Dear Sonzee,
Today marks 732 days since you left our physical presence. It feels like an entirely different lifetime ago because that is exactly what it has been. An entire 2 years that didn't include you with us. An entire 2 years that we have had to learn how to be a normal family, a task I am unsure we will ever accomplish. It has been 104 weeks and 4 days learning to navigate being a family that used to have a child with special needs. It has been 2 years of no longer having to keep a hospital bag packed (although I never unpacked it, even after the flood). Two years that we have no longer needed to coordinate vacations and weekends around nursing schedules, planned admissions, and random 100.4-degree unexpected fevers. It has been two years not counting seconds and minutes while you seized, two years of no gj tube changes, no central line challenges, and no arguing with insurance companies. For two years, we have driven by Phoenix Children's Hospital and have not been admitted to the 8th floor with you.
I wish today would mark some finality of the situation, but it doesn't, in fact, it is the opposite. Today, February 3 marks the end of another 365 days and the beginning of another 365 days that will pass me by without you here. A day that will forever be the worst day of my life, but yet (what I imagine to be) your best. How unfair it is that I cannot be there to cheer you on and celebrate all of the Sonzeestones you have finally had the opportunity to accomplish. I hope you have someone cheering you on front and center, and that you feel the cheers that I promise I would have for you if I knew about what was going on. I absolutely hate that I have missed out on 2 years of whatever it is you have become and been able to do. I think that is probably the cruelest part of this all. We all miss out on life with you and being able to celebrate with you.
For the last two years, countless people have said they couldn't imagine the situations we have had to experience, especially us having to bury you. I sometimes wonder myself how I have lived through it because I cannot imagine it either. For four years 11 months and 23 days we lived an insanely unimaginable life, and since you left, we continue to live the life that every family fears they could be.
I am still trying to figure out who I am with the pieces of me that were left here without you. I anticipate it will take a minimum of two more years to even start to sort that out. What I know is that it will pass me by with a lengthy blink of the eye, and I will be left wondering how it has been so long but yet still feels like yesterday that you were being held in my arms. I am thankful, at year two I can still feel you in my arms, and feel the softness of your cheek against mine. I am so thankful that at two years I can still remember all of the details of the exact moment I last saw you forever.
My Sonzee bear, it has been 732 days since you were last here with us physically, and missing you is an understatement, but there has not been a moment in the last 732 days that we have not carried you in our hearts and minds. No matter the number of tears that fall from my eyes because of how much I miss you, I want you to celebrate this day. Two years ago today you were given freedom, a gift I never could give you. So please celebrate doing everything you are now able to do (and if that includes coming and visiting me for the first time in 2 years, that would be greatly appreciated.
Until next time my little bear!!!
I Love you and miss you so so much!
Love always.
Ema
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