Ignore, challenge, accept or embrace?

This trip was planned. The sat-nav was set, the kids in the car, the mobility buggy packed, and a toy train in my daughters hand. The long awaiting launch of a charity called Funny Lumps, supporting children with neurofibromatosis type 1, the tumour condition both dad and Isaac have. We were looking forward to it. A chance to meet other families coping with the same condition, the chance to hear information on the condition and a great opportunity for the children to explore the Riverside museum.
I never saw one exhibit. I never spoke to one other family with NF1, and we didn’t get any more information about the condition. What I did see though was a reflection on how the world sees my children. As I witnessed some ignoring them, others challenging them, some accepting them and a few precious strangers embracing them, it opened my eyes to the world outside my own.
Here is the story of the trip to the museum:

I’ve stood here almost 20 minutes now and you are just as excited and enthralled as you were the moment we arrived. Over 50 people must have passed you by now. One or two of whom have actually pushed you aside. An innocent, happy, excited child just engrossed in your own little world fascinated by the simple opening and closing of the doors others are just walking through and ignoring. Doors, two sets, one after the other. Automatically opening and closing as people enter and leave. A little piece of heaven to you.

You notice the exact spot that triggers the mechanism to work, you notice the tiny red flashing light above, you feel the breeze and the drops of rain and the difference in temperature as both doors open at once. You love the passing from one terrain to an other, the transition from inside to out and the change in flooring. You get excited as you see that an approaching stranger is going to cause something to happen that you can predict. And even though you knew what would happen it still brings you delight. Again and again and again. Over and over, time without number. Oblivious to others reactions, oblivious to the cold, or any danger, or even where you are.

I want to be like that. I want to embrace the wonder, the freedom, the awe of it all. I want to accept that this is what you love. Not the fascination of the old trains, buses, taxis and trams. Not the contents of an old campervan. Not the old noises of previous fire engines and police cars. But the opening and closing of automatic doors.

A elderly couple passes by. They ignore you. Families rushing in and out of the pouring rain ignore you too. Coach loads of strangers ignore you. Tall men and short women ignore you. Why pay attention to a flapping, vocalising, strangers child? Why bother with someone clearly different?
In life so many people will ignore us. But keep on going son. Keep on loving life. Don’t let the fact others are not paying attention affect how you are or what you do. It is better they ignore you than hurt you or laugh at you. Let them ignore you. Mummy isn’t ignoring you. God will never ignore you. As others carry on with their life you carry on with your love affair with your doors. And may we all get excited about something and find joy like you have.

A family with a young baby challenges you. You are in the way of their pram. Your world momentarily clashed with theirs. The same with those teenage girls. You just happened to be in front of them. With a little encouragement and physical prompting the challenge was resolved. Sometimes lives collide. People clash. People can get in our way. But patience and encouragement go a long way. Not everyone likes what you do my precious. Everyone is different. In those challenges we all learn though. You had to pop out your bubble for a bit. They all had to be more aware too. A little inconvenience perhaps but life goes on. Think of all those people that haven’t challenged you though. Because the world really is full of love. And there will always be people on your side. Life has many challenges but may we all learn to grow and be better for them. Move on, keep flapping and keep laughing son.

A mother smiles at me. That knowing smile from a weary stranger. The 15 or 16 year old with her is hooked under her arm, held close while he grunts. ‘Autism’, she whispers with love in her eyes. The look of a fellow special needs mum who has found herself in a similar place in the past. Acceptance that life isn’t always as you thought it would be. Acceptance of difference. Acceptance that life goes on and you make the best of it. She gives me hope that one day we might get further. We might get to show you those exhibitions after all, even if your arm is tucked in mine. I wouldn’t be standing here still if I didn’t accept your autism son. I’ve walked the embarrassment, the worry of what others think, the concerns for your safety, the feelings that this isn’t ‘normal’. Dad is walking around the museum worried about you. Concern and stress is eating at him. Because this isn’t how trips out ought to be. But it is what it is. And here we are. We accept you for who you are even when others don’t. Because God accepts you. Just like he accepts me.

A member of staff starts talking to me. She has been watching you and smiling. There to hand out maps of the museum and you are entertaining her. And she is embracing it. You stop as yet another stranger runs through the rain towards the door. Your laughter and excitement as the thing you predict happens once again. In all the noise of the crowds, through the splashing of the rain on the building, the chatter of hundreds of people, through the ding dong of announcements I heard her laugh with you. A little boy made her laugh. She embraced the wonder and love with you. Then she told me something amazing. ‘Did you know’ she said, ‘that these doors cost thousands of pounds? Many of these vehicles on display were donated, or found, at very little expense but these doors cost thousands.’ She paused. ‘It’s nice to see someone appreciate them. That’s all.’

You did more than appreciate them son. You embraced them.

You are priceless son. And we need to embrace that.

Some might ignore,some might challenge, some might accept, but the more people embrace you in life the better all our lives will be.

Maybe we should all try having fun with some automatic doors! And maybe we need to embrace those who are different more too. Because everyone who passed through those doors that day is special. And everyone is different. Wether we ignore it, challenge it, accept it or embrace it is up to us.

In the irony of the fact we never quite got to be part of a charity launch set to support you and others with nf1, you taught me more than any speaker could.
Thank you Isaac.

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3 thoughts on “Ignore, challenge, accept or embrace?

  1. . There are people who have money,power and influence. The trouble is they dont look as if they are enjoying life. If you watch Isaac you can see the joy that life gives him. It could be a light, a fence, a revolving door or a book. The simple things of life, “he reminds us”, are priceless.

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  2. In these situations a little kindness and understanding can go such a long way!
    Us N.T. are always in such a rush caught up with things. Oh to have the power to slow down and consider! Another lovely piece Miriam. x

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  3. I’m sitting here in tears, this is my son. I love how you have really captured the moment better than I could ever express. We love doors and I will never take that love away from him. It’s all about those simple pleasures ;0)

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