Mum Making Lemonade

Living with Cerebral Palsy 🍋🍋

Saturday, 17 February 2018

Half Term

Hurray for half term and lazy mornings! Elin has had a lovely week, she even managed to do some super sitting in her chair (and some not-so super sitting too of course!) so we're really proud of her.  The week kicked off very nicely with a visit from Caitlin who was home from Drama School in London to celebrate her 20th birthday.  Of course, Elin was absolutely delighted and had an added treat of actually having Caitlin putting her to bed, which she loved. I felt really sad when I realised that Caitlin wouldn't be there when she opened her eyes again in the morning, Elin just adores her so much it's hard to contemplate what her little mind is thinking when Caitlin is not around. I know that Elin very much lives in the moment and so I try to remember that but still, seeing them together and knowing they have to be split up again tends to make me a bit emotional! I sometimes worry that Elin is a bit lonely on the weekend or in school holidays with only Paul and I to play with.

This is what Paul came back with from the kitchen when I told him we needed a candle for Caitlin's cake!!!!!
Elin so enjoys company and especially being around children- which we saw yet more evidence of visiting our family in Yorkshire again this half term. At the start of the week we spent a lovely (but snowy!) couple of days with Elin's nephew, Gruff,  who you might remember from past posts :-)   Gruff is the son of Elin's big brother, Gareth, and his gorgeous wife Marianne. Gruff and Elin are pretty good buddies :-) Anyway this visit, Gruff was especially loving and Elin was especially happy about it. Gruff did not leave her side, whether he was 'brumming' his cars over her face, playing peek-a-boo with her, or basically just cuddling her to death. It was GORGEOUS!!




Gruff just playing  bit of body percussion on Elin!!

Big cuddles


When we returned from Yorkshire we decided a rainy Wednesday would be a good day to take Elin to the pictures. She hasn't been for ages and with here dystonia playing up a bit lately we weren't sure if she would enjoy it. Wow we were so wrong! She loved it and for the first time EVER she sat in her chair through the entirety of the film! We saw "The Greatest Showman" hoping that a musical would keep her entertained and it really did- I don't think we've ever seen her laugh so much in the Cinema!! She absolutely loved it.
Elin then had an important appointment on Thursday at the Movement Centre in Gobowen. This was an appointment following on from the one I blogged about at Christmas, to be fitted for a new standing frame which she will use for 30 minutes a day at home to do focused head control training. The frame fitted like a glove and Elin looked very straight in it which was lovely. However, we are having massive issues with Elin's feet at the moment. The tendons in her ankles are very tight and it's been increasingly difficult to get Elin's feet anywhere near flat. Her current splints and boots accommodate this curvature but do nothing to correct it. This means because she is so vertical in this particular frame the feet end up resting in a very bad position and the splints put too much pressure on her skin and cause pain and markings. She's basically standing on her toes :-(Staff at the Centre are going to work hard with physio's and the Orthotist at Wrexham to see if we can get some more corrective splints cast just for wearing in the frame, to encourage her foot to be more flat and in a better position. It was a shame we can't start the therapy in the frame straight away but we were all agreed the benefits would be minimal unless her position and comfort are paramount. 

 Elin also managed to visit her Great-Grandad and Great Nanny this week but I stupidly didn't get any photographs! Finally Elin has just been rounding off her busy half term chilling out in her room. We've seen some more good sitting in her house chair (and again, some not so good!) she has managed over an hour at least twice this holiday! Wow!
We even managed to find some time to paint Elin's nails an awesome sunshine yellow colour!! Better make sure we remove it before Monday, even though it does actually match her school uniform. Strike a pose, Elin! 
So, it's been a lovely holiday (even though I seem to have acquired a nasty bug- fingers very firmly crossed that Elin doesn't get it!) but I think Elin will be glad to go back to school on Monday for lots of fun with her friends. 
Just including this picture because of this amazing dress!! It was a Christmas present, what a lucky girl!!

