Dear Sonzee,
Another 4+ weeks has come and gone, meaning another month passed us by without you here. This will be the last month that your brother will be your younger brother. Well, I suppose he will *always be your younger brother, but not when it comes to his present age. In 25 days, he will turn an age that you never were afforded the opportunity to. My heart panics and aches more than it does on a typical day. I am really struggling with all of this. You lived 4 years 11 months and 23 days. Your brother as of today is 4 years 11 months and 6 days. In 2 days equivalent time instead of you living life you had already begun your dying process. The comparison of dates makes me sick to my stomach, but yet it is something I cannot avoid doing. It is so hard to watch his life and not compare to how different yours was.
This month felt like the beginning of a very very long hike up an extremely steep mountain. I try to find little things to brighten my day, like the beautiful fall leaves we saw in Chicago that were red, or the fact that you brought the first snowfall of the season at Bear Pines today. But, I truly dislike this entire season. I am trying to overcompensate my lack of desire to bring autumn and decorations into the house by going purchase crazy accenting things around the house. I know now it is how I handle the toughest grief. My inability to control the fact that you died and life won't ever be the same gets balanced out by my obsessive need to try and feel better by buying things. I don't know if aba would agree with it, but when it comes to my spending money to try to make myself feel better, he lets it go since it is just amazon. (We both know it could totally be worse). The truth is, the happiness is only fleeting and then I am back on my search to fix the broken pieces of my heart...spoiler alert, nothing seems to work.
This month makes me feel further from you and brought out too many realizations. For example, it has been 3 years since I last stepped foot into an inpatient room at Phoenix Children's Hospital. By the way, your siblings still call it your hospital. Laeya told me last night she thinks about you every time we drive by it. (That is a lot). While on that topic, I am pretty sure it has been more than 3 years since we took you to the emergency department. So much time has passed but your life still feels like it just ended yesterday. There are facts I have forgotten, the smaller details of medication names and doses, but my ability to draw up any amount of mls into a medicine syringe without looking is still right on point. (It makes me smile and sing "hooray for ema" every time).
I feel further from the life of being a medically complex mom, but nowhere near living a life as a mom
of neurotypical kids. I can fake it, I can do my best to fit in, but there will always be you missing. Like at every hockey game or we aren't boarding a plane first. I still look for the handicap section at every ice rink and think about how we would have taken you. I wonder though if it would be as much. I wonder sometimes if you left us so your siblings could live a more normal life, so I could attempt to be more present for them. I still struggle with doing just that. You aren't here physically for me to spend my time with, but I am also not the same person I once was and the exhaustion and the ability/desire to be present isn't always what it should be.
This month was just another on the long road of life without you here. Another month for me to continue to learn how to balance life and death. Another month for me to continue with my Sonzee-stones of trying to put one foot in front of the other. Another month of being a grieving mother to 4 living children and you.
Anyway baby girl, I love and miss you. Continue to visit me and make yourself known so I don't doubt it.
Until next time,
Love always,
Ema
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