They say "history repeats itself", I sadly don't need to look back on my December blog posts for the past two years to know this is true. Every year (at least since 2015) around this week in December and into the early spring months, there has inevitably been at least one post asking for prayers for a CDKL5 sibling and their family. I hate to say that I am numb to reading the posts, but sadly I know what this time of year brings to our small knit group. It is too painful to accept, but this is just part of our "normal"; yet there is absolutely nothing about it that is normal.
This time of year is supposed to be full of happiness, full of joy, and full of hope. Yet there are so many families who are full of the fear this season brings, me included. It is a time for many that is full of the fear of illness and of hospitalizations, and the unspoken fear that this might be the last holiday season our children will participate with us. Many will say not to think in negative thoughts, to them I will reply these are simply the facts of living with a medically fragile child.
Lately my heart feels suffocated by CDKL5. I feel angry that a "simple" change in genetic coding can have such profound effects. I feel betrayed in a sense that it was my daughter who was one of the "lucky lottery winners", and my family who has to know the intricacies of this type of life. Every day finding the positives in living life knowing this string of characters is a choice I have to make. I make this choice because it is what I need to do to survive, but there is so much heartache, so many fears, and so much grief. Today I am grasping at the positives, but watching as CDKL5 history repeats itself is causing me to fall a bit short.
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