Hope you all have a good week folks. Until next time.
xxxxxx



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Friday, 9 February 2018

Elin's Diary #7

Just look at this little beauty all snuggly in her winter Aran jumper! Lately I have been catching myself staring in complete shock at how big Elin is getting. It makes me feel so proud that she is so well, healthy and happy as she slowly approaches her 10th birthday. It also makes me panic. I'm not ready for her to be bigger, or older. I worry about what this means for her. I know she has years and years left of schooling before we have to think about what happens when she is no longer in full time education. But the last 10 years suddenly appear to have passed in the blink of an eye. Caitlin was 20 yesterday (coming home for snuggles with Elin this weekend) and believe me it feels like she was 10 about a week ago!!  Paul is great at not thinking about things until we absolutely have to, but I am a bit more of a worrier. I also hate change, so it's difficult to think about Elin growing up from a child into a teenager without having an element of fear underpinning my pride in the amazing person she has become. I guess I also have to think about just how far she has come in those 10 years too, though. The difference in her now to when she was a baby is incredible. She has developed and improved in ways we never thought imaginable. So from that angle, the next 10 years are also potentially very exciting. That's what I have to remember when I feel scared. 
As well as looking forward this week I've also been looking back a bit! This is a photo of Elin with Alfie. Alfie is the son of one of my oldest friends and one of my four fab flatmates from Drama College in Edinburgh. Laura and I hit it off right away when we met back in 1999, both of us hundreds of miles from home and sharing a black sense of humour, a love of cheap fizzy wine and an obsession with the Spice Girls (I know, I know, don't judge me it was the 90's!). Anyway Laura was able to visit last week from Stratford where she and Alfie are living with Alfie's brilliant Daddy who is currently performing with the RSC, a bit closer to us than their permanent base in London, so we could finally introduce Elin and Alfie, which was just lovely. It's so weird when one minute you're holding each other's hair over the toilet bowl after an over indulgent student house party and the next minute you're children are getting to know each other!! Elin is one lucky girl to have so many people who care about her in her life. 
In terms of actual activity this week Elin hasn't been up to much outside of school, what with the weather deciding to be apocalyptic again. She took her traditional Valentines balloon into school for her little boyfriend Llew and enjoyed making a snappy green crocodile baguette! She's also been enjoying some painting and listening to sensory stories. The above picture was taken today at her weekly horse-riding session at the Clwyd special Riding Centre. Paul and I were super impressed today as she had been pretty dystonic in the car on the way, so we wondered how much benefit she would get from today's session. But as soon as she was on the mechanical horse she totally relaxed and settled into it's rhythm once again which was so lovely to see. Today the physio worked on getting Elin's hands into a nice relaxed position and we were thrilled to see how well she did! Her hands stayed like this for the duration of the session, so good progress was made again. 
Well today marks half term for us! We are looking forward to seeing Caitlin tomorrow when she pops back home from London for her birthday and then we are going to visit family in Yorkshire for a couple of days. After that, Elin has a couple of appointments (one important one at the Movement Centre!) so I know I'll have a lot to update with next time. Until then, thanks for reading and have a great week! 

Ruth xxx
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Friday, 26 January 2018

Special Delivery

Christmas came today! Either a little late or super early, depending how you look at it! Exactly one month to the day that I should have been opening my Drake-family Secret Santa present, it arrived in the post. It was worth the wait!! Let me explain.
Some time ago, around about the time that certain gorgeous Drake babies began arriving and turning what was already a rather large family into something about as epic as the Lannisters, we decided Christmas was getting a little much in terms of present swapping. So we thought it'd be easier of all the adults in the family only had to buy one gift for one other adult in the family. That way everyone could save their reserves of money and energy for spoiling the children :-) We have a 'Secret Santa App' (how very 21st Century!) which each year emails you to tell you who you have to buy a present for. Then, we exchange these gifts when we all manage to get together (usually Boxing Day). It's great and works really well.
This year mine wasn't quite ready on Boxing Day and today, it arrived. Of course by now I knew who it was from, by process of elimination. It was actually brilliant to get a belated present in miserable January. My Secret Santa, or Adam has he's known to us, smashed it out of the park.
By now you have probably guessed it had something to do with Elin or I probably wouldn't be sharing it here. Adam had spent hours formatting this entire blog and photographs into a book. A beautiful, stunningly made, hard-cover book. Featuring everything I have ever written about Elin starting in 2009.
Wow. Just wow.
"Mum Making Lemonade Collected Works 2009-2017"
I can't believe I get to read my whole blog from the start in print instead of on a screen. The way Blogger works makes it quite difficult to read the blog in order, it's something I've never done (and never had the time to do). I'm so excited to read things I had completely forgotten about. I know there will be little achievements of Elin's, things she has overcome, hard times and amazing times that I have not thought about in years. It's literally Elin's whole life in a book, a record of every significant event this far.
This is one of the many reasons I started the blog when she was 12 months old.  I didn't want to forget anything that happened, bad or good. I treated it and still do of course as a diary, which I guess is all a Blog is really. To now have the first 9 years of Elin's life in print sitting on my coffee table is a dream and something I absolutely never would have got around to doing myself. I know it must have taken so much time and thought to create. Predictably I did A LOT of ugly crying when I opened it and will probably do a little more as I make my way through it. 
It has really also helped to remind me why writing is so important to me. With this book I know I'll be able to see the incredible arc of what we have been through with Elin over the past few years, from the immeasurably difficult to the breathtakingly wonderful. It's really, really, helpful to remember that sometimes. Now I have the first 9 years of Elin's life chronicled to treasure forever. No computer crashes or inability to use a laptop in my old age will stop me being able to reminisce about the incredible life of our miracle girl. That is priceless.
I hope Adam is ready to create Volume 2 for me in another 9 years time! 
I'm a lucky girl and an even luckier Mummy. I think it's one of the most thoughtful gifts I have ever received.
Thanks, Adam. 
Merry Christmas  :-)

