Let them play

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Let them play!

My heart is happy. My son is sitting on the living room floor with a large canvas bag and a pile of teddies. He fills the bag full of teddies, takes them out one by one and then refills the bag once again. It may seem very different to what other seven year old boys do but he is playing.

So I let him play.

Sometimes I get right down on that floor beside him and name those teddies. ‘This is Elmo’ and ‘This one is a panda’ and so on. I almost feel pressured to turn his play into a learning experience or a speech and language therapy session. When your child has significant disabilities and delays the pressure to use anything to ‘bring them on’ is overwhelming. But sometimes they just need to be children. Sometimes we need to allow them to explore and learn and enjoy being in their own world.

So let them play.

When the weather is more favourable we like to go to parks. Sometimes we walk about, or have a swing or venture down a little slide. I have to be so careful that any places are fully enclosed and have equipment that can take the weight of an older child still using frames build for younger, much lighter, children. But mostly our biggest problems is the general public who see my child licking the equipment, or flapping or running around in circles and they mock. And while he knows no different, I do. So he loves the baby swings, so what? He takes a whole lot longer than other just to climb up a few steps and manoeuvre his body down a slide. So what? He is enjoying the park, the fresh air, and learning from others.

He is playing.

I can’t let him be in the garden alone. He can’t join a football team or a drama club. He can barely balance enough to run never mind ice skate or dance. But boy does he love a good tickle! Or some rough and tumble play on the bed. He loves nursery rhymes with actions even if he can’t do any of them himself yet. He loves stories and videos and Peppa Pig. He loves sensory activities like lights and repeating sounds. He likes buttons to press, tummies to squeeze, toys that pour out and anything with water. His toy collection is all things for under three year olds. I am totally fine with that because they make him happy.

And they enable him to play.

We haven’t reached the imaginative play stage yet. Or the social play. He can’t read or write or even speak. He can’t kick a ball or throw and catch. Cars are just something he puts in his mouth to chew on. But fill a ball pull full of toy plastic food and he will sit there for ages exploring, looking and rummaging. He loves his iPad. He loves a DVD player. But most of all he loves his mummy.

So before he gets bored of those teddies I am off to play with him. It is one of the most important and most beautiful things a child can do.

However they do it…let them play!

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For the love of my child

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I will endure months of feeling sick and exhausted, and craving food combinations that are totally crazy just knowing it is because you are inside me.
I will face needles and tests and personal questions by strangers because you are changing my body in ways it has never been changed before.
I will research car seats and prams and clean areas of my house that haven’t seen a duster in years because I want to protect you.
I will endure pain on a level I never thought existed before for many hours on end just in order to give you life.
And when I first hold you all this will forever disappear from my memory because you are worth it.
For the love of my child.

I will repeatedly feed you, wind you, change you, and comfort you in a never ending cycle day and night because you need it.
I will exchange current pop music for lullabies, fashion heels for slippers and home cooked meals for a cold cup of coffee because I just want to be with you.
I will spend all night holding you while googling ‘help for colic’ or ‘cures for the teething baby’ because I only want the best for you.
I will cry when you say ‘mamma’ and video you when you take your first steps because I never knew what pride was until you came into my life.
For the love of my child

I will watch you with wonder, photograph you in the hope of remembering every last detail of your day, because I want to remember you.
I will measure medicine to the exact fraction of a millilitre, and cut grapes into tiny pieces to prevent you choking because you make me scared sometimes.
I will play make-believe games with you and talk to you like you are the most amazing person in the world because every moment with you is precious.
I will plan birthday surprises, take you to parks and splash in water at the pool with you because you make me smile everyday.
For the love of my child.

I will bubble on your first day of school and cheer you on at sports days because you are everything to me.
I will encourage you to do homework even when it is challenging for both of us because I want to teach you.
I will push you to go that bike or practice that dance recital because I believe in you.
I will nag you to brush teeth, wash your hair and be the best you can possibly be, because you are beautiful to me.
For the love of my child.

I will sometimes seem like your biggest enemy whilst always remaining your greatest ally, because we are too alike.
I will listen to your worries and hear the latest ins and outs of all your daily issues because I care deeply.
I will watch as you change from a toddler to a child to a teenager while it seemed like I was dozing because time passes far too quickly.
I will drive you places I would never go myself and buy you clothes that I have no idea what part of you they will cover because I respect your choices.
For the love of my child.

I will be overcome with emotion and pride at everything you achieve even if it seems trivial to you because my heart belongs to you.
I would spent my last penny on a new car for you or to see you through university because no sacrifice is too great for you.
I cover my walls in your photographs because my memory needs reminded so often of everything about you.
And even if I die I want the world to know that I lived my life and did it all
For the love of my child.

