Throw-back Friday

 This weekend I am callously abandoning Elin and going to London. Last weekend, Paul went to London to visit family and this weekend I am going to visit my oldest friend in the world. So really, neither of us needs to feel guilty because Elin has simply had two lovely weekends of concentrated quality time with both of us. Just not together. (Am I trying to convince you, or myself???)
Anyway Katie and I met one sunny day in September in 1984 wearing equally stifling uniforms and probably equally anxious, wondering what adventures lay ahead. It was the first day of school. It turns out lots of adventures lay ahead, as we have been friends ever since. We have had a lot of fun in the past 29 years and just before I got pregnant with Elin myself and our other buddy, Jenny (the wonderful person who is forcing me into my first holiday abroad in July- see previous blog post http://cerebralpalsyjourney.blogspot.co.uk/2014/05/leaving-on-jet-plane.html) even travelled out to South Korea to visit her as she taught English out there.  The three of us then flew out to Japan and we had the time of our lives. Just over nine months after that I had Elin and the carefree holiday fun was about as further a memory as I could have had as the world fell down around us. Well, Katie was there for all of it but more recently has been living in the big city as a fabulous RE teacher in a secondary school and shamefully I still have not been to see her! So, the weekend has finally arrived. I'm off to London, baby!! Jenny is coming too so you could say it will be like a mini version of our Korean holiday seven years ago (although hopefully without the diarrhoea- yeah, don't ask)
I have blogged before about how lucky I am to have been blessed with so much support in my life, not just family but I have so many wonderful friends, some of them work colleagues, some university pals dotted around the country, some school friends. Some that I have had since we were riding tricycles and still having an afternoon nap. Katie is one of the latter. Like all my friends, she thinks the world of Elin and has been there for every step of her little life. I really, really don't know what I would do without my friends. Once again I just count myself incredibly lucky. I normally don't like trite hallmark-style quotes, but this one is so poignant because it's so true. "Real friends are like stars. You don't always see them, but you always know that they are there"
So have a good one folks, I know I will, especially given what a wonderful week Elin has had. nothing but smiles so hopefully a good girl for Daddy! Happy Weekend x

On my lawn in 1987 both modelling Pippa Dee's latest range (sorry Katie)

2014 in a taxi modelling the 'tipsy selfie' trend :-)

London here I come!

xxx

Tea Time

Elin has had a lovely weekend. The weather has been amazing and though I always worry this will affect her adversely, so far she hasn't been too bad! This weekend was a very special person's birthday- Elin's Nanny! Without my Mum we would find it very hard to run our daily lives.  What with the demands of appointments/general care for Elin, being there for Caitlin after school or whenever she needs us, trying to maintain some sort of social life (albeit a rather skeletal one sometimes!) and both of us working too, it can sometimes be a logistical nightmare not to mention exhausting. Paul works full time and though I'm only part time anyone involved in teaching will tell you there's really no such thing! We have made it work for us, retained a normality after Elin was born that we instinctively knew was so important (and these familiar routines have proved to be our saviour, in emotional terms, on more occasions than I can count) but only because we had the help of my Mum. We are lucky to have a lot of support in friends and family but it's Mum that we couldn't really do without! She is there to meet the school bus if we have meetings etc after work, babysits when we need to go out or go and see one of Caitlin play's or concerts (four coming up in the next two weeks! For one of us to have to miss them would be so upsetting), supports one or the other of us if the other one is away for the weekend and generally just runs around for us. The handful of times we have been away for the night on our own since Elin was born was able to happen because of my Mum. Normal Nanny duties of course extend in our case to not only spoiling Elin rotten and having lots of cuddles and fun but also learning how to manoeuvre Elin's feeding, set up her milk pump, identify a seizure, measure out and administer her 13 daily medications, do some pretty heavy lifting and also give potentially life-saving rescue medication for nasty seizures should the situation arise. Mum does all this without complaint or flapping (WHILST working full time as a Nursery Nurse in the local primary school herself I might add) and basically plans her own calendar around what we need. So on special occasions such as her birthday I know Elin feels desperate to spoil her and show her how much we care :-) This year amongst other things, we took Mum out for tea. Not dinner-type-tea, but literally an old-fashioned pot of tea. There is a wonderful vintage -inspired tea room and gardens situated alongside a local beauty spot next to the Froncysyllte canal, which was just perfect for today. Believe it or not, Elin has already visited this amazing little find, with her equally amazing school on a little visit once, so she already knew her way around :-) Thanks to the special lady who reminded me about it- you know who you are! Anyway it was beautiful, Elin was good as gold and able to sit nicely - before we got there we took her to a park with an 'Able-about' (roundabout with space for her chair) which was so lovely- and my Mum said that Elin being so happy was the best present she could have had (of course!). So happy birthday Mum/Nanny. I see you every time I look at Elin (it's uncanny!) and if I can be half the Mum to her that you have been to me then Elin is one lucky little girl. We love you. Oh and sometimes I'm not very good at saying a proper thank you for all you do. It's not because I don't want to, or because I don't feel grateful. It's because I don't know what to say, unusual for me I know! I can't articulate it- it's too much (so I'm cheating now, with this blog, instead) Words will just never be enough for the life you gave us since the day we were born and in particular the courage, bravery and mettle you have shown, and that I always knew you had, since Elin was born. We simply could not have done it without you. Thank you :-)

