A Funny Nose

A week or two ago Sophie made a "Journal Jar" at her weekly church group/activity. This jar is filled with topics to write about in your journal that day. Evidently the lesson on keeping a journal struck a chord and Sophie has been writing in it. I wouldn't say everyday but often, and totally on her own. The other day she brought me her journal so I could read her entries.  Most of the entries were about her favorite things and some of the typical events of the day. One of the topics, obviously from the jar, was about things she didn't like. She listed a few things like oatmeal and scrabbled eggs but then she added she doesn't like her funny nose. That is all she said. She didn't elaborate any farther.

I know she doesn't like that she is different than others. She is at an age where those things become more and more important. And I have heard her say many times that she wishes she hadn't been born with a cleft. When we were expecting Molly she was very worried that Molly would have a cleft too. I don't know if it would have made her feel better that her sister also had a cleft. She just feels a bit singled out I think. She is the one for whom we often have to go to doctors appointments. She is the one who has to have braces and ear tubes. A lot of these feelings are especially pressing right now because her braces are coming off next month and that means she is ready for surgery.

We met with the cranial facial doctor a few weeks ago to talk about this next surgery. This is the big one. The one where they take a bone graft from her hip and insert it into the space in her upper jaw. And if that doesn't sound bad enough, the doctor explained that they pretty much have to do a nose and lip reconstruction to do that. Since Sophie was right there in the room with us, while we were talking to the doctor, she knows exactly what is ahead. She is scared, and rightly so. It doesn't sound fun.

Today at our homeschool co-op there was a mom there with her newly adopted little girl. The baby has a cleft and is just starting the whole process. She is having her lip surgery next month and the mom was asking me questions. I know it was always nice to talk to other moms who had been through this too. It brought back a lot of memories to see her pull out the squeeze bottle to feed the baby. In fact it was the bottle that clued me into the babies cleft in the first place.

I was also sent a link to a blog where a mom who has recently given birth to a baby with a cleft and had just had her first surgery.  She has taken so many pictures of her little girl. I was a bit jealous that she has so many. When Sophie was small we were still using our regular film camera. We got our digital camera when she was almost two years old. I remember taking picture after picture of her trying to capture the smile. The night before her lip surgery I took a bunch more but since I couldn't see the shots until I had them developed, I never knew if I actually got them.

Digital cameras are such a blessing! I not only can check to make sure I captured what I wanted to capture but I can take as many pictures as I want and print only the ones I really like or as I need them. I wish that had been available back then. Digital was still new and so expensive not that long ago.

Here is Sophie with her face all swollen after her lip surgery when she was 3 months old.

She hated the "No-No"s but what person would. Doesn't that face just look traumatized!

Here you can see her black eye and stiches just a few days after lip surgery.

This was the day she got her stitches out.

This was taken on her first birthday. It was about 2 weeks after her palate surgery. It is amazing how quickly they bounce back.

This was taken when she was 5. Sophie was hamming it up for the camera but the close up really shows what a great job her plastic surgeon did. There is a scar and a funny little dip to her nose but when you see the before picture and compare, it is amazing!

I was a little sad to read that one line from Sophie's journal. She knows she looks a little different. I just don't want her to feel like her "funny nose" is some sort of punishment, or that she needs to feel ugly as a result. I have a feeling the coming years may be difficult as she goes through these preteen and teenage years.