This week I was explaining to one of the classes I teach what it means to be in ’emotional conflict’; to feel conflicted. Today, as I packed my sons suitcase for his week-long residential with school, I became the embodiment of that description.

Me, Harry and his suitcase as he gets ready for his residential

When I asked Harry if he was excited to go away with the staff and friends he adores he told me ‘no’ several times and I just wanted to wrap my arms around him and keep him with me. But that reaction, as natural as it is, is never helpful. With all children, but particularly those with special needs or disabilities, we as parents need to help them spread their wings and grow. We cheer them when they succeed and we catch them when they fall and all of that is part of the life they carve for themselves.

But Harry’s life is full of fears for me as his mum. His vulnerability is immense, his capacity to manage his own life independently is non-existent but this doesn’t mean that he can’t and shouldn’t live a life full of adventure and challenges. I am the first one to help him see the world but this is where I come unstuck. It’s always me. I am always at his side. I don’t actually think he always needs me there, but I need to be.

Harrys Dad is fantastic at pushing him to be more independent. I know this is where I falter. My partner Andrew encourages Harry to walk at our side when we are out and about. Harry’s hand creeps for mine and I feel so relieved to feel the warmth and comfort of his hand in mine but Andrew laughs at me and encourages Harry to walk alone. To be the young man he is and not the little boy I see too often. To give him some autonomy and to reduce his dependence on me. I get it, don’t get me wrong, and its 100% the right thing to do but wow I hate it. At one time I thought that having a baby with Goldenhar Syndrome and Autism was my biggest challenge but I was wrong. Letting my boy grow up is way harder than I ever expected it would be and as I kissed him goodbye at his Dad’s today before his residential I felt a sad ache.

You see I am so excited about his adventure but I worry what may happen while he is apart from me and taking part in all sorts of daring (and brilliant) activities. I worry daily that he will be ok with the uneven floor surfaces, with the different routines, without his family.

I am relieved to know that my sleep will be undisturbed for a week and that I won’t have the 2 or 4 am wake up calls that I’ve been having lately as Harry battles with a change that he can’t understand or explain in his internal body clock. But I feel guilty that his absence generates even the briefest moment of relief. I feel like I am betraying him

me and Oliver

I am very much looking forward to spending time with Oliver without the distractions of Harry interrupting almost every conversation we have. Oliver NEEDS this time with me and with his Dad and he will benefit so much from a relaxed home as he often takes the brunt of Harry’s frustrations. But I feel bad that I am enjoying time without Harry as if he is an inconvenience or problem in some way, which he never is. Then, as I watch the clock for Harry’s return, I feel awful that I struggle to immerse myself in time with my other son who needs me just as much, if not more than Harry does.

On Tuesday, I will celebrate my 40th birthday with my family which I am really looking forward to but I will feel Harry’s absence so keenly. Cutting his food up, ensuring that he’s not on technology at the table, making sure that he is drinking enough to prevent his chronic constipation, these are a few of the things that I do on autopilot and without Harry here I feel somewhat redundant. It’s so weird to be free of someone’s dependency and now I realise that the way of life I had once dreaded has become the fabric of who I am and I would never ever change it.

It’s only been a few hours since I  dropped the boys off with their Dad and yet I am already looking forward to Saturday when we are all reunited. Until then, I will enjoy my time with Oliver, catch up on some much needed sleep, drink in the peace and unwanted release from my usual intense responsibilities, have fun celebrating my birthday through the week with family and friends and use it as the perfect excuse to drink gin and eat cheese. My toast will be “To the love that teaches us who we are and gives us the strength to be the best versions of ourselves” Cheers.

 Harry strokes my face me kissing H

Chat soon

Charlie xxx

If you are the mum of a child with a diagnosis and/or additional needs and you would value hearing from another mum who truly ‘gets it’ and often says what you feel too nervous to admit (plus a great community!) then sign up to my newsletter now! 

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