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.

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.

Achy breaky heart

My head aches. My back aches. My brain aches. My eyes ache (with tears). My heart aches. Sometimes, that's what living with cerebral palsy is like. Achy.

My Elin forever

Sometimes it hits you, when you least expect it and you are blindsided. Not by what has happened but by what will never happen. How mostly, Elin will remain a constant from now until forever. Largely unchanging, at least to the outside eye. Bigger, of course. More aware, certainly. Slightly more able even. But mostly just the same, just Elin as she is, year after year. Happy, beautiful, funny, loving, joyful. But the same. Forever. As her Mummy there is unbearable heartache in this. But also, conversely, great and immense comfort.