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Ups and Downs

I’m tired, and so my emotions are sensitive!

Life is really busy at the moment, full of lovely things (like my crafty business venture slowly growing) which is wonderful but it brings a certain level of tiredness with it, and that probably (definitely) makes me a little bit more sensitive to what’s going on around me. Coffee helps. On our limb difference journey, for myself personally, that means there have been a few ups and downs, although I must say the down is tiny and the ups are HUGE. I thought I’d share both anyway because then you know what’s honestly going on and maybe you can relate.

The Ups

Within this busy period I have managed to find the space to simply watch my right hand man play, often you can be quite up close so it’s been nice to sit back a bit more, and I’ve seen him play in a different way. To see him interact with objects is wonderful, as it is for any child as they’re developing and learning, but the thing that’s been striking me the past fews weeks is just how much he uses his left arm. As you know, I’ve always known he will be full of ability and that he’ll always find his way of doing things, but I don’t think I’d really appreciated the vastness of this ability.

It’s huge.

Things I’ve never even thought of, the biggest one was the other week when playing with a musical toy that had this teeny tiny sliding switch to turn it on and off. Super for fine motor skills. However my right hand man didn’t use his fingers on his right hand, he was straight in there with his left, using his arm to find a way to do it. He didn’t struggle, he didn’t sit there trying to work out how to use it to complete his chosen task, he just did it. There’s no “oh I haven’t got fingers so my arm hasn’t got a place in this task” it’s just boom, task done. It’s fully in there, the whole of him involved and without limits. I think it’s struck me more because until this point he did actually use the two limbs for completely different tasks (aka right = grabbing left = BANGING!) but as he’s growing that task allocation is breaking down. This week we noticed this when he was doing a delicate task, now it’s rare that my right hand man is delicate in anything, but this particular task you had to gently move and align a marble into a particular position in this course. His right hand barely made an appearance in this task, every gentle and precise movement of the ball was done with his left arm. It’s an incredible joy to watch.

 

The Downs

Theme parks. Urgh. Yet another post has come my way this week about a theme park not letting someone on a ride because of their limb difference. It fills me with dread, fear and anger. Unless something changes within the next few years it does scare me that us having this experience is highly likely to be in our future. I don’t feel ready to handle the rude staff members, I don’t know if I’m ready to help my right hand man process how the experience makes him feel, I don’t feel ready to come face to face with what is an outdated and ill informed policy. What’s even the process? Do we have to ask when we buy our tickets if there are rides they won’t allow him to go on? How do I guide him through that experience?

 

Generally

It is small down, it just stirs up lots of raw emotions and I don’t know how to handle it, and I feel silly because it’s getting worked up over something that may never even happen. It’s hard when you can see him doing such amazing things and being full of ability. He’s not even 2 and he can ride a scooter, he can climb ladders, he can finally be delicate, he can carry plates, cups, lift up huge objects, thread chord into small holes…I quite honestly could go on. To know that his future will hold moments of people telling him he can’t do something that other children can do because of either a poor policy or poor assumption is tough. That’s always what I find hard, not what he will be able to achieve because his ability is bountiful, but of how some people will treat him. I’m not thick skinned, if you knock me down I will always get back up again, but I’ll have a good cry along the way! The Ups though…wow…honestly dust the down of my shoulder because the ups are incredible, there’s far more ups than downs and they are why I go to bed with a smile on my face.

 

 

 

2 opinions on “Ups and Downs”

  1. Are you familiar with with any online support groups? I am 19 weeks pregnant and recently found out that my baby boy has an underdeveloped left hand. I would love to see more stories and have a place to ask questions. I am so concerned that there is some related syndrome causing the anomaly even though my Dr says that it is most likely just the hand as he has no other abnormal findings at this time.

    1. Hi, great to hear from you. Yes in the UK there is Reach, who are a great charity and provide amazing support. There’s also the Lucky Fin Project who are global, Molly, who runs it, is easy to get hold of via Facebook and has a wealth of support and connections to help you find others you can chat to. I hope these are helpful :) congratulations on your pregnancy, my son doesn’t have any other related syndromes, they never saw anything during the pregnancy and he’s just incredible. X

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