I guess I should be writing about Easter and the hope that it brings as I’m sat with the sun shining through the window and bouncing off some Daffodils that are stood in a vase. It would normally be my go to subject at this time of year. Of course Im certainly feeling all those things and have just enjoyed a lovely sun soaked spring walk on this Good Friday morning, which was a lovely way to start the day, but I have other things to say. I’m staying with my son Simon for the weekend who is sadly in bed with Covid. He has been a lucky lad and has escaped it until now, but as he is sleeping it away I thought I would take the opportunity to write a blog that has been on my mind for a while.
For those who follow me you will know that Simon has struggles in life. Mild Cerebral Palsy with learning difficulties was the diagnosis given many many years ago which has made life challenging to say the least. However when he was in his early twenties he developed a condition called Dystonia. ‘Dystonia is a neurological movement disorder characterised by involuntary (unintended) muscle contractions that cause slow repetitive movements or abnormal postures that can sometimes be painful. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. The affected areas and severity of symptoms varies from person to person’. Simons Dystonia effects his eyes (Blepharospasm) causing constant blinking, and the muscles of his Jaw. At best his speech will be a little like he has a stammer but at its worst (normally when under extra stress) his jaw will spasm uncontrollably. It is heart breaking to witness and will need some extra medication and sleep to help calm it down. It can take a while before things settle back to what is manageable for Simon and of course during these times he needs extra support.
“I wish I was normal Mum!” “I wish I was like Kevin, Jordan and Charlotte” My heart broke as Simon said this to me a couple of weeks ago, and I just held him tight and hopefully said all the possible positive and encouraging things that a parent could find to say in that painful moment.
‘Normal’…..conforming to a type, standard, or regular pattern. Kevin, Jordan and Charlotte are Simons’ two Brothers and Sister, thinking about them I wonder how ‘normal’ each of them are!! they each have their own quirks and are very different one from another, but in Simons’ mind they are normal and he knows that his life is different to theirs. I’m sure that they would sometimes question whether their lives are actually ‘normal’ but to Simon in that heart wrenching moment, to be ‘normal’ meant to not be coping with a debilitating illness that causes him so much distress and that short sentence held a longing to be ‘normal’ and in a body that didn’t behave in a way that is out of his control. I watch Simon going through this time and time again and know that if It was me I would just want to stay in bed and hide.
The Blepharospasm is kept in better control by 3 monthly Botox injections and he is on medication for the spasms in his Jaw, but as the Botox wears off he is desperate for his next appointment as the constant blinking makes life hard.
I am thankful that we live in a time where these conditions if not curable are at least managed to a degree that makes life more bearable. I dread to think what life would be like for Simon if that medication wasn’t easily available.
I love Simon to bits and wish at times that I could just take all his difficulties away. “Why me Mum?” “I don’t know Simon” ” But what I do know is that I am here for you when you need me!”
I’m writing this blog at a time when we are thinking about the meaning of Easter, of Hope, and of New life but my heart and hope today are with Simon and others who have to cope with the same or similar circumstances, and for those who give their time to care.
I love you Simon.
Love Alison x
Through rose tinted glasses. 
Lots of love Alison. Watching Simon growing up for the time we lived on the same street, I always admired how you coped. I can only imagine how difficult it must be when your, now, adult child says that to you. It’s also natural for Simon to compare himself to his siblings and how normal their lives must seem, even though we all have our own challenges in life!
Just keep doing what you’ve always done so well, which is to love him unconditionally
God bless x
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Thank you Gill. I seem to have no choice but to keep doing what I’m doing. Its a matter of the heart . Hope your doing ok xx
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Much love from one mother to another. Thank you for sharing this. Happy Easter to you and Simon and your family
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Thankyou. And to you.
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Alison, I cannot imagine what both you and Simon have experienced, but as a mother who knows what loving their child without bounds is, I can imagine the helplessness you feel knowing there’s only so much you can do. But, it is your love and understanding that gives Simon the comfort that he’s not going on this challenging journey alone. A mother’s love is the catalyst that brings balm and a bond that no-one else can. He knows that you’re doing your best; but he has you to express his feelings to and a knowing that only unconditional love will be there for him. I send healing thoughts for Simon’s COVID, much love to you, I wish you both a lovely Easter weekend. xo
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Thank you Laura for such a heartfelt message. I cant get away from that unconditional love a mother has but you put it in a most beautiful way, thank you x
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I am so sorry you and Simon are facing yet another obstacle to add to your already heavy burden, Alison. With ongoing daily struggles, I imagine it is hard to stay upbeat and positive. Finding joy in a beautiful sunny day, walking on a spring morning, seeing gamboling lambs and flowers bursting forth can give you the respite you need and the strength to renew. As Easter shows us, you rise again. Blessings to you and your family. 💜
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Thankyou for your encouragement Eliza. What a lovely thought to be renewed and ‘rise again’ i will hold onto that thought x
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Oh Allison, my heart aches for both of you. Wishing you and your family a Happy Easter, and Simon a speedy recovery from Covid. I hope you take as good care of yourself as you do of Simon. It’s such a lot to cope with.
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I do try and look after myself Joni. Im getting better at it as I get older and more aware of the need too. Happy Eater to you too x
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Blog post of the year! Thank you.
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Thankyou Gary. Always the encourager 🙂
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Deeply touched by what you shared, both in its beauty and courage.
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Thankyou Gary.
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Normal is a complex state but when things go wrong, any normal is great. Been there myself and it seems unobtainable at times. One med, one small step forward and normal will be within sight. It just takes time, bracelets and lots of love and support from others. Sending hugs. ❤
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Thank you Judi. Its an ongoing journey for sure. The only normal for Simon is aceeptance and management but not easy to explain to him poor lad x
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Aww this hit hard. I suffer from CP as well. It is quite debilitating. I am glad that I can carry out kind of a a “normal” life. But there are undoubfully times, where the same thoughts Simon has have coursed through me! It’s hard watching others do things you can merely imagine. I can’t brush my own hair. All my friends are getting their license, and it is so crushing that I cannot. You are doing a great job being there for him ❤️ and he is so strong!!
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Thankyou so much for your thoughts and empathy. Life is tough for so many but you can also feel so alone when life isn’t quite meeting others ‘normal’. Simon has learning difficulties too which makes life hard in lots of areas. I can imagine how hard it is to watch your friends getting there license and not being able to yourself. Simon would not be able to drive either. x
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Yes exactly! Everyone has their challenges, although to various extents, ands some are visible, while others are not. And the lack of seeing others struggling on a daily basis visibly can be isolating. Having learning difficulties would be extremely agonising and lustrating. But that does not make him any less intelligent! Due to my poor vision, I have eye fatigue, can’t see from a distant, miss details, and have difficulty interpreting pictures.
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