Hello, I am Pam Kelly, I am a wife and mother of 3 children. Our youngest child, a girl, was born with a CHD. Although our children are all grown now, a couple of things we especially enjoyed doing as a family while they were growing up were taking vacations all over the US (and sometimes even abroad) plus supporting our kids as they participated/acted in community theatre and school-related productions.
How were you and you family referred to Shriners Hospitals for Children?
We were referred to the Shriners Hospitals for Children – Chicago when Nicole was a baby, by a member of our local Shriners Club. Nicole has ‘aged out’ now, but benefited from the Shriners off and on throughout her childhood years.
What is your experience of having a child with a congenital hand difference?
My experience as a mother of a child with CHD is that at first I felt a lot of worry about how she would fit in with others as she grew up, plus I felt a lot of guilt (I must have eaten something or exercised too much or SOMETHING to have caused this—Not true, but true feelings). When she was a baby and we were out in public, I explained her difference to strangers before they could ask, which made them more comfortable to talk and not turn away. The awesome truth is, by the time she was in school, I realized how ‘just fine’ she was. In fact, she was better/stronger than ‘just fine’, as somehow her difference made her more determined and more dynamic.
How has your child and/or your family adapted to activities?
Nicole just naturally and intuitively knew how to compensate. She even tied her shoes perfectly in kindergarten. My husband showed her how HE tied his shoes and she just figured out how do it her own way from seeing the process.
What were things you did not expect in raising a child with congenital hand differences?
I did not expect the stares from complete strangers, or, maybe I should say I didn’t ‘feel’ what that feels like until to you, and especially your child, until stares are aimed at your baby! It certainly built compassion in me in a way nothing else could have done for people with any kind of difference, physical or mental! Regardless of our differences, we are all awesome and perfect and special!! But, on the other hand (HA!) I also didn’t expect her to adapt so well to all the things I’d thought might be issues, like riding a bike or driving a car, or doing her hair, etc. None were issues!
What would you like new parents of children with congenital hand differences to know?
I would like new parents of children with CHD to know how awesome and perfect and special their child is, and the sky is the limit for their abilities! NEVER sell them short on what they dream of accomplishing! When Nicole came home one day during high school and told me she wanted to test to be a lifeguard I said, “Okay—That sounds like fun!”, but what I THOUGHT was, “How will she ever be able to do that?” Of course, she passed the test and was a lifeguard at our local pools for several years! With your support and encouragement and expectations that “they CAN” your child can be and do everything they dream of! I say this as the proud mother of Miss Iowa 2013