My Child Has A Hand Difference
My name is Demelza and my husband and I have two beautiful children. We live in the gorgeous Orange region of NSW. My husband Neil is a farmer and we couldn’t imagine a better life for Billy, 3, and Rachael, 1.
Rachael was born with an ulnar ray deficiency, which is basically that she is missing the two bones in her forearm on her right arm. This means that for her, she has a fused elbow with tiny bones and then a functional wrist which is rotated backwards and two digits – her thumb and index finder.
We found out about her limb and hand difference at birth. I remember the midwife saying “ooh” and me thinking “what does she mean?” wondering at the time if the baby had a port wine stain, or something like that. Never in my wildest dreams would I have imagined Rachael’s limb difference. I remember thinking she had her arm behind her back. When I went to pull it forward, I realised it wasn’t there. Our world stopped. Initially I must have looked so dumbfounded. My doctor just said “sometimes these things happen”.
Once Rachel’s initial checks were done, the doctors and nurses went to get the pediatricians and specialist doctors to check over her and we were left to absorb the news ourselves. I didn’t know what to feel. If it was my fault, something I had done or something that had happened in the pregnancy. Soon we had some doctors in who, whilst I’m sure they said some very reassuring things, I can’t remember any of it other than her heart sounds fine and we will write you referrals to see specialists. Soon we had a referral to see Dr Wilson at the Westmead Children’s Hospital and in the meantime we were offered a counselling service at the hospital, which we turned down.
As a preschool teacher, I work closely with our local Early Intervention service so, just a week after birth, I trotted into the girls there to have a chat with them and see what was available. All the advice was the same: to enjoy our gorgeous girl and see how she grew and adapted – which is exactly what we did.
I fell back on my experience working with children with disabilities. This, combined with the support of the Early Intervention girls and that of my fantastic husband, helped me cope with coming to terms with things.
It took about 6 weeks before I posted a full photo on social media, as I’d been so worried about how other people would judge her and, consequently, us. No-one made any comment at all – which was not what I expected. However many people made reassuring comments in person when they met her for the first time.
Skipping forward 18 months, Rachael has mastered the art of everything she puts her mind to. She feeds herself happily with a spoon and is learning to use a fork. Her teddies are carried around in both arms and she loves to change the channel on the TV remote. She can even open the clips on lunchboxes! She is full of mischief and is an affectionate, cheeky little soul.
Rachael attends daycare one day a week and loves to play with her little friends. Some of the other children have commented on her hand and arm, asking if it’ll grow back when she turns two. I have just told them that it’s just the way she is and she can do everything that they can do. Sometimes adults will make comments but usually they just notice and don’t say anything. So far, we haven’t had to handle anyone saying anything nasty.
If I could go back to the day she was born the biggest message I would tell myself is that no matter how her arm and hand look, she is a capable, strong, determined little person and that the only thing I need to do is love her just the way that she is. She can do everything she wants to and whilst she will face challenges, if she is supported, loved and encouraged then she will be okay.
I found out about Aussie Hands in a conversation with an Occupational Therapist at Westmead Children’s Hospital at Rachael’s 6-week referral. She mentioned it might be a good idea to have a look at the website, among some other groups, and see if there was one we’d like to join. I joined when we got home the next night and went to our first Aussie Hands event when Rachael was just 4 months old. It was lovely to make contact with so many people who have faced the same emotional challenges. We went to the Christmas 2017 party as well. As Rachael grows I know she will enjoy hanging out with friends who are like her.
“For every disability you have, you are blessed with more than enough abilities to overcome your challenges” – Nick Vujicic (born with no arms or legs)