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Day in the life of us

I’m Chloe and mum of three children. No, sorry: Careworker and Medication Administrator for my three children, or P.A. and Diary Coordinator of medical, school and social appointments, or Private Chef trained in diary-free catering and the production of meals to sustain blood sugar when required to help prevent blood sugar drops associated with metabolic hypoglycaemia associated with neuromuscular conditions.

I used to be just Chloe!

I’ve just sat down with a cup of tea to write our “Day in the life of us”.

So the morning routine consists of early morning shouts of good morning from three different bedrooms, the bedrooms occupied by my three beautiful children. They are ready to get up, so I’ll start with my little boy, he is 8.

A drink of water is always his first request followed by his morning medication and leg and foot stretches and removing his overnight peg feed. Then it’s time for washing, dressing and carrying a still sleepy, floppy, curly haired monster to the living room.

Now it’s my oldest daughters turn, she is nearly 10 and we follow the same routine (apart from the water… orange juice here and I dare you to forget). I also add Fashion Advisor to my list of daily duties here because after all, it’s a well known fact 10 is the new 18!

Once she is washed, dressed and in the living room, it’s the baby of the family’s turn. I say baby but she’s 4. There is no peg feed here and no morning medication at the moment (this could all change depending on her health and taking into account the inevitable reduction in body strength and her ability), nonetheless she is washed, dressed and sitting on the sofa watching TV with her brother and sister. They haven’t fallen out over the remote yet so I’m not sure who is in control of the telly, but the remote has been dropped twice while I was doing the breakfast and of course needed picking up and passing back at the earliest opportunity – probably the most important part of the morning so far in their eyes!

So anyway they have all had breakfast, the dishes are soaking in the sink and the kettle has been boiled 3 times. Cup of tea finally in hand and sitting on the sofa. Bliss, for around 7 minutes, my eldest needs the toilet, bottoms back off, she is back in my arms and off to use the bathroom;

Cup of tea take two, and the dreaded question… “What are we doing today, mum?” (note to self: add Children’s Entertainer to my CV).

So in the end we decided on a “lazy” day and a wander up to the town before playing outside. So and hour later once they had all used the bathroom again, had their incontinence pads on (they are fully continent, however lack of good disabled facilities in Most places and the need to lie flat to remove clothes easily they are preferred by the children when we are out and about at the moment), they are all strapped in wheel chairs and  we were off.

My youngest having a mini break down that she can’t go to town in her powered wheelchair like her brother and sister, however at just 4 and still easily distracted a little more practice is in order for the benefit of people’s toes and shop displays! For her age she is very very good in her powered chair and will probably be proficient enough to use it as her primary chair before she is 5 as her brother and sister were.

We pause to phone daddy, my long suffering husband who was at work today, he works part time and expertly becomes my assistant on the days he is at home. I’m sure he would say I’m his assistant but that’s an argument for another day.

Any way town, we went, we shopped, we called in to a café for lunch. We all had beans on toast and a cold drink, I chose easy food because the poor staff had just helped me move a table and 4 chairs to fit us in.

Half past 2 and we are home, pads were changed and the three of them were back in their wheel chairs (youngest with a smile from ear to ear) because she is now “driving solo” in her powered chair. Our older two deal with their condition very well; they have the occasional breakdown for the things they arnt able to do but on the whole, they are happy content children who have accepted their challenges and tacked them head on with a smile! My youngest however finds things more difficult, the heart breaking questions; I try so very hard to answer the “Why can’t I stand up any more, mummy?”, “Why can’t I walk?”, “Why can’t my brother crawl any more?” The most heartbreaking for me was when she came home full of wonder. “Mummy mummy, guess what my friend at nursery can do. He can run!” A lump in my throat that was so hard to swallow appeared and the all-too-familiar sinking feeling as my heart melted… “But he hasn’t got super fast wheels” was all I could reply. She will adapt and her abilities, however much they change, will be her norm and she will live the fullest life full of fun and adventure. As parents we both, will make sure of that!

But I digress, it was play time outside, they love to play out “on their own” like their friends do, so our little cul-de-sac only possible because I have two fantastic sets of neighbours who are now good friends and operate a wheelchair supervision service for me between my drive and theirs I had an hour while they played to wash the breakfast dishes, make another cup of tea (the morning two were cold and still half full), check on hospital appointments, check my emails as school funding still isn’t confirmed for September and is chased almost daily, and pop some chicken in for tea.

Now as I sit with ANOTHER cup of tea (promise I will finish this one), my darling husband (he deserves this title for now because is washing up!) has doubleheaded the evening routine with me, this morning in reverse, and lined the hall, which now resembles as wheelchair showroom, to charge all the chairs. Just the cleaning up to do now, and then an early Ish night, we will be up in the night, inundated with requests for drinks, turning and alarming peg feeds!

I’ll leave my diary day now and count my blessings that all in all at the moment, I have three beautiful, happy, clever children who are in the best health they can be at the moment. All this could change on a hairpin but we deal with that in the best way we can! As we are forced to deal with the heartbreaking decline in their individual abilities: the decline in strength that is inevitable without treatment.

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