Most of you know that Joy has a birth defect on her left hand. The docs stated it was due to amniotic banding in the womb. Well, it never seems to affect her too much. There are times she'll hold her smaller hand at an angle as if to protect it or not even use it. So, I believe in her mind, she thinks it is not as proficient as her right hand. And in some ways she is correct. Her left side is not as strong as her right side, and her grasp is not as large. It was brought to my attention by a friend last year, when he picked Joy up, that her left side feels much smaller than her right side. When placing my hands at her armpits to lift her, I can definitely feel that something is "missing". Maybe the muscles are smaller? When I look at her without a shirt, her left nipple is definitely smaller. Is anyone reading this blog familiar with this?
Most days I do not pay much attention to Joy's hand. It is just something I am used to. But, when we are around new friends, the topic somehow comes up. It is usually brought up by way of another child grabbing Joy's hand to see why it looks so different than theirs. Joy sometimes shows her annoyance at being tugged on and states, "It's my special hand." I'm somewhat torn over using those words. I used to tell her that God gave her that hand, but now I'm second guessing what I am saying to her. I don't want her to one day be angry at God for giving her a less proficient hand. I want her to know that this is life. Things are not always going to be perfect. Praise God for our differences, trials, and struggles. They make us who we are. I guess until that time comes, or even if that time comes, I'll let her call it her "special hand".
Joy's hand before surgery.
Four years after surgery with painted nails, compliments of Jordan.
10 kind words:
Hi! Did you consider Poland Syndrome?
Hey Cheri, I would seriously have her evaluated for Poland's Syndrome. Poland's Syndrome is when one particular side of the body is underdeveloped. It is generally the left side. The obvious symptom is a small hand, shortened arm. The other symptom is that these kids are also missing their pectoral muscle on the affected side. So the left side of the chest will seem smaller. Sometimes these two things are the only issues. On a bigger scale, internal organs (in the abdominal cavity) can be affected. I know of two children with this diagnosis. One of them has a hand just like Joy's. His is not severe because no internal organs were affected. If you google Poland Syndrome, you can learn some more. I hope this helps.
Adorable glitter nail polish. I can't let Madeline see, or I'll never hear the end of that request! lol
It's so hard to know what to tell these kids about their differences. I struggle to know what to tell my two girls about their clefts as well. Will they grow up thinking it was "their fault" their parents had to give them up because of the cleft? Like you said, I guess we cross that road when we come to it and pray for their hearts to accept it well.
It is so interesting to see the difference in her hand following surgery! I'm with Eva...if Ellery sees that glitter nail polish, we are done for! (We have clear glitter, but it not nearly as glamorous! :))
I too love the glitter nail polish! In fact, I had already bought some pink glitter polish for the girls.
Did Joy have the hand surgery to give her better use/function? I guess I had never noticed the difference until it was clearly shown in your photos.
I'm interested in reading up on the Poland's syndrome. I hope you have a wonderful weekend!
Ma fille a aussi une "main spéciale". Elle ressemble à votre belle Joy!
I think you have the opportunity to give her the words to use now while she's still little so those words will become rote and usable throughout her childhood. At this point kids are curious and don't need a lengthy explanation. I think it would be great to have her simply say, "I was born with one hand that looks different than my other handbut even with a small hand I can still do all the same things you can like throw a ball or hug my mom."
We have friends at church that adopted a beauty from China SN. Her name is Joy as well and she has a birth defect in her hand as well. I don't think she has any fingers. She and my son are both three and are in Sunday School together. He has just started noticing and talking about it to me. I think it was brought on by the realization that his great grandfather has a hook instead of a hand (lost his hand/wriest in a farming accident years ago). I struggle with how to talk to him about it. I usually tell him that is how God made her and she's beautiful (he never says anything negative about it). He seems to think that the reason Joy doesn't have a hook is because "only boys have hooks".
Anyway, do you have any advice about how to talk to him about it at such a young age?
My daughter, Hannah, also from China, has a similar hand around where her left elbow should be.
My brother was born with Poland Syndrome and he also calls his right hand his "special hand." He's going to be 12 in July and we still call it that. He plays basketball, baseball, Xbox, he rides bikes, he does everything a kid of his age does. His hand has never stopped him from doing what he wants. Of course, there are days when he hides his hand, but we tell him there's no need to be embarrassed. The people who are important love him just the way he is and thats what matters the most.
Post a Comment