A Letter to My Son, Who Lives in the Shadow of Cerebral Palsy

You are a wonderful brother to Bella, even when you are being cheeky and winding her up.

You treat her exactly the same as you treat everyone else.

To you, she is no different.

I remember bringing Bella home when you were 4 years old. You suddenly looked enormous.

I remember you cuddling Bella on the bed and her throwing up all over your clothes just before you were going to a party and although you cried, you were laughing within minutes.

I vaguely remember sitting you down and explaining to you that Bella might never walk, you asked why it had happened and we couldn’t tell you.

We will never know.

You taught her how to have tea parties, you tell her off when she is bad and sometimes you get this look in your eye and I know you have found the perfect opportunity to wind her up.

I know I tell you off, but I also feel relieved that you treat her exactly how my own brothers treated me.

I know that you will always keep an eye on your sister and you are fiercely protective of her – you hate when people stare, I almost had to drag you away from a little girl in the shops only weeks ago because you wanted to tell her off for staring too long.

You love to push her in her wheelchair; you make it a fun game.

You are very helpful.

You’ve never once complained that she can’t run around with you.

I feel very guilty that I expect so much of you sometimes. I forget you are only 9.

I know you feel angry with me in the mornings when you have to get ready by yourself and I only have time to get Bella ready.

I know I seem to be constantly helping her do something and then when she has gone to bed I am so tired I am not much company.

I feel guilty that we stopped spending so much time at the park, or taking long walks, and definitely no soft play because I didn’t want Bella to feel left out, I hope you don’t feel like you have missed out.

I know sometimes you like to try and say mean things and be hurtful but it is only because you feel frustrated or left out.

I sometimes forget that Bella’s Cerebral Palsy affects you as much as it affects everyone else if not more because feeling left out is one of the worst feelings in the world.

I’m so very proud of all the effort you put into your clubs and school.

You always try your best and you have so much confidence, I have no idea where is comes from but never lose it!

You are a wonderful person. I’m sorry if I say your wonderful drawing is nice but then go over the top if Bella draws a squiggle.

I know it’s not fair.

I am trying my best. I know sometimes it doesn’t seem like it but I will get better.

Bella will gain more independence, she will go to clubs of her own and we can spend more time together just you and I.

I miss you and please know that just because I spend more time with Bella doesn’t mean I love her any more – I love you both the same.

Love Mum x

How One Letter went Viral and Changed Shopping Forever

I was just one frustrated mama trying push my daughter’s wheelchair with one hand and a massive shopping trolley with the other.

May has severe disabilities, both cognitive and physical—but she always loved our weekly food shop.

I don’t know if it was the colours, sounds or smells but it seemed to engage her.

Up until about a year ago that is, and then it all went wrong.

The problem was the shopping trolley.

Up until that point, she fit into one of those shopping trolleys with the baby cradle seats.

Yes, her legs hung off it, but, she was very small for her age and the harness straps still secured her.

The vibrations of the trolley calmed her and, after we shopped, we’d wheel her around the bumpy car park encouraged by her squeals and giggles.

And, then she was too big to fit in those seats.

Shopping was no longer a joy but a real chore.

May hated it.

It won’t surprise you to learn that we still needed to eat.

We ordered more and more of our food shops online.

However, nothing compares to actually picking out the food yourself.

Plus, we didn’t want to be cut from this part of our lives, a normal activity that is shared by all families.

Disability can be very isolating — did I want our family to be even more cut off from everyday life?

So, I wrote to our local supermarket and asked if they’d consider purchasing a disabled trolley for May.

After all, the end result would be us spending more money with them and the cost of the trolley was less than our weekly shop.

They refused.

And, that was the start of the campaign.

Their response seemed completely counter-intuitive to me so, using what limited resources I had—my blog and my Facebook friends— I wrote a post that went viral.

I don’t have any great campaigning skills honed over time.

I don’t have influence in high places.

I don’t know the first thing about getting the word out.

I just spelled out how insane it seemed to me that a supermarket didn’t want me to spend money in their shop and people agreed.

You don’t have to be the parent of a disabled child to be angered by the corporate and public institutions that have such an influence over children’s lives.

But, when it is pointed out that a family cannot do something as simple as their weekly food shop, that seems like insanity.

Or, as in the Space to Change campaign, when it is pointed out that disabled children have to be laid down on the floors of toilets to be changed when they are out and about – everyone feels repulsed.

Families who don’t have disabled children may not realise how dire these situations are, but when they are made aware, they stand in solidarity with us.

These are the kind of things we can change.

And, I’m proud to be part of Firefly to raise these issues together.

I only had my blog and a handful of Facebook friends, but here we can come together and make a difference on a larger scale.

I won’t have to ask, as I did:

“Okay, so you will try to find something for May, but what of the other 800,000 families across Britain who have a child with disability?

What about them?”

Because here, those families will be represented.

Together we are stronger and our campaigns will be stronger.

You can find Stacie at the Mama Lewis Facebook page.

“No, Actually, Having a Disabled Child Did Not Ruin My Life. Here’s Why.”

There was a lot of devastation, hurt, blame, denial and grief that followed this time. But now when I think about this, I think; why?

Why would having a disabled child ruin my life?

