Why can’t they take away his tumours?

I try not to think too much about my child’s medical condition. His classic autism I can deal with (well most of the time anyway), even the fact that at six years and six months old he has no language is just about bearable. The fact he has global delay and has the understanding of a young toddler is hard, but something that might improve. But when I talk about the fact my child has this condition called neurofibromatosis type 1 my heart still breaks, even though we have been living with it for over two years now.

This is not easy to write about but if it helps just one person then I feel I have to talk about it.

This handsome boy, full of life and energy and mischief, has a body that keeps making tumours!

imageAnd there is absolutely nothing I can do about that!

You see I know about autism. I can sit with him and work on that. He might never speak but there has been huge investment in autism and so many resources available. I can use the internet to access photographs, or even take some on his iPad that he can have instant access to. Then there is picture exchange communication that one day he may be able to understand. There is also makaton and British sign language. He can take me by the hand to things he wants and we can help his socialisation skills by taking him to a wide variety of places and hopefully in time introducing basic social stories.

I know he will always have autism. But the likelihood is he will improve, even if not by a lot.

I know about his global developmental delay. We can work on his physical skills, one day eventually we may even be able to toilet train him, and in time he may be able to use cutlery, wash himself, dress himself and learn basic life skills. Children with global developmental delay, especially to the level of Isaac, may never catch up with their peers but he will improve, even if he always needs support.

But his neurofibromatosis type 1? Well that is just another thing altogether!

I am educated and willing to learn. I know about the physical features like his large head, his skins marks (cafe au lait marks because they look like coffee stains) and his small height. I know that some of his learning difficulties is also due to his NF1 and that genetically he inherited the gene from his father. I see glimpses of how his body may look as he ages by looking at my husband. We know he will most likely get freckles under his arm pits, his cafe au lait marks will increase and grow, and he will most likely have fibromas (small tumours on his skin). Those are all things we can cope with. And I am sure Isaac will cope with them too.

imageimage imageIt’s just the unknown. The fact that when you say to people he has tumours the first thing they say is ‘does he have cancer?’, followed by the inevitable, ‘why can’t they take them away?’. That’s the hard bit. No he doesn’t have cancer, for which we are incredibly thankful. But he also can’t be cured. And should he develop certain tumours on his spine, or eyes, for example, he may one day require chemotherapy. But unlike cancer, there will never be the option of no longer having tumours.

He will always have autism. He will most likely always have global delay (although that may change to learning difficulties as he ages) and he will always have neurofibromatosis type 1. But unlike the others his NF MAY be stable, mild and not require treatment or it may throw up hurdles we don’t want to even think about. Of course we hope and pray for the former and reassure ourselves this is how it has been for my husband.

Why can’t they take away his tumours? Sadly he would just produce more. And more. And more.

Do I want a cure for autism? Sometimes when I have tough days and my son is not able to be understood and is frustrated yes. When I spend longer watching lift doors with him than I do sleeping some weeks? Maybe. Would I like a cure for his global delay? Partly, but then he is slowly achieving things and I know in his own time he will get there. Would I like a cure for neurofibromatosis? Yes I would.

But then I look into these big brown eyes and I think I couldn’t possibly love this boy any more than I do. And I know whatever the future holds…well we’ll get through it…one lift at a time!
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My name is Isaac

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My name is Isaac.

Please don’t be scared of me. Please don’t laugh at me. Please don’t ignore me.

I don’t bite. (well I do sometimes but let’s not talk about that eh)

They annoyed me, ok. And I liked the feel of it. But I won’t bite you just for saying ‘Hi’. Well not today anyway!

I am happy today. So you’ll be fine. So say ‘Hi’ to me. I might not look at you but I know if you are smiling. That takes skill that does.

I know when people are scared of me. I know when they are laughing at me and ignoring me.

I look like I am in my own world, flapping, screaming, making noises, walking up and down in straight lines. These things are great fun. But I know you are there.

