When your future is different.

From the moment you know you are expecting a baby, you start dreaming and planning the future.

You imagine your baby.
Holding your baby.
Loving your baby.

Beautiful and brilliant.
A happy baby.
So much to look forward to.

First words.
First steps.
Running to you,
Throwing their arms around you,
Smothering you with kisses.

So much magic to look forward to!

You will watch as they learn to swim
Will they like karate or chess?
Baking or football?
It doesn’t matter, as long as they are happy.

You look forward to teaching them to ride a bike.
Giving them piggy-back rides.
Seeing Disney World through their eyes.
So many wonderful family days out.

Days at the beach,
Paddling in the sea,
Catching a Frisbee,
Racing along the sand.
Laughing.

Life will be beautiful and filled with fun.

They will grow up.
Learn to drive.
Go to university.
Have a job.
Meet their dream partner.
And bring you the joy of a grandchild.

Life is only just beginning,
beautiful and filled with fun.

Nobody goes to the 20 week scan, “the foetal anomaly scan”, actually expecting there to be anything other than a happy moment of seeing their baby on the screen, getting some photos and maybe finding out if they are expecting a boy or a girl.

I was that mum.

Hearing the words “there appears to be something wrong with your baby” stops the world for you. Yet it keeps on turning for everyone else. You are still in everyone else’s world but they are not in yours.

Everything has changed.

But my child was a boy and every bit as precious as before that news.

And he still is.

I held him.
And he breathed!
And I celebrated.

He didn’t smile easily.
But when he did, my heart swelled.

His first word took a long time.
But it meant so much.

I waited longer for “mum” but it was so precious when it came.

His first steps came with a lot of work, years of therapy, and the aid of a large frame supporting his body.

An injury at school sadly took that ability away.

He might never run to me, but I will always run to him.
He took a long time to kiss me, but I could still kiss him.

Eleven years on and it still isn’t easy.
Every day experiences are often beyond our reach.
But we do our best to create a way to do things.
And we will keep doing so.

I will not lie.
It isn’t easy.

Some days are truly difficult.
Some moments hurt beyond words.
Some words hurt beyond moments.
Very occasionally, it feels like you just can’t go on.
But you get through.
Because love is bigger than all the fear in the world.

There are daily struggles.
Some major lows.
Days where fear engulfs you.
Parenting is like that!

There will be tougher days though.
With ongoing battles for inclusion and acceptance.
Battles that you should not have.
And it will feel lonely at times.

But you will find your way.
You will find strength you never expected.
You will find others to help you through.
And you will find joy.
Often in places and ways that you would have missed before.

Life is only just beginning.
And it can still be beautiful and filled with fun.

Heart

 

 

Boy sat in a funky wheelchair, on a carriage, drawn by a pony. They are racing on the beach with the waves around them.


 

My son is a full time wheelchair use and he has a number of health difficulties. He has excelled beyond the expectations of any professional involved in the early years of his life.

I have grown from that fearful mother at the 20 week scan to one who shows her son that he can bring change, that he can improve things and that he does not have to accept less than an able-bodied person.

And I have discovered that none of my hopes and dreams before that 20 week scan matter, because this is my son’s life and future and all that really matters is that he is happy.


If you have discovered that your baby has disabilities or health problems, finding others who have been there ahead of you can be a great comfort.

In the early days, I found a forum online called Special Kids in the UK and it became a real lifeline to me.

Facebook has a huge number of pages and support groups for people affected by a variety of conditions. If you have a condition name, you can easily find others who have travelled a similar path.

For many though, there may never be a diagnosis, or a named condition. SWAN UK can be a great source of help to those families.

Connecting with others can make such a difference, and, if your future has suddenly changed, feel free to reach out and find a new friend in me.

Heart

28 thoughts on “When your future is different.

  1. I love this post , for me it was a 6 weeks old but I totally understand these words and 11 years on we got a diagnosis but I will always feel I belong in swan xxx

    Liked by 1 person

    1. We received a sort of diagnosis after 11 years too. A gene was identified but we are no further forward with knowing anything.

      I still remember that feeling of being lost and scared though and I wish someone had told me then that it would all be okay.

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      1. yea we got our diagnosis on 3rd of Jan this year they found the gene change on the mTOR gene and the condition is smith-kingmore syndrome, one of 28 apperntly most in America 1 in Japan 1 in Belgium but the family in Belgium said they were told there is a 70 year women , Archie is eldest in facebook group though so not much to go on. xxxxx

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  2. That must have been really difficult, we had no indications at any scans. Flossie just missed her developmental milestones, it was a dawning realisation that life was going to be very different to that which we had anticipated. Some very dark days at the beginning of that process, but I wouldn’t change my daughter for the world. (I do continue to try and change the world for my daughter though…)

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    1. Even after that scan it was a constant trickle of more information. There is always a lot to take in after every appointment too, isn’t there? And, every time I think I am doing okay, something will pull the rug from under me again.x

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    1. It is a complicated and emotional experience. Some days I wear my #YouGotThis shirt because I need to remind myself that I can do it.

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  3. I clearly remember crying over the fact that Harry wouldn’t get to join cubs or play an instrument. Such minor things but it seemed he was going to be robbed of everything, I was going to be robbed of doing those things with him. Thankfully things turned out better than they anticipated – he never joined cubs and doesn’t want to play an instrument either 😂 It is a grieving process, you deal with one bit of information and then something new comes along. I love how you still find time to support everyone around you when no one could blame you for being selfish but it’s just not in you. Thanks for sharing this x

    Liked by 1 person

    1. Thank you.

      It really is overwhelming in the early days. And it does keep on coming. Glad to have good friends to share it with though.x

      Like

  4. I’m in tears as I write this, I was that Mum too during my first pregnancy. You just don’t expect to hear that there’s something wrong, our outcome was different, our baby only lived for 70 minutes.
    I am so pleased to read that you are so positive x #BlogCrush

    Soffy // themumaffairs.blogspot.com

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    1. And I am in tears as I read your words. No matter how difficult things are at times, I always hold on to how lucky we are to have our amazing son. He was not expected to be here beyond his second birthday so we know how fortunate we are.

      Much love.x

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  5. “You are still in everyone else’s world but they are not in yours”… that struck a chord with me. What a good way to describe that feeling. You are strong mama, I’m in awe ❤ #BlogCrush

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  6. Great post, if somewhat difficult to read, being reminded about all those thougts and hopes from before diagnosis. I love my child above everything in the world, and we have other hopes and dreams now, but it can still sting a little bit, when thinking about some of the things that we thought that the future might hold.
    Some very good points about finding support and connections online, that has been an absolute lifesaver for me! x #BlogCrush

    Liked by 1 person

    1. Thank you. That day at the beach was one of the best days ever, just being able to watch my son having fun instead of being the person working hard to make things happen.

      Like

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