News!

Elin won the Easter Egg decorating competition!!
With 150 entries across the school, we were pretty amazed that she claimed first prize. Especially when we saw the quality of the others. I mean seriously they were AMAZING. There was an inspired replica of Jack and Rose on the Titanic (which lit up!), a Circus complete with tightrope walking egg (our favourite), a 'Mount Egg-erest" with an intrepid explorer egg, an 'Egg-quarium" with egg fish swimming in a tank being observed by egg children and lots of others which had hilarious egg-puns and all of which had a great deal of time and effort spent on them. It was so lovely that the competition captured the imaginations of so many of the children, I think these are the things you remember when primary school is a distant memory- I definitely remember doing one myself when I was young. The judges were from many different aspects of the school, including some children, and it seems the vote was unanimous. I think ultimately Elin won for the message her Professor Hawking Egg carried, as there was little to distinguish the skill and innovation of all the entries- they were superb. The idea that "It's not our disabilities, it's our abilities that count" I think probably touched the judges, and in a school like Elin's with so many amazing children beating educational expectations of them daily,  I suppose that is hardly surprising.
Anyway Elin was pretty pleased that she won. She was called into a special assembly and apparently when it was her turn to collect first prize the children were all super excited for her, clapping and cheering her. This was soooo wonderful to hear. Elin had been the only entry from Y Canol and I think it was great for the children in that assembly to see that she had taken part just like them. It doesn't surprise me that the children were so supportive of her win, it's what we've come to expect from her school environment, but it still managed to elicit a great big lump in my throat when I heard about it. I guess there are some things you just get used to accepting she will never experience, so then when she does it's just so lovely. She's even going to be in the paper!! I will include that photo here whenever it appears! She won a squeaky chicken toy and a headband and lovely Easter basket. She was proud as punch bringing them home, and we were as proud as punch to see her. A super Monday to kick off the last week of term, after a really gorgeous weekend for Elin. We are hoping the Easter break will be just as lovely for her, and for all of you!
Well done, Elin.

xxxxxxxxxxxxx

Egg-cellent Professor

Elin’s had a much better week this week after suffering some pretty prolonged Dystonia last week. It’s been so nice to see her so relaxed again. She did World Book Day last Friday not as Paddington Bear but as Veruca Salt from “Charlie and the Chocolate Factory”. I didn’t think it would be as good but on the day she actually looked amazing!! 

 

We had a nice Mother’s Day with our first visit of the year to our most favourite place- the Zoo. It was good to get some fresh air and even though Elin’s dystonia was still plaguing her she had a good time being nosey and looking through the new clean glass in the penguin enclosure!

  

This week brought some sad news with the death of Professor Stephen Hawking. In his lifetime Stephen Hawking did much to dispel pre-conceived ideas about disability. The fact that his body was so affected by his condition, but his mind remained one of the sharpest in modern times, coupled with his spirit, humour and refusal to be a victim made a lot of people consider their own prejudices against anyone in a wheelchair I think. I was saddened to see a great deal of online debate about whether people should be saying he is now ‘free’ of his disabilities. Many disabled people themselves were very angry with this idea, as they believed it to be insulting. They argued it was his wheelchair and voice/computer that gave him freedom. Others believed despite his bravery and attitude in life you could never truly believe he wouldn’t have changed his condition in life if he’d been able- after all, they reasoned, who would really choose to live in such a restricted body? I was just left wondering why everything has to be argued over these days online and why people can’t just have their own opinions without feeling the need to justify them to strangers and get into heated debates via the web. I suppose it’s a very emotive issue and leads to complex questions about what you think about the afterlife. For my part I just felt sorry for the loss of such a great mind and man, but glad that he’d been able to defy early predictions about his life by doctors for so very long and that he challenged stereotypes on a global scale with such style. 

This is why when Elin’s school said they were holding an Egg decorating competition for Easter, we thought we’d pay homage to Professor Hawking with a topical entry entitled “Most Eggs-cellent Professor”.  I’ve never attempted one of these before but was quite pleased with the outcome, as was Elin!  She especially liked the fairy lights in the dark! She worked hard fingerprinting the planets and black holes and title plate. It was really nice to do some craft together. Results are announced next week but by the look on Elin’s face I think she feels like a winner anyway!

Have a great week folks, remember to “Always look at the stars instead of down at your shoes”

Ruth xx

 

   

Oh and Elin would like to wish the best Daddy in the entire universe a very happy birthday for Sunday! If the “Beast from the East” can hold off we are hoping to go out for lunch and maybe a nice stroll if her dystonia stays at bay.Either way I know Paul will be happy as long as he has his best friend by his side! (To clarify his best friend is definitely Elin and not me!! Ha!) 

 

 Playing with an Easter shaker Elin made at school 💛 Thanks for all you do best Dad EVER 💛

So what do you do?

