Brave
I have a very brave girl. There are not many 11 year olds who could manage the emotional aspect of tissue expansion with the grace and good spirits that H. is showing. This isn't because she is clueless about what is going on. She is highly aware of what is happening and she doesn't like it. At all. And I can't blame her a bit. Even though she doesn't like it, she is cooperative and understands why it is happening. We talk often about why this procedure is being done, what is going to happen, and when the expanders will be removed. I can tell you that no one is looking forward to the end of April more than H. is... even though she will be having major surgery to remove them.
In order to grow as much good skin as possible, the expanders need to be filled as much as possible. At first this was once a week, and I traveled with expander supplies and I filled the expanders twice while we were gone. (Can I just say here that I cannot believe there were NO comments on the egregious typo on the last post I wrote about this? The post where I wrote about sticking nOOdles in my daughter's head instead of nEEdles.) No one enjoys it, but I'm pretty good at it now. We went back to the plastic surgeon's this morning for another expansion and we learned now that H's skin has become stretchier we can begin expanding every five days instead of every seven. I have a new load of supplies so we don't have to trek up to the doctor's every time.
Here is H. after five expansions:
As you can see, the expander on her forehead is fairly noticeable now, but the one under her scalp (on her left side), because of the shape of her skull, is still not showing. Here is a close-up of her forehead... it is also a good picture of the skin which the plastic surgeon will replace at the end of April.
Just to be clear, I did ask H.'s permission before I took and posted these photos. We talked about it and she was willing to let me share her experience with everyone... because she waited a long time for a Mommy and a Daddy. She is quite aware of why she waited a long time to be part of a family and she is always asking if her friends in China have Mommies and Daddies yet. (I am happy to say that most of the older children she knew, do indeed have families now.) Children living in orphanages do want families... a Mommy and Daddy, a home, a place to belong, a place to be loved. They may not always be fully aware of what all that will entail or the difficulties of transitions or any other number of hard, grown-up things, but they do know they want love from people they belong to.
H. doesn't want another child to wait a long time for a mommy and a daddy because they look different, so she is willing to show that it is possible to manage the surgeries and the stares and the discomfort... if you have a mommy and a daddy to love you through it.
In order to grow as much good skin as possible, the expanders need to be filled as much as possible. At first this was once a week, and I traveled with expander supplies and I filled the expanders twice while we were gone. (Can I just say here that I cannot believe there were NO comments on the egregious typo on the last post I wrote about this? The post where I wrote about sticking nOOdles in my daughter's head instead of nEEdles.) No one enjoys it, but I'm pretty good at it now. We went back to the plastic surgeon's this morning for another expansion and we learned now that H's skin has become stretchier we can begin expanding every five days instead of every seven. I have a new load of supplies so we don't have to trek up to the doctor's every time.
Here is H. after five expansions:
As you can see, the expander on her forehead is fairly noticeable now, but the one under her scalp (on her left side), because of the shape of her skull, is still not showing. Here is a close-up of her forehead... it is also a good picture of the skin which the plastic surgeon will replace at the end of April.
Just to be clear, I did ask H.'s permission before I took and posted these photos. We talked about it and she was willing to let me share her experience with everyone... because she waited a long time for a Mommy and a Daddy. She is quite aware of why she waited a long time to be part of a family and she is always asking if her friends in China have Mommies and Daddies yet. (I am happy to say that most of the older children she knew, do indeed have families now.) Children living in orphanages do want families... a Mommy and Daddy, a home, a place to belong, a place to be loved. They may not always be fully aware of what all that will entail or the difficulties of transitions or any other number of hard, grown-up things, but they do know they want love from people they belong to.
H. doesn't want another child to wait a long time for a mommy and a daddy because they look different, so she is willing to show that it is possible to manage the surgeries and the stares and the discomfort... if you have a mommy and a daddy to love you through it.
Comments
I am regularly in awe of the bravery and strength of will our children with needs have. I can't believe what our daughter has to endure twice a day for every single day since Christmas and likely for the coming weeks still. Yet she still finds it in her to love us big and strong and TRUST us even though we cannot possibly explain it to her (she's so young) or have her verbalize to us what she thinks or feels (young AND verbally delayed greatly). It's humbling, to say the least.
We are facing another major surgery ourselves in April. Sigh... which will kick off a new level of life-time management and a new normal that will have a huge learning curve for us all. I need some bravery these days!