Family life

This weekend has been a good one. It’s had a few ups and downs, which I expect will be a permanent thing for us as a family living with Duchenne, but other than a ridiculous situation on Saturday, it’s been mostly good and we’ve enjoyed some awesome family time.

I had a massive wobble on Saturday. I took Hugo and Jasper to a birthday party. They were having a lovely time but were both insisting on using the toilet every 5 minutes. Other than being incredibly annoying, this wouldn’t normally be an issue. However, this particular house had a stairlift. Yes, a stairlift. What’s wrong with that? Well, when your life and all its plans are suddenly turned upside down, the slightest little thing can be a massive reminder of what your life has become. Let me explain… 

The first trip to the toilet was perfectly normal, that being juggling a handbag, two change bags, holding Jaspers hand and guiding Hugo’s bottom up the stairs, whilst trying to keep my own balance. Except now there was an ugly stairlift in the way. However, I checked the stairlift out. I was curious to see how we may be able to get one in our house. The second and third trip to the toilet didn’t really cause any heartache. The fourth trip to the toilet (only 20 minutes after the first, may I add), the stairlift suddenly started to freak me out. Jasper kept playing with it, Hugo kept falling into it, I whacked my knee on it. I immediately felt an overwhelming panic about the fact that we will actually need one of these soon. The curiosity was swiftly replaced with anxiety. 

Now, let me quickly set the scene here before I explain further. We were at a garden party full of toddlers and many adults. I didn’t know anyone. After that fourth trip to the toilet, Hugo had a poo accident and Jasper was being incredibly whingy. Pretty standard for my kids. To add insult to injury, I had no nappy bags for the pooey pants. I had a quick glance in the bathroom but couldn’t spot any. As I was looking, Jasper had legged it down the stairs, Hugo was almost at the bottom, and I was left standing at the top of the landing with a pair of pooey pants and nothing to put them in. I figured someone must have a nappy bag downstairs, so pooey pants in hand, off I went. At that precise moment, the heavens literally opened outside and everyone, I mean everyone, came running into the kitchen just as I walked in holding up a pair of pooey pants shyly asking for a nappy bag. It couldn’t have been any worse. 

So, back to the stairlift. After grabbing a carrier bag for the pooey pants, the boys and I were stood in the hallway surrounded by people we don’t know. Hugo was whinging, Jasper was grabbing everything in sight, and I was feeling the start of a panic attack building up inside me. Just at that moment, someone cracks a joke about the stairlift. Under normal circumstances, I wouldn’t be even slightly bothered. But at that moment in time, someone innocently saying ‘I could do with one of those when I can’t be bothered to walk up the stairs’ was enough to make me want to burst. I was struggling to keep my emotions together so decided it was time to go home. With the pooey pants stinking my handbag out… 

I got home, sat the kids down with their birthday cake, and disappeared into the kitchen where I had a good cry. An innocent joke about a stairlift literally turned me into an emotional wreck. Poor Hugo will actually need a stairlift in the near future, not because he can’t be bothered to walk up the stairs, but because his weak body will not physically allow him to do so. A bloody stairlift was responsible for making me feel shitty for the rest of the afternoon. Seriously! It’s amazing how the mind works at times. I guess this will be something that will happen quite often now. It takes something to be in your life before you become aware of it. A bit like when you are pregnant, you suddenly see pregnant women everywhere, whereas you’d have never even noticed them before. 

We had friends round Saturday night and after a couple of drinks, the stairlift was forgotten about. Today, we had a family day out at Tattershall Farm Park. We had a birthday party there so decided to make a day of it. We had a lovely day together, followed by tea at my grandparents house. Duchenne took a backwards step today, and actually let us get on with our day. It didn’t rear its ugly head for once and we all enjoyed some quality family time. Here is a picture of my world, love them all so much (maybe not the goat) xxx P.S you are lucky it’s not a picture of the pooey pants 


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