Ugh. When you meet new people. Or old people, who know you've stopped work. I hate this question. It makes me feel inadequate- RIDICULOUS I know. But I struggle to say 'I don't work' since I finished teaching. I feel like this says something about my identity as a person, even though I'm certain it doesn't to those asking the question. However, fresh on the back of my 'unemployment paranoia' the other day someone asked me why I didn't work, despite knowing my situation with Elin, and then actually argued with my response as if it had anything to do with them and as if it was their sole mission in life to persuade me to go back to work.
Definitely fodder for a blog post, I thought.
So..........

A perfectly average week in the life of us (this is completely mundane information but multiply this by 52 weeks of the year and you get my drift)

Monday
Meeting 9:30am school w/Nurse.
Meeting 2:00pm w/Elin's Case Manager.
Scheduled phone call 4:00pm catch up and discussion of needs with Occupational Therapy.
Appointment at home 4:30pm Physiotherapy.
Tuesday
*No appointments!*
Drop off prescription at Chemist.
Phone Orthotist to check on boots progress.
Send email to Elin's case manager with links to upcoming equipment needs.
Chase appointment request with school inclusion officer via school.
Wednesday
Email Ed Psyche to confirm meeting at school next week.
Appointment 3:45pm w/new social worker.
Chase G.P as to why Medazolam medication still hasn't arrived.
Email O.T to confirm physio can meet here with her. Remember to phone school to check O.T can go in before this to see Elin at school.
Thursday
Phone incontinence service to check when next delivery of nappies due (as we will run out if I miss the fortnight-before order date).
Pick up and check medications from Chemist.
Post Elin's updated school records to case manager.
Appointment 3:30pm Orthotist intermediate boot fitting.
Friday
Take delivery of Elin's feeds and giving sets for the month.
Drop off another prescription.
Chase G.P referral for specialist Dystonia appointment still waiting to hear about.
Appointment 3:00pm - Pick up Elin from school and take to Hippotherapy.

Night Diary.
Elin wakes up usually around 2am for a change of nappy and sometimes a  change of sheets too.
Back to bed and pray Elin drops off quickly again.
Possible second wake up around 4:30am, may or may not go back to sleep.

Other appointments on other weeks in addition to those above include:
Cranial Osteopathy.
Dietician review.
Paediatric Neurologist @ Maelor.
Hips/Spine reviews @ Alder Hey.
Orthopedic Spinal etc review @Maelor.
Dermatology.
ALAC wheelchair services.
ALAC Orthotics/Splint castings and review.
Specialist Dentist.
Movement centre @ Gobowen/Standing frame fittings.
Hand Splints reviews.
Home hoist and sling checks and reviews.
Occupational Therapy home equipment review.
WAV Vehicle repairs (chair restraints etc)
Bath repairs and review.

Please understand that none of the above is in ANY WAY a complaint. I am delighted that Elin has access to all of the above and forever grateful to all of the professionals in her life for their care and dedication to ensuring her quality of life remains the very best it can be. But I just wanted to share the reasons why I choose to *currently* not add 'work' into this mix, since if I am asked about it I annoyingly find myself struggling to justify my choices articulately. I think I feel guilty. I don't know why. Guilt for not contributing to society in some way? Guilt that I'm fortunate enough to have the option? I don't know.  Then I hate myself afterwards for caring so much what anyone else thinks in the first place. It's taken me a while to realise I don't actually automatically owe people an explanation of why I chose to give up a job that I used to love. This post is definitely not meant as a justification either, but I finally felt ready to honestly and openly share some of the reasons why, as a parent of a child with severe and complex disabilities, going to work doesn't really fit into my schedule at the moment and doesn't for many others. I did it for eight long years following Elin's birth and in the end I couldn't make it work (I made myself ill trying, both physically and mentally). Some people do make it work of course and they are AMAZING. For me right now, the kind of teacher I could be alongside the job of being Elin's Mum is not the kind of teacher I would want to be.  Teaching simply needs more dedication and enthusiasm than I am able to give, especially in the current educational climate (and I could write a whole other blog post on that subject believe me). I loved my job more than anything once upon a time and leaving a school I called home and a staff that were family was beyond difficult even though I knew it was 100% right at the time. It's taken me 18 months to be able to admit "I USED to be a teacher" instead of "I am a teacher" because of some weird misguided sense of shame I carry around about being unemployed. I was 26 years old when I had Elin, I was always going to go back to work full time after having her, I never questioned it. I had a career. I looked sneeringly down from my ivory tower of pregnancy on Mum's who didn't work- I couldn't imagine it (I hate that fact now-maybe that's partly where the guilt comes from). Things change. "Life is what happens whilst we are making other plans" as John Lennon so accurately observed. It will always hurt, always be yet another "Sliding Doors" moment in my lifetime, but I am soooo thankful I have had the ability to make this choice, which works best for us right now.
Perhaps one day things will change again. Learning to live in the moment (as a bona fide control freak and someone who likes to plan)  is something I've been trying to train myself to do for the last ten years. I think I'm slowly starting to manage it.
I used to be a teacher. Now I'm just Elin's Mum.
And I love it.
Thanks, as always, for reading.

