There are many things that really suck when you have a child with special needs; dealing with developmental delays, making medical decisions, the emotional toll of pretty much every situation that occurs, and the list continues on and on and on. However, I have found a new low as I continue on this journey. A new pain experienced that hurts like nothing I have dealt with before. A feeling that brings tears to my eyes with only a simple thought. A situation I have tried to avoid since the very beginning and clearly like many other battles being fought along this journey I have been unsuccessful.
"It's okay, Ema is too busy"
The words spoken by my 6 year old to my mother at dance when she could not get a hold of me on FaceTime so I could see her new dance outfit. The words that are so untrue as it was just a bad connection and I had to disconnect from the hospital Wi-Fi in order for my phone to work. The words that carry so much more weight and so much disappointment that my heart is torn into two pieces. The words the express the pain of an older sibling trying to cope with an experience that no sibling and especially no child should have to endure.
There used to be a time when days were not filled with constant talk of all things CDKL5. When that combination of characters was not spoken in our home. There once was a time when my 6 year old did not ask about G-tubes, NJ-tubes, and IVs. When she did not draw pictures of four children and explain that the reason she drew Sonzee standing is that “when she is two she will be able to walk”. There used to be a time when our plans were not contingent on a child with special needs. A time when our 6 year old didn't have to wonder if it would be Sam or myself picking her up from school, going to her events, and/or spending the night at home. There used to be a time when we were not a family who was constantly divided.
This hospitalization has rocked us to the core and it continues to go on. Apparently, there are some areas of personal growth I clearly cannot master without spending weeks in the hospital watching my baby girl physically suffer and the older kids emotionally suffer. I guess there is still something to be positively gained from an experience that I will not ever understand. I do not even know that understanding the situation would even matter. A year ago I honestly did not ask G-d "Why me?" On days like today, I am vulnerable to those types of thoughts.
I wish I could clone myself and be at home and in the hospital simultaneously. Even though ¾ of my children “do not need” me in the same way Sonzee does, ALL four of them need me as well as I need all four of my children. My heart hurts thinking of the pain Sonzee’s siblings are experiencing and knowing that there are limitations to how I can fix it. The worst part of it all is that it is a stark reminder that even though I am trying my best, sometimes my best is just not good enough.
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