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Bringing healing to my heart

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I must be one of the few parents who delight in hearing my daughter being cheeky. That does not mean I will not be teaching her and training her in how to behave but there is something about her giving smart remarks, exerting her own will and asking for treats that actually brings healing to my heart.

Oh how I would so love to hear her brother shout back at me in frustration because I have corrected him for something he didn’t like or respond to some remark I say by giving a remark back of his own that showed understanding, quick thinking and advanced cognitive processing. Oh how I wish he was able to exhort his will verbally by saying ‘no, I don’t want to go there mummy I want to do this instead.’ I would actually cry if he said something similar to my daughter who told her daddy today “I am fed up with you being grumpy.”

I didn’t tell my daughter how amazing that comment was. In actual fact she was corrected for speaking to her dad like that but inside she was bringing healing to my heart.

This is how it is supposed to be.

You are supposed to hear your young child say things that seem cheeky or naughty. As part of their development it is normal for them to hear worlds others say and repeat them at times they are not supposed to. Children make grammatical mistakes and even make up words of their own. You expect them to get frustrated at times and even shout at you. They learn to whisper, scream, tell jokes, share stories and experiences and express emotion all hopefully within the guidance of a loving and secure home. And they are going to challenge, delight, make us proud and give us plenty of things to smile about. We get to read to them, share our lives with them and build them up. We get to interact and communicate with them and hear what they like, who their friends are and what their day has been like. And because we teach them to communicate we can eventually allow them freedom knowing they have an ability to share any problems or concerns with us as they grow and mature.

Except my 5 year old son still can’t even say ‘mamma’. He can point to a food he wants or scream if he doesn’t want something. He can hold my hand and take me to something if he knows where it it and I can make a guess at what he wants. But he won’t let me read to him, he can’t communicate in any way how he is feeling or if he is in pain, he can’t tell me what he has done that day if he has been away from me, he can’t shout at me in frustration or anger or tell me he loves me. He hasn’t got the ability to make up stories to tell me about his favourite characters, or be able to ask for some programme on the TV he wants. He can’t even ask for sauce on his dinner if he does not know where it is. And because of his severe communication difficulties and learning difficulties he has very limited freedom.

So yes, I would love him to be cheeky to me one day. In actual fact if he told me he hated me it would bring healing to my heart. It would show he could speak, could understand basic emotion and it would be a three word sentence said in context. It would be music to my ears!

His sister has no idea how much I need to help her build train tracks, and talk to her about her beloved Thomas trains. How I delight in hearing her made up stories based on episodes of Thomas the tank engine she has read or watched. How I could spend all day with her in the garden pretending it is a cafe and she is serving me food. The simple delights of interaction and imaginative play bring healing to my heart. How my heart jumps for joy when she asks for a shed for her engines because she has seen one in a shop, and how I still smile inside when she gets stroppy that I said it was too expensive. Because that strop means she understood my language, her asking showed she can form full sentences and request in a way everyone understands and her approaching me showed she knows that communication has a purpose and can get her what she wants. And the healing continues in my heart when I say we can make a shed instead. She trusts me, she is connected to me and she is willing to wait and watch while I stick some boxes together to make her a shed.

Oh how I wish her brother could ask for a toy, understand the concept of cost and the fact it was too expensive, express his upset at this, and be willing to accept a compromise based solely on my use of language. Oh how I wish he would even play with toys in a meaningful way rather than chewing them.

As we pass the halfway mark of our summer holidays we are looking at uniform purchase for Naomi. There was no uniform to buy in the shops last year for her brother. It was jumpers and t-shirts from a school supplier and simple jogging bottoms. We never had the tie, or shirt, or school trousers. And the buying uniform is healing that place in my heart that longed for this experience. This is how it should be.

I will get to walk my daughter to school soon. It will be emotional in so many ways. But it will help that healing. I never had that with her brother as he has to go on transport 13 miles each way to a school for children with complex needs. To walk my daughter to school, talk to her coming home about her day, find out the name of her friends, hear what picture she has on her peg; those simple acts parents take for granted. Those are special. I get to have that photo of her first day going into school.

Everyday I realise how much I have missed with my son. I treasure the moments he wants to sit near me, or smiles at me, or hands me his iPad to change the google images for him. I love every moment he takes me hand and leads me. Those moments bring me healing too.

But seeing my daughter just being a child, hearing her voice singing and chatting and asking me endless questions, hearing her tell me she loves me.
There was a place in my heart that was empty. I never knew how hurt and broken that place was. But my sweet little daughter is soothing that pain and reaching into areas that needing that healing balm of oil. She needs me. I need her. And I need her brother too.

One day he might say ‘mummy’ again. One day he might kiss me or tell me he loves me. One day I might even correct him for giving me cheek. One day I might be able to make him a toy he wants and see his face light up as we play together with it.

And those moments will keep bringing healing to my heart too.

Never take a child for granted. Cherish every moment.

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