Mostly I don't think about their risk for cancer, but I have to admit the thought has crossed my mind occasionally that with TWO precious daughters having such a high risk for tumors the chance that at least one of them will develop cancer is just plain scary. There are times I look at Elianna's beautiful head of hair and pray she never loses it to chemotherapy. Then there is Micaelyn, who so often complains about her short hair in China, how they shaved it all off "because it had bugs in it!" She has been so happy to let her hair grow out, and after 2 years it is finally to the point of being long (though not as long as she wants it). How awful it would be for her to lose it all again! And obviously losing their hair is minor compared to all the other concerns of a child dealing with cancer.
However, thankfully God is in control, and I allow my faith in Him to guide my life, not my fear of what could happen. I remember back when Micaelyn was in China being concerned about the fact that as an orphan she was NOT receiving any of the necessary screening for tumors. There was a chance we could get her home only to find she had tumors that were too far progressed to be treatable. It was troubling to consider that possibility, but we went on faith that the same God who so perfectly created her was still holding her in the palms of His great hands.
Now I have these TWO precious daughters, both Chinese, though born on the opposite sides of the world, both with the same rare genetic syndrome. Many people with BWS will never know anybody else with the same syndrome, and yet these two girls will grow up together sharing not only a bond of adoption and of ethnicity but also of BWS. They will never have to feel alone in having BWS, they will always have each other! What an amazing bond these two sweet sisters share!
 |
| At the waiting area inside Children's Hospital. When you have a child that has to have blood work taken every 6 weeks plus ultrasounds every 12 weeks you do all you can to minimize the pain and maximize the fun. I do a lot to make our frequent visits to the hospital fun (thank goodness for a good gift shop!), and one of the things I have always done to help Micaelyn is take pictures of her during her ultrasound. She LOVES having her picture taken, so this not only adds an element of fun but also allows her to really see the overall picture of what they are doing. Since the ultrasounds just involve her abdomen, sides, and back she doesn't have to take any clothes off (for this reason I never put her in a dress on hospital days - lifting up her shirt a bit is much less revealing than having to lift a dress all the way up). However, this time we weren't able to take any pictures. The hospital instituted a policy of no pictures. While I understand not taking pictures during certain procedures, particularly if there are safety/emergency concerns, (e.g. I don't take pictures during the blood work because it is a traumatizing event and I feel it would be inappropriate to take pictures of my daughters like this, rather I need to be there holding and comforting them) I really feel it is my right as the parent to choose when I take pictures of my children. Micaelyn was quite disappointed! |
No comments:
Post a Comment