Oscar was born prematurely and was very poorly when he was born. We did not know if he would survive. If anything had have happened to him, that would have ruined my life.

I will admit that I did not want this for Oscar, no parent wants their child to be ill or disabled, but, Oscar has only made our life better. He is so beautiful and special.

There is not a day goes by where I am not thankful for my son as I know that some people who have been in similar situations are not as lucky as me.

Some people do not get to take their babies home.

I cannot think of anything worse than this.

Oscar is my absolute pride and joy, the love of my life. Despite everything he is such a happy and loving little boy. Although, at times things can be challenging, we just have to get on with it. Nobody said life would be easy. And, even when times are difficult, a smile from Oscar makes everything worthwhile. Oscar’s smiles can melt even the hardest of hearts.

For me, I would not change Oscar for the world, as he would not be Oscar. To me he is perfect, even if the world sees differently.

But, would I change things for Oscar? In a heartbeat.

At the end of the day it is Oscar who is disabled, not me.

If I was not prepared to do everything I can for my son including looking after him for the rest of my life, then as far as I am concerned I should never have been a mum.

So, no, having a disabled child has not ruined my life.

I am honoured to be Oscar’s mum and I couldn’t be more proud to say that Oscar is my son.


The News that Jade has Cerebral Palsy Changed Everything

We had to change the way we held her, talk to her, feed her and even put her to sleep.

A lot of information for mom and dad to take in.

But we had to deal with it. Each in our own way.

I started making plans for all the “what if’s”. Not sure what my husband was thinking, we were not really talking about it.

Our relationship took really bad strain because of it. But we had to deal with it in our own way. I think I cried for a day and that was it.

I’m a really strong person so I could deal with it, for myself and my husband, until he could come to terms with it by himself.

At least we didn’t blame each other.

But we blamed ourselves for a long time. Think sometimes we still do.

We have a very good support system. That is the key.

My mom is really a diamond. She is always there to listen and to help where she can.

My aunts and I are really close. They are always there if I need to talk to someone.

Jade’s godmother is really good to her. She spoils the kid rotten. But so it should be.

I remember the day we got the news. Everyone sent messages to say they are really sorry about what has happened but don’t worry, we are all here for you.

Jade’s godmother said to me “now she is even more special to all of us because she is different”. They knew not to call or come by as we had to deal with it first.

But they are there in a heartbeat if I call.

No matter where they are.

If you don’t have close family to lean on then take to the internet.

There are really good support groups all over the world.

They don’t judge you if you have an off day or an off month.

It’s amazing how people are there for you even if they don’t know you, but they know what you are dealing with.

It has been a bumpy road up till now.

It’s been nearly a year since we found out.

I want to say it gets easier but maybe it’s better to say it gets easier to deal with.

My Daughter’s Needs Might Mean She Never Sleeps a Full Night

She would wake up six times a night. I had to get up as her father could not handle her.

She would scream our ears off. I felt so helpless.

I could not do anything for her and I could not get any sleep.

Most days I was on zombie mode.

I really lived on Red Bull for over a year. I sometimes still do.

Every time she would wake up I had to run to her room. If I was not fast enough she would throw up all over everything.

If I was, she would just throw up on the floor.

I became a master of aiming in the right direction. Funny enough it would mostly happen at night.

During the day she would only sleep in my arms for not more then 1 – 1 ½ hours.

The first time she slept through the night she was about 18 month old.

I woke up at 7 and nearly had a heart attack. I had to go check if she was breathing.

She had a movement monitor under her but I thought it might have malfunctioned. But everything was fine and she was breathing.

It does not happen often that she sleeps through the night but when it does mom is happy and so is baby.

Everyone asked in the beginning “is she sleeping through the night?’’

My reply would be “what is that? I don’t know what you mean?” People stopped asking after about 20 months. Because my answer would never change.

The pediatric neurologist said we can give her Melatonin. We tried it and after 3 months it started working.

But then they took it off the market in South Africa.

We were then back to square one.

I don’t think she will ever be a good sleeper.

So I just have to make peace with no sleep and I think my body has gotten used to it by now.

Cerebral Palsy Doesn’t Care What you can Afford For Your Child

Our physiotherapist does a lot of work shops with the CP kids in the rural areas.

They come from far to see her.

She gives them advice to help them at home.

They see a physiotherapist once a month and never the same one. This is what the government give them for free.

They can’t even feed their kids in the proper way.

They carry them on their backs like small children but they are over the age of 10.

There are so many things on the market these days and you don’t know what do get where. What is good for your child and what is not?

Our physiotherapist is my go-to lady.

She always knows where to go and what to do.

Even on the emotional level. She has been through this with so many other parents she is a pro by now.

We bought Jade an Upsee and that is the best investment we have made.

She loves it and it has really helped with her head control and putting weight on her legs.

We still have to get the GoTo seat for her but at the moment we can manage without it.

If you have a pram for your child a simple sponge cut to the right size can hold your child up in the right position.

Or an eating chair can also be converted. Instead of paying a lot of money for something that can be made.

Even the bath rings can be converted.

My husband is very handy when it comes to things like that.

I found the highest back bath ring and then my husband took her Bumbo (which she never used) and cut it in half to use for a better back rest. It works like a bomb.

I went to get an anti-slip matt and there is a converted bath seat for a CP that can’t keep herself up.