Chronic Sorrow

A very insightful and interesting read on the grief process of 'living loss'. Chronic sorrow by Rose Harwood. ttp://caretosharemagazine.wordpress.com/2013/11/15/chronic-sorrow-by-rose-harwood/

Throw back Friday

Oops a day late! This week's throw-back Friday pic is one from the day we got Elin's new buggy over two years ago, in celebration of the fact that we will soon be getting rid of it! Notice the blocks under her feet because she was too small for it at first! Awww!

Precious times..

....are after school, when Paul is still at work and Caitlin isn't home from school yet and it's just "me and my gal". Like it used to be, when she was a tiny baby and I was on Maternity leave and everyone else was at work or school. We can do whatever we like. Listen to some music, dance. Watch 'The Snowman' on DVD. Tell each other our secrets (ok, well maybe that part is just me, but I know she's listening) I can dress Elin up as Mary from the Nativity for a Christmas card photo and she can laugh because she likes the sheet on her head and I can laugh because she looks ridiculous and won't sit still and I can't get the photo anyway. But it doesn't matter, cos it's just us and we don't have to feel daft. Maybe we'll tell Daddy when he get's home and maybe we won't. Maybe we'll tell Caitlin we listened to the new Lily Allen track and loved it, or maybe we won't. When they get home we might just say 'we're fine, how was your day?' and I will look at Elin and know, and she will know too that sometimes, it's just us. Sometimes, I don't want to share her, I want her to be just mine, just for a short time, just the two of us in cahoots. Like it was before she was born and nobody knew her like I did. Me and my baby. Me, and my gal. Always.

The Drakemobile!

The time had come for us to take the step of getting a mobility car. Elin is getting a big girl, and it's hard to lift her in and out of a car seat. I knew I didn't want anything too big to drive so when someone recommended this it seemed like a great idea. Pretty compact, but room in the back for Elin's wheelchair and also up to two other passengers! It's like the Tardis! When the rep brought it in the Summer we loved it, ordered one and hey presto it arrived yesterday. I love it. I can't stress that enough.  I'm not going to get too technical here, I'm a girl and let's face it I know jack about cars . This is silver, it's pretty, it's quite 'gangsta' with the blacked out windows, and it smells of new-car.  That's enough for me. Oh- and when Elin isn't with me it reverts back to being a 'normal' car with three full seats in the back and a boot big enough for me to clean out Tesco Cefn in one fell swoop. Heaven. But would Elin like it? So far, no (of course). Our issues with travelling with Elin are well documented in this blog and if you are a friend of ours then chances are you're sick of hearing about it. I had high hopes that she would be ok in her wheelchair in the back, as Caitlin could sit right next to her and after all she is very used to travelling in this way on the school mini bus. Sadly for whatever reason today's trial run did not go well and had to be abandoned. Elin pulled her usual trick of thrashing around, leaning so far over to the left that she nearly garotted herself on her harness and sticking her feet out at strange angles :-( We abandoned the run in the interests of safety almost immediately. However, it's worth pointing out that I feel the fault lies with the chair, which is no longer fit for purpose, than the car. It simply cannot support Elin or hold her in a safe position. Luckily we are due a new wheelchair as soon as the last two 'fittings' have been completed in January, it's being made-to-measure, so even if her behaviour continues hopefully the chair will be able to support/accommodate her and generally keep her safe to a much better degree than the current model. In the meantime Elin's car seat will have to go back into the back seat and her wheelchair resigned to the boot, as she simply cannot travel like that particularly if there is nobody in the back with her. It's so hard to explain to people who have never witnessed her seating issues. She simply sometimes cannot tolerate it, she pushes herself into terrible postural positions and flings her arms out etc, quite often 'jumping' up and down as if she is trying to escape the chair. Not good when she is surrounded by metal. Hugely distressing for her and for us too.  So, when the new chair arrives, coated in memory foam and made to measure for Elin specifically, we are hoping that simple trips out in the car become enjoyable, as opposed to traumatic. Such a simple thing for everyone else, such a huge, huge hope for us that could completely change our experiences of getting out and about as a family for the better. Fingers crossed.

Not what we want!! This was Elin's position in her chair on returning home. Pretty bad. The journey lasted all of three minutes as we simply could not leave her like this, even though Caitlin was next to her it didn't help. This photo is for any readers who have never seen Elin having a 'bad travel day'. We need that new Wheelchair, pronto!

Throw back Friday..

I chose this for today's throw-back Friday pic because it was taken on this day in 2010!! I can hardly believe it was three years ago. This is Elin in her old stander, or 'monkey frame' which she loved, but outgrew. You can see how comfortable she used to be in it- she fell asleep! Too cute. Happy weekend folks x

Story time

Every evening before bed Paul tells Elin a story whilst I'm getting her meds together. (He also likes to play his ukelele sometimes and make up songs for her but I won't subject you to one of those!!) Elin is impressing us every day with her ability to focus for longer periods and really listen brilliantly. You know when she is listening because her whole body goes still and you can see it in her eyes. I filmed this today after hearing Elin's giggles from the other room. She is clearly a fan of 'Goldilocks' :-)

Throw-back Friday

I am thinking I might  pinch an Instagram craze here of posting old pictures  on a weekly basis. 'Throw-back Thursday' or TBT as it's known on Instagram might have to become Throw-back Friday for  the sake of my blog as I have more time on a Friday to search! Anyway, this photo marks my first offering. Happy TBF folks!

This has been stuck to our fridge since early 2009 when it was taken. As it gets gradually grubbier and seems to have inexplicably avoided my school laminator, I thought I would scan it and save it in cyber space before it get's completely ruined. This was the first time we visited Hope House, a local children's hospice and amazing resource for parents of children with life limiting (actually hate that phrase to be honest) illnesses or conditions. We don't actually visit anymore since sadly they stopped being able to provide regular hydro therapy sessions, as for us family support  means currently we rarely need overnight care or respite for Elin.  However, that doesn't mean we were not able to appreciate the AMAZING work this hospice does and how wonderful the staff are. We know kids that have been going for years- it truly can be a second home. Everyone there is incredible and really puts family's at ease at the most difficult times in their lives. What a great thing to have access to these places as an option for parents in our situation in this country. The parents of children like this  in America for example  are not offered the same service, it doesn't exist. To think it relies totally on charitable donations blows my mind. In 2009, not long after this picture was taken, my work colleagues said they wanted to raise some money for Elin. We immediately nominated Hope House on her behalf, such was the extent of the impact the place had on us. In the end we raised £3,000 for Hope House by climbing Snowdon but recently I've been thinking it's time for a fresh challenge and I know my amazingly supportive colleagues are up for it again. Not sure what but Im thinking if Cheryl Cole can do Kiliminjaro then...........?????  :-)