Tuesday, February 6, 2018

It is not the same

Sunday marked the official beginning of "Birthday Week".  To be honest I still have not decorated the chalk board wall in the playroom, and I have yet to hang the birthday cupcake door sign.  Birthdays are a source of excitement in our house, it is one of those things I pride myself on.  The joy that comes from the birthday child is easy to feed off of and something that helps hold me accountable for "birthday week" follow through.  Besides me saying that it is "birthday week" Sonzee is not showing any source of excitement.  She doesn't run to the playroom to see that the wall is ready for her to pose for pictures.  She doesn't ask who the presents on the shelf in the garage are for.  She is not able to show if she is even fully aware that it is her birthday this weekend.

I have no idea why, but the weight of all these events and milestones have been much more challenging for me to accept recently.  Maybe it is because 3 is typically that age where a lot of things just click for a child.  It is the age that represents so much change, so much more "maturity" than the first years of life.  It is the year that all those amazing personality traits develop, and that individual personality becomes more known.  Sure, we have a glimpse of Sonzee, but sometimes I feel like I am completely off the mark.  I often wonder if her eye rolls and head turns are not sass, but rather just her oculomotor apraxia and muscle weakness?  

I have been watching videos of her first years of life, she was so happy her first year, so full of smiles and life.  If she could be stuck in a Groundhog Day for a year I would choose that first year of her life.  The year before her EEG background turned to hypsarrhythmia, before her seizures became so much longer and so much more often, before we really dealt with her GI issues, before feeding tubes and the ketogenic diet, before her ridiculously high 2-month steroid treatment, before multiple medication changes, before we started to really gamble, before she lost her true Sonzee happiness.  I think my heart hurts worse now than it did then, and I remember thinking that was not possible.  


I am going to get her wall decorated, and before this post is published the cupcake birthday sign will be hanging on the front door.  The final items for her birthday dinner will be delivered tomorrow and by Friday night the tables will be set, and the house will look like a party city.  Sonzee's siblings will be my source of birthday week motivation and Sonzee will have no choice but to embrace this celebration and know it is completely for her.  However, for tonight, I am going to take a brief pity party time out and cry over all the things she and therefore I miss out on all due to CDKL5.

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