Why I Smiled When I Found Out About My Son's Limb Difference
“I think I’ve seen something wrong with the baby…”
They were terrible words to hear, but that was where our upper limb difference journey began.
The 12-week scan had been going smoothly, but we were sent off to go for a walk to “try to make baby move around.” We didn’t suspect anything at the time, as our first child (an amazing daughter) was often in the wrong position during her scans. We went for a little wander, but when we came back into the room there was an additional person there. Unusual. The sonographer ran another scan, taking a good look around, then turned to the new person to ask if she agreed. She did.
It was then we were told they had spotted something “wrong” with the baby. I cannot tell you the amount of dread and worry that rushed through my head in that moment. All I remember from those few seconds of panic was taking a deep breath and holding my husband’s hand tightly. You see, before our daughter we’d had a miscarriage. We knew the pain of losing an unborn child, and I felt I had to brace myself for whatever sadness we were about to experience.
When she told us she didn’t think she could see a left hand, we both smiled. What a relief.
The medical staff seemed confused with our happy reaction. They didn’t know that when I was growing up, my mum was a childminder, and one of the children she looked after had a limb difference. She never let it stop her from doing anything; she just found her own way. That girl is now all grown up, and she and others like her give us peace about our son’s future. To us there was and continues to be nothing “wrong” with him. His limitation happens to be physical, but we all have limitations of some sort — we just don’t always see them.
What happened immediately following this scan isn’t worth documenting as it doesn’t shine a nice light on the National Health Service, which does have its faults, but I think we are blessed to have it. In summary, we were told we had to have some more scans to find out 1) whether the baby definitely didn’t have a left hand and 2) whether it was because of something serious.
Four weeks later we were seen by a lovely specialist sonographer, who was able to confirm that the baby did not have a left hand. From the scans it looked like it stopped at the wrist, although since he was born we can see he has a bit more. She was also able to confirm that the baby looked healthy, which was very reassuring. She wasn’t able to tell us why the hand didn’t grow; there wasn’t evidence of amniotic banding, or anything else obvious. Perhaps it just wasn’t in his DNA. Maybe later on in our journey together, we will discover the reason.
From that scan onwards, we were treated like any other healthy pregnancy, and it was a wonderful few months. But it seemed as if there wasn’t much support, especially in the U.K., for families with a limb difference. A lot of “support” places assumed you were in a negative place about the news, and we weren’t. We were never devastated or saddened by the news of his missing left hand. We have always known he will still be able to achieve whatever he would like to achieve; it will not stop him from living a full and happy life. Eventually I found some great blogs from the USA which came from the same mindset as us, and they brought so much joy into our lives. We’ve since discovered some great UK support such as REACH and Disability is Ability.
In October 2015, our beautiful baby boy was born. We were amazed to find out he had a wrist and a bit of a hand beyond that, which moved slightly. Later in the day he had to go for a few tests to check him over and make sure he was healthy — and then we were allowed to go home and introduce him to everyone!
One of my biggest concerns was how the world was going to react. I’m not the most confident person, and I just didn’t know (and still don’t know) whether I’m strong enough to handle the ignorant and rude comments, which unfortunately are likely to happen. Some days I look at my son, who is such a happy, smiley baby, and my joy turns into sadness when I think about the fact that there isn’t anything wrong with him, but there are people in the world who will try to make him think there is.
I started writing my blog, My Right Hand Man, to hopefully help other people who have just found out their child has an upper limb difference. Our experience seems to be unlike others, because we never had that feeling of sadness over the news. A massive part of that is because we had previous experience and education in the amazing abilities of people with disabilities. It has made me passionate about educating others, to help future parents of children with upper limb differences know that their child is going to be absolutely fine in life.
My right hand man hasn’t even been alive a year and already he is amazing us with what he can achieve. At the moment there is nothing he can’t do — he’s incredibly determined! We had been told he might not crawl… but at 7 months old off he was, crawling away. Proving them all wrong. It is such a joy to sit and watch him interact with the world, explore objects, and figure out how to use them. He does some things differently than other children, and some things are exactly the same. Either way, he finds a way.
I do have days filled with worries, but they are never about what he can achieve, only about how others will treat him. I can’t protect him from everything, only provide him with tools to deal with those tough moments. Witnessing his ability isn’t the biggest thing I’ve taken away from the past few months, it is that he is so much more than “the boy without a hand.” It’s a tiny portion of who he is. Once you stop focusing on what’s not there and instead focus on the entirety of your child, you realize they are amazing! And believe me, when they have discovered how to make the loudest noise possible by banging objects together that should never be banged together, you will not be giving their lack of a hand a second thought!
I used to spend so much time trying to picture how my right hand man might achieve certain tasks, but it didn’t take long for me to realize that was pointless. Whatever the task is, he will be able to do it, so why worry how it looks? Enjoy the journey, enjoy the adventure, and enjoy your born-just-right, different-is-awesome, disability-is-ability, lucky-finned child!
Follow this journey on My Right Hand Man.