I can clearly remember how Sonzee was 2 years ago when she was
close 5.5 months old. Her diagnoses of CDKL5 known to us already for a
little over 3 months. She had been enrolled into therapies for 4.5 months
at that point. Her seizures were finally under some semblance of control,
only happening every other day. I remember being upset with
that form of control. I remember despite knowing the odds of her sitting,
walking, talking, and/or being functional I was filled with so much hope
because she was so young. I remember distinct conversations with her
physical therapist where we would both say that "Sonzee will...." and
"She is so young....". I remember feeling like maybe, just
maybe, she would be the outlier to the (extremely few) journal articles written
that gave the statistics about children with CDKL5.
I can clearly remember 14
months ago when Sonzee was 15 months old. Her life hanging in the balance
as she spent a month in the hospital with it unknown to us whether she would be
leaving the same doors we brought her through in our arms. Her amazing
therapists came and sat there encouraging her along the way. She was
swollen from medications, TPN, and additional fluids. She had
transfusions of blood and various other items to balance her metabolic panel,
and developed an allergic reaction to the one seizure medication that at the
time she appeared to be responding to. Her seizures were at bay, but her
physical development was far worse due to her failing body. I remember
feeling utterly helpless and wondered if it was going to be our turn to join
those who had lost their CDKL5 children.
The years have passed and our
attempts to help Sonzee live her best life possible have not gone the way I
personally have intended. Despite the relentless seizures and the awful
GI system she was blessed with, we have not ever stopped her
therapies. Her therapists sit in our home whether Sonzee is an active
participant for the hours they are scheduled. They reschedule when Sonzee
is having a difficult day and they do their best to help her have the best
quality of life possible. I will never say that the diagnosis of CDKL5
defines who the essence of Sonzee is, BUT I will loudly announce that it plays
a crucial crucial role in her body's ability to achieve skills and perform
"simple" tasks.
Last night was one of those
times where I felt like such a failure despite all the therapeutic efforts we
have tried with Sonzee. I truly believe that the words that led to my
feelings were not intended to cut me like a knife. I will lend it to me being
super sensitive, but I am going to embrace the pain they caused regardless.
No Sonzee does not sit, she does not even want to be held upright at
times. She is wheelchair bound, and this is not changing any time soon.
Her physical abilities do not have anything to do with her personality so
I do not let her lack of development negatively affect me. It is probably
irrational of me to be the slightest bit disappointed with myself over her
development when just yesterday over an 11-hour period she endured 3 seizures
and slept 9 of those hours. There was no time to squeeze in any attempt
at physical therapy. I will take a guess
that her day today will be similar, but she will be up for the challenge in
true Sonzee fashion. She is her absolute
best even with the CDKL5 mutation she was allotted and I will continue to tell
myself I am also.
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