Living with Cerebral Palsy 🍋🍋

Friday 31 March 2017

To the family who ignored us at the zoo.....

This isn't meant, in any way, to be some sort of internet-shaming rant against the family who ignored us at the Zoo. I'm sure they are lovely, their children were adorable and they spoke to them with patience and a clear amount of love during the boat ride we all shared. They were interested in what their children had to say, they listened to them and answered their questions. They were, to be honest,  the kind of parents I like to imagine we would had been, if we had made it through those sliding doors on the day Elin was born. They chatted about the animals, encouraged their imaginations, didn't raise their voices when the toddler kept climbing on the boat seats- you could tell (as far as anybody ever can) that they were just a really nice family.
So why did they avoid all eye contact with us and Elin as we sat behind them on the boat ride? Why did they not return our smiles and our attempts to engage with their children?
I'm really not trying to hold them up as pariahs of society because they chose to ignore us that day, but I have to get it off my chest. This particular family, of course, may just be the kind that don't talk to those around them anyway. We've all been there, at the park, the swimming baths..avoiding eye contact because you can't really be bothered to exchange niceties with someone you'll never see again. I get it. But something felt a little different in this situation.  It was Mother's Day, the sun was out..the atmosphere at the zoo was great. Sharing a tiny boat with someone you're not even going to glance at can start to feel a little awkward.  I want to be clear, I don't think this was due to any kind of mean spirited feelings on their behalf. I think they were scared.
That's what has upset me.
They were scared of how to react or what they should and shouldn't say to us in our isolating, unfamiliar situation. Maybe they just figured it's just easier to say nothing at all. Well here is my open letter to them about what would have been a more preferable response to us and why, perhaps by sharing this I can help other's to feel more confident about interacting with families like ours.

To the family at the zoo,
                  We were the family sitting behind you last week on the boat at the zoo. You seemed like a really lovely family and your boys were super cute. I don't want to make you feel bad. I understand why you didn't look at us or talk to us today, I truly do. It's a minefield of political correctness out there and I think you were scared to say something to us in case maybe it was wrong somehow. Perhaps, in another lifetime, I would have done the same.
                 However I want to tell you that when you see families like ours, saying nothing at all is the very worst thing you can do. Way beyond any worries you may have (in the split second you decide not to talk to us) about causing offence by saying the wrong thing. Believe me, you can't say the wrong thing- we've heard it all before and more. Our interactions with strangers about Elin are so well practised we could hold a conversation in our sleep about her with smiles on our faces. I very much doubt there is anything you could do, say, or ask that could cause us even the smallest amount of offence.
                 Please, just smile at us or better yet -say something. Ask what my daughter's name is, or how old she is. Ask us if we've been to the zoo before. Talk about the weather.  Anything you would say to an ordinary family. Ask if Elin likes the animals. (I will tell you she struggles to see very well but the noise of the flamingoes make her laugh and if she gets close enough to the penguins she loves watching their bodies glide through the water). I don't want to swap phone numbers with you and be your best friend honestly,  just please don't ignore us. It breaks my heart a little bit.
                Your boys would have benefitted so much from what you could have taught them by talking to us. That disabled children don't need to be ignored, they are children just the same. That it's nice to find out a little bit about something new. That there is no need to look away, or be worried about a small figure like them with wheels where their feet should be.  Maybe they would have asked you a few questions about Elin after we parted ways, which would have been another wonderful opportunity for you to educate your children on the positivity of differences between us all. You wasted that today and I am sorry, not for us but for you.
              I truly believe Elin is here for many different reasons. One of them is providing this opportunity for us all to learn a little bit more about the world and to appreciate it's beauty in all of the different forms, whether that be alike or very different to what we are used to. Don't waste that opportunity. Do just a little bit to change our world and you might find your own changed just a little bit, too.
Just smile. Say hello. See where the conversation takes you.
You never know what you might learn. There is absolutely nothing to fear when you see a family like ours I promise. We are really just like you, we're just sailing on a different boat down a different river, that's all.
Kind regards
The family at the zoo.
xxxx


"Education is the most powerful weapon which you can use to change the world"
-Nelson Mandella.
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Wednesday 22 March 2017

The Mother of all fears..