Happy Mother's Day to all the Mummy's out there if you work full time, part time or stay at home. You're all heroes. 

xxxxx

Elin's Diary #8

Last week was pretty uneventful really, as weeks go. But we like uneventful sometimes, especially after a busy half term! Elin had her usual appointments, but swapped Hippotherapy for Orthotics which was necessary but nowhere near as much fun. Boo! I went to London for weekend to visit family. Unfortunately, we think visits to family will have to be done this way (i.e in relay) for the foreseeable future. The journey down with Elin at Christmas was a bit of a nightmare. When Dystonia makes it impossible for her to sit, a five hour car stint becomes pretty impossible. What happens is that she ends up working herself into such a state that you just can't bare to put her through it. Red face, lathered in sweat, breathing even becomes compromised for her. It's awful (and scary) to watch so goodness knows what it's like for Elin. The last time we attempted the train down instead was a nightmare too so for now it feels like there isn't an easy solution. This is obviously really upsetting since a large chunk of our family live in London. We are still waiting for a referral to Dr Lin, Dystonia expert at The Evalina Children's Hospital and it can't come quick enough. Elin's seating issues have affected her life experiences for way too long (meaning forever!) and now she is getting big the issues are amplified tenfold. Simple things like going away for a couple of days as a family can be traumatic for Elin. It's a part of her condition I find hardest to accept. She so loves company and different voices and new experiences but it feels impossible to expose her to these things when she can't sit in a chair or be in a vehicle. We just have to live for the times when she can manage it, and there are times, I just wish it wasn't so inconsistent for her.
Anyway as I enjoyed a lovely night in London (it still blows my mind that I can be in London in a couple of hours from Chester- it literally feels like you've landed on another planet when you get to Euston), Elin played her Daddy up something rotten and kept him up pretty much all night. Oh dear! Paul always says he can never sleep when I'm not here anyway, I think he feels the weight of responsibility of keeping one ear out for Elin waking up (usually my job) but I think it does him good to know what it's like to be 'on call' all night! In fairness he is as wonderful early morning as he is hopeless in the middle of the night so this division of labour means I get a lie in on a Saturday and Sunday and in school holidays which I'm happy to trade for a full night's sleep the rest of the time. I really, really don't like early mornings!
So I got back from London on Sunday and Elin slept really well (ha!) then it was back into the school routine again except this time with the unwelcome guest, the 'Beast from the East' !! Yep, this week we've had snow falling snow on snow, snooooowwww on snoooowwwww and it really feels (as if it didn't before) like a truly bleak mid-winter.

A Dystonia free happy journey in the car to the Cranial Osteopath this week, complete with home made, hand knitted Giraffe hat!! Erm...not by me obviously. I can't even hem my own trousers let alone knit, despite being quite adept when I was around nine years old thanks to my Nan. I think I even made a blanket once. I guess the novelty wore off! Anyway the visit to the Osteopath was a big success, Elin loved it and slept ALL NIGHT afterwards. Worth every penny. We've also noticed she's been breathing better since her visits started in December too. I always err on the side of caution/scepticism when it comes to alternative therapies but I'm open to try anything because I just don't think it can possibly harm. Cranial Osteopathy worked for sure when Elin was a tiny baby and I think it's working for her again, in a gentle and subtle way. Anything that makes her feel relaxed is a bonus in my eyes. I think she deserves a bit of a pamper now and then!
Following this, the weather sort of went off-the-scale crazy. We started to feel like we were in "Dr Zhivago" each time we went out of the door (minus the cossacks). This led to Elin having a self prescribed snow day today and it's not looking good for tomorrow either...

Elin kept toasty warm inside the cottage!! I hate her missing school but in temperatures of minus five and roads to us covered in snow and ice it's sort of inevitable. Sometimes you just have to give in to the elements.
Being off school gave us time to try our "World Book Day" costume on. Elin's school isn't doing it until next week but I thought we might as well have a practise run. I'm glad we did! Her costume looked GORGEOUS ...but it was too small! Arghhhhh!! Also when you have a child that lies/sits pretty much all day a giant stuffed hood maybe isn't a good idea. Neither is a onesie (that's too tight) when you factor in nappy changes. So it's back to the drawing board for me (fear not I have an idea- Don't panic Captain Manering!!) but of course I have to share the photo with you because it's just too cute not to. I think someone special to us who might be reading this would love this costume in particular, such a shame it wasn't to be. You have to imagine it, of course, with a lovely vintage suitcase and a plate of marmalade sandwiches....

How sad that Paddington Drake wasn't meant to be! Tune in next week to find out what the more sensible alternative is (disclaimer: it's not as good). Damn you Cerebral Palsy and your costume restrictive issues! Still, we'll alway have this amazing photo and I got to spend the afternoon cuddling a real life bear so it's not all bad.
Hope you all have a great week, stay safe in the snow if you've got what we have!
Thanks for reading as ever,
Ruth x