Relief while grieving a disabled child

Feeling relief while grieving a disabled child seems like a cold and heartless thing.

But when you have witnessed your child in almost constant pain for long enough, this may happen to you.

If it hasn’t happened to you, keep in mind that everyday is new, and that emotions and feeling are all over the place each day. I try to take it a day at a time.

Totally unexpected

The relief isn’t even just because your child is no longer in pain.

It is, in part, because I and my family are no longer in pain too. But of course there is a whole new and different pain to experience now.

We were preparing ourselves for the rest of his life.

It was 3 months before Matthew passed away. The pastor of the church we attended before moving, sat with us.

We had called him to organise the baby dedication of our nearly 3 year old Mackenzie.

A week or so since we received the prognosis that Matthew did not have long to live, the palliative care doctor suggested that we should set some goals.

One of the things that popped into my head right away. During all the stress and disruption, Mackenzie had never been officially welcomed into our church family.

We had done this with both Matthew and Shane around their first birthdays.

I couldn’t comprehend what it would be like to have to plan Matthew’s funeral and then down the track, go back and dedicate Mackenzie.

It was such a devastating thought. In my mind, doing it later would be like trying to turn back time.

Of course we also wouldn’t want Matthew to miss a family moment, that as an older brother he should never miss.

There would be many, but this one was in our control.

So we called the pastor. We had help from our Very Special Kids support worker to get in touch with him, he rushed in.

By the time we arrived everything had settled and we were thinking about our next discharge date.

He was quite surprised, he expected to have to organise the event that week.

That week had been filled with moments when we thought so too. We got the prognosis and then Matthew’s lung collapsed again out of the blue.

We had just changed his care orders, and we were all concerned they would have to be acted on right away.

Thank goodness for that time, he got better again. So we were able to plan a party for Mac’s dedication.

While the pastor sat with us in Matthew’s room. We discussed how we were doing with the news, he said, ‘Part of you will be relieved.’

‘You won’t want to feel that way, you may not understand it, but part of you will be relieved when it is over.’

What a controversial thing to say, right?

Relief while grieving your child?

He was right.

How could you be relieved that you lost your child?

It’s not that simple. None of it is.

Matthew’s care load was huge, the effect it had on our family, finances, friendships, work, health.

We would never have traded it given the choice, but when we longer had any choices. There was relief while grieving.

Not a hint before hand. Until after he was gone.

Not even right away. But little things.

I remember the first time I left the house by myself. I had my purse in my hand. My phone was in my pocket. I had my keys.

I think I turned in circles in the lounge 3 times.

Doing a couple of laps around the house.

I returned to the lounge where Luke was sitting.

“Look” I said, “this is it, this is all I need.”

I was a little stunned. My brain confused.

Such is the ebb and flow of grieving a disabled child.

There were other moments of relief over time.

I went away recently, and when my kids crossed my mind, there wasn’t any real concern.

No wondering how bad it would be when I got back, what disaster would be unfolding. No wondering if I would get a call to come back immediately.

Not having to get two and three or more carers a day to watch 3 little kids. Or should I say two or three for Matthew and one or more to cover the other two.

No training involved. No department politics to navigate to get approval.

I don’t think I can even do the emotion justice, the relief.

But it was and is very real at times, but sometimes it isn’t there at all. I wrote the blog ‘Now What?‘ when the relief while grieving was huge.

It’s also not something you want people to expect from you. Your initial reaction is to the offensiveness of the statement. But it doesn’t mean it’s not true.

I know through my journey that how one person deals with some thing, is not how everyone will. Grief is a very individual experience, with lots of different facets.

Sharing all of the stories means that there sometimes will be parts than make sense to you.

What about you? Have you experience this kind of relief, like a weight no longer being there?

If you’d like to share it, I would be honoured to read.

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