I am actually lost for words on the fact that it has been 18 months. The last few weeks have been so draining on the emotional level that I have lost my entire ability to deal with anything grief/you-related. That makes things extra challenging because trying to ignore grief means I am essentially ignoring you. I have zero desire to function but have no option not to. I didn't expect this to get harder. I thankfully do not have any expectations, but even without them, things keep feeling worse. I am sorry I am slacking on my daily throwback pictures, but that also falls in the scope of things I am finding impossible to do. It is just this intense feeling of extreme exhaustion, but hard to really put into words.
Monday marked the completion of 78 weeks without you. Tuesday at 1:08pm marked an entire 18 months without you. Today, Wednesday, at 1:08pm(AZ time) it will mark the beginning of the next smaller "count up" to the 2-year mark. I rationalized I could write this today because it is before 1:08pm, and therefore still falls under the official 18 months day, meaning I did not miss the actual date. Trying to keep my guilt at bay and honor my moment in grief is a massive struggle to balance.
Today I find myself in Dallas, in our Dallas home, at the Howard's. It feels comforting to be in their presence during this time because even not talking about anything grief-related aloud we are with people who have lived the same life and journey of CDKL5. This week brings years of "on this day" memories and moments, and there are some amazing ones, but my heart hurts. If I harbor any regret within your life frame, it would be that we never got to take you to Morgan's Wonderland. It was on the agenda that first pitstop here in 2017, but then we just clicked with the Howard's, our plans changed, and we said "next year". "Next year" became six flags, which we did for 2 years, and then, you were out of "next times". I probably won't ever be able to bring myself to go there now; that's okay.
It is hard to believe life continues to move on without you here. It still feels like one of those movies where the characters freeze but the background continues to change and all the people outside of the focal point pass by and continue on with their roles. I still feel stuck. I still feel like I am always struggling to just get through each day. I still feel like I am back reliving your life and death as if it all just occurred today. I am thankful for the ability to recall so much, yet am saddened by some of the everyday details that are no longer as poignant. Certain facts that were once as ingrained in my mind like the ABCs are no longer pertinent to my every day and therefore have been lost, like the ability to remember at what age and how much of your medication you used to take, how you reacted to it, or what side effects you had. The exact placement of your genetic mutation used to be in the forefront of my mind, and now it requires a text to a friend who knows or a lengthy search through all of your files. Every day I feel like I lose something else, but I won't know what that is until I am asked and can't remember or a situation brings it to my attention.
18 months have brought your name missing from pull-down bars that hold the names of the rest of us in the family. Your insurance cards still sit in my wallet behind the ones we now use. Your room still holds your Rifton chair and your bed, both empty, but unable to be removed. Your car still sits in the garage, your clothing still sits in piles waiting to be made into blankets. Your Ativan and meds of a similar type still sit in sealed containers in the laundry room cabinet. Your presence feels less and less active, and the "caught off guard" moments of grief continue to come like punches to the gut. Life of us being 6 has (sadly) become normal in terms of your physical presence, despite you always being in our mind. Sadly the world can't and doesn't read my mind.
Anyway baby girl. My hope for your 18 months is that they have been the best you could have ever had and better than what I could give you here. You are never gone from my thoughts. You are never out of my heart. You will forever be spoken about. Your name will always be said, and you will always be part of our family. We all miss you and wish things could have been different. Until we can see you again, continue to run free, and do you!
We love and miss you!
Until next time.
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