all the seconds in each minute, every minute in each hour, and every hour in each day with Sonya and her siblings. All of which I might never have focused on before the bubble burst.
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