When Sonya was diagnosed with epilepsy I told myself it was ok to grieve. It was normal to mourn the loss of "my perfectly healthy baby". So many emotions came flooding all at once. Fear, panic, shock, disbelief, sadness.
I remember the day before we learned of her CDKL5 diagnosis I was talking to my best friend. I told her that Sonya's neurologist called and told me she had news she wanted to tell us. I remember telling her (trying to hold back tears) that it couldn't be good...and what if Sonya never knew me? What if days went by and she didn't even know she was alive? What if she was a baby forever?
I could tell she too was holding back her tears, but she managed to say "You know Randi, how lucky you will be if she is at home with you forever. A lot of people have a difficult time with their kids growing up and moving out, and you'll get to keep Sonya at home forever." I have to be honest, 1. I hadn't thought of it like that before and 2. I wasn't really ready to accept that...I was so scared of that actually.
Fast forward a couple of months. I went to the amazing parent support group at the AZ school for the deaf and blind. There are kiddos who have all different diagnoses, and parents of kids who vary in age and stage in their individual disorders. There was a new mom who expressed her same emotion of sadness at the fact that her daughter would most likely be a baby forever. I nodded along with tears in my eyes. I understand you my eyes said from across the room. There was a husband and wife team there as well. Normally the husband is unable to come, but this time he came. He said "you know, we have 4 kids, our older kids, they don't want to cuddle, they don't want to be near us sometimes, they are grown up...but "Sarah" (change of name for privacy) she is our baby forever. We appreciate so much more because of her. We see more beauty because of her. She is a blessing. When we want to cuddle, we have her". This time again with tears in my eyes, but with a crooked smile from across the room, I nodded, as if to say, "what he said".