Tuesday, March 20, 2018

The other side

I cannot remember exactly where my mindset was in October of 2015 but being a rookie on this journey I can guess I was in a more optimistic position.  I had witnessed fewer seizures, experienced fewer moments of overall defeat for Sonzee, not fully addressed her diagnosis of her being Failure to Thrive and had not done her first medication wean.  I had thoughts about wishing things would be better for Sonya, whatever that meant in my mind at the time, but then wrote a post about being content with where things were personally, because you just never know what the alternatives really are, even when from the outside others situations appear more ideal.  

There is honestly NO ideal way to have a CDKL5 mutation.  No mutation is "better" than another, they are all essentially awful and unwanted, and each child presents with unique strengths and challenges.  There is not one parent of a child diagnosed with CDKL5 (that I know of), who prayed for their child to have a mutation in their CDKL5 gene and present with whatever skill sets and or medical complexities they do because of that mutation.  Some children with CDKL5 do walk, some do crawl, some can sit, some have a limited vocabulary but are able to communicate verbally, some have behavioral difficulties, some have respiratory issues, obviously the majority if not all, have the seizure component, but there are no two kiddos who are exactly alike.  Every child who has a CDKL5 diagnosis and their family experience heart aching, gut wrenching struggles, yet I am sitting here wishing Sonzee did not have the specific challenges she has.


Why do her struggles have to be what they are?  Why couldn't she be one of the more mobile children with fewer GI and motility issues?  Why couldn't she be one of the miracle stories where CBD worked?  Why couldn't she be one of those kiddos that thrived when her seizures have been momentarily controlled?  What would it be like in our house if she showed negative behaviors such as wreaking havoc on the playroom and eating non-food items?  Why can't she tolerate the amount of food she NEEDS to survive?  I know handpicking the way CDKL5 could affect her would not be a better idea, and knowing my luck, I would probably not do her any better justice, but I wish I could have an alternative version of her story playing out next to me for me to see what it would be like if she did not have the specific set of challenges she was given.  Yet 2 years and 5 months after my optimistic approach at turning lemons into lemonade, knowing that "the grass is always greener on the other side" is not always the case, I can't help but wish so deeply that she had "the other side".   

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