I’m not blind..well technically I am in one eye but you know what I mean! I can still tell if you like me. I’m autistic, not stupid.

I won’t swear at you or be cheeky to you…I am non verbal anyway.

I like attention. But not the attention most people give to me. Laugh with me, not at me please.

I like licking things. OK, I love things in my mouth. Anything. Food, cardboard, plastic, wood, a dummy. Licking tables, chairs, clothes, windows. I’m different. But you are different to me too. And I don’t laugh at you…well sometimes I do but I do it in the middle of the night when no-one knows what I am thinking about. I laugh good and hard then. Roll about the bed laughing. Your sameness is hilarious to me.

I love my sister. She is a right fussy eater but it’s great. I’ve trained her to leave as many leftovers for me as she can. I’ve worked out that dad likes a cup of coffee before clearing the dinner table. I’m doing him a service really by eating all that food before it goes in the bin. Saves me raking in the bin for it later anyway. It’s kind of like my way of washing the dishes. Mum never let’s me do it when we go out though. Wish I knew why.

My sister is funny. She puts toys on the floor and talks to them and stuff. I keep showing her that you lick them and scan them and chew them but she keeps lining them up and moving them about and cuddling them. She even gets these funny ones and puts them all together like to make some picture thing. Like 20 pieces of cardboard. What a waste of good chewing material that is. I ate a few. That soon stopped her. She’ll get them back soon enough. Did you know stuff comes back out you? Quite smart that!

You know what though I love winding her up. She loves this mad thing on TV. “Topsy and Tim” I think she callls it. Rants about it all day. TV is only good if it’s about food. Or something red like Elmo. Everything else is just mumbo jumbo. So I sit in my ball pool full of plastic food. And when I hear that theme tune I rummage and rummage and rummage. Oh that’s a great noise that. Drives her nuts. Makes me laugh. Mum tells her I don’t know any better. Oh I love that mum thing.

That mum thing. Well she is just the best. I raid the fridge, she opens the stuff for me. OK, so I have to look at her and look cute and all that and she says that thing that she keeps saying “Isaac, open”. That just means I get to have it. See you know what to do mum so why ask me? I give her a picture, she gives me the food. Hey, this woman is the bizz. She totally gets me. I have her sussed. I cry, she cuddles me. I pull my top off and scream long enough she gives me that fab red jumper thing I love. She makes that car thing go too. She turns that hard, cold food I eat out of that freezer thing into something even better. She cuddles me. Even when I’ve screamed at her. I’ve even bit her…just to see if she tasted as good as she seems. I’ll stick to licking her and pulling hair though. and pushing against her. She always says my name when I do things like that. That must mean she loves it the same as I do. She can even make that ipad thing work. How amazing is that!

She’s great to wind up too. My favourite game is watching her run down the street after me. She loves that. Well she picks me up and takes me back home so I think she wants me to do it again and again. I’m helping her exercise. I think she has had enough sometimes though so to help her out most days I just lie on the ground and scream instead of walking. I don’t get why people walk when those things with wheels can take you.

Those things are fabulous. But why do they stop? And why would they go backwards? That is just crazy. You get in, chew that belt thing, go where I want and just keep moving. Simple. I make it easy by telling you when you are not doing it right. Listen to me screaming. I’m telling you to keep moving and go the other way. You know the way that guy does in that blue car thing I go in. The one I go in with my bag and red jumper on?They take me to the right place every time. I have them trained. I’m still working on dad. He’ll learn one day.

You know I want to go to that place. With Sonia and Tricia. Where they feed me, let me go outside, take me swimming, give me an ipad to lick and play with, let me climb on thier soft play. That’s a great place that. The red jumper place. I chew my red jumper thingy so they know it’s mine. It’s so comfy and nice and warm and…tasty really. They make good dinners there. And I know what is happening. I am happy there. I don’t bite there. They talk to me there. They accept me.

