It is downright difficult to find the right balance between life in general and all things Sonya/CDKL5. Every day I find myself walking across the thinnest wire. A constant battle to remain balanced on the most narrow of paths. Keeping track of medications, appointments, activities, meals, my list could of course continue, but you all know. You all have your own lives with your personal tight ropes to master. The problem is that I am not so steady with my steps nor am I confident in the way my body is moving. It's quite the balancing act trying to maintain my sanity while dealing with a child who has medical and physical difficulties, and who is the youngest of four children.
I am by no means perfect and I don't even pretend to try to be. Not only would that serve no purpose, but it for sure would be more difficult to pretend. I am not going to make excuses for myself regarding what I choose to make priorities. I have learned over the past 10 months that I can only focus my energy on a small list of "to dos" a day, and personally I am okay with that. I understand my limitations and I have even recently learned to not feel guilty for what I have chosen to move off my limited list (pat on the back to me).
In speaking with others who have been in similar situations as mine I know a lot of their heads would be nodding in agreement that I am doing what I need to do in order to function, and that what I am doing is enough. My mind is constantly in a fog over decisions regarding Sonzee. I anxiously wait for each seizure to come, my mind never at rest. I sit straight up in the middle of the night in panic with fear that I have missed a dosage of her medication, missed a seizure, or feeling to make sure she is breathing. I am constantly wondering and doubting if we are making the best decisions regarding her medications, weans of medications and dosages. I feel guilty that she hasn't gained weight since she is primarily breastfed and wonder if maybe breastfeeding isn't the best choice. Am I the reason why my 14 pound 10 month old is a failure to thrive?? I am pulled in 3 other directions by my highly energetic (thank G-d) older children. The long list of worry and doubts of what I am doing with each of them haunt me daily. Has being so entrenched in Sonzee and CDKL5 taken away from their childhoods? Am I failing them?
I am not looking for sympathy or any "poor Randi" statements. I just ask for a little empathy. I have never been the best at sending cards on birthdays, or making phone calls. I will do my best to celebrate occasions if I am reminded, but I am lucky I remember the dates of Sam's and our children's affairs and then remember to actually celebrate the day when it arrives. To those offended by my out in the clouds demeanor, I am sorry, but at the same time I am not. I am doing the best I can and right now where I stand, I am one small move from losing my balance and falling off the rope.