How funny that 'Cerebral Palsy Awareness Day' this year should fall on the same weekend as Mothers Day, since really the two are interchangeable for me. I would like to say that Cerebral Palsy hasn't defined my experiences of Motherhood but of course that would be a lie. It has infiltrated every part of my life as a Mum from the very moment Elin didn't take that first breath. I have sometimes felt that Cerebral Palsy has stolen from me all that being a Mum should be: that sometimes, I feel more like a Nurse; that in the darker times of the past eight years I have wondered, in the absence of easy communication, if Elin even truly knows exactly who I am. Would she mind if I wasn't around? Are we bonded 'properly' like other Mummies and their daughters? My biggest fear is that anybody offering a cuddle and being a diligent carer for her would elicit the same responses from her that she greets me with. 
Deep down though, when I'm not feeling so irrational,  I know the truth is that the bond I've been so fearful about kicked in as soon as the second line popped up on my pregnancy test. That the first time I saw her, despite the tubes and the wires and the grim predictions hanging over us in the silent intensive care unit, I felt it like a wrecking ball smashing through my heart and the feeling has never left, regardless of what I thought we were missing out on together. To torture myself with thoughts of what motherhood should have been is to betray what I do share with Elin. To grieve for what never was and what can never be is not only doing nobody any good, but it demeans my relationship with her and suggests the absence of a strong bond which is very definitely there. It's true I don't enjoy the same relationship with Elin that most of my friends do with their children. I don't know the joy of first words, or first steps or anything that comes with the more 'ordinary' experience. The young children of my friends and family will, when they see me, run up and throw their arms around me. It's a lovely feeling to know someone is pleased to see you and to feel this little chubby fingers dig into your neck. But the irony is not lost on me that I have never shared such a greeting with my own daughter. Such realisations still sting, but with time I have learned to accept my own experience of being a Mum for what it is. 
It's different.
But not less. 
Not ordinary, but extra-ordinary. Because when you strip motherhood right down, what else does it mean other than pure and unconditional love, more powerful than you could ever have imagined? I feel a bit lost when Elin isn't with me, like an actual physical ache. The only thing that makes the nagging anxiety in my stomach disappear during these times is Elin's smile. As soon as I see her face, it's like a weight is lifted and I can relax again. In turn Elin will swivel her head for my voice and break out into a huge grin as soon as she hears me. It feels a little like we are two halves of a whole. Like one of those necklaces from Tammy Girl everyone in school used to have- the heart broken in two with 'Best' on one side and 'Friend' on the other. Just not really whole until they are placed together again. Yin and Yang. Elin is the best to my friend and always will be. I need to stop torturing myself because I know she thinks the same. Not because she can say it, or show it, or make me a card or run at me and throw her arms around my neck after school. 
Because I feel it. 

Have a happy Mother's Day, folks xxx
Mummy Times Two
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Friday 10 March 2017

Surviving a sleepless life...

