Living with Cerebral Palsy 🍋🍋

Wednesday, 20 March 2013

Life's a Beach

The Easter holiday's are approaching, Elin is in very good spirits and we are all looking forward to a break! We have a big Drake family holiday booked for a little Welsh town by the sea and can't wait. Last time we went on a big family holiday, Elin was nine months old. She was very small and more importantly she was easily transportable. It was only when a friend asked me recently, on hearing about our holiday plans, if I was looking forward to a nice walk on the beach that I was struck by something rather obvious. As a family, how do we go for a walk on the beach? Buggy's do not exactly lend themselves to sand. Not an issue for most family's with babies or young children- they get carried and by the time they are too big to carry, they are walking. But for us, it's almost impossible to carry over two stone of child further than a few hundred yards, particularly a child who has no muscle control/tone and no ability to grip with hands or legs. Certainly wont be able to push a buggy over the dunes! I got to thinking Elin and I would just have to miss out on any beach-walking activity. But then a friend posted a link to something on Facebook and we have a possible solution. A toddler carrier/back sling. Crucially, it's not the same as the walking rucksacks you see a lot of people with. We tried one of those and since they rely on the child being able to assume a 'sitting' position and maintain it with their muscle tone, it didn't work for Elin. She simply bounced around in it, her head dangerously lolling back and two between the metal frame (no matter how much stuffing with towels we did). She couldn't 'hang on' and it was desperately unsafe. Plus, she hated it. The toddler back-sling seems like it could work, as it will keep Elin resting on our backs, hopefully encouraging the 'safe' feeling she enjoys so much from body-to-body contact, keep her hips wide apart to discourage leg tension and 'dangling' and has a mesh hood that is supposed to be used if the toddler wants to go to sleep but for us should act as a nice soft head support. I am very excited about it arriving, could it be the answer to the problem of walking on the beach? Time will tell, photo's will follow :-)

Wednesday, 13 March 2013

Life is like a box of chocolates..

Every day when I'm waiting for Elin's bus I get reminded of the scene from the end of Forest Gump where he is just sitting on the wall waiting for his son to get home. It's kind of how I feel, most of my day is just different ways to fill the waiting space, until I can cuddle her in my arms again. Work, housework, seeing friends, supermarket, phone calls, gym..whatever. It can be very enjoyable, my time without her. Let's be honest every Mum likes a break. But mostly it's just a waiting game. Because nothing is quite right when she's not with me. Until, with ten minutes until the bus arrives, the waiting becomes almost unbearable. Elin hates travelling and is undoubtedly distressed beyond measure on the tired and lengthy bus journey home. My wait morphs into a kind of pacey, walk-the-floor wait more fitting to a hospital corridor. Difficult to focus, I just want her to arrive so I can hold her and read her school diary and hope she had a good day. That's my ten minutes a day when I turn into Forest Gump. Of course Forest sat on that wall all day waiting, and what with me not starring in my own emotionally over wrought hollywood movie, I have to actually go out and do stuff during the day when Elin isn't with work! But to Elin, who leaves my arms at 8:00 am and returns neatly back to my arms at 3:30 pm, having no comprehension of what happens in my world in-between, perhaps her Mummy is just like Forest Gump. Waiting on a wall all day until she gets home.

Sunday, 10 March 2013

Our home is our castle

Paul asked me ages ago what I wanted to do today 9Mothers Day). I had to answer, nothing. I don't want to make plans or book a meal out. You see, pretty often our plans have to change depending on how Elin is that day and on special occasions this can serve to send me into a spiral of feeling sorry for myself (something I abhor) . It seemed easier to plan nothing and then there could be no room for disappointment, though I hate that this also serves to make me look like I'm giving in to the condition. Turns out, I was right. Totally justified in not going anywhere to celebrate Mother's day, Elin would almost deifintely not have been up for it. Saturday brought a very distressed and upset little girl, needing rescue medication before bed. Unsure what is bothering her. I prayed that Sunday would bring a better day for her, and it did, but I still wouldn't have fancied our chances keeping her peaceful while we lugged her around in the bitter cold and snow flurries. Yay me. I was right. We had aromatherapy at home and painted our nails and baked a cake, and that was my Mother's Day. Didn't have to watch her undergoing violent shakes and muscle spasms in the buggy. Didn't have to listen to her screaming in the car seat. Didn't have to struggle to eat a meal in a restaurant with her twisting on my knee because she is unable to sit in a chair. Didn't have to see the other Mummy's and their toddlers chatting away happily to them and wonder sub consciously for the millionth time what happened to my baby and who chose this path for us(and maybe this is the biggest reason of all why I didn't want to go out today. Not proud to admit it, but no point in writing a blog unless it is an honest one!) Our home is our castle, me and my girl. Sometimes, it's just all you need. Four familiar walls and zero stress. Perfick. Happy Mother's Day to all those SEN Mum's out there struggling with more than you can ever realise, enjoying more than you can ever know.
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