I recently read an article that claimed that people that have cerebral palsy use up to three times more energy than their able-bodied peers. I've witnessed it with Amy many times.
I've seen the concentration and focus required for her to control her arm and reach out to press a button on a toy. It's bittersweet because on one hand it's a huge achievement and it makes me so proud.
There was a time when we didn't think she would be able to do this.
But there's the side of me that feels grief for the fact things have to be so challenging for her and that she needs so much extra brain power and energy to achieve things that most people take for granted.
It got me thinking about energy as a concept and how all of us use their energy. I don't have any statistics for it, but I can say through first-hand experience... that being a special needs parent requires more energy than you could ever think possible.
I reflected on my days as a full-time worker; when I didn't have a child yet. I used to struggle to get up in the morning, and I struggled to keep on top of day to day chores and running of the house. Back then I said silly things like "I can sleep when I'm dead... now is for living"... now I'd sell my left arm for a nap. (Only half kidding)
However now... I would love to have so little to do!
I didn't know just how easy we had it. It's all relative I know... but if I focus on just one aspect of our day... getting ready for school.
It's a nonstop chaotic couple of hours 5 days a week. I find myself having to get up earlier and earlier to try and get the jobs done before transport arrive at our house. every night I try and prepare as much as I can... I pre-draw her morning meds, I lay out her clothes for the day, and I try to make sure her various bags are properly stocked.
There are days where I simply can't because I'm too exhausted... but the knock-on effect of this is an even more frantic scramble in the morning.
It's a pretty intense time each morning... every time I think we are ready I realise... did I pack spare bibs... did I wash out the suction machine... Oh hell I haven't brushed her hair yet... and where are her splints?! And so on.
8am transport arrive and I perform my best impression of super mum; I even try to throw on some foundation to hide the eye bags and put my scarecrowesque hair into a bobble to feign looking presentable.
I smile and say goodbye then collapse back into bed for a few minutes. I soon ping back up and commence the bedroom fumigation... I won't go into detail... but daily bedding changes are a thing in our house.
The house is now littered with syringes, dirty nappies and bedding, and quite often the dishes from the night before.
When all of the jobs are eventually done, and errands completed... I sit back in our sofa and feel the true ache that comes with a very physically demanding job. Some nights we don't get a lot of sleep. Amy sometimes has nights where she is quite unsettled; and on the nights where she is settled the feeding pump likes to sing the song of their people.
If I didn't know any better, I'd suspect someone of casting a curse up on us where we are guaranteed as little sleep possible! Amy has recently been unwell and clearing herself of a cough and cold can take several weeks.
You can be fast asleep in bed and then you hear it... the cough and splutter. You lie there wondering if she's okay but also too tired to get up.
Then she goes quiet. Is she ok?
The noise worries you, but so does the silence. Sometimes we go in and check she's okay, other times you just know and you go back to sleep. This broken sleep is something I think an able-bodied child of her age would have outgrown (unless of course they too have the cough!) and I wonder - will it always be like this?
It validates to me our need for those respite nights where we can rest and catch up on sleep.
But I wonder - where do we get our energy reserves from? Because every day is the same... the lifting, repositioning, the standing in awkward positions to fasten wheelchair straps... the twisting your back putting her pyjamas on and fighting against her thrashing movements.
Sadly, a lot of the time I turn to convenience food and junk food.
You'd expect me to be in the best physical shape of my life, and I know if I didn't eat so much rubbish I'd be like an athlete! However fresh food can be expensive and take time to prepare... I think the extra energy comes from me cutting corners in other areas such as my own health. I am working on it, but right now I am not sure I am in the right headspace to confront my many issues.
Right now is the battle to get through to bed time with everyone safe and happy, and everything in relative order. Caffeine of course is my other saviour. Not great for the anxiety prone I know... but it's that boost I need throughout the day and it spurs me on. There are worse habits I tell myself (as I justify my tenfold terrible habits!)
There's no two ways about it. Parenting is hard work. It's rewarding, it's amazing, there is nothing like it.
Special needs parenting requires extra patience, extra washing, extra most things. There is always something that needs to be done, or something you wish you did more of (speech and language stuff, physio, researching feed options etc).
Last week we went on a day out shopping. We walked 6km, which when pushing a chair around and lifting up and down constantly to get through doorways, over kerbs and steps can be tiring
It adds an extra strain when you are trying to carry a shopping basket, push the chair, pick up dropped toys, and pick out your purchases. Sometimes it's like you need several extra arms! My friend and I joked the other day that when our children aren't with us, we don't know what to do with our arms! It's so true.
The next day after shopping, my whole body ached.
We had a fantastic day and made some lovely memories; but it did make the next day harder on my arms and back. Ibuprofen is definitely my friend. The thing is, I'm not really complaining, more just saying it how it is.
Because before all of this I had no idea what people went through with their additional needs children. You really do need a huge reserve of energy but the truth is we'll do it and do it and even when we are at full capacity... we will somehow summon the strength from somewhere to carry on for them. Because that's our world, and we will do anything for our kids.
What do you do for extra energy? What do you do to wind down?
Recently I went to bed listening to a guided meditation. I still woke up feeling groggy and exhausted, but I did feel more positive having internalised a lot of the messages from the video (i.e. "you are good enough")
So, this is one way I feel I can top up some of my reserves, by investing in myself emotionally during a time where I would be lay doing nothing anyway. This way I don't have to find extra time.
Your emotional wellbeing and your physical wellbeing seem to be intrinsically linked. I believe if you work on one, then the other will improve too. I hope to increase my physical exercise, and make better food choices, but like with everything in ours and our children's lives... it's one step at a time, it's wait and see, it's be thankful for the positives.