Pre-Appointment Jitters

It’s the night before we head up for Claire’s appointment with Dr. Yamashiro. I am having some crazy anxiety and emotions. I am really excited that we are going to be beginning the next part of Claire’s journey but really sad at the same time. While I was pregnant I would sometimes worry about how everyone would react to Claire and how different it would really be to have a baby with a cleft. Now that she is here all those worries are gone and I don’t even see her cleft anymore, I never really did. She is just my perfect little angel who brightens my day every day, and my nights and very very early mornings! I have never thought about her as having a defect or a handicap. Sometimes that in itself makes it hard to sit in the waiting room.

I remember waiting to see the genetic counselor in St. George. I didn’t really know what to expect but when we got to the waiting room it was completely full. I looked around at the other children, and most of them were mentally handicapped, and honestly that was really hard to swallow. All I could think is, “what are we doing here? Claire isn’t handicapped?” I felt like we were all under this “label” and it was hard to swallow. I see my baby as completely normal! Seeing her that way in my eyes and having to alter her appearance for her well-being is very bittersweet.

So, I sit here tonight thinking about how this is our last night without having to worry about retainers and medical tape and I find myself very sad. I don’t want to look at my daughter everyday and see this medical tape on her face. I don’t want to have to take this retainer in and out of her little mouth everday and put her through that. And I really don’t want to see my daughter change. Its hard enough to watch them grow so much so fast, but this is going to completely alter her appearance. That to me is the epitome  of bittersweet.

I thought that one of the hardest parts of our journey was going to be the waiting. Waiting to start the NAM procedure, waiting for surgery, now I know the hardest part is actually having the time come and letting go of this beautiful smile that is Claire’s and no one else’s. Its my daughter’s smile, the smile that I got the first time she smiled at me, the smile I get in the morning when she first sees me, and also the smile I get when she is farting like crazy! Its part of the perfect, beautiful face that belongs to my angel and I don’t want to see it change.

I get scared that its going to be really hard to get her retainer in and out. I am really afraid to do the medical tape for  her lip and worry that Miss Busy Hands Claire is going to pull at it all day because she cant keep her hands from her face. She couldn’t before she was born either! We would always see her with her hands by her face in her ultrasounds.

I guess this is the calm before the storm. This is the beginning of our bi-weekly visits. Thankfully we are lucky enough to have Grandmas who have the time to make these trips with us. It makes it so much easier to have extra hands and support. The plan is to make bi-weekly visits with Dr. Yamashiro to do adjustments on her retainer  until we do her first surgical procedure which we plan on doing in September. It’s the beginning of a very long, and not so easy road. I am so grateful that we have such an amazing family, and strong extended support systems as well. We are amazed and appreciative everyday by the constant support that we have!