Before, I knew there were problems. But I didn't know there were permanent problems. I couldn't know for sure that it's not just a small delay unconnected to anything more. But this is it. I have to face it. Whether or not it's Cohen Syndrome, I now know that it is something genetic or chromosomal.
I can't know the prognosis in any case. Even amongst individuals with Cohen Syndrome, there is SUCH a wide range of abilities and level of development.
I keep repeating the same positive lines that worked before:
at least it's not life threatening
she's the same Adel as before
it's not that my child has a problem- this neshoma would be born under these circumstances anyway, and I'm lucky it was I who was chosen
B"H we have a world of resources to help her and access to so much information
Now I keep relaying them dryly.
But I don't want her to be abnormal. I want her to talk. I want her to walk. I want her to get married and have kids. I don't want her to lose sight in these precious oygelech. I don't want her to look weird.
In the meantime, yes, she is the same Adi. She is sweet and precious and lovable. She's my little birdie. She doesn't know why I cry when I hug her. I want there to be only positive emotions in her baby world. Smiles. Hugs. Kisses. Acceptance. And lots and lots of love.
That's right. She's still the same Adi & she's delicious. Happy 11th monthday, Birdie!
ReplyDeleteAnd BTW, I love those oygelach! I totally thought all my kids would have blue eyes. The girls do & Dovy did. Now they are a very cool shade of hazel. His Tatty's eyes exactly.
ReplyDeleteThanks... she's already all dressed up in a sweet, new fall outfit for her 11 month photo shoot. :D
ReplyDeleteIt's always fun to see how the eyes will turn out. Amongst our kids, blue to brown is 2:1. When you count the adults, too, it's 2:3.
In my family the brown genes are rather downtrodden. I have blue eyes & BA has hazel. So far 2 kids with blue eyes & Dovy's are looking hazel, but sometimes they look blue. Ah, who knows? No one in my house is dressed up for anything because we're all miserable. We all have colds. Chayale got sent home from playgroup for lying around listlessly & Dovy has little red rimmed eyes & some sort of spots on his torso.
ReplyDeleteOy. :( I hope it's not chicken pox! Refua sheleima to your clan.
ReplyDeletenope it's 2 complete sets of ear infections. way, way better than chicken pox. dovy was running 104 today. i thought that was kind of odd for an ear infections, but what do I know?
ReplyDeletethat bottom picture is awesome. love those baby blues!
ReplyDelete