 If you are local and this sounds like your 'cup of tea' here is more information about this gorgeous family-run tea room and gardens (which also has a disabled toilet facility, important to some people like us!)......

http://www.tripadvisor.co.uk/Restaurant_Review-g2082843-d4288406-Reviews-Fron_House_Tea_Room_Garden-Froncysyllte_Wrexham_County_North_Wales_Wales.html

xxx

Throw back Friday

I'm cheating this week because this is a combined post. This week's throwback is from Elin's Sports Day last year, because this years Sports Day was today and so I thought blog fans would want to see a couple of pics :-)
Elin's Sports Day is amazing. I can't remember if I have blogged about this before or not so apologies if I'm covering old ground. The children in Elin's school join in with the mainstream part of the school, as they do with several other things, and the atmosphere on sports Day is always great.  The children are mixed up and split into several teams, which are always various countries. It's lovely to see the children together and particularly to see Elin and her friends included so wholly in the event. Obviously when you have a lot of children in chairs, it could phase some schools - particularly in such a physically-driven activity. Not Elin's school. The children are simply included completely and even the obstacle race proves to be no problem, as little friends from mainstream school are encouraged to race with Elin and her classmates, imaginatively 'helping' to overcome the obstacles for them (basically flinging the obstacles out of the way!). Of course, special mention has to go to the staff of Elin's school, who have to *literally* do the leg work, running in the heat with chairs containing not only fairly heavy kids but sometimes oxygen cylinders and suction machines too! This is yet another testament to their love and dedication towards the children, as I know plenty of staff in mainstream schools that would refuse to get up and do anything in front of groups of parents, citing embarrassment,  let alone leg it like a maniac down a race track pushing a wheelchair on the hottest day of the year.
This was Elin's third Sports Day. I was so nervous before her first one, I remember I thought I might feel a little sad. I thought it would be too hard, seeing Elin in her chair amongst the able-bodied children. I thought it might feel like she stuck out like a sore thumb and there would be parents standing around feeling sorry for her. I couldn't have been more wrong, I soon realised. She was just simply one of them, as were all her gorgeous little friends. I couldn't fail, on that day and every year since to feel anything but happy, because once again we are reminded how lucky Elin is to be part of a school whose motto on Sports Day is "It's not the taking part, it's the winning that counts"!! Tongue in cheek of course, but a refreshing refusal to patronise these children as can so often be, albeit well meaningly, the case. Oh- if you are wondering- Elin won her three races..or technically Lyn, her amazing key worker, did! Go team France!! (But believe me, every single child and member of staff there today deserves a medal in my opinion.) Allez, Allez, Allez!!!

Sports Day last year. Team Egypt.

This year, team France! Hmm those legs seem to have grown quite a bit in 12 months!

Go on Elin! 

