Not enough Prosecco!
It’s taken me awhile to decide to start this blog, a mixture of asking myself ‘Do I really want to do this?’, ‘What would be its purpose?’ and ‘Why should I do this?’ I’m not exactly witty, my grammar is shocking and I didn’t want something that becomes try hard pensive dribble, which I’m prone to! Well the New Year seems to have jolted me into action, too much reflecting on things before midnight and not enough Prosecco!
It has been blogs such as bornjustright and livngonehaded that have inspired me to write up our journey. I’m hoping this process will not only help myself, my son and others feel less isolated, but quite simply document our experiences and truly learn that we are all different, all have limitations of some sort yet we can all achieve amazing things.
Let me start by telling you about our journey so far.
I think I’ve seen something wrong with the baby.
We are family of four, my husband and I have two children, our daughter who is a week away from being three (at the time of writing), and our son who was born October 2015 and it is our son who has a limb difference. We found out about his limb difference at the 12 week scan, after being sent for a walk to ‘try and make baby move around’ we came back into the room to find an additional person in there. The sonographer ran another scan, taking a good look around, then turned to the new person to asked if she agreed. She did.
As you can imagine we were a little puzzled by this point. It was then we were told they think they had spotted something wrong with the baby. I hope that none of you reading this has ever had to hear those words because I cannot tell you the amount of thoughts, 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 so knew the pain of losing an unborn child, I felt I had to brace myself for what ever 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.
Whilst growing up my mum was a childminder and one of the children she looked after for awhile had a limb difference. She never let it stop her doing anything, quite simply because having a limb difference doesn’t, you just find your own way of doing things. This girl my mum looked after is now all grown up and I know she inspires and educates people in what we can achieve. It is her, and others I read about in blogs like the ones I’ve already linked to that give me such peace over my son’s future.
Back to our scan
We were never devasted or saddened by the news
The medical staff seemed confused with our happy reaction, to us there was and continues to be nothing ‘wrong’ with him, his limitation happens to be physical, we all have limitations of some sort, it’s just we don’t always see it. What happened immediately following this scan isn’t worth documenting as it doesn’t shine a nice light on the NHS, which does have its faults but I do think we are blessed to have it. The summary is we were told we had to wait 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. You can see one of the scans in the feature image of this post. From the scans it looked like it stopped at the wrist, although since he was born we can see he has a bit more but we don’t know what yet. She was also able to confirm that 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 banding, or anything else obvious so she just assumed it was not just in baby’s DNA. Maybe later on in our journey together we will discover.
From that scan onwards we were treated like any regular healthy pregnancy, and it was a wonderful few months. It was during this time I discovered there really wasn’t much support out there, especially in the UK for those who have or have relatives who have a limb difference. Certainly not ones who were in the same place as we were. 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 what ever he would like to achieve, it will not stop him living a full and happy life, a lot of ‘support’ places seemed to assume you were coming from the point of being in a negative place about the news. Eventually I found some great blogs from the USA which came from the same mindset as us, hence this blog coming to life, I knew there would be more people in the UK who had some great stories to share about living life fully with a limb difference.
In October 2015 our beautiful baby was born, it was here that we discovered two very exciting things, the gender (boy) and what his arm looked like. We were amazed to find out that 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…yep, 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. My limitation is that I’m not the most confident, especially around other people’s comments, and I just didn’t know (still don’t know for that matter) whether I’m strong enough to handle the ignorant and rude comments, which unfortunately are likely to happen. Just the other day I was watching my son, who is such a happy, smiley baby, and my joy turned into sadness when I thought about the fact that there isn’t anything wrong with him, but there are going to be people in the world who will try to make him think there is. A big reason for this blog is to help me become confident, and support people who may be going through the pains of negative views. My big hope is that those experiences are slim because society is actually more and more accepting of those different from the norm.
So far it’s all been positive, I’m not sure how many people have noticed because he’s either been asleep (so wrapped up and you can’t see his hands) when new people have met him, or they don’t make any comment on it. Children who have met him, however, have been different. They ask questions, want to know why he only has one hand. The funniest question was ‘Did it fall off?’ I love that they ask questions because it provides an opportunity to discuss that we are all different and that’s great.
You’re now up to date with our story so far
We’re waiting to be seen by Plastics department in a hospital near to us, where I assume we’ll find out more about his arm and to discuss his future with prosthetics, that’s if my son choses to wear one.
From here on I will blog about day to day life, new things we are discovering and learning together, me and my right hand man. It might not always be interesting, but hopefully if there are other people out there going through the same things as us it will be a help to us all. I hope you enjoy it and thank you for reading.