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Happy and Healthy Baby

Happy and Healthy Baby

In fact a common response when you ask a pregnant person whether they would like a girl or a boy is; ‘As long as the baby is happy and healthy then I don’t mind’.

So what happens when your baby is born with a disability?

When we found out that our baby had a disability and wasn’t going to have the life we originally mapped out for her, I crumbled.

On the outside I was strong, I would tell people she was special, that as long as she was smiling, I am smiling. Then I would scream and cry when I got behind closed doors.

It has taken a year for me to realise that yes, I would have preferred my daughter to have a life that isn’t full of appointments and uncertainty of her future. Yet I wouldn’t change my daughter at all.

My daughter is full of determination, she is full of smiles and she loves cuddles.

My daughter sees what other children are doing and she finds a way of doing it, just in a different, outside the box way.

My daughter does get tired a lot quicker than most children, however, when she is awake she is making the most of every minute she can move, she is not lazy.

My daughter can play with her siblings even if it is slightly different to the way I had imagined.

My daughter is still loved by her family and friends.

My daughter is still loved just the same whether she has a disability or not.

I would still fight for my daughter until my last breath, which I would do for all my other children.

My daughter is still my daughter, whether she has a disability or not.

I never envisaged my family to be how it is. I wouldn’t change it for the world.

Each of my children teaches me new things about myself every day. My baby is teaching me how strong I am, she is teaching me determination, and she is teaching me patience.

My daughter still doesn’t have her diagnosis, however her symptoms aren’t good and are pointing to a life limiting condition.

This is the only thing I wish I could change about her.

She is so happy and while she is smiling and fighting, that is exactly what I will be doing.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Rebecca Shayler-Adams

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We are just a typical family muddling along our day to day lives. 4 kids, 1 with autism, 1 with an unknown neuromuscular condition

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