Additional Needs

Why Winter Isn’t Party Season for Special Needs Parents

Posted by Ceri-Ann Brown on 10th February 2017 Additional Needs, Disabilities

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Much as I do enjoy cosy nights in, my sentiment for winter is the antithesis.

My main reason is health issues.

Amy is not a medically compromised little girl - and for this we are incredibly grateful.

However (and this is a big however), when she does inevitably catch a cold or get ill, and it can quite regularly result in an ambulance trip to the local hospital.

When they are unwell it is literally one of the worst things ever. The constant uncertainty, the constant trying to work out what constitutes as needing a trip to hospital or just bed rest and fluids.

It is a story all too familiar for so many special needs parents.

The onset of chest infection season. The season of having to cancel plans.

For a lot of people I know chest infection season is everyday. For us thankfully it is mainly a winter only event but it does happen randomly sometimes too. My heart goes out to everyone out there contending with medical issues like this on a daily basis.

She was in an ambulance just before Christmas. I received a call to say that she was struggling to breathe and was requiring oxygen and nebulisers.

For a lot of my friends this is a constant occurrence, when it happens to us it still fills me with absolute panic. She did her usual when arriving in hospital - after all that initial panic, her temperature, her sats, and everything else become stable and within the normal range.

This was the last day we had free to finalise our plans for Christmas and get our shopping done.

Obviously she comes first and will always come first. So this time we were horribly unprepared for Christmas.

I feel very selfish for thinking this - but I felt robbed of my free time. It is no one's fault at all.

But it upsets me how you simply cannot make plans in life. Nothing is firm. Things can change in a heartbeat.

This is why I live in a constant state of anxiety and why I dip between positive and despair.

This is fight or flight, in overdrive.

We know the drill now. Ambulance, waiting around on the assessment ward, getting a chest x-ray, leaving with antibiotics.

Or if she has a tummy bug at the same time, the excruciating experience of watching as several people try and fail at canularising your child as she has had so many before she is mainly all scar tissue.

Just because it has happened to her so much doesn't detract from how draining and upsetting it is to see.

Her weak swallow and cough often means aspiration when she has a lot of mucous and this is what causes these horrible infections.

We recently received our very long awaited appointment for her GJ button.

(It's like a G tube but with an extra bit routed through to the jejunum...we hope that by bypassing her stomach we will understand more about her complex gastro issues, and also reduce her time tethered to the feeding pump).

This was an appointment I have had to chase up constantly and eventually had to put in a formal complaint to achieve. Imagine my consternation after all of the pre-op checks and a 6 hour wait... getting told that she was too poorly for the procedure.

Don't get me wrong. They made the right call.

She cannot have sedation/a general anaesthetic whilst this poorly. I get that.

It was the fact that we had endured 3 weeks of first her having a horrendous bout of gasteroenteritis for her to then catch a cold which then turned into a chest infection that just wouldn't budge.

I had been so nervous but also hopeful about this GJ that I barely even reacted when initially told the procedure would have to be postponed. I was hoping to bring in the new year with a new feeding regime and hopefully less gastro issues.

Illness like this has the ability to suppress all hope and motivation.

It can isolate you even further and bring a sense of bitterness that you and your child have to experience this.

All children get poorly. It is horrible. But when they can't tell you what hurts or what they need it brings me such grief.

All you can do is obsessively check temperatures, her responsiveness, her complexion - just every single sign you can to ensure you have done all you can to make her as comfortable as possible.

You wonder - is this ever going to stop? Is this how it will be forever? You speculate over their quality of life and agonise over how you don't ever feel you are doing enough.

It makes me wish the party season didn't have to be the time of year we are most likely to be in and out of hospital.

We missed three of her Christmas parties, one of her nativity plays, and various other great things.

I was so grateful two days before Christmas when she smiled for the first time in almost three weeks.

By Christmas day the antibiotics had truly kicked in and we had our little girl back.

I hope we are out of the woods for a while now and only have the everyday medical issues to contend with such as secretions, stoma granulation, hip and tone issues and so on.

Wishing all other families a happy and healthy rest of winter.

Failing that, I will see some of you in the hospital parent lounge necking a quick sneaky coffee to give you that boost you so desperately need.