Fun in the Sun

It's been a wonderful, sunny weekend. One of those weekends where, even though you are in a back garden in Wrexham, if you squint a bit and use your imagination you could almost be abroad. Almost. I love weekends like these (who doesn't?) but, in the past they have been a little tricky. You see, Elin's Daddy and I are sun worshippers. We love the sun, we used to love going on holiday and lying by a pool all week. But Elin does not follow in our footsteps. Her condition makes it difficult for her to regulate her own body temperature, so she can become quite hot and bothered. Added to this, she has terrible eczema. This, we are assured, is not part of her condition. Just bad luck (go figure!). Her eczema is sun-sensitive so as soon as the summer comes poor Elin breaks out in an angry, red rash. The cream we are currently using goes some way to combatting this and for the first time in the history of Elin, she has been out with us all weekend in our beautiful garden and loved every second. This has been aided by our recent purchase- a double-sun lounger with giant shade, which means Elin can lie outside and have plenty of room to stretch out, without being bitten by bugs, as she is raised off the floor, or being hit by the sun's strong rays. Brilliant. Oh- and there was a small matter of a paddling pool to add to the fun, too! Quite difficult trying to keep Elin supported in order for her to enjoy a paddling pool, but worth the muscle cramp in my legs to watch her enjoy splashing around like all the other kids in Britain this weekend. "Throw those curtains wide, one day like this a year will see me right" (Elbow) x

A must read

This article helped me so much when I read a few years ago. Life with Elin at the time was transcending from the chaotic and bewildering to the absolute norm. Everything had begun to feel easier, less painful and I was starting to make sense of our 'new world', the shock and emotionial turmoil which had ensued from Elin's diagnosis at birth slowly but surely ebbing away. When I first read this it was like the author of the article had got inside my head and was able to express my thoughts and feelings about raising Elin, far more articulately than I could! We subsequently bought her two children's books, 'Just Because' and 'Sometimes' , which feature her own profoundly disabled daughter and make no concessions towards this fact, simply portray her as she is. I absolutely love the books and have bought copies for children of family friends, to help them understand that there are other children like Elin around and that, in their own way, they are simply perfect as they are. http://www.independent.co.uk/life-style/health-and-families/features/profoundly-disabled-we-wouldnt-have-her-any-other-way-2072088.html

Baby Dot pictures :-) x x

Some half-term pictures. Couldn't resist including the last one after all- school plaits :-)

Daddy Drake with the rucksack/sling as detailed in previous post "Life's A Beach" :-)

Grief

Recently I discovered the sad news that one of Elin's little classmates had passed away before Easter. She was a beautiful girl who, it appeared to me whenever I was in her presence, seemed to emit a kind of calm and gentle aura. Her wonderfully pretty, saucer like eyes sucked you into her world and made you not want to tear your own eyes away from her unassuming, lovely gaze. I had spoken to her mother at the party of a fellow classmate once. We had the conversation that I have with so many parents, just discussing day to day cares, medical history, the impact of disability on the rest of the family, that sort of thing (the family have an elder daughter too). She was an ordinary Mum like me who had been dragged into this confusing and difficult world and was doing everything she could to ensure her daughters had happy and fulfilling lives. Just like every other Mum at Elin's school is wont to do, I would imagine. But now she has lost one of her two girls. The grief of this hits me like a freight train. I don't mean to sound self indulgent- what right have I to be upset? I still have my daughter. But it's the knowledge of absolutely everything that family have been through during their little girls seven short years on this earth. I hardly know them. But I know everything they have been through because we have been through it, too. The fights for help for her, the hospital stays, the worry, the equipment, the medication, the home adaptions you never believed you'd have to have, the blessing of every birthday, the sorrow of what could have been. I know this Mum, I know how she has felt and who she is. Because I am her, too. And how can I fail to grieve for this family and this beautiful girl with her eyes like perfect pools of water? Because I am her Mum, and she is Elin. And in the realms of 'our world', in the family of parents we have become, bound by sorrow and despair and great joy that no 'ordinary' parent could ever understand, we are all one person, one child, one family. We will never forget you beautiful girl and the family you leave behind. I hope that, wherever you are those beautiful eyes are seeing a world you could not grasp in life and that you sing and dance and play as you always so richly deserved. God bless.

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 :-)

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 me...like 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.