The Reality of Having a Sibling Labelled PMLD.

Hello again!
Today’s post is a little bit more serious and “real” than my usual ones.
It’s a personal post and one that some people may consider as a bit of a taboo topic.
It’s a topic that not many people talk about very often, although we probably should.
It’s the topic of having a sibling who has an impairment.

My younger sister has the label of PMLD (profound and multiple learning difficulties). In other words, she has severe disabilities and as hard as it is sometimes, having a younger sibling with such complex health needs has taught me so much.
Here goes….

1. I’ve learnt to be more than “just a sibling”.
More so since my mum left, there are times where I feel like more of a mother than a sister to Chloe. And it’s not just in the obvious times like meeting at her school/college or at the latest hospital appointment. It can be at any time. I feel so fiercely protective that it simply does not compare with any other sibling bond I know of. We have a bond which is stronger than most and it’s unbreakable. I mean, we still have sibling rivalry and we beat the crap out of each other some days, but that’s siblings for you.
I cannot even begin to imagine a world without her in it, I don’t even want to. Being her sister has taught me so much, not only about myself but about society too. Being her sister has taught me to be much more understanding and accepting and while I’d take those illnesses away in a heartbeat, I’m so glad that she’s MY sister.

2. Love, hate, and laughter.
I think it goes without saying that having a family member with such complex health needs can be challenging at the best of times, let alone when they’re ill in hospital or having a bad day. While you love your sibling and there’s nothing in the world that could ever possibly change that, you hate their illness, you hate how complex their health needs are and you hate how much they miss out on and you hate how their impairment’s ripped all “normality” from their world.

There’s an old saying about laughter being the best medicine and some days it rings so true. There have been times where if my family hadn’t of laughed, we’d of cried. And sometimes, it’s times where other families can’t fathom out how you manage to even smile – I sat my GCSE’s with my sister lying in an Intensive Care Unit, I had an English exam the morning after being told to prepare for the worst but my family still managed to crack jokes about how “Chloe never does things by halves, if she’s going to get sick, she’s going to make sure we notice”. It’s those times that other families wouldn’t cope with, but it’s just another “normal” day for us.

3. Sometimes being the parent of your own parents.
There are only seventeen months between me and my sister, so growing up I don’t really remember a life before her which means I’ve seen every single one of the struggles and stresses my parents have faced.
I’ve cuddled my mum whilst wiping tears from her eyes trying to tell her “Chloe will be ok”, not being entirely sure who I’m trying to convince, her or me.
I’ve found my dad hiding in a quiet place to wipe his own tears, trying to “be a man” and not let anything get to him because he’s got to be there for everyone else.
I’ve made my parents packed lunches to take to the hospitals, I’ve brought them clean clothes and kept the house clean whilst they’re by my sister’s hospital bed.

And while it pains me to say it, there’s nothing more I can do than offer them love and support whenever they need it and just hope it’s enough.

4. The future is a scary place.
Of all the worries and issues that come with having a sibling with such complex health needs, the future is the one I seem to find most scary and daunting. I worry about how long we have left with my sister – that’s the one I worry about most yet I worry about the least all at the same time. It’s a constant thought that I push to the back of my mind because living with it at the front would be too unbearable and I’d just sit crying all day.
I worry about what’ll happen if she outlives my parents. I’ve spoken to both my mum and my dad about this many times, saying I’d look after her but the reality is I’d have my own life – my own career, my own family, etc. So realistically it might not be that simple. I worry that she’ll end up in a care home, bored out her brain with no stimulation, no conversation despite being non-verbal and unable to use her arms enough to know BSL. Especially with the stories you hear nowadays about medical professionals abusing the patients and clients in their care, how would we ever know with my sister not being able to communicate in a way in which she can inform us of any wrong doing?

I worry even more now that my dad is a single parent to us both (not so much me, I’m almost 22 for goodness sake) and with having his own health needs, he’s not getting any younger. And just as a side note – this post isn’t for sympathy or pity, it’s for awareness, it’s just my reality, it’s the harsh truth.

Chloe is the most loving, caring, gentle soul I’ve ever had the pleasure of knowing and to be able to say that soul is my sister fills me with so much pride I could burst. She’s a better person that I could ever be, she’s always got a smile on her face, she never complains, she really is a little ray of sunshine that everyone could learn a thing or two from.

As I said a moment ago, I am a 21 (almost 22) year old woman. I’ve felt these strains for as long as I can remember, every single day. These strains are so overwhelming, I couldn’t even explain but I could almost guarentee that anyone in a similar situation can relate without any explanation at all.

5. Being selfish.
Being the sibling of someone labelled as PMLD means you can’t be selfish, you NEED to be selfless as much as humanly possible but it doesn’t mean that selfish attitudes sometimes creep in. There are days when I find myself angry with the world for not allowing me to have a “normal” family life, I’m angry that it’s MY sister who is disabled and I’m angry that as a family, we’ve missed out on so much. There are days where I forget how lucky I am to be part of such a strong family, where I forget to be thankful that we still have Chloe because I know some families aren’t that lucky.
Some days are just worse than others.

6. My family isn’t perfect, but they’re mine.
I say to friends all the time “my family are a odd bunch, but they’re my bunch” and it’ll always be true. I might not be in a nuclear family, it might not be the cereal packet norm of “one mum, one dad, and two point four children”. It might have it’s ups and downs. We argue. We fight. We love. We laugh. We’re not perfect but who is?
We’re a family.
They are my family and there’s no other family I’d rather be a part of.

With love & laughter,
Hayley @ Spoonful of Scouse
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