xxxxxxxxxxxxx




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Monday, 22 January 2018

Elin's Diary #6

I have just realised in my last blog post that I forgot to mention something else that can help beat the January blues- making plans. I made a conscious effort last week to try and pull myself together a bit and this largely involved making plans (and drinking wine whilst making plans). I'm feeling extremely lucky to have so many lovely people in our lives that we can do fun stuff with. As we approach February I'm definitely feeling brighter and able to focus on the positive again. Perhaps if the sun would just come out and the snow would leave for good we could pretend January never actually happened at all!?
Elin's been doing really well. She's basically had no issues at all health wise. Even the dreaded dystonia issue backed into the shadows a bit last week and I actually got out to a  couple of appointments with a lovely relaxed Elin in the back of the car . Here she is enjoying the thought of going to her Cranial Osteopathy
Of course being Elin this wasn't fool proof and we still had some pretty 'stiff' times this week too. But school report better sitting and standing so maybe things are on the turn. There was a strange episode on Friday night where Elin got really, really dystonic right before bed. Paul was in London for the weekend and for the first time since I remember I got a little bit anxious about what was happening with her and at what point I would have to call someone. She literally went like a plank and got pretty 'locked in', straining against herself, really awful to see but not entirely uncommon, except this time it lasted way longer than I've ever seen it happen. You can usually break this kind of stiffness with positioning. This time nothing was working so I reached for the final weapon in my armoury- Calpol. I wondered if something somewhere was giving her pain. Anyway the magic calpol kicked in and her body relaxed and I breathed a sigh of relief as she was finally able to sleep. I still slept on the futon on her bedroom floor though. It's strange the sense of overwhelming responsibility that comes when you're by yourself and Elin has a weird episode and you can't bounce thoughts of what to do off someone else. You start to doubt yourself and lack confidence. Once again I'm left in total awe of single parents, especially of children with any kind of medical condition, they are total heroes. I know I sometimes take the constant support I have from Paul for granted and perhaps vice versa. We are very lucky. 
Apart from Cranial Osteopathy, Elin had Hippotherapy again this week and loved it just as much as last time! She even did a bit of tummy riding in a sort of Annie Oakley stunt position which was pretty funny to watch and even funnier for Elin. So glad she has the opportunity to experience this, I'm hoping one day she might progress to a real horse but I guess we'll have to see. 


