Literally every year since we have been part of the CDKL5 family fall has become a season I have grown to loathe almost as much as all of the challenges mutations of CDKL5 bring to every family affected. It is with the changing colors of leaves (in every other place besides Arizona and Florida), with the breezier air, and with the near end but almost strongest hurricanes of the season, that our tiny little family is reminded of just how relentless CDKL5 mutations can be. Fall is when we all get the friendly reminder that is never very far from our minds; that our children can be taken from us quickly, without warning, and with no real justification as to why they had to suffer or have challenges in the first place.
Yesterday Sonzee had a miserable morning and afternoon, until we placed her into her spa. Our happy little bear returned. She swam with her big siblings, Auntie A, and her dad, while baby brother took a bottle, and I took in the gallons of water being splashed out of the spa while attempting to try and take pictures. After we all got out I signed into Facebook to post about the fun she had and instead what I opened was post after post asking for prayers for one of Sonzee's CDKL5 brother's family because he had passed away. Immediately, my heart broke, and sharing the afternoon of smiles did not seem very appropriate.
I STRONGLY DISLIKE everything about life with CDKL5. I HATE that my other children must grow up knowing and worrying about seizures, GJ tubes, surgeries, hospitals, therapies, a sick sister, medications, and everything else that CDKL5 has taught them. I absolutely LOATHE parenting a child who has a CDKL5 mutation because I find it hard to believe there could be anything worse than watching your child suffer his/her entire life and knowing that you will eventually be burying them.
There is no escape. There is only the false sense of security brought to you by better days and healthy moments, along with the denial that it will not happen to your child, paired with the fact that they have already (somehow) made it out of the most unlikely situations a time or two before, so of course he/she always will. It is the comfort in seizure alerts and oxygen/heart rate machines while he or she sleeps at night because naturally when you are alerted you "will be able to intervene". The panic, the fear, the uncertainty, it never really was gone from any of our minds no matter that we did not post any messages asking for thoughts and prayers to a CDKL5 family, but now that we are settling into fall, so it begins again.