Jolly-days

Just back from our holidays! We go, every year now, to Porthmadog which we absolutely love. I'm not going to lie, sometimes it hurts that we can't go abroad. I know people do, of course, with kids like Elin. With meticulous planning, the right medical insurance and travel company, it is possible. But it's not for us. I am a nervous traveller at the best of times so the thought of travelling a few thousand miles with Elin (who as you know hates travelling anywhere altogether) leaves me a bit clammy to say the least. What if our luggage got lost? What if her medication got broken or lost? How would I even begin to pack when we needed an extra trailer just to get to the North Wales coast for all her equipment/feeds etc? I sometimes feel I should be braver and just take the bull by the horns, but how much would I be able to relax? How much of a holiday would it be? Also, Paul points out rather sensibly, we should always ask ourselves 'What's in it for Elin?' in terms of going abroad, probably not much. She does not react well to heat and the sun marks her skin as well as setting off her eczema. It would probably all be too tiring and confusing for her, since she is so reliant sensory-wise on her environment. So it's not to be, but since Paul and I always went abroad before she was born and loved it, it is something that I daydream about now and then (one of many things!) However, alongside this is our love of the coast, and in particular Porthmadog. Luckily, Elin shares our love (it must be in her blood!) and it seems a rainy week in North Wales is her idea of heaven. She was such a good girl whilst we were away, calm and happy and even tolerating her chair now and then (we used the good old pouch for places the chair could not get to, or when she was fed up). She loves the caravan, I think it must be something to do with the sounds and how everything in a caravan is amplified. She loved spending an intensive week with Caitlin and her best mate Lydia (Elin revels in their teenage chatter and banter. I think she wants to be a teenager herself!) So a good week was had by all. It may not be everyone's idea  of heaven, but give us a caravan on Greenacres and heaven is definitely where we are :-)

In the caravan with Mummy

 Which way's the beach then???

 I want to be a teenager, too!

 Watching ribbons on the beach :-)

 Wig-wam fun!

 It's so funny being in Daddy's pouch!!

Portmeirion

 Brits on holiday!

 We are not leaving the beach!

A brief encounter..

The other day we took Elin to a popular local spot for a day out. It was a sunny day and teeming with people enjoying the weather and the start of the school holidays. We decided to abandon Elin's chair and take her down onto the rocks on the river where scores of families were already enjoying themselves. It meant carrying her, which is getting tricky, but it was worth maneuvering the deep stone steps to sit on the rocks with her and watch her listening to the flow of the river and the splashes of the other kids as they paddled in and out. I had already noticed a few people watching our descent onto the rocks, the unstrapping from the chair, the shifting Elin's weight about on my hip whilst trying not to catch her leg splints. I wondered fleetingly what these people are thinking, do they wonder how old she is, what is wrong? Mostly people just smile, on this occasion we got the offer of some help with her chair which was lovely. Anyway, in terms of people looking (or is it noticing?) I find elderly people and children are the most astute. Nothing much gets past them. So it wasn't long, once settled on the rocks and enjoying the sun, before I saw a little girl. Not looking at us, but staring. Transfixed even. Trying, I assumed to work out why Elin was being cradled like a baby and holding herself like one too but was obviously much, much older. I didn't mind, I really didn't. There is never any malice or ignorance in a child's stare, just interest. Anyway I carried on talking to Elin and Paul and forgot about the girl and her big brown inquisitive eyes. However pretty soon I noticed she was approaching us, with her Mum. Pretty unusual. People, though friendly, seldom actually speak to us (almost as if they are too frightened of somehow inadvertently causing offence. In contrast to this, I, on the other hand will speak to anyone who will listen!). The Mum explained that she had noticed that the little girl, who was six, was staring at Elin. She said that she is teaching her never to stare, but that if you find someone or something interesting or you want to find out about them, then you should just go and say hello. So the little girl said hello (still serious, thoughtful) and I told her a bit about Elin, and why she was wearing funny splints on her legs and that she was smiling because she could hear the other children playing in the river. The little girl nodded a lot. I had a little chat with the Mum then they were ready to be on their way. Before they left us though, I thanked her and told her I wished everyone had the same attitude as she did and the courage to ask about what they didn't understand, even if there is a fear of being rebuffed. So thank you little girl and your Mummy for being brave enough to say hello to us. Would I have approached me had I been that Mum and she been me in a parallel universe? The truth is I have no idea. I wouldn't know then what I know now. My life would be totally different. But I certainly hope I would and would encourage anyone reading this blog to do the same. You never know, it might just make someone's day :-)

