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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