“Can I stay small?”

“I’m not going to grow up. I want to stay small.”

My ten year old son was adamant that he would not grow up. He had a deep sadness in his eyes, but was unable to explain his worries. Yet he kept tearfully saying he wanted to be small and asking me to tell him that he could say small. Nothing reassured him.

A few days ago it became clearer, “I like living here.” followed by “This is where I live, I don’t want to live anywhere else.”

He is worrying about the future – his future.

I reassured him that he doesn’t have to leave home when he is older.

I told him that he will always be my little boy, just like his big brother is. (6ft and still growing!)

I told him that I will always love him.

I told him that I will always look after him.

We had a big cuddle and he seemed happier.

Yet my heart sank.

Did I just lie to my son?

Not intentionally. Surely all parents have these moments? Children worry.

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But their children are not Adam.

 

I will always love him, but what if I just can’t look after him in the future?

He is likely to always need someone to get him out of bed, get him dressed and into his wheelchair. He will need someone else to make his meals and help him to eat. He will probably always need someone to hoist him to the toilet. He will always need someone else to take him out and help care for him. He also has learning disabilities  which makes it likely that he will be an emotionally vulnerable adult.

What if I can’t keep my promise?

I was 31 when he was born and I will always be 31 years older than him.

What will happen when he is 31 and I am 62?

One day I will not be able to do all the things he needs, let alone the things he wants.

Life certainly isn’t fair.

Since our conversation the other day I have felt deflated and lost for a way forward. Worrying about the future is robbing me of today’s joy.

For so many years my biggest fear was that I might lose him.

Now it is that he might lose me.

 

This is why I am spending my every waking moment (and many of my sleeping ones) trying to make our corner of the world more accessible.

Something as simple as a Changing Places toilet means that he can access a place.

Without these, he might end up housebound without me.

 

 

 

 

 

 

My Random Musings

 

Keep Calm and Carry On Linking Sunday

Published by Ordinary Hopes

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

21 thoughts on ““Can I stay small?””

  1. Oh Rachel I share your fears and your last statement became my quote a few years ago.
    But you cannot let the earlier one remain.
    Do not allow the future fears to rob you of today’s joy.
    Acknowledge them. But file them away, every morning if necessary and determine to make the most of the day before you. Mdonr allow those fears to give you the most horrid of emotions, regret.
    Love you xxx

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    1. I know. I am trying my best right now and I will get back to positivity.

      It is made harder when the services which are supposed to help, just don’t.

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  2. So hard.Organised denial I think,is the only way forward.When I hear of a group home near by, or a college for adults with learning difficulties I make a note of it,and then literally file it away for the future.
    Then I (try!) to get on with enjoying(?!?) the now.I’m sorry that’s eluding you right now,that’s sometimes just how it is isn’t it? Take care of you. x

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  3. Being told ka was unlikely to reach 2 broke my heart. But 2 came and went and each year she has continued to grow and get heavier and stronger.
    I remember a case in america where the family wanted to stop their daughter from getting any larger as she would always be a baby emotionally, but she was getting too big physically. Lots of people souter about how it was cruel but we could see their point.
    I have a 15 year old daughter who might outlive me! I never looked that far ahead in her life as she wasn’t supposed to still be here, but what happens when I’m gone. I am truly terrified! She couldn’t continue living with my husband, my in laws are older in laws who can’t care for her, my family is too far away to even know ka.
    My older daughter told me last year that part of the reason she’s made the decision to not have her own children is that she knows she will get kerrianne to look after when I die!
    That is heartbreaking! I’ve no words to describe how heavy my heart is over this.
    I spent years fearing her death and it looks like I’ll be spending even more worrying about mine!
    I totally understand your story Rachel as mine is so similar, except the closest ka gets to understanding my not being here is by regularly telling me to stay here! xxx

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      1. You don’t need to cry over us. I’m finally doing a little less crying, but meds is the reason for that one.
        All we can do is our best.
        Whatever decision we make is right.
        We carry on with our broken bodies and unforgiving guilty consciouses as best as we can
        Love to you xxx

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  7. My father in law developed polio when he was young which left him severely disabled and with and with only 3/4 of one lung and half the other. He went on to become a self reliant barrister with a loving family.
    I hope this might be of some consolation #KCACOLS

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    1. People can overcome so much and it is lovely to read such a positive story. Unfortunately, with learning disabilities as well as ASD Adam struggles with many ordinary parts of life. He is doing well though and I know that, with the right support, he can blossom.

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  8. I want to thank you for being so real, so clear. I have never been in this situation and fear I have nothing to offer but a thank you for sharing, and I want to say how brave you are. This post showed your strength and love for your son. Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday

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  9. Such an honest post, Rachel. Thank you for sharing it with us. I guess I always think of the bible verses ‘Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.’ Matt 6:34. This isn’t meant to be a depressing thought, just the idea that we can only live a day at a time and savour every moment we have and make it count. How wonderful that he feels so happy, loved and safe with you that he expresses it that way. He is blessed to have you all and you, him. #KCACOLS

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  12. Oh what a post, I want to reach out and hug you. The world and life is so much different to have it used to be and assisted living is an amazing facility, I have friends with a son in assisted living and he is independent with dependency, a bit like sheltered accommodation for the elderly, this is has on site support and depending upon the needs, everything is adapted. What a beautiful young man he is going to be, clearly very thoughtful x

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