When you find yourself living a life with a special needs child, things that were once "unimaginable" become part of your daily routine, so much so, that your typical does not seem so atypical...to you. Then almost randomly you have these "aha moments" where you realize just how not normal your life, your family's life and your child's life has become. For me one of those series of "aha moments" came while preparing for and during our in-home district nursing evaluation to see if Sonzee qualified for nursing respite vs standard respite.
It is not that I am at all shocked or surprised she qualified for the nursing part of respite. I am more slapped into reality over the fact that her seizure log from January 25 includes 124 seizures and those are not counting the ones that happened while she was in the PEMU or in the last 16 hours. It also does not include an exact count of spasms/multiple seizures that can happen during a 5-7-minute event, it is simply representing the number of episodes she has had in the past 3 months. The fact that this is our normal, our "no big deal" does not faze me daily. We do not bother with rescue medications because they will not do anything positive for her long term, they will only make her dependent, so our "comfort" is 15-21 minutes a day of her seizing. I honestly do not even process that the seizures themselves could render lifeless, it is as if the entire concept of what a seizure actually is has fallen on deaf ears. I am pretty sure this would be a proper time to insert the confused emoji face.
I think about the children and families of CDKL5 children who have lost their lives often, but I do not let it consume me or I would be unable to function. Then suddenly, the news spreads that another child's body just could not compete with the challenges of a CDKL5 mutation and it becomes all too close to home. The distance of that reality is no longer so far away and the weight of what Sonzee is dealing with on a daily basis is thrust into the spotlight. Living with a CDKL5 mutation is not just dealing with developmental delays and seizures, these children are literally fighting just to survive daily. I guess I forgot that?
I do not know what is the "safer" way of living this sort of life. For me it has always been best to keep the fear and reality in the distance but aware that we are not immune, however, on the days these reminders float in it takes a lot of strength to remember to breathe.
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