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Special Needs Parenting: The Balance Between Acceptance, Hope and Perseverance

Rochelle Followes by Rochelle Followes Additional Needs

Rochelle Followes

Rochelle Followes

I am parent to a gorgeous little blue eyed boy who has complex needs. I have a Facebook page, 'my daily miracle' where I share our life with others...

For many of us we vision them going from babbling to talking, and from crawling to walking.

The men in the family joke about them being the next Wayne Rooney and the ladies dream about them being the next star in The Nutcracker (these are just examples by the way and weren't ours).

So when that image doesn't quite pan out, when it doesn't come so easily for your child to babble or crawl, when your child has to fight so hard to survive what are our goals meant to become?

How far should we push that child to try and succeed in something that many other children do so naturally?

I'm not saying it's at all easy for all children to crawl and walk, I've witnessed many of children take their time doing these things, but they do achieve it in good time.

How much therapy are we to push our child through until we just accept that it's not going to happen?

Or should we never accept anything?

I've recently found myself wondering what I am doing with Zachariah, I've become a little confused as to where I want us to go, how far I want to push him and how much I want him to just Be!

Before his Gastrostomy, Zachariah had been quite poorly, therefore having a bath was a struggle let alone therapy and stimulation.

It got me so worried seeing him not eat, get raised temperatures and be totally fed up.

As I was sat there cuddling him and worrying about the way I was holding him and becoming concerned that he hadn't been in his standing frame for a few days that I realised that I spend so much time consuming these kinds of thoughts.

It was here I realised that does any of that truly matter?

Isn't it my duty right now to cradle my boy and get him well, isn't my duty to be chasing up with Doctors and pestering them to get his op date forwarded until they cave.

Why am I here in the midst of a really tough time worrying over his exercises.

Therapy is important of course it is, it's been very beneficial to Zachariah in many ways, but surely there's a time and a place and right now it isn't happening, so why beat myself up over it.

Recently we caught up with a friend, who asked me if I had considered glasses for Zachariah.

I was a little confused by this question and replied saying he's registered blind and it's to do with the signals in the brain, how can glasses help that? (she knew this by the way).

She then went on to remind me that eyesight can keep on developing until the age of 7, through brain therapy and stimulation and possibly some glasses, Zachariah's eyesight could improve.

It was here I sunk and started to feel like a crappy mother, we've all been there right?

We get so lost in it all that sometimes we step out of the battle, we lose that determination. I had reached a point of acceptance that Zachariah was blind and that was it.

I didn't realise I had done it.

We need to find a balance between acceptance, hope and perseverance.

We need to look at what is truly important at that moment in time and not get tied down with masses of guilt, emotion and frustration, yet still have hope that tomorrow is a new day.

Sounds simple right?

But if you are like me, you like to complicate matters by worrying over things that you cannot control.

I’m sorry that there are no answers in my blog as to how we juggle all this, but I hope it helps you to have more peace about your decisions and attitude to your child’s happiness and development.

I hope that you can see that you are doing great!

I guess what I am saying is never accept anything in concrete, have perseverance to change for the better and have hope for new things.

Zachariah never gives up, so neither will I, my policy is to follow his lead! :)

Hope I’ve made sense, some things can be difficult to express.

Much love,

Mummy to Zachariah


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