This post seems just as difficult to write as it was to speak at your funeral, something I did with two of my best friends holding me on each side, 6 months ago tomorrow. Today is hard. Today marks half of a year without you being sassy, kicking your brother, or hanging out with your siblings. Today marks 6 months that you haven't been in any pictures or cuddled by aba, myself, or nurse Paige. Today marks 182 days since I last saw you. Today marks 26 weeks since I gave you your last kiss and placed you on a gurney that was loaded into the back of a car and couldn't even watch leave the driveway. I wish I could say that today marks something other than another first in life without you here, but that is not the case.
The last 6 months have been filled with so much missing you I am not even sure you could fully comprehend it. At the same time, it has been filled with so many moments of happiness that you are no longer suffering here. I am close to 100% sure that you have been in a far better place over the last 182 days. Something I am reminded of when I see your CDKL5 siblings in hospitals, sick, or recovering from seizures. I do not miss you having to endure any of that. I do not feel at all sad that your past 26 weeks have been spent in complete peace. It has been 26 weeks without sticking you with a needle, your first 6 months ever without one single seizure, and 182 days with not one ounce of pain. However, I would be lying if I didn't tell you that I have spent close the entire last 6 months wishing that you were here as a healthy, not ever having a mutated CDKL5 gene, Sonzee.
Since today marks your first 6 months in Gan Eden, besides the standard glow rock to be placed by your grave, there will be a new tradition of placing a soapstone character every 6 months, and today's, of course, is a bear. Today also marks what would have been your first day of Kindergarten, and in addition to a painted rock, Auntie A made you your back to school sign that says "First Day of Kindergarten in Gan Eden". I hope you are wearing a cute outfit and someone does your hair as cute as nurse Paige would have.
These last 6 months have been filled with such bittersweetness that I know will continue for the rest of my life. We have done so many things in your honor since you've been gone because that is all we are left with, but yet we wouldn't trade your peace for our comfort for even a second. We won't ever be at peace with that fact that you aren't here with us in a broad sense, but there is no way we would ever have you come back, even for a day, to have to endure what you did. My heart will continue to be shattered until we meet again, but I have faith that you have spent the last 4676 hours making up for your 4 years 11 months and 23 days, and for that, may you have an eternity more.
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