Absolutely shattered after lots of heat and a busy day! But so pleased with '1st' place! :-)

xxxx

Prom

Ok, you got me. This is just a blatant excuse to show you all a couple of pictures of Caitlin on her way to Prom, because she looks amazing. But it is kind of relevant, because with there being no show without punch, Elin was there to wish her a wonderful night :-) I find the concept of Prom a bit strange, it was something I used to read about in my 'Sweet Valley High' books and my only visual frame of reference for the American tradition of 'Prom', until a couple of years ago when suddenly it became en vogue for UK teenagers too, was that scene in 'Grease' where Frenchie looks like a Pineapple.  It seemed such a grown up and glamorous event, so massively unlike the kind of sad little disco in the school hall we had on our last day of Year 11 (DURING school time I might add), we would have given anything for a 'Prom'. So my feelings about it are kind of wedged between envy and bemusement (especially given what some girls are apparently spending on this one night!). However, when we saw Caitlin today preparing to leave for Prom, it seemed kind of right. Leaving secondary school is a huge moment and it seems nice to mark this rite of passage with a little more formal pomp and ceremony than the usual party round someone's house. Caitlin went to Prom with her best friend in the whole world, Dafydd, who has lived on the same lane as her since they were both born, which was the sweetest thing ever and actually a tad emotional. They both looked fantastic. I know Elin could not possibly have grasped anything about Prom or why everyone was standing around taking photographs, but I do know that she has started to become more in tune with senses of 'occasion', or events that are a bit out of the ordinary. She was certainly very pleased to see her adored big sister looking like a Princess! Of course, the tiny nagging minuscule dark shadow in my brain could not help but think today that Prom is another milestone that Elin will miss out on, another treasured moment between parents and a child that will mean nothing in the scheme of her future, and mine as a Mum. But I know there will be so many joyous moments exclusive to Elin and to us, that celebrating will always be part of her life, just not in the same way as everybody else- and maybe that's no bad thing. There won't be a  Prom for Elin, but there will be a lifetime of being our Princess instead. Perhaps it's not too bad a swap. Enjoy your evening blog fans!

Caitlin and Dafydd

Elin waving her big sis off to Prom (and Caitlin wearing the highest high heels ever!!)

xxxxxxxx

Father's Day

I've been writing this blog since 2009 and have covered five Father's Days already. It's hard to come up with new ways to explain why Elin simply could not have wished for a better Daddy in the world. So, without quite knowing what I could say that was different this year I started to think about what Elin might say to Paul, if she could. I think she would say this:

Because of you.

My ears hear loud raucous laughter, music, daft songs that you make up about me, and the words 'I love you' a million times over. Every single day.
My eyes see bright and happy things and silly dancing and other things to make me smile. Every single day.
My mouth feels a thousand kisses and, when Mum's not looking, tastes ice cream and yummy things, it's our secret. I love it, it makes you laugh with me.  Every single day.
My nose gets 'beeped' to make me grin and smells things like the banana you peel just because I like it. Every single day.
My hands are held and squeezed, over and over, when I'm upset. And you help me to touch things, anything, everything. My favourite is when I feel the pages of my bedtime story with you. Every single day.
My arms are wrapped around your neck whilst you carry me, to wherever in the house you are going, because you want me to come too and can't bear to leave me on my own. Every single day.
My legs are splinted and strapped because you are worried about the turns in my feet. but you talk and talk and talk while you do it, in case I don't like it, because you cannot be sure. Every single day.
My feet are tickled and stroked, especially at bed time when there are no socks. You squish them and call them trotters and I giggle. Every single day.
My body is cuddled to bed and I lie by the nightlight you fixed on the wall, because you worry I might be scared of the dark and I listen as you talk me to sleep. Every single day.
My ears hear your heart when I wake in the night and have to lie with my head on your chest, before I will trust sleep to envelop me again. Not every single day. But sometimes and when I'm poorly. Because I just want you.

How lucky am I to have such love. That all of these things and much more happen to me.
Every single day.
Because of you.
I love you, Daddy.

