Between Christmas Eve and Christmas as I scrolled through my Facebook news feed I was met with 100's of sweet family pajama pictures. I absolutely love watching my friends’ families change and grow over the years; each picture I see brings a smile to my face and for a moment I wonder how on earth time has flown by so quickly. So many of the pictures were posted in our CDKL5 support page and while I may not personally know these families, I know more about them than some of my closest friends' children. They posted their pictures with a blurb, "Wishing our CDKL5 family a Merry Christmas" or "From our CDKL5 family to yours..." thrown into the mix were those with well wishes to the families in the hospitals, pictures of her CDKL5 siblings on various breathing equipment helping them to survive their colds and infections. I was nursing little man and Sonzee was in her Rifton chair participating in her typical hand stereotypies, making her noises that express she is not exactly comfortable and the tears filled my eyes.
I am so grateful for so many of the parents who have become more than just people on the Internet. I am so thankful there is a place to go that has parents who get it in a manner that no one can unless they have a child who has a CDKL5 mutation. It is a place that when someone types "I am so sorry you are going through this", you know they aren't just words and that they understand the depths of whatever the current struggle is. I truly am appreciative of our CDKL5 family, but honestly, I HATE that we are part of this family. I DO NOT want to understand anything CDKL5. I DO NOT want to know about seizures and the side effects from being on anti-epileptic drugs. I DO NOT want to witness so much pain, grief, and sadness. I DO NOT want to HAVE to celebrate inch-stones. I DO NOT want to know family support groups like CDKL5 even exist.
On December 15, 2010 on the "on this day" memories page on Facebook was a status I wrote that said, "I know G-d only gives people what they can handle, but some things no one should have to handle". At the time I could not have predicted how true my own words would circle back to express my current disposition in such an exact manner. I know this journey was given to Sonzee and our family for a(n) (unknown) reason. I have to truly believe I can handle it in its entirety, but personally, I feel this is just one of those "life experiences" that no one should know anything about.
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