Things I would say to parents of kids with Cerebral Palsy

Let me kick this post off by saying that I know I am probably the least qualified person to be writing this – I’m not a parent, and I’ll be totally honest and say that, at present, I have no desire to be. I know this might change for me in future and if it does then that’s okay, but for now I think I’m far happier with the idea of getting to be the family friend that buys all the noisy, messy toys at Christmas. But anyway, I digress.

I’ve been toying with the idea or writing this post for a while, but I didn’t want to offend any parents by writing an ‘advice’ post when I can’t even imagine what it’s like to be in their position. I’m also not a medical professional; I’m just your average 23 year-old who happens to have Cerebral Palsy herself. I know that no two people are ever the same, and so CP effects people differently so this isn’t going to be a post about therapy or anything like that. I wanted it to be something that I hoped would lift your spirits on a bad day, even though I’m still not sure that I’d be capable of doing that. But I still couldn’t shake the feeling that I wanted to write this post. So, I did what I usually do when I find myself in a dilemma, and talked to my Mum. She told me to just to go for it. So without further adieu, here is my list of advice for parents of kids with Cerebral Palsy, in no particular order:

Never underestimate your child

Never, ever underestimate what your child can and might be able to do one day, because, I promise you they will defy expectations every single day. It might not be yours that they defy every day, but they will astound someone somewhere at least once a day.

I know it’s hard – this part is still hard for me too – but if someone comes up to you in the street and tells you “aw, isn’t your child doing well,” please try and take this as a compliment rather than as them saying this because they don’t know what else to say. They’re most probably saying it because they mean it and they applaud the efforts that you and your child are putting in to be able to do whatever it is that they are doing well. Believe me there’ll be enough people waiting to criticise you, or tell you what they think you should be doing, so please take the compliments of others as a victory whenever they come around.

Never underestimate how much you have helped your child –even though I’m not sure you’ll ever appreciate how much you have

I am always the first person to stand up and say that I would not be where I am today if it was not for the unconditional love and support of my mum and dad. Where others have doubted me or written me off on occasion, they haven’t. And I love them for it. They helped me so much and they know that. They remember all the things they did to help me that I’m too young to recall. I’m old enough now understand just how much that means to me on a personal level, and I’m not sure my folks will ever be able to comprehend even if I try to explain it. They are the ones that helped me discover my fighting streak and lit the fire in my belly that means I want to keep pushing and never give up. I want to keep fighting their good fight, and it’s because they fought so hard in the first place that makes me want to continue.

You are not alone

You are not alone. You do not have to go through this alone. There will be people out there who want to try and understand. Your family, friends, medical professionals. They will want to join you and help you and your child. It can be easy to feel like you’re alone, but these people are out there somewhere. You just have to work out who they are and let them in. Please let them in.

It’s okay to take time for yourself

Please don’t ever feel guilty about wanting a little me time now and then to rest and recharge. The first time I remember my mum going away for a weekend with some of her friends, my dad and I had a wonderful time. He made sure that I had so much fun and tried to keep my mind off missing my mum as much as he could. He took my for my first ever cinema trip, it was to see Disney’s Pocahontas, and we put up the Christmas decorations as a surprise for my mum when she got home.

It’s okay to be sad

When I was younger I used to think that I couldn’t be sad about the things that I couldn’t do because that was just something I had to accept about my CP. I used to think I wasn’t allowed to be sad that I couldn’t go ice skating with my friends or climb trees, but as I got a bit older I realised it was okay to be sad sometimes, it was okay to cry sometimes, as long as I turned that into motivation to keep going and try to learn to do more things.

I’ve said over and over again that I consider myself to be lucky, and I know that I am. I don’t hate my disability; in fact I think it’s had a positive impact on my life in a lot of ways. I still get frustrated sometimes when something doesn’t come easily, and then I often feel like I’ve let myself down for feeling that way. But, I’m only human so I know that this is okay. I just use these emotions as drive to keep going when I feel like it’s all getting a bit much.

Never, ever give up

Enough said.

It might not feel like it right now, but together you can achieve great things

My parents and I am my graduation
My parents and I am my graduation

The Surgery Diaries: Physio time

While I was in the hospital, the physiotherapists would come round at least twice a day to help me with my exercises and give me some new ones to do every now and then. As I’ve said before, I pretty much hated physio up until this point, but then everything changed.

If anything, I looked forward to them appearing at my bedside. It gave me something to do and someone new to talk to. It helped to break up the long days sitting in bed. I won’t lie. At first I was shocked by how hard I found it. Suddenly things that I’d been able to do just a matter of days ago seemed really, really hard. I remember one of the things that I had to do was slide each leg out to the side. Before the operation I’d been able to do around 10-15 of these before getting really tired. In hospital, I was struggling to get my count up to five.  Instead of letting this get me down, I used this as a challenge to try and make myself go one better every time I tried. I didn’t always manage it, but the times that I did it made a massive difference to my self-esteem and helped me feel like I was doing something productive from my bed.

My family were a huge help during all of this. Without them, I don’t think I would have done it as often as I did, or pushed myself as hard. Mum was allowed to stay with me at the hospital so we’d try and do a set every hour or so. Dad would do them too sometimes, but often he’d be there, crossword puzzle in hand, shouting out the clues to distract me from the discomfort, or motivating me to finish them faster so I could concentrate more. I wasn’t very good at crosswords then, I’m still not now if I’m honest, but my Dad is a whizz at them, even the cryptic ones.

Mum even said that when the time came for me to try walking again, she’d dangle money in front of me as motivation to keep going if she had to. I never put that theory to the test in the end, I don’t think she was ever serious about it anyway, but it made me laugh all the same.