For my part, as Elin's Mummy, don't even get me started on how I feel about how lucky we all are to have Paul in our lives. I've said it before, public display's of affection aren't really my bag, but if they were, I could write pages on how the girls are the most fortunate girls in the universe to have him as their Dad. I am pretty lucky too, to have him as a husband and I never forget it -just don't tell him that ok? :-)

Well blog reader I hope your day was as good as ours, a lovely lunch out (Elin sat in her chair!) followed by a gorgeous stroll on the Horseshoe Pass. Perfect. Happy Father's Day, folks!

Throw-back Friday

Two years ago our garden was lovely, if a little bare. Since then Paul has worked incredibly hard making a beautiful environment for us to spend our 'downtime' in and Elin for one loves it. We now have a gorgeous bamboo fence with twinkling lights, decking and woven furniture, a brick barbecue, a shaded double-sunbed for Elin and even a cherry tree (amongst other lovely foliage!) Also- Caitlin gave up her fun-but giant- grass killing trampoline :-) So this was taken in 2012 before all the lovely adjustments to our peaceful haven, which I will try to get a decent picture of very soon. Hope the weather this weekend is as gorgeous as it was here! Happy Friday everyone!

These Toms aren't made for walking..

Wow what an achievement in our little world today. As Paul went off up the Panorama on his mountain bike, I figured I would take Elin out in her chair. I thought we could walk towards the village and see how far we got. Elin happily listened to some tunes on my iPhone and I was majorly impressed to get to the end of the road.There was no need to stop and the sun was out so in a Forest Gump kind of way, we just kept walkin'. We got ALL the way to my mum's house on the far side of the village- amazing! Elin was chuffed to see Nanny and vice versa so we stayed for some refreshments and then pushed our luck by walking all the way back home again. This is about a 4 mile round trip!!! Elin did nothing but smile. Perhaps the second set of antibiotics is agreeing with her after all? We haven't heard from Children's Ward so are assuming that the bacteria infection is nothing to worry about and the current antibiotics are good enough to fight it. My only complaint from our lovely little journey is that next time I'll have more faith and put on some decent shoes just in case- my Toms might be ok for hanging around in but walking shoes they aint *ouch*. We treated ourselves to a little sunbathe when we got home- and would like to do some more of it to be honest! Here's hoping!

The way home

Sunbathing selfie :-)

xxx

Love is in the air...

So, Elin is sooooo much better in herself since she started the new round of antibiotics. Unfortunately, her ear is not looking any better. Children's Ward called today and said that they are pretty sure the swabs they took are growing some sort of bacteria. It's going to be checked again tomorrow but the likelihood is we will have to go back tomorrow and change to a more specific form of antibiotics in order to sort it out. Happily, the nasty infection doesn't seem to be bothering her in the slightest. That's the science bit over with. The truly exciting news from today though, is....Elin has a date!!! Yup! She was AMAZING at sitting today so we went to town and there we were, doing a bit of shopping when we ran into none other than Elin's little boyfriend from school! She was delighted to see him and he looked as gorgeous as ever- it's obvious why she is so fond of him :-) Since they also ran into one another on Christmas Eve in Children's Ward, we are starting to wonder if they are arranging these render-vouz themselves??? !!! Very sneaky. Anyhoo, little Llew (yes, Elin's boyfriend has the cutest name ever, Llew means 'Lion' in Welsh and he truly is a little Lion) got his lovely Mummy to ask if Elin could attend her 40th birthday party in July- as his date!!!! Of course, Elin was made up and undoubtedly already planning her outfit ;-) It's so nice to meet other parents, it's not alway easy to get acquainted with people who know what you're going through. Not bad going though Elin, fair play- to get your first date at not even six years old! Amazing little Llew has his own website if anyone would like to check it out, he is absolutely adorable:

llewsbigadventure.com

In the meantime, if anyone wants to see the little lovebirds....how could I fail to get a snap...

Flirting in Debenhams!

Oh and Elin doesn't mind the rain either apparently, which is lucky at the moment! In fact, she finds it pretty funny....

