Holiday trains: The life of a single parent with a severely disabled child

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It’s that time of year again when all our kids are home for Christmas holidays. I sometimes think of this, and the Easter break, as a test run for the summer holiday. I imagine the angels looking on with humour, “Can she do it? How many days until she breaks? Place your bets, lads, right here…OHHHH! Day one and she’s done. That’s it, all bets are closed, fellas. Time to get to work.”

I had the opportunity (should I call it that?!) to go shopping with my 2 sons yesterday. It wasn’t just the local shop in the village where I can leave them in the van and nip in for a quick grab of milk and bread. No, this was full on shopping. Those of you on this journey know what that means.

It was time for the Holiday Train. 

When you are a single parent to a severely disabled child, you can’t just find a childminder. In fact, you are damn lucky to find respite let alone someone to casually mind your child for a couple hours while you shop. Nurses don’t tend to make themselves available in that way. Go figure, right? So, you pack up all but the kitchen sink into the accessible van and you head off on the first journey of the holidays, in my case, to a Tesco Extra that is a bit over 30 minutes drive from our home.

Park, unload Brendan down the rear ramp, narrowly escaping the oncoming car whose driver was oblivious to anything but the girl sitting next to him, and lock up the van. Crap. I forgot the grocery sacks…again. Here in Ireland that means buying more of them at 79 cents each because they don’t supply them for you. It helps the environment, but I’m pretty sure us special needs parents have far more bags now than we ever needed! Anyway, it seems my mind was preoccupied when I loaded us up in the van at home. Can’t imagine why.

And here comes the train. 

What? A train at Tesco??? Yes, of sorts. Picture this: Brendan in his wheelchair makes up the front of the train. I come next, pushing him in his chair. The caboose is the shopping trolley that I am pulling along behind me, with the wheels that go every which way, making for an entertaining adventure. The looks we get tell the story. Or, do they?

I make light of it here, but in truth, it is hard. Very hard. Some days, like yesterday, when the arthritis in my hands is flared up and quite painful, it is nearly more than I can take. But I have to do it. There is no one else to do it. Parents in my shoes can’t just say, “Hey mum/partner/friend, can you watch him for a bit while I run to the shop?” There is no one to ask. There are no nurses handy.

Someone said to me the other day, “You always seem to land on your feet.” I’ve been thinking about that statement since she said it to me. I feel like half the time I land on my face, not my feet. The other half of the time I feel like I land on my…well…backside. Maybe I am wrong. Maybe I do land on my feet more often than I realise?

I have no choice but to land on my feet, you see. I have to, for my boys. I am their everything, and they are mine. If I land on my face, or my ass, I MUST get right back up onto my feet. There is no choice: I am a single parent of a severely disabled child. And no, it is not the same as being the single parent of a healthy child. I also have one of those and trust me, I know that jumping in the car and running to the shops with him is 100% easier than with a special angel like my Brendan Bjorn.

The Holiday Train: 4 days into the 18 days and I’m already thinking how am I going to make it without a moment alone to myself for the next 14 days. That sounds terrible. I realise that, I really do. It is, however, the truth…and I am not the only carer who is thinking this thought. How will we do it? How DO we do it?

And then there is summer coming…2 months of the Holiday Train.

If you know a parent on this journey, please, reach out to them. Offer a hand, offer a trip to the shop, or even just offer your friendly, compassionate ear to listen, because for us, holidays can be the hardest time of all.

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3 thoughts on “Holiday trains: The life of a single parent with a severely disabled child

  1. Thanks for yet another beautifully written and timely post. I’ve just made it through day four of a ten day stretch with my angel and I’m planning a grocery shop tomorrow!

    Like

  2. Louise

    Well done embracing the holiday train with your boys! Multi-tasking to the extreme. 🙂

    I find I am constantly making sure my daughter’s arms and legs don’t get hurt or bashed by moving human traffic, when we do venture out of our front door into busy environments! Or embracing the sea air and wheelchair wheels sinking in the sand….all these challenges disappear when my daughter is happy, peaceful and in tune with the sea breeze or sun shining on her face or christmas lights.

    I hope you are enjoying chocolate and hugs off your boys 🙂

    My special angel is relaxing in her padded special bed, enjoying her princess cd! Carefully
    being watched via her video monitor.

    Louise x

    Like

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