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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