The ukulele “cure”…

Has alcohol ever talked you into buying something online?

Friends all know that I am a lightweight when it comes to alcohol.  I have no idea how people drink 2 bottles of wine of an evening yet still manage to speak actual words. After a glass I am a bit merry, by one and a half I can no longer type and at two glasses I am ready to sleep.

But back in October 2013 I had a glass or two of wine whilst browsing online. Somehow, the adrenaline of a difficult time in my life must have pushed me through the merry/asleep barrier and I was still able to type. Then I went to sleep.

I woke up fine with absolutely no idea of how I had felt the night before or what I had done. Lucky me!

Then a few days later a parcel arrived…

As I opened it I was filled with the memory of the tears I had cried that night, of the sadness which had overwhelmed me and of the hope I had placed on what I had truly believed, in that moment, to be THE cure for all my son’s difficulties.

Somehow, if only I bought this ukulele my son would learn to play it and all his physical disabilities, health problems and learning difficulties would disappear. It had felt so real at the time and I sobbed once again as I relived that moment where I believed things could get magically better for him. At that point I knew I had been typing through streaming tears that night too.

I remembered so clearly how I had convinced myself that this was all we needed. I saw once again the easy future I had seen for him. It seems silly to say it now, but sometimes you need to believe in something.

I know that there is no “cure” out there – we don’t even have a diagnosis to explain all his difficulties. I do sometimes feel alone in wishing things could be easier for him.

I often read posts on social media from other parents of  disabled children who say that they would not change anything about their child, they would not want to take away their disability because it is a part of who they are. I respect their thoughts and opinions. We all lead different lives.

But I would take away my son’s troubles if I could.

Would taking away his physical pain from dislocated joints change who he is?

Would waving a magic wand to fix his scoliosis change his personality? Or would it just spare him another painful surgical procedure?

Back - Before and After

I would use that same magic wand on all his joints, his osteoporotic bones, the weak lung and his tiny feet which have not grown since he was one year old. He will still be Adam, he will just be spared a lot of pain!

Autism stops him from enjoying games, playing with others and being touched, among other things. Not having autism wouldn’t change who he is but it would make it easier for him to enjoy the life he wants to live.

Sometimes he crumbles before my eyes because he cannot make sense of things.

Would easing his learning disabilities change his personality? I doubt it. He is who he is inside. He wishes he could remember things and understand things. He would rather not feel so upset at everyday things and even things he sees on cartoons.

Is my ability to sit unaided, stand and walk what makes me “me”? I don’t think so.

Adam is so much more than the sum of his parts. He is a wonderful child and would still be wonderful if his life was not so painful.

I wish the ukulele had done the job it promised on the night I was filled with sweet red wine.

I wish it had been the magical cure.

Not for me, because I love every part of him and feel blessed to have him. I am so glad that he is my son. He is wonderful and he truly is one of the most amazing people I have ever met. I love him, just as he is.

I wish it for him because he wishes his life could be easier. I wish his life did not have so much physical or emotional pain. I wish his future could be less scary, for us both, because at 10 years old he is already worrying. He doesn’t want his body to hurt.

His physical difficulties mean he cannot use a toilet unless there is a hoist and a changing bench in the same room. There are so few Changing Places toilet facilities. I don’t have a magic wand so I am trying hard to change the world instead, to make it more accessible for him. Until I can do that, he is restricted in where he can go and how long he can stay out for. If he could only stand for a few moments…

Even though I can’t play that ukulele, I cannot get rid of it.

Somehow it is my symbol of hope.

Giving it away would be giving away my hope.

So I keep it, and I keep hoping.

Maybe one day he will be able to just touch it without the noise making him sad…

One day.

 

 

 

 

My Random Musings
Pink Pear Bear

Published by Ordinary Hopes

Cape-less Crusader, changing the world one toilet at a time.

30 thoughts on “The ukulele “cure”…”

  1. Rachel, this is the first time reading your blog and I really feel where you’re coming from. I’m one of the ‘I wouldn’t change my boy’, he has Autism and accepting and embracing all that comes with it is just MY way of coping and moving forward. We all have very different children and very different feelings but we all need hope xxx

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  3. I wish I had that magic wand to give you. Because it wouldn’t be just for you, it would be for him too. Of course I can’t speak for him, but I could hazard a guess that he’d want to take the pain away if he could, and as a mum that’s what we would all want to do. It’s a bit different to some shades of autism, when the pain of your child not being accepted by the world is a bit less tangible. There are many other shades of autism where those children feel it themselves and want the pain of what’s going on for them to go away. Everyone’s experience is different and we should all try to respect everyone else’s way of feeling. You are doing what you can by trying to change environments for him xx

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  4. I wish there was a magic wand for you and every other parent. This is the first time I reading about your journey and I am blown away by what you have shared. You have penned some very powerful words and words that would stay with me for a long long long time. I felt every tug, every emotion, and every hope. Keep the ukulele, keep the hope. Thanks for sharing with #bigpinklink

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    1. Somehow, giving up that ukulele would feel like saying I don’t believe things can improve any more. Yet every time I see it, I am reminded of how I felt when it arrived and on the night I bought it.

      Thanks for the lovely comment.x

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  5. What comes through in your writing is how much you love your boy, I think we as mums wish our children never had to know pain, to protect them from sadness would be so amazing. Hang onto hope always and may somedays wishes come true for you and your boy xx #anthinggoes

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  6. This is such a touching post. I find it bizarre when people say they wouldn’t remove their child’s pain if they could. Yes, it’s a part of who they are, but removing it wouldn’t change their personalities, as you say, it would just make life easier for them.
    I love that you have hope and you are striving to make the world more accessible for Adam. I truly hope that one day, that ukulele does what it promised
    Thanks for linking up to #AnythingGoes 🙂
    Debbie

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  7. I’m crying as I read this. Such a beautiful post. I worked with many families with children who had chronic health needs that were life limiting or had special needs that meant life was more challenging and they were all amazing. He’s very lucky he’s got that to fight for him! ❤️

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  8. Made me giggle at the beginning. Wine and shopping online isn’t a good combo. I’m a lightweight like you, I wouldn’t manage to drink two bottles of wine! Heartwarming post about your son. I’m glad you’ve decided to keep the ukulele 🙂

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    1. I am very careful to step away from Amazon now if I have a glass of wine! Lucky I didn’t buy anything too big or expensive, I suppose. 🙂

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  11. This is so moving to read. I wish that that the ukele was magic as well. Your love comes shining through the words and others can learn by you sharing your experiences. It sounds like you are doing an amazing job xx

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  14. Ah. This made me laugh in the first paragraph or so, then well up as I read on. As the mum of an 11 year old with high functioning autism, I understand what it is like to have a child who faces and uncertain future. I can’t imagine what it must be like to have physical pain on top of that. There is nothing worse than feeling powerless where our kids are concerned – their pain is our pain. Your little boy is lucky to have you x

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  16. This is another great blog. Booze or no booze I am constantly grasping at the magical non-existent cure. I like the symbolism of the ukelele though, maybe we #autismmums should all get one and play together badly and drunkenly once a month!!!
    #bigpinklink

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