Happy Saturday folks!

xxx

Throw-back Friday

Wow, get me- two posts in one night! I couldn't ignore Throw-Back Friday! This photo has Elin in it, but you can't see her. Because its the beginning of 2008 and I am 20 weeks pregnant. I chose this today, because so many of my close friends and family are having babies and I can't help but think back to when I was expecting Elin. It's joyous, and wonderful and exciting and I loved it. It took four years of tests, operations, investigations and painful medical intervention and treatment to reach my 20 week scan. I felt lucky every single day of the 40 weeks I carried Elin. Completely, madly, crazily lucky. As i watch my friends and family members surpass the 20 weeks point, go on and on, and eventually give birth to their beautiful, special babies I know their joy tenfold but I feel pain too, a sadness I can't explain and am actually quite ashamed of. Because I remember waiting for Elin to come, the expectation and the plans and the excitement and the naivety. Convinced she was a boy, hoping for a girl. I remember, like it was yesterday- not six years ago, and I feel a kind of jealousy.  I want it again, and  I know this can never happen. That Elin being conceived was a miracle. But that her survival after her birth was even more so. So there's me, who never took a single day of healthy pregnancy for granted, and thought that my challenge in being a Mum, and the most difficult bit, was over on the 22nd July 2008. Of course, I had no idea it was only just beginning. But the nine months I spent feeling lucky every single day have simply transformed into six years of feeling lucky every single day. Because I am. After all, how could I look at Elin and not feel lucky? Her very existence makes us the luckiest parents alive  :-)

xxxx

Road to recovery....

Well, today Elin managed a full day back at school! Not bad considering we were on Children's Ward until 10:00 last night! We left with yet another course of antibiotics, as it appears she still has a skin infection in the cartilage of her right ear, and are hoping they don't affect her adversely again! So back to school she went this morning as she seemed so much better and had a great night's sleep. She had a fairly good day, though not too good travelling on the bus or sitting in her class chair (no surprises there- as soon as she isn't quite herself, seating is the first thing she struggles with!). However, despite being very agitated and hot all the way home, as soon as the bus stopped and the bus driver was busy lowering the ramp ready for her to come off, she started grinning like crazy when she heard my voice, and laughing. This was quite a big thing given how worked up she was. This was a wonderful moment for me and proof again of how much her awareness in general is improving. My delight was compounded by the fact that Elin was sporting the most beautiful hair 'do,  which one of the staff at school had so kindly done for her. I really need lessons on doing little girl's hair! She looked absolutely gorgeous and carried on with the smiles until bedtime. This was so lovely for us to see after so many days of her feeling poorly and basically sleeping. I will leave you with some photo's to enjoy, have a good weekend blog fans and keep your fingers crossed that Elin just continues to improve now!

Sleeping Beauty

LOTS of sleeping over the past few days for Elin! Sleeping herself better, hopefully. We have an appointment with her consultant this afternoon so fingers crossed she may have some ideas!

xxxxx

I'm melting...

A quick update on Elin- she's still poorly! She is no worse, but no better and a trip to the Doctor has confirmed there is nothing obvious causing her symptoms! He seemed to agree that the antibiotics may have upset her guts, so we'll have to look into another different kind for her in the future as that's two types that have negative effects on her! She was less sleepy today but still retching. We are trying a bit of Yakkult again as we have in the past, in order to try and replenish the good bacteria in her tummy that may have been wiped out by the Antibiotics. I am starting to struggle to see her like this day after day- it's gone on too long! She is so, so helpless. It goes without saying that no Mum wants to see their child poorly but with Elin it seems to be compounded by the fact that I cannot ask her what's wrong or gauge just how bad she is feeling. I do know that she is very brave and that we had a few almost-smiles today, which I am taking as a sign that she is feeling a bit better. However today I had the usual meltdown when Elin has been sick for more than a couple of days- the catalyst for which was the visit to the doctors this afternoon and yet another well-meaning but insensitive old biddy in the waiting room, a very stressed out Elin and some difficulty in shutting the boot with her chair inside! (I'm still familiarising myself with using her chair inside the Drakemobile!) All just a bit stressful and upsetting on top of tiredness and worry :-( I need to be harder, and I am quite hard when she is well but i just can't take seeing her poorly, it breaks my heart.  So a damn good cry was required followed by a glass of red and I don't feel so bad, I know we have been here many times before and will be many times again. I just miss that smile so much! However as soon as it returns lovely bloggers, you will be the first to know, I promise. Let's hope it's not too much longer.