Aside from this it's been a fairly quiet week for Elin, other than the excitement last Monday of taking delivery of a brand new bed! Apparently Elin should have had a profiling bed some time ago so it was great that we were able to get one so quickly after raising our concerns about her lying on a flat mattress all the time (it's hard for her to manage her secretions and there's only so many pillows you can put under her head. Her bed was beginning to look like the one in the Princess and the Pea!) Anyway she loves it and so do we. It doesn't have the big built up sides that the last cot-bed had so she can see out of the window and the whole room looks lighter because the sides of the bed aren't blocking the light from the window. Result! Elin also loves going up and down on it of course! She's had lots of giggles making use of the mechanical back rest and foot rest in the last few days! I feel a lot better that her head and shoulders can now be properly raised whilst she sleeps and hangs out. 
So actually some really nice things have happened this week. Although the snow was very unwelcome this weekend, as being home alone I felt a little trapped with Elin being unwilling to take her out either for a walk or in the car, especially given the dystonia on Friday night. But we did our best to amuse ourselves and had some lovely visitors. It all helps. I also managed to get out for an hour to help celebrate little Ellie Wheeler's birthday. As some of you know Ellie was Elin's friend and she passed away in September. I wrote a blog post about her at the time, she had such an impact on our lives along with her family, she was amazing. Well her incredible Mum, Annie, had a tea party in her honour this weekend. There was a beautiful lit-up tree with some photo's of Ellie dangling from the branches and guests were encouraged to write messages on labels and tied them to the tree for the family to keep.  I thought it was a beautiful idea and I was stunned at the bravery and dignity of Annie in managing to organise such a touching, appropriate tribute to Ellie on her birthday weekend. 
Of course it gave me a lot of perspective, too. How easy it is to forget sometimes what we have to be thankful for. This is what I thought as I played with my girl this weekend. It is easy to forget, but we really mustn't. 
I can't wait for February to start. New month, new outlook. Happy New Year (February is the new January!)
Thanks for reading,
Ruth xxx

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Monday, 15 January 2018

Blue Monday

Apparently today is the most depressing day of the year. You won't get any arguments from me about this! It's miserable, everyone is overweight and skint (by everyone I mean me) and it's becoming more difficult to imagine what the sun even looks like or what it feels like to be truly warm. Illness is all around with a national flu pandemic and I know from first hand experience this Christmas the NHS is in complete crisis, despite our PM's protestations to the contrary. There is a total knuckle head in the White House tweeting outrageously every day as if to serve only to depress us all further, the daily news seems to carry only stories of evil and the future of the world seems as bleak as the weather. "Blue Monday" indeed.
At times like this, our situation with Elin can weigh more heavily than I would ever normally let it on my psyche. I'm angry. I'm like a little ball of anger. It's hardly surprising that when everything feels so insurmountable, the things I have trained myself not to dwell on re-surface like an indestructible villain coming back time and again at the climax of a horror movie. Don't get me wrong, Elin's been great (the one saving grace of a pretty stressful Christmas holiday this year) and for that I am forever grateful. But her dystonia hasn't been as good. Coupled with the terrible weather it's rendered us quite housebound, since taking her out whilst her muscles contort and spasm violently in her chair isn't really fun for anyone. At first you deal with it, as you always do. However week after week of it can start to grind you down. Family outings, or actually even just getting Elin to her necessary therapies and appointments, can be totally draining emotionally and physically. Elin is so big now (and heavy!!) and she turns 10 this year. When her dystonia is at it's worst, nothing seems easy. Because it isn't. Negotiating each day starts to feel like a big deal.
Last night Elin was up from 2am. Mental exhaustion is really starting to kick in when added to anxiety -two of my favourite bed fellows! So, what, I hear you cry, is the answer? I didn't come here just to moan (I don't think). I came here to write a list of things that help when this is what life is throwing your way.
1. Friends and understanding. Cliche's end up being cliche's because they are usually true.  Nothing will highlight your true friends like a little bad spell. I, of course, have learned this time and again over the years. Interestingly I have never once been surprised either by those that are always there for us. You just know who has your back and you know those who just don't really get it, or don't allow themselves to try. I am incredibly lucky to have accumulated some amazing groups of friends over the years. I simply don't know where I'd be without them (and without Whattssap group chat- thank you, internet!)
2. Books.  Books save my sanity time and again. I am deeply sorry for anyone who will never know the joy of getting totally lost in a good book. Total bliss.
3. Netflix or Iplayer or whatever you can get a good watch on. Pure escapism. "The Handmaids Tale", "Stranger Things" and "Big Little Lies" are my top 2017 water-cooler picks for box set brilliance. Over Christmas I managed to switch my brain off long enough to get immersed in "Little Women" (some lovely moments) and "Feud:Bette and Joan" (for a vintage hollywood history screen legend luvvie geek-girl like myself this was PURE JOY). Nothing beats curling up in front of the fire and getting lost in a creatively magical world of strong characters and good stories.
4. Conversation. The vicious circle of  depression dictates that the less you do the less you want to do and the less people you see the less you want to see. But there is no substitute for getting out and having a chat to lift the spirits. This is where Storyhouse, Chester, comes into it's own for me.Storyhouse is the new theatre in Chester (though it's so much more than that). I volunteer there and getting out to work some shifts around their Christmas show "The Secret Seven" and a couple of other touring show's they have hosted has probably single handedly boosted my mood more than anything else. Suffice to say taking the plunge and getting to know and work with complete strangers (often a completely different group of people each shift) has been more of a tonic than I could have imagined when I joined the team. Being an unashamed thespian I loved Storyhouse anyway, but now even more so. I was a bit scared to make the leap of joint their volunteers but I'm so glad I did. This will definitely be elaborated on in a blog post of the future, but if you've never heard of them check out their website https://www.storyhouse.com.  I'd been feeling a little lost recently since I gave up my permanent teaching job and exchanged it for the full time job of being Elin's Mummy (this is also another blog post in itself for the future !) I like getting out, meeting people using my brain a bit in whatever capacity I can. This has served to scratch that itch for me for the time being and I love that I've had that opportunity. Thank you Storyhouse.
5. Walking. Now Elin is back at school, the pressure of being confined to the house has lifted in that appointments and therapies and some other commitments  aside, we are able to get out sometimes for a massive walk. It really does clear the head. It definitely makes me less angry, too :-)
6. Elin's smile. Enough said.
7 . Counting your Chickens. We have so much to be thankful for, we know that, and Elin's good health has been a source of huge gratitude and pleasure these past few weeks in what is historically a difficult time of year for her.  Nothing like slapping yourself with a wet fish and telling yourself to get a grip, the British way.
I'm sorry of this has been a bit of a depressing post. I know it's not like me and it kind of goes against the theme of this blog but we all feel like this sometimes, right? I do wonder if sometimes remaining so positive has sort of created a not wholly accurate portrayal that this life has somehow magically become easy or at least that we don't still struggle daily with what happened to Elin, that we no longer worry, or cry, or feel helpless, or are knackered or in shock. We do and we are, it's just rarely a compelling enough feeling to discuss with anyone but each other. That too, though, is something to be thankful for because it means each other is more than enough for most of the time :-)
I think that's enough morbid introspection, because one thing the past ten years has most definitely taught me is that this too, as everything, will pass.
Oh, I forgot one more thing that helps me cope with these blue January days...
8. Blogging.
Thanks for reading, as always,
Ruth x
Storyhouse, Chester.


