Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism

Limping

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Afraid. What does the future hold? Will my children be safe?

These are questions I’ve noticed many parents are asking on social media lately. So much to be afraid of.  Acts of terror creep ever closer to home. Paris. Long awaited trips to Disneyland being viewed rather more anxiously. Life just got a whole lot more scary.

Fears.

And yet for the parent of a child with additional needs these fears are already known only too well. They have loomed large since the day they were given a diagnosis.

Afraid. What does the future hold? Will my child be safe?

Like me, they stare over their sleeping child and ponder these things. Watching them breathing deeply and securely in their cot or bed. Smiling at the way they are lying or the way they are clutching onto a favourite blanket or teddy. Thoughts so quickly turn to the future.

Who will take care of her when I am gone?

Will anyone love her – really love her as I do, when I’m gone?

Will she be bullied because she is different? Because she has Down’s syndrome?

Will she be exploited? Taken advantage of?

Who will speak kindly to her when she is anxious or sad?

Who will hold her hand or give her a hug?

It’s not uncommon for many parents of children with disabilities to even wish that they outlive their child. They cannot see a future for their child without them being there to care for them.

It’s these fears that threaten to overwhelm me. Blink fast, swallow hard fears.

But they only ever threaten me.

I’m a Christian. Completely not cool.

According to the media and especially social media, I am someone to be mocked. Often laughed at, ridiculed, criticised and increasingly silenced.

I can live with that.

I can live with that because my faith is the only thing that can calm these overwhelming fears. The media can’t. Facebook can’t, neither can Twitter. Other people can’t, though of course I take huge comfort and encouragement in the words and experiences of others on a similar journey, whether or not they share my faith. I am thankful for them and value them enormously.

But, if having faith is a crutch to lean on then I am happy to keep limping. However uncool it may be.

The Bible has two particular things to say about Hazel ‘s life. They are my crutches. Whenever those fears threaten to overwhelm me once more I bring them to mind and lean heavily on them.

Firstly that God uses the weak things of this world to shame the strong.

Hazel is weak, undoubtedly.

Down’s syndrome is often seen as weakness. A flaw. Something undesirable. Something to be got rid of. Unwanted.

Not to God. And not to me. I have already seen how Hazel’s ‘weak’ life compares to the selfish, self centred lives of many ‘stronger’ or ‘wiser’ people. She has already brought more joy into our lives in four short years than some people will bring in a lifetime. She shames many. Each and every day.

Secondly, that God has plans for her life. Plans to prosper her and not to harm her.

Hazel’s life is no accident. She was planned. She has purpose. She has a future.

This doesn’t mean there won’t be problems, or challenges. This doesn’t mean she won’t face discrimination or even hate. But it does mean that her life will matter. Her life will make a difference. Her life will be cherished and she will be loved. I believe what God says. I have to. The alternative is too overwhelming for me.

I will keep limping.

Holding tightly onto my faith.

Stamping out those fears as I go.

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Author: DownrightJoy

Married. Mum of 2 girls, one of whom has Down's Syndrome & Autism, the other Dyspraxia/ASD. Follower of Jesus. Finding joy in unexpected places.

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