Living with Cerebral Palsy 🍋🍋

Sunday, 22 July 2018

A Perfect 10

I've been thinking long and hard about what to write for Elin's 10th birthday on the blog. It's such a milestone, a full decade, entering into double figures- I've been really stuck for a way I could accurately pay tribute to what it means to us to be safely here. For the first time since I started the blog I don't think I can find a way to describe how I feel. The emotions are too great and too complex and my writing could never do the occasion justice. I will have to keep it simple, then.
We are so, so happy.
The girl who didn't breathe by herself for 10 long days after birth is 10 years old. What more is there to say? As a weird twist of fate, as I was shopping for last minute party bits in the supermarket on Friday, I bumped into the Consultant who had been on duty the day Elin was born. He asked how she was and I was absolutely over the moon to tell him I was buying things for her 10th birthday party this weekend. "Wow" he said. 
That's a perfect choice of word to describe my perfect girl. Elin was the best we've ever seen her on her birthday this weekend. Happy and relaxed and even sitting in her chair for ages outside!! First time ever she has sat in a chair at her party!!! It was the biggest and best yet, with about 60 people including 15 kids squashed into the cottage garden (plus the field next-door which the farmer down the road very kindly let us 'borrow')!!! Also, following 12 hours of torrential downpour on Friday, Saturday didn't have a drop of rain. The sun always shines for Elin. 
The cherry on top of the cake was that this year, we have asked for donations to Wrexham Special Care Baby Unit (Cherish) in place of gifts for Elin (she has so much of what she needs already and we wanted to make a gesture of thanks to the place that saved her life 10 years ago today) . So far our friends, family and acquaintances have between them given Elin over £1,000 to donate to SCBU!!! As the consultant said in the supermarket..WOW.  I can't believe the generosity and we are absolutely humbled by it. The love and support Elin has, even from those who hardly know her, is just incredible. I sometimes think in certain situations I wonder what Elin would say if she could. If she could, in this instance, she would definitely say thank you. Thank you all for the care, love, support and unending kindness.
I was worried I would find this weekend emotional, but aside from the odd tiny wobble it's just been absolutely wonderful. A perfect 10. Just like Elin.
Elin did get SOME presents, I hasten to add...(as if you hadn't guessed)
Favourite moment of party: Bouncy Castle fun!!!!
Favourite present: Wireless, light up headphones that play music of our choice to her :-)
So that's the end of another party, another birthday and the start of a new chapter for Elin as she enters double digits. Thanks to all for your cards, your gifts, your donations, your well wishes, your kind comments and your thoughtfulness. Thanks for continuing to follow this blog and continuing to take such an interest in our miracle girl. We can't wait to see what the next 10 years holds! Happy Birthday, Elin.
"The only time you should ever look back, is to see how far you've come"


Friday, 13 July 2018

A dedication.

Q. When is a 1:1 support worker not just a 1:1 support worker?
A. When she is a Lyn.
Next week Elin's support worker at school, Lyn, is retiring. She has been by Elin's side every single school day from 2012, following an awesome grounding by previous support workers Laura and Louisa and has been way more to Elin than 'just' a 1:1 support.  She has been her second Mummy. I can't imagine Elin going back to school in September without her, or rather I can, but I don't really want to because it just makes me cry. We know the rest of the staff at school are fantastic, there is not one person there who I wouldn't gladly hand Elin over to each morning, so Elin is still going to receive the very best care possible and will continue to thrive and have the most fun ever :-) But wow, are we going to miss Lyn.
If you are reading this and you have children in mainstream school you will think I'm nuts. It's just so impossible to fully articulate what having a good support worker for your child with special needs can mean. Along with the head, senior leaders and class teacher, a dedicated 1:1 support who really knows what they are doing can literally create an entirely different life for your child. This is what has happened for Elin in the years since she started school. Maybe my constant praise of the school might seem over the top if you haven't been in my position. It's just a school after all! Except it isn't. It's Elin's second home, it's the only place she goes to without us. She cannot tell us what kind of a day she's had or what she has done. The trust you have to put into the staff and school as a whole is immeasurable. I can't tell you how hard it would have been when she first started, had we not quickly realised just how good the school actually was. A school, though, is just bricks and mortar after all, it's the staff that make a school a home. It was the staff that impressed us most back then, in Elin's first few weeks of school- unwavering support, dedication, commitment and an unparalleled amount of knowledge about children with PMLD. Elin was, and has always been, in safer hands than we could ever have hoped for. So when you have a child with profound and complex needs like Elin it very quickly becomes really hard to see staff as 'just' a head teacher or 'just' class teachers or 'just' support workers, especially with Elin staying in the one class for her whole school career. Actually, they become like a family.
We have always had a combination of amazing staff at Elin's school and I've blogged about it more than once before. This particular post though, is dedicated to Lyn, who has been Elin's constant for six full years now- almost her whole time at school. She has been her rock, her support, her encouragement, her challenger, her carer, her nurse, her physiotherapist, her entertainer, her educator, her second Mum and most of all, her best friend.
It's impossible to give a proper thank you to someone who has cared for your child in your absence like you would. As I've said, obviously the trust involved in handing over your non-verbal, profoundly disabled, tube fed, medically precarious child to someone else for six hours a day is enormous and terrifying. Also, if you get the wrong relationship everything for both the family and the school can be very difficult. We are indebted to Elin's head teacher back in 2012 for pairing Lyn with our girl. It was a match made in heaven. From the word go Elin loved Lyn with all her heart and I think the feeling was mutual. Most importantly, Lyn, in addition to the love and the cuddles and the fun, has also has consistently refused to sit back and accept mediocrity where Elin's learning was concerned. She has pushed her way more than I would have thought possible, knowing what Elin was capable of. This has led Elin to achieve, over the years, the many targets set for her by her teacher and has made all of us prouder than we ever could have imagined. Lyn just has never, ever given up on her and believe me Elin can be really hard work-especially in the older, horrendously dystonic days. The girl we have now is completely and utterly different to the girl who first went to school aged two. She has improved in herself and is now doing things beyond what we ever could have wished for. A large chunk of this is down to Lyn. I can never thank her enough. But I'll try.
Thank you Lyn.
Thank you for being you. Thank you for your sense of humour, so matched with Elin's (and ours!) Thank you for being there, for constantly going the extra mile, for being so instinctively good at your job and thank you for saying (and meaning!) that you don't want or need thanks for doing your best for Elin. I hope you realise how you have improved her life. Thank you for being Elin's voice, her eyes and her hands and her safety net for the last six years. Thank you for the dignity you have always granted her and for being her ultimate champion and protector. I hope you know what you have given her and what you have done for her.
I hope you know what you have done for me.
As a massive bonus, you also became Elin's bus escort this past couple of years and this was a true blessing. She literally went from our arms to yours and back again. What a lucky girl she has been. What a lucky Mummy I have been.
I hope you enjoy the retirement you so deserve and I know this isn't the end of the story for you and our girl!
Thank you Lyn- my words will never be enough.
Elin and Lyn- Best friends forever :-)

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