I wish you would talk to me. Touch me. Play with me. Blow me some bubbles. Chase me down the street. Flap with me, make that ipad thingy go for me. Give me food. Put that red jumper thing on me all the time. Help me take these shoe things off. They irritate me. Why do you all wear them anyway? Let me turn your taps on, splash with me. laugh with me.

Smile at me. Say my name. Don’t be scared.

I’m only Isaac.

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Special mummy to a special child

isaac pjs
I’m a special mummy to a special child
Many a day he drives me wild
The endless screaming, the lack of sleep
The strangest things he has to keep
God grant me patience for this beautiful child

I’m a special mummy to a special child
So many forms that need to get filed
The constant meetings, the daily calls
Recording his biting, his seizures, his falls
God grant me strength for this beautiful child

I’m a special mummy to a special child
I will never forget the day he first smiled
The day he said ‘mum’ and looked in my eyes
The day he first walked was a lovely surprise
God grant me joy for this beautiful child

I’m a special mummy to a special child
Other folks looks can get me riled
When he’s spinning and flapping and licking the floor
When he’s finished his meal but still screaming for more
God grant me grace for this beautiful child

I’m a special mummy to a special child
Hence my grass has grown long and my washing has piled
I’d rather spend time with my wonderful boy
While we run in the garden and he shows me his toy
God thank you for giving me this beautiful child.

The preparation begins…

I think I blinked and missed some years somewhere! Because today I took the children to visit Isaac’s new school for the first time. School? Surely not! It hardly seems like anytime at all that I was breast feeding this boy, putting him down to sleep in a Moses basket, cradling him in my arms and promising him mummy would always be there for him. 

It didn’t feel like it at the time but looking back I can see that even those tender moments holding my newborn baby in my arms were times of preparation. Filling him full of nutrition, strength, adoration and a firm knowledge that he was loved, wanted and special. Those were precious times. Times when he was perfect and secure in my arms and I was there to protect him and hold him close and be there whenever he wanted. Times of preparing him for an uncertain future. Time of preparing him for a world way bigger than he could ever imagine. Times of preparing his heart with a tight bond of love that whatever he had to go through in life he would never forget that mum adored him and treasured him dearly. 

We have always been close. I pray we always will be.

4 and a half years have passed. Life hasn’t been easy for this precious baby of mine but we have faced it all together. He has faced house moves, hospital appointments, changes to nurseries, two EEG’s, lots of infections and illnesses and so many people working with him. We went through his diagnosis together. We go to every hospital appointment together. It is my hand he takes when he wants something. It was my hair he ruffles when he needs to calm down. It is ‘mum’ he cries when it all gets too much for him. It it mum he wants first thing every morning and last thing every night. Only mum can give him his warm milk bottle. Mum knows what he wants when noone else does.

But now all of a sudden mum can not be there any more.

All of a sudden we have school on the horizon.

And mum can not even walk him to school. Or pick him up when school is over. Or even be there on his first day. Mum won’t be there at lunchtime. Won’t be able to change his nappy during the day or hold him when he gets tired. Mum can only think about him, pray for him and wonder how he is doing over 10 miles away at home. 

The school that Isaac is starting in August is just perfect for him. God could not have prepared a better school for him in any way. It has a hydrotherapy pool, a soft play room, light room, and multi-sensory room. The classes are very small and the staff ratio is very high. There are onsite specialists to help and support him. It is an answer to prayer. 

But Isaac must do this journey alone. He will have to get used to being transported by taxi by strangers. He will have to get used to a much longer school day and having a meal without his twin sister and parents there. He will have to adapt to so many changes. His entire world and all that he knows will be changing so much. He will once again have to get used to not having his twin sister around. Or mum or dad. 

And we will all need to get used to not having Isaac around too.

So the preparation begins for us all. More visits to the school, buying uniform, lots of talking and reading books to Naomi, lots of tears for mum and lots of special hugs for Isaac.

How did he ever get from that baby in a Moses basket to this handsome energetic 4 year old? I must have blinked and missed it!