When the Monkey Pole bar was fitted to my bed to help me sit up, I would pull myself up on it a few times just to build my arm strength up to make using the sliding board easier. It probably wasn’t the best thing for me to do looking back on it, but it helped me get stronger and that was all I cared about. I hated the slide board so much in the early days. It should have been my best friend because it helped me get from my bed into a chair, but I found it really hard to use so it just made me feel weak and very frustrated. By the time finished using it though, I could even get on and off it without help, so I guess something paid off somewhere.

Now, when I don’t feel like putting the work in (which is more often than I would like to admit) I try and think back to what the post-surgery, sixteen year-old me, would say to that. I think she’d call me lazy, and I think she’d feel let down that I didn’t continue with the hard work. So, I still try and push myself to work hard, both for my family and for myself.

The Surgery Diaries: The day my hips and legs were broken

Despite my constant efforts to focus on things other than the fact that I’d be going under the knife that summer, the day finally arrived.

It was a Wednesday Morning; that much I do remember. Because the hospital that I’d be staying at was a long way from home, I’d been admitted the night before. Mum was allowed to sleep at my bedside for the duration of my stay. While would make the 60 mile journey from our house with my little sister every day. I don’t really remember much before I went down to theatre the next day, other than the fact that I kept trying to read a Nicci French book but I couldn’t concentrate. So I’ll just skip ahead to when I woke up after the surgery was over.

When I woke up in recovery I was greeted by a nice and smiley nurse who told me that everything had gone well and that she’d tell my parents they could see me now. In they came and dad told me that they’d managed to get lost on their way from the ward, even though someone had shown them where to go beforehand. I managed to mumble some kind of playful insult that I had to repeat twice because I was too groggy from him to understand first time. Then mum told me not to be embarrassed about crying because lots of people do that after anaesthetic.

I hadn’t realised I’d been in tears until then but I was too woozy to care.

More nurses came and told me that I’d got an epidural in my spine so that I wouldn’t feel the pain that would be in for two days so I wouldn’t be getting out of bed. Oh good,  I thought , I’m way too tired for all that anyway.

That was when the other nurse held up a bag of urine at the end of the bed.

Is that mine? Surely not…Nobody said there’d be one of those…

“Oh, don’t worry” said Nurse Number One, still cheerful, “I emptied it half an hour ago,”

Woah, woah, woooaah That lady was holding up a half-full bag of my wee and the other one had already had to get rid of some?! Whaaaat?

After saying sorry that they’d had to do that over and over, they reminded me that they’d done it all before so I didn’t have to worry. After a bit I was transferred onto another bed and taken back up to the ward.

This is the part where things get a bit blurry, I suppose from painkillers, the passage of time and the fact that I was trying to process so much all at once. I remember that I tried to east a few biscuits to line my stomach for all the pills, but the decided that that they didn’t really like being in my stomach so much, so I gave up on the idea of food until the next day.

I couldn’t lie flat on my back or on either side (for obvious reasons) so I had to try sleep half-propped up. I’d been looking forward to bed time so much, but sleep just didn’t want to happen. Nurses had to do my observations every half an hour for the first couple of days which didn’t help.

The next morning more and more things began to hit home. I knew that I had to tackle breakfast even though I wasn’t hungry. It was then that I realised that the friends who had tried to warn me that I wouldn’t be able to sit up at first were right. It hurt. That meant that I couldn’t reach the table to get to my toast though, so mum had to feed it to me (something else I hadn’t realised – the list was getting quite long by now). I had to drink loads to help me get it down because I wasn’t  in fully upright position.  So I got really full really fast, even though I hadn’t really had much of it.

Great I thought again I have a feeling it’s going to be a looong day.     

The sisters are doing it for themselves

Well, my little sister Sophie came to my aid again yesterday. I needed to wonder into town to collect one of my book reservations from the library (Joyland by Stephen King, if you’re wondering) and I’d already agreed to spend some time with Sophie while my mum ran some errands, so I suggested that we turn it into a girly shopping day. I knew she wanted to pick up some accessories for a new party dress she’s just got, plus it would give me the chance to spoil her a bit for all the stuff she does for me.

I was mostly expecting her  to say that she’d much rather have movie day because she loves the chance to choose a DVD from my collection rather than the family one, (just lately we’ve tried to watch the Addams Family Values about four times but we always keep getting interrupted), but she agreed straight away. She said she was in the mood to find something pretty for her new outfit. She even declined the offer to go and see Monsters University at the cinema afterwards, telling me that she wasn’t in a film mood. However, I wouldn’t have blamed her for backing out when I mentioned that we’d have to get the bus together.

Whenever we go out, it’s usually my folks who take care of the folding and unfolding of my walking frame Martha so today would be a first for her. She’s seen some of the challenges I’ve faced on public transport with mum around so I did wonder if she’d change her mind, but she didn’t. I showed her how to collapse Martha and put her back up again and she seemed to manage just fine. I gave her the option of staying home again, but she said she still wanted to go, so she helped me with my shoes and off we went.

I could tell that she was nervous, because she was really quiet as we waited at the stop. To tell you the truth I was equally nervous being the one responsible for the safe keeping of her mobile phone and spending money (courtesy of the Bank of Dad). Luckily when the it arrived there were no other prams/wheelchairs/walking frames so we were okay. She helped me guide Martha on safely, took her own seat and gave me a massive grin,

“Feel better now?” I asked. She nodded.

At the other end a nice gentleman helped me get off again and she took care of Martha. That was the hard part over with. I was so proud of her. If she was worried, it didn’t stop her from taking on the bus challenge with me. I tried my best to make sure she had some fun and even took her for milkshake, a very well deserved milkshake.  Oh, and some hairspray. And some hair clips.