I started this blog mainly because I wanted to share about our Carol. Carol was born with a Type V hand deformity called brachydactyly (which is a fancy word for underdeveloped fingers). When she was born, doctors and nurses discovered that her left pinky, ring, and middle fingers were smaller than the others. My hope is that this blog will be my outlet and my microphone. I will share the joys and heartaches of watching Carol grow up and spread awareness about this congenital anomaly.
How does it feel to be the parent of your child?
I would not have it any other way! I love my daughter and wholeheartedly believe that she is a gift. Does this answer surprise you?? It should because what mother does not want to give the best of everything to her children? I did not always have this perspective of my daughter's condition. When the nurses first told me that 3 of her fingers were smaller, I cried. I cried because I felt guilty because I thought maybe I had done something wrong to cause the deformity. I cried because I could only imagine all the teasing and bullying she would face in today's world. I cried because life seemed unfair for our family. But, with time, research, and prayer, I became strong. I became strong for my daughter.
I learned that the cause is sometimes unknown. Hand anomalies can be symptoms of other disorders or it can just appear. I learned to stop feeling guilty and to start learning how to care for my child.
In order to equip my daughter with strategies to face possible teasing and bullying, I read books and dug through websites. I learned that the family's attitude is an important factor in deciding how children handle their differences. I show her that her hand anomaly is not a big deal because she can usually do everything that her friends can. Now, she is in the 3rd grade and does not have trouble writing beautiful essays or making friends. She loves to laugh and do silly dances. She is so optimistic that sometimes, I feel like she teaches me what resilience means. When the school year started, I went to school with her to help her talk about her hand to her classmates. She taught them about her anomaly and was brave enough to let her friends take turns looking at it. They loved watching her fingers wiggle! Watching her grow up happily grants me peace with this unexpected family event. I just want my girl to be happy and healthy so the fact that she is both is a blessing!
It's not always easy, though. There are bad days where Carol gets frustrated or embarrassed. One day, I took her to an arcade and there were a group of kids who were staring at her hand. She rushed over to me and asked me if we could go home. Once we got home, she went to her room and put on gloves. (It was summer time.) That day, I let her wallow. I put on my gloves and we pretended we were building snowmen. Sometimes, you just have to let them be kids and get embarrassed... I also needed a break from preaching about different is beautiful. It's hard to think that my beautiful baby girl feels like an ugly duckling.
How is your child developmentally the same and different from other children at the various ages?
Congenital hand deformities do not affect the cognitive, emotional, or social development of children. They also have the same physical milestones as other children their age. Carol is average height, gets good grades at school, and gets along well with her classmates. Her teacher says she has exceptional writing skills. The only slight adjustment she has to make is when she is holding objects with both hands. She needs to mainly use her right hand when using fine motor skills. She uses her right hand to write, pass out papers, and cut with scissors.
What professionals or agencies do you deal with? What services are available to you and your child?
Carol's hand anomaly is minor and does not interrupt her daily life. Thankfully, I have not had to deal with professionals or service agencies. Some services I know are available for other children with more severe congenital hand deformities are occupational therapists who will teach children different methods to complete tasks. They will also work with kids to improve the movement of their joints. They may even recommend modifications with the ultimate goal of helping children be as self-sufficient as they can. Psychologists can help children who are bullied and need to learn to cope. Bullying is a very real threat to people with deformities; they are more likely to be bullied. Doctors can also refer children to surgeons if the need exists. I've read many cases of children who received surgery to improve their quality of life.
How did you find out about the above services?
I spent many hours researching Carol's anomaly. Surprisingly, there wasn't much information specifically about her disorder and how I could help Carol deal with her condition. But, I discovered Amniotic Bond Syndrome (ABS), which has similar effects on those who are diagnosed. I used resources about children with ABS and adjusted the information to fit Carol's needs.
What financial burden, if any, are you experiencing?
There is no additional financial burden to raise and help Carol. Initially, when we were trying to figure out why Carol's fingers were undergrown, we visited the doctor multiple times. But, once she was diagnosed, we started doing our own research. Carol can do many tasks independently, and my hope is that she will continue to show resiliency. I can't forsee us buying any equipment to accommodate her anomaly.
What other information do you want to share?
I found an informative and heart warming video on a Canadian website. I will share the link for you to watch at your leisure. It gives great insight into the lives of parents with children with congenital hand deformities and also includes testimonies of those children. Please make time to watch it!
Thank you for reading! I hope you will continue to check back for updates on the McCan family. And if you are also a parent of a child with congenital hand anomalies, please feel free to leave a comment or private message me!
Love and strength,
Carol's mommy
"The things that make me different are the things that make me."- A. A. Milne, Winnie the Pooh