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Friday, 29 December 2017

Elin's Christmas Diary


Christmas Eve and Elin's Daddy just had to get her a decoration for the tree. I think he excelled himself this year! It's funny how even when Chistmas gets a little topsy-turvy some traditions just have to be carried out no matter what. Elin and I also felt strongly that we had to wear brand new Pyjamas on Christmas Eve too and for the second year running they were special Alder Hey charity ones. Last year's stripes made way for this year's spots. If you've not seen the 'Get Spotted For Alder Hey' campaign it's worth looking up and this year that's where our Christmas card money went.  A very worthy cause and a big thank you to Elin's Aunty Karen who works at Alder Hey and buys us our Christmas Eve set each year :-)
Christmas Day was slightly topsy-turvy this year because Elin's Great-Nanny was in hospital so when we would normally all be having lunch, we were visiting her on a ward instead and then having Elin's Great-Grandad over for Turkey sarnies. Elin took it all in her stride and was as good as gold with all the changes to routine .This meant eating Christmas dinner at night which actually turned out to be a nice change. As usual Elin was totally spoiled and actually had even more time than normal to open her presents since we weren't eating at lunch time. She had a 'Big Mack' Communication Aid Switch, Fish Tank, Portable DVD player and some Wireless Headphones for listening to her music with no outside sound from Santa. The rest of her ridiculous hall from our wonderful, overly generous family and friends included Moana goodies, P.J's, a giant Santa balloon, new clothes, C.D's, books, a new rucksack, special lights, a unicorn cape, a foot spa,  and a million other things. She was such a lucky girl. Of course she loved the tearing sound of the wrapping paper best :-)