Our Day Out

Well Elin has had a fab day out today with her little buddy Megan! We have been to Park Hall Farm before but today was particularly noteworthy due to the length of time we spent there without Elin getting too upset or stressed with the buggy situation. We have been creating 'buggy situations' daily, even if we don't need to go anywhere and some of these have been successful outings, others have not (frustrating as ever). Now don't get me wrong, she didn't love the buggy today, but with various distractions she wasn't in and out anywhere near as much as she could have been. I love Park Hall because everything is close together and there are plenty of places to sit (pitt-stops where I can get Elin out of her chair if needs be) so we don't need to stress her out too much. Today, despite the warm weather, she excelled herself. In fact we were there from 10:30 until 4:30- unheard of! So proud of her! How wonderful to be able to be 'out' and enjoying ordinary school holiday family activities without Elin becoming too overwrought. Determined to continue daily 'buggy activities' so as not to undo all the hard work Elin, her teachers at school and her physio's have built up during term time. So far, so...not bad :-) :-) 

Feeling breezy....

Just a little photo for a certain someone who I know will be checking this blog wondering if Elin is having a good Summer :-). Today we picnicked at Ty Mawr with friends and Elin decided she loved roundabouts :-) This is one of my favourite photo's ever because she was laughing like mad when it was taken, loving the wind in her hair. We will have to put a roundabout on her Christmas list. Happy Hols everyone!

Elin's party- Just a couple of snaps :-)

Five years ago on Monday......

We simply had no idea if Elin would live. Each 24 hours was precious and miraculous.  You know what? Each 24 hours is still precious and miraculous.  I could not look at these photo's for the longest time, because I remember what I was thinking when they were taken and I could not go back there, in my head. But now they give me joy because on Monday Elin turns 5 and when we took these photo's we had no idea if the day would come. 5 was the 'age' they gave us. She may not make the next 48 hours, even if she does she may be so poorly she might not live to see her 5th birthday. Well, she did.  And she did it in style. So, so much to celebrate. Thank god for you, Elin. We love you with all our hearts. Happy Birthday.

We already had our miracle...

I suppose you have to remember that things were different 50 years ago. Elin would not have survived. It's only medical advances in about the last 15-20 years that have meant she is still with us today. 50 plus years ago, even 30 years ago, there simply would not have been the technology or advances in medicine to save her initially when she was born and then keep her alive. There were, consequently, a lot less severely disabled children around. If any children similar to Elin did make it through, parents were actively encouraged to 'give them up' or place them in homes where they could be cared for by medical staff. So all things considered you have to realise lots of elderly people simply aren't used to dealing with children like Elin. It's just not in their realms of comprehension. Not all elderly people are like this of course, just some. They love Elin, of course they do, dote on her in fact. But they constantly ask the same questions, hoping for a different answer. Will she ever eat orally? Will she speak do you think? Can't you take her abroad to get her 'fixed'? No. My answers are always the same, but they take no discouragement, especially if they have seen something on the news or in the paper about a miracle story (inevitably a child with a completely different condition or prognosis to Elin, but this seems not to matter) . How can they realise how these questions pain me, not in themselves but in there continual repetition? My answers will never change. There is no 'cure'. The person in the village who had a car crash and was told they would never walk again and is now absolutely fine with no issues bares no resemblance to our story. It cannot happen for Elin. The miracle has already happened, because she is still here and she is still breathing, that was our miracle and I'm pretty sure we won't get dealt another one. It's not like I don't want to be hopeful, there's plenty to be hopeful about, but within the realms of what we know to be possible. I can even learn to stretch the boundaries of what might be possible but I cannot spend my life wishing for the impossible. Not only is there simply nothing worse than false hope, but it feels like a betrayal. It's hard to explain. I suppose ultimately I want everyone to just finally accept Elin for who she is, and that the prognosis cannot change, but the way we view it can. It's a hard but necessary lesson to learn. It's to continually wish things were different, or hope a doctor in America somewhere can wave his magic wand over her that feels like the betrayal, it's like saying you want her to change. Of course I wish things had been different at the start. Of course I wish she had the life she was meant to have and that she deserves, but until someone invents the Tardis for real or can turn the clock back five years and change what happened the day she was born I will stick with counting my lucky stars every single day for what we have got, not what we haven't. “We must let go of the life we had planned so as to have the life that is waiting for us”-Joseph Campbell