I have been anxiously awaiting the day when we got to pick up Hannah's new AFOs because it seems like the more she walks around, the more her left foot has been turning in and she has been walking on her toes so I know she really needs them. Finally they were ready and we went yesterday to get them. In my excitement I guess I glossed over the reality of what they are, as low-profile and kid-friendly as they look: they're braces for my daughter with CP.
Those moms out there with kids who have been wearing them for awhile are probably at a point now where the AFOs are like extensions of their children's legs and feet. Or maybe not: maybe they still feel strong pangs of sadness each time they put them on their child. Either way, this is all new to me and yet one more step in our journey into the world of special needs. Before AFOs and the walker, I could pretend to the outside world that Hannah was just like other kids, only not yet walking. Now there's no denying that she IS visibly different from most kids her age. Amazing and beautiful and funny and smart, and different.
Once again, grief and sadness blindsided me. It came on the heels of a weekend spent traveling to NY to celebrate my parents' 60th birthdays. And we all had a really amazing time. We couldn't have had a more supportive and positive trip. We saw our dearest family friends and it was so great to be with everyone and feel all of the love they feel for both of my girls, but it also is another "outing" of Hannah and her developmental challenges. During our travels, we took the walker with us everywhere so it got full exposure in rest stops, the hotel, parking lots, etc.
The visit to the orthotist to pick up the AFOs was at 3pm the day after we got home, and both girls were totally exhausted (as was I). The appointment took over two hours. The girls were super stars at entertaining themselves but they were definitely losing it by the end. When we finally got home, B was waiting for us with a yummy meal which we all devoured. After the girls were tucked in bed, I felt dazed and overwhelmed. And that's when I realized that while each step in this process allows Hannah more and more independence, it is also a reminder of her need for the help in the first place.
I know I'll bounce back and be positive again about the great strides Hannah is making. It will just take a little time.
4 comments:
Hey, Krista-
I actually thought about warning you about how I felt when I got the boys' DAFO's, but I didn't want to create any anxiety for you. It was hard for me, and I cried. It was before we had the walker and it was the first outward, visible sign of their differences. To be honest, right now, it's about 50/50.....half the time, I am just concentrating on getting two wiggly little people dressed, into braces and shoes and ready for the day. The other half of the time, I do still get a little sad, and I mope about having to put braces on my tiny boys with CP. I try to shake it off as quickly as I can, and usually looking at their silly, gorgeous faces helps me get over it.
Did you get cool colors? Post some pics!
(((hugs)) In an odd way it reminds me of a much more dramatic version of what I felt when taking dd to get her first glasses (at 2). She put on pair after pair and I had to hold back so she wouldn't see how hard it was for me -- no pair worked, because I wanted to see her FACE and didn't want her to feel badly about herself (like I did as a girl). Now, they are her and I don't mind them (though I do periodically marvel at the beauty of her eyes without them / wince when other children mention them - fearing she'll feel badly).
I know you're thinking - OMG, she has NO IDEA how different this is. Rest assured, I do. I really do, I only tell the story to say, that if something as insignificant as a pair of glasses could rattle my cage...I really recognize how hard this much more significant addition (each addition) must be for you.
To Miss Hannah -- go get 'em kiddo -- are those ladybugs?!
I remember feeling that way with Crew's hearing aids, the glasses, and then the DAFO's. It does get easier as time goes on but there will always be good days and bad. I hope you find peace in your journey.
She looks great in her walker!
I am not to the point of braces for our son with CP yet but it took me a long time to even tell people he had it. The doctors said he has mild CP so I was hoping mild meant, it will go away. When I realized it is not going away it was so hard for me. Our doctors are talking about a feeding tube, In my head I was thinking, feeding tube? that's going the wrong way, We are supposed to be getting closer to "normal" not farther. It is so joyous to see them hit milestones though.
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