The build up to Christmas was also a little topsy-turvy this year. If you read the blog regularly you will know that a little classmate of Elin's passed away the week before Christmas. This made for a very strange few days as we contemplated what her family were going through. These things are wrong at any time of year but at Christmas it seemed doubly cruel and incomprehensible. Due to the sad turn of events Elin's traditional school Christingle was unable to go ahead, but we did get to one in our village church on Christmas Eve which we attend each year. Despite not being in any way religious we do try and take Elin to this service, she simply adores the lights and carols, and so we thought of her beautiful little Christmas Angel classmate when the lights went out and of Ellie who we lost in September, and of Tobias who we lost earlier in the year and their families spending their first Christmas without their children. Unthinkable. We held Elin extra tight and felt lucky as we always do that we still have that option.
One positive in that strange, incongruous build up to Christmas was our becoming-traditional visit to the Chester Zoo Lanterns. This is a beautiful display of lights and lanterns in many different forms but mainly animals of course! This year Elin was dystonic so sitting in her chair was not as enjoyable for her but she still really enjoyed it and so did we. I would say that it wasn't quite as good as last year, there was a different company in charge and there weren't as many interactive displays or puppets/moving animatronics (which were both mine and Elin's favourite parts last year!) but still for the money it remained a lovely Christmas treat.

So after the excitement of Christmas day was over we went to London to visit the Drake family for Drake-mass mark two!! Unfortunately Elin remains dystonic and although she was incredibly happy and calm whilst we were down there the journey to and from London was not an easy one at all and one which Christmas traffic definitely didn't help. It has really started to become apparent to me that being anywhere but our own home for any length of time with Elin has started to become a real big deal. In travelling terms because of the dystonia even just getting her in and out of the car at the service station was hard going . Then, not having hoists and level changing platforms or step-free access/wet room etc is much harder than it used to be. I ambitiously had her on the floor a few times and getting up from that position with her has definitely taken it's toll even after a couple of days. Since our family is so huge this makes me worry about what this means for future get-togethers as she gets longer and heavier at a rate of knots, or so it seems lately. I don't like change at all but I think 2018 might signal a pretty seismic shift in our world. Elin will be turning 10 and I don't think we can tote her around as though she is still a toddler anymore :-( Sadly, I didn't get many photo's from our trip- a sure sign that I was mostly pinned underneath Elin for the duration but suffice to say she had a lovely time. She was spoiled rotten AGAIN and as usual absolutely revelled in being around the children. She only has to hear their voices and she's laughing, it's the cutest thing. 
Well. we're home again now and that brings us up to date with Elin's Christmas adventures so far. I'm not sure what else we have planned but as she doesn't return to school until the 9th of January this year I'm sure there will be plenty of holiday fun yet to come- I'll be sure to keep you informed. 
Thanks for reading about our girl, hope you all had a wonderful, happy and healthy holiday
Ruth xx

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Wednesday, 20 December 2017

Christmas Angel


Today I spoke to a Mum who has lost her child. Another grieving Mum in our world, another of Elin’s friends at school has devastatingly grown her angel wings. She will be buried three days before Christmas Day and I don’t understand this world anymore.
This Mum took me today and showed me a photograph of our daughters playing together in her beautiful school tribute display. No bitterness, only bravery. Strength beyond explanation, determined to do her girl proud and encouraging others to think of the good things. I cannot stop thinking of her grit and her mettle, a soldier of emotion and a solid pillar in a crumbling temple of life as she knows it. Once again I am left reeling by a courage and dignity I can’t comprehend, I hear myself uttering the cliche yet again ‘I couldn’t do it, I couldn’t be that strong’ but I know I could. Because these Mums have not only had to be strong from often the moment they gave birth, but they have watched their babies be stronger every day of their lives than any one person has to be in a lifetime. Watched them fight and watched them win, watched them rally and seen them beaten. So I finally understand after all this time, as I look at the pictures of this twinkling girl always shining in life and now forever a Christmas Angel, that the strength of these incredible Mums doesn’t come from them- it comes from their children. 
Sharon
Claire
Anna
Diane
Helen
Annie 
and 
Amy.
You are heroes. 
You are doing your amazing children so proud each and every day, this is your gift to their memories. You are my daily inspiration. 
Ruth 
xxxx
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