I prefer to do positive style posts because that is how it's best for me to deal with all things CDKL5. The past week and a half I have spent each morning deciding which fact I would be sharing about life with CDKL5. My goal is always trying to balance shedding light on some of our hardships while also putting a semi positive spin. However, almost two weeks into this CDKL5 awareness month and it's safe to say it makes me more aware of just how tough life with CDKL5 is.
Over the weekend I wanted to share a fun fact or two about CDKL5. I wanted to capture little bear completing some challenging task that requires her a bit more effort, or her sitting and being happy/content like a lot of other children with CDKL5 mutations. I just wanted to share a picture of her adorable little smile, or maybe even capture a laugh...but none of those things happened. So I skipped posting. It's one thing to go on with our days experiencing each one of them as they come, but it's another to realize that things aren't so great. I guess I don't give it much thought as a whole, but wanting to write a post makes me have to "accept" what exactly is going on.
Sadly a typical day for Sonzee begins around 6:30am with her crying. It takes Sam and I multiple guesses and attempts to calm her before she calms for a bit either in her bouncer, chair, or with some cuddles. The calmness only last temporarily and then she's back to her cries and screams. The rest of the day is a gamble of how much she will cry or be miserable. The majority of days she spends clearly uncomfortable and so we spend the majority of our time trying to figure out what she is telling us so we can fix it. We usually fail miserably and eventually we give up. We change her position all day, give her cuddles, the kids attempt to play with her and entertain her- it's usually a major fail. Eventually it's bedtime and thankfully she sleeps at night or occupies herself quietly in her crib. Then we get to experience our own real life Groundhog Day on repeat...every day.
It's been challenging to adequately represent CDKL5 for Sonzee and be respectful of what I would think she would want me sharing as far as pictures and her day goes. I guess this is the whole part of spreading awareness. Letting others know they aren't alone if their child who has a CDKL5 mutation isn't always smiling and happy and reminding me that it's okay to be angry about the fact that this is the life of our two year old.