When expecting a baby most parents expect to care full time for their child when they’re young. To help them become independent and support them through difficult teenage years before they go out into the big wide world and begin their lives as independent young adults. 18 years of care then like baby birds it’s time for them to stretch their wings and fly the nest.
I doubt my parents thought any different. I grew and developed normally I went from crawling, to walking, to running (admittedly not very often,) and then back to crawling? Figuratively and often literally I am unable to stand on my own two feet. I have regressed back to that baby bird, safely guarded from harm. Even on good days I have to crawl on all fours to tackle the stairs. On bad days, I can’t move, my mum has to help me dress, she prepares my food and supports me when my legs fail. She washes my hair, fetches and carries things when I can’t walk to get them. She holds my hand when I’m scared and wraps her arms around me and clutches me tightly when I’m sad. Even though I’m now taller and bigger than my mum I will always feel small in her arms.
At nearly 21 I should only be living at home part time and then living away at university , or I should cook and clean and work. Instead I lie on the sofa and wait for someone to come home. This is not what my parents had planned for me and more importantly for themselves.
I feel indebted to them, but then most people feel this way about their parents. But my mum and dad have had to do so much more than was ever expected of them, and the most astonishing thing of all, they don’t mind. I know my parents would rather they didn’t have to support me in this way, and I wish they didn’t have to either. But when I tell my mum she is a carer she says ‘I’m your mum, it’s my job.’ It was her job when I was young, now she is going above and beyond when was expected of her.
I am incredibly blessed to have such wonderful parents. My mother is my best friend, I love nothing more than sitting together in a café, hands wrapped around a mug of hot chocolate as we gossip and people watch out of the window. We always have a slice of cake each which we split so we can try both types. I am so happy we have the relationship that we do. As children get older they can lose a closeness with their parents. In our case, as I’ve grown up we’ve become closer.
I know my father struggles with my pain more than most. I can see the sadness and concern in his eyes when I’m in pain. He’s always been fairly physically fit, he loves to walk. I could never understand the appeal of ‘going for a walk’ but for my dad, there is little better. For someone who will walk everywhere given the choice it has been hard for him to adapt to my limited mobility. Despite his love of walking he does his best to avoid it when he is with me. For a while he couldn’t get the balance right. Even now he still struggles a little but he is trying. He’s a very quick walker, even at the peak of my physical ability his stride was more like a light jog to me. For a while he would set off at his normal speed and I would hobble behind with my walking stick, breathless and sweaty. But now he has learnt more about my abilities, he can fairly accurately anticipate what I will be able to do and what is too much.
My dad is the worrier, he is constantly making sure I’m okay. When my mum wants to go out somewhere, my dad will agonise over leaving me alone all day. He will worry if I’m alright, whether I’m too lonely, whether I’m sad. Most of the time he will encourage me to go with them, partly to get out of the house and partly to keep and eye on me and my wellbeing.
I often feel incredibly guilty that I have to rely on my parents in this way. I have to keep reminding myself that being ill isn’t my fault and there’s nothing I can do about it. Even so, I wish I could take care of myself, even for a few days to give my parents a break. I know it gets to them sometimes. Particularly my mum. I rely on her the most. She is the one that has to help me take basic care of myself. I know how annoying it must be having to go up and down the stairs like a yo-yo getting things for me. I feel terrible asking but the stairs crease me and I know I will struggle. My mum knows this too which is why she does it. She knows it’s not laziness, but even so it’s tiring and irritating but she does it without complaint.
I love the saying ‘to get the rainbow, you have to have the rain,’ and we’ve had more rain than most (not just because we live in Wales.) Despite the figurative downpour that is my life, my mum and dad are always there. I am truly blessed to have two parents that love me unconditionally, that hold me close during the bad times, soothe me when I’m in pain and are there to celebrate with me during happy times. Sadly according to many fibro forums, a lot of families are unsupportive.
It seems it is a rarity to have such an amazing support network. It just makes me realise how lucky I am.
Mammy and daddy, I love you to the moon and stars and back. To the Andromeda galaxy and beyond. Thank you for being amazing, you are my heros. 💕