Additional Needs

Special Needs Parenting: Knowing When To Let Go!

Posted by One of the Wonders on 8th February 2016 Additional Needs, Advice & Support, Disabilities

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From the moment she arrived, she was happiest when she was snuggled up against me.

She would happily spend her day strapped to my chest in a baby carrier, her head resting on my chest.

As she has grown older and bigger, I’ve had to give up the carrier, but Miss Z still loves her cuddles.

On weekends, I bring her into bed with me in the morning and we snuggle and doze under the covers.

 It is clear that Miss Z feels safest and happiest when she has physical contact with the people around her.

This is just one of the many reasons I find it hard to let go when it comes to her.

So, when my husband suggested that I take our older daughter, Vegemite, to visit my family in the US after Christmas, I was keen – but reluctant to leave Miss Z.

At first, I toyed with the idea of taking Miss Z with us. I knew it was unrealistic – she is simply not healthy enough to cope with a long haul flight.

Not to mention that no travel insurance company would ever consider covering her, which would leave us for a month in the US with a medically fragile child with no health insurance.

Not a good idea.

And that’s before we even start considering how Miss Z feels about new and unfamiliar places or cold weather.

It just wasn’t going to work.

So, I reconciled myself to making the trip without her. But I still couldn’t bring myself to book the flights.

The past year has not been kind to Miss Z – she has been unwell almost constantly with various chest infections.

It has meant that we’ve had to come to terms with the fact that she has a life limiting condition.

And it means that I have realized how quickly her health can go downhill.

My greatest fear was that she would become gravely unwell while I was away – and I wouldn’t be able to get back home in time to be with her.

I think it was this fear, more than anything else, which made me drag my feet on booking the flights.

After all, I’ve been away from Miss Z before – both for work and pleasure – and survived, but this felt different.

Everyone kept telling me how it would be good for me to get away, to have a real break, get some rest, some respite from the constant demands of caring for Miss Z.

I knew they were right, but it was hard to let go.

There was also a little bit of fear that Miss Z would cope too well with my absence. What if she didn’t miss me? What if she was just as happy to get cuddles from anyone else?

What if all the work I do every day to make sure she is happy and healthy isn’t really all that necessary after all?

In the end, what finally made me to book the flights was Vegemite.

Being Miss Z’s older sister has meant that Vegemite has had to become independent from an early age.

For better or worse, she has had to take on more responsibility and grow up quicker than other kids her age.

And I’m hugely proud of her for being such a brave and confident girl.

But at seven, it suddenly feels like she is growing up quickly, and with the constant medical drama surrounding Miss Z for the past year.

I’ve missed spending time with her – and soon, she won’t want to spend time with me anymore.

So, at last I organized our trip and after Christmas, Vegemite and I flew to the US. And I got my respite. I ate and drank a lot. I read a lot of books and took a nap every afternoon.

I taught Vegemite how to slide down a snowy hill on a roll-up sled. I proved that I’m really not very good at trivia. I spent time with two of my best friends from school.

And Vegemite got to spend time with the American side of her family and be the absolute centre of attention for three whole weeks.

She also got my undivided attention. We got lots of cuddles (aided by the fact we were sharing a bed) and lots of giggles.

I spoiled her rotten a lot of the time – and we both enjoyed it.

I even taught her how to eat dinner from a vending machine (crackers and crisps first, then the chocolate).

I missed Miss Z – a lot – but was comforted by my husband’s daily updates, which reassured me that she was staying healthy.

And, I realized, my absence gave him the opportunity to enjoy some one-on-one time with Miss Z – something he doesn’t often get with me always on hand to care for her.

Letting go isn’t always easy as a parent of a child with special needs. We become so accustomed to managing and caring for our child that we become convinced that no one else can do what we do.

However, sometimes it is important to loosen our grip a little.

For me, it gave me the opportunity to enjoy some special time with Vegemite and let Miss Z spend some special time with her father.

And it gave me the chance to come back, refreshed and ready to tackle 2016 and make it our best year yet.