Monday, January 22, 2018

Toughing it out

This past summer our oldest son celebrated his 6th birthday, sadly (and I suppose only fitting for a middle child) life got in the way and we never celebrated his big day with a party.  Fast forward to biggest sisters 8th birthday that just occurred, and I couldn't in good conscious (or without never hearing the end of it) throw her a birthday party without having had one for him.  So yesterday we took the morning to celebrate our daughter and the afternoon to celebrate our son.  Two parties, two different locations, two different parts of Phoenix, two different groups of children, but one fun filled (exhausting) day.

With the day scheduled to focus on our older two children it made perfect sense that Sonzee would decide to have one of her atrocious seizure nights the night before.  Really it included the day before as well, so let's just say the 24 hours preceding the parties (as well as the parties themselves).  I already have so much guilt as it is with my four other children, I was not adding "missing 2 birthday parties" to the list, so Sam and I watched her closely and explained to her that today was not her day.  One thing about Sonzee is how determined she is when she wants to be, so despite the fact that she surely would have preferred to spend the day in bed she managed to do what she does best (second to seizing) and tough it out. 

Her day did finish with a warm bath and some rescue meds but she managed to experience some incredible experiences with her siblings, complete with her big sister pushing her around the ice rink, and having cupcake frosting twice in one day.  I really cannot stand how much the effects of CDKL5 attempt to throw wrenches in everything we do.  I know Sonzee would have been so disappointed to not share in the festivities of her siblings today so I am glad Sam and I were able to remain calm and trust our seizure management enough to not have to split parenting duty between parties and the ER and that she was able to stick it out. 

CDKL5....you are going to have to try harder because Sonzee is quite a resilient little bear.

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