My Child Has A Hand Difference
By the time you have your fourth baby, you think you have it sorted.
When Analise was born we were told by our Paediatrician that our daughter had a “lobster claw” and that she would “google” some information and get back to us. All the nursing staff in trying to be supportive, we felt, were quite flippant in their “she will be fine” attitude. At the time, as her parents however, we were initially shocked and devastated to have a baby with such a visually confronting hand abnormality.
We decided very quickly though that we needed to be Analise’s advocates and to the outside world we were very positive and protective. Despite ours and everyone else’s positive attitudes, we both spent a long time wondering ‘what else was wrong’ and if Analise had any other problems.
How would she cope with using her hand? How were we going to be able to assist her? How would other people treat her? No-one was able to answer any of our questions and we certainly felt like we were a ‘one in a billion’ statistic, and we felt very isolated.
Three things changed for us.
The first was reading on the internet a comment by a parent of a child with a physical challenge, that children do not know how to feel about their ‘differences’ – they learn from us, our attitudes and the ways we deal and cope with challenges. If we think thay a handicap then it will become one. If we don’t see their differences then neither will they.
Positive parents = positive child! Analise has a left and a right hand – just the same as everyone else – just with a ‘difference’. This mental shift for us was so powerful.
The second thing that changed for us was discovering the term ‘difference’. Prior to that one little word we found it very difficult to simply and eloquently describe Analise’s hand to friends, extended family and curious ‘others’. Difference, is such a beautiful description and people seem to just ‘get it’. Our seven year old daughter’s peer said to her at school, “your sister’s hand is weird” to which our daughter replied, “no, not weird – just different.”
The third and very emotional experience for us was discovering Aussie Hands. Due to technical problems it was not until Analise was nearly ten months old that we discovered that we were in fact not one in a billion and very isolated. We had spent hours fruitlessly researching information about Analise’s hand.
It was on the Aussie Hand brochure that we first saw the term Symbrachydactyly and the relief that we felt was palpable. The number of times I had said, “I just want to talk to other parents that have been through this” – it was an emotional relief to do so. Suddenly everything seemed possible and our future very connected.
When Analise was born her hand difference seemed bigger than her. But as she has grown and developed and uses her left and right hands equally, her hand difference has become such a tiny part of an amazing little girl. As a one year old who is close to taking her first steps, she crawls with lightening speed, she feeds herself (with two fingers) rice bubbles, blueberries, sultanas and everything else that a toddlers discover along the way….
Our hand therapist joked that she may need to have some hand therapy to learn how to co-ordinate her five fingers (two sometimes seems much quicker and all the others don ‘t seem get in the way). She holds onto the swing and loves to climb and pull herself up onto everything.
Loving Analise was instantaneous and powerful, however, accepting her hand difference has been a challenging and confronting process which we are all growing as a result of.
We still know that she is a one in a billion girl for her feisty, quiet determination and beautiful nature but finding out that Symbrachydactyly is 1 in 100,000, has helped enormously.
We have seen our ‘local’ Paediatric hand specialist (1200 kms away) twice now and they are astounded at her dexterity and ease with which she uses her hands equally. No doubt Analise (and us her family) will face challenges along the way but we know with the right attitude and with an amazing organization supporting us, that Analise will be able to achieve anything.