A mom posted a picture in the CDKL5 parent support group last night of when her daughter was born with a caption referring to how she wishes she could go back to that time when she did not know about seizures or about what bumps her family might face. The majority of the replies that I saw agreed with her statement and pictures of beautiful babies filled the thread along with the amount of time the families experienced their individual "ignorant bliss". I thought for a while about whether I should add a picture of Sonzee, wondering if the reply I was about to give is what others wanted to read, but in the end, I went for it.
After I pressed send on my reply I sat there for a little, reread each comment, and liked all of the adorable baby pictures, and then I could not help it when the tears overtook my eyes. I never had moments of ignorant bliss. My older children never got to see Sonzee in a basket next to my bed while we all oogled and ogled over a brand new baby sister. They never got to take turns holding her while they sat on my bed. They never got to wear their personalized shirts as I had envisioned while we all gathered around for a hospital family photo. I cried about that then and almost 22 months later, I am crying about it now.
The first time her oldest siblings met her it was one on one. They only allowed two people at a time by her bedside. They each stood on chairs while petting her head because they were afraid of the tubes and wires. After visiting her twice, they became sick so they stayed at home. I spent the majority of her first week getting to know her, but not seeing her siblings. The challenges for us started right away.
I always knew something was off a bit when it came to Sonzee. She would randomly scream and then soothe herself during those 2 weeks we found ourselves at home after she was discharged from the NICU. Her eyes made questionable movements, she did not have a consistent social smile, and she did not make much eye contact. She would do little shakes here and there and I would mention to Sam that I thought she was having seizures. When I look back at her beginning yes I have tears, but they aren't because of how great the times were before the storm hit, they are simply because nothing about how her life has gone the way I planned or dreamed about for my littlest baby girl.
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