I was putting my older girls to bed last night when I decided to ask each of them what they disliked most about CDKL5. The younger one quickly said "the seizures", and after mulling it over a bit the oldest said "it is sad". I first asked the younger one, "why do you dislike the seizures?", and she replied by putting her hands up, clenching her jaw, and saying "because you look like this". I then asked my oldest, "why is it sad?", and I was told "because you cannot talk". As I am sitting here I am asking myself the same question and I feel like it is similar to being asked, "would you rather be deaf or blind?". Neither is ideal, both have their challenges, and I would rather none of the above. However, if I had to choose what I dislike most about Sonzee's CDKL5 mutation my answer would be that she is trapped.
On Monday evening I received an email from one of Sonzee's doctors suggesting we put her back on the pain medication, gabapentin, at a higher dose than last time to help with the visceral hyperalgesia. What if she doesn't even have stomach or intestinal pain and I am misinterpreting her vocalizations? What if she is itchy or nauseous? What if she just has a headache or is dizzy from all of the other medications she is on? What if she is just a sassy toddler that cannot get her point across and she wants to be doing something else besides what we think she is wanting to do?
If one wish of mine would be granted, I would use it to have a day where Sonya could communicate to me. A day where we could come up with a system for me to learn her specific movements, facial expressions, and vocalizations so that when our day was done I would still be able to understand her wants and needs. I would ask her to tell me how she would prefer to be handled during a seizure and how best we could comfort her when it was over. I would want her to tell me if I have completely missed the mark with my advocating for things I think she wants or my assumptions of her ailments. There is not much else that is worse than the feeling I have in the pit of my stomach of being wrong about me potentially misinterpreting her discomforts and her being unable to tell me I am wrong.
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