There was a post over the weekend in our CDKL5 support group of a mom of a 10 month old who was recently diagnosed. Change the date by 3 years and 7 days, and her daughter's age to 8 weeks and there we were. She mentioned her daughter's current status, and she sounded pretty similar to Sonzee at that age. I skimmed the replies and had zero intention of replying, after all, she was caught off guard by the diagnosis, in shock, and was looking for some hope. I know what she is looking for, I know how she is feeling, I know what she wants to hear, and I know I am not the support she currently needs. I am having a difficult time myself defining what hope even looks like at this point.
I remember 3 years ago it was merely a voice in the back of my mind that was saying she would not outgrow the seizures she was experiencing. I remember 3 years ago how often Sam said exactly the opposite, he not only hoped, but really believed that when she was a little older the seizures would stop and she would be just like her siblings. Her stint in the NICU and subsequent 8 day PCH hospitalization would become a distant nightmare and not part of a recurring adventure. I wonder if deep down I clung to any minuscule amount of hope that I wouldn't allow myself to consider out of the devastating fear of the reality crushing me.
It was 3 years and 6 days ago we received that phone call that redirected our focus on the path we had been journeying. The phone call that told us we had an "answer". I remember feeling at peace that we had an answer, eager to not want to wait the night to hear what it was, but "at least we knew what we would be dealing with". Later on that day, Sam told me nothing we were going to be told was going to be good. It was an odd switch of roles. I asked him how he knew, and he told me he looked up the infant epilepsy panel and only two diagnoses were "good" and they were not what Sonya had. I think it was one of the few times I remained more calm than him, and said, "well, we will know what it is tomorrow".
From the moment we read "CDKL5" on that genetics report, we clung to the hope that Sonya would not fall victim to all of its devastating effects. Day after day, week after week, and year after year, I have watched her with my own eyes become its prey. There have been some successes on this journey, and invaluable experiences, but my faith and trust in hope has been shaken to the core. I hope she isn't suffering. I hope that she knows she is loved. I hope she feels we are making what we feel are the best decisions for her. Gone are the days where I place the measurements of my hope on her accomplishment of typical milestones. I would still love for her to sit just one time unsupported in her life, to take her first steps, to say one word, to purposefully communicate with her family, and to interact with her siblings, but if someone asked me to give them hope for their child diagnosed with CDKL5, I would say there is certainly hope, but, the reality might not follow in those footsteps.
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