I have been trying to write this post for a while but...I've been too tired!! One of the things we have to deal with on a regular basis as Elin's parents, yet never really take the time to stop and consider, is prolonged sleep deprivation. Apparently, sleep deprivation is extremely common in children with profound and multiple disabilities. There has been a report by Family Fund, a charity for families of disabled children, which states that 93% of parents of disabled children are up in the night with their child. 49% of parents experience health problems due to lack of sleep. 22% experience tiredness at work and 11% of parents have relationship problems. None of these statistics surprise me. Something that completely blindsided me as a Mum of a severely disabled child was the sleep deprivation. This is because it was largely unexpected, unspoken and there is not a lot of information about it. We were told many depressing facts about what life would be like with Elin following her birth,  but one thing nobody told us  was that she WOULDN'T BLOODY WELL SLEEP. Yet, of all the parents I have come into contact with of children with a wide range of special needs, sleep deprivation seems to be top of the list of common denominators for ongoing issues year after year. It's one of the issues with which parents gets the least support, either because it isn't out there or they feel ridiculous mentioning it amongst the list of 'serious' things they are dealing with (like me).
Sleep deprivation is torturous, fact. The longer it goes on the worse it gets in terms of the generalised day-to-day exhaustion you feel (although weirdly, the longer it goes on the more used to dealing with it you get) In the dead of night, because you don't think you're feeling quite miserable enough, you silently tick off the years you have barely achieved a single night's sleep and try to ignore the silent nagging that you may never have a full night sleep again. The whole depraved sleep pattern can feel like you are in the realms of newborn again. Except that maternity leave finished seven years ago and life has to go on, for us and for Elin. As a result I can sometimes behave in a way I'm not proud of (i.e. be a bit of a tit) or appear to be a shadow of my former self and when I say shadow I mean a great big blimp, blobby shadow because to add to my list of woes I'm eating crap food and snacking all day for energy kicks. 
So what can I do about this?
Nothing (Once all medical advice and avenues have been explored of course)
But there are some things I have done over the years that do help, tried and tested. Now, lucky blog reader, you are going to benefit from my incredible wisdom on the subject. Here are my top tips:
A brief guide to surviving a sleepless life
  • Get yourself some proper coffee. I used to think instant was ok. I was so very wrong. It's proper coffee or nothing. Proper coffee is life.
  • Eat breakfast, even if it's late. Proper breakfast type materials, not three ginger biscuits and a bag of cheesy wotsits you started yesterday (I just plucked that example out of thin air, I swear)
  • Get outside. Don't give into the temptation of staying indoors like the miserable sloth/zombie you feel you truly are. Fresh air changes everything.
  • Get dressed, properly dressed. I am bad for not doing this. Slopping around in holey leggins and a hoody doesn't help you, it justifies your feelings and enables you to give way to slouching around on the sofa ( I'm not judging here btw, I am an expert in this field, I've done extensive research. However tempting, step away from the hoody and claw back a bit of pride in yourself. Honestly it will help)
  • Exercise. HA!!! I know!!! I hate exercise!! But even I can't deny the endorphin-induced benefits of hoofing around a kettle bell every morning and following Davina McCall's 'fit in fifteen' DVD. Proof positive is half term where I did nothing and felt like a slovenly hippo all week. There are billions of amazingly effective exercise DVD's out there meaning you don't even have to leave the house now so really there's no excuse, especially as Davina's in particular takes only fifteen minutes. That's gotta be better than nothing, right?? (Also, tip: It helps to scream loud expletives at Davina and her disgustingly perfect six pack while you work out)
  • Stop drinking in the week (double HA!) I hate myself for even suggesting this one but I did dry January (it was as horrendous as it sounds) and I've got to be honest with myself and say I don't think the nightly 'medicinal' red wines were helping much the following morning after regular nights of roughly three hours sleep. Go figure. 
  • Cry. Stop bottling it up, it's taking too much energy. Properly cry. Do a massive ugly cry, with snot and everything. You deserve it! This is crap!!! Cry, dammit!! (It works, I promise).
  • Accept help. If there is anyone offering you support, a bit of free childcare, a lasagne, a hug.. take it. Nobody will think you're a bad Mum. Nobody will think you're not coping (maybe you aren't, I know there are times when I'm certainly not- all the more reason to take it) People will only offer if they mean it. Seriously, Accept help.
  • Don't be scared to tell people. Tell them you are so tired you are hallucinating and you feel like you're living your life underwater, or in slow motion and you feel you may also murder someone at any given time. Tell them how bad it is. I am still struggling with this- nobody wants to whinge. You are not whinging, you're explaining.  
  • Get some sleep-deprivation diversion tactics on the go. Read a good book. Take your mind off it. Become engrossed in a box set/series. My go-to choices right now are 'Modern Family' for mindless warm and fuzzy 20 minute episodes of bitesize escapism, or Lena Dunham's 'Girls' if I'm in a slightly darker mood (I frequently am, hence whole reason for writing this post.) 
  • Listen to spotify, if Elin can benefit from music-therapy then surely so can her parents? No annoying adverts, D.J's or songs you can't bare. Listening to music has proven psychological benefits and soothing a sleep deprived mind is no exception.
  • IGNORE the housework/chores! Nobody cares if the washing basket is full, it can wait until such a time as you can see straight again! Look after yourself, not your house.
  • Don't feel bad about having a sneaky nap. In the evening after your tea, in the morning if your child is at school, when you get in from work, whenever your partner/mum/friend/pet can take over childcare, when you're supposed to be washing/ironing/cooking, whilst you're on the toilet- just NAP. You are NOT a slummy Mummy. You're slowly going mental from not sleeping. You are no good to anyone collapsed in a heap on the floor. TAKE A NAP.
I can totally see how the stats at the start of the blog have come about. Support and understanding, not only from each other but also friends, family and work colleagues is paramount in retaining your health, sanity and relationship. Don't underestimate people, most folk have experienced a sleepless night and will know exactly how you feel if you're dealing with it on such a regular basis.
As a final thought, I want to acknowledge something I realised last night. After yet another few hours of Elin playing her favourite game of 'dodge the sleep' I predictably relented and let her come into our bed. She, equally predictably, falls into a deeper sleep than Princess Aurora the moment her head hits our pillows (though sadly even that failsafe comfort doesn't seem to even be working lately). As I've outlined, it's beyond tiring (and not to mention tight for space- sardines in a tin, anyone?) but the truth is, sometimes its hard to feel needed by Elin as a Mummy, in the traditional sense. So if I guess if I have to wait until 2am for her to really need me and only me then I'll be there every time and despite absolutely everything, I'll be smiling for her. I know how lucky I am to even have the option of having her close and safe each night. As I eventually, inevitably, watch her nod off, I wonder what she dreams about. Is she as happy in her dreams as she is when she wakes me, smiling as she always is? I hope so. I hope, in her dreams, she is free.
Have a wonderful, sleep-filled weekend, folks.
xxxxx

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