Eilys’ Experience List

I wanted to write this blog post on what should have been Eilys’ 2nd birthday. Today is going to be a really sad day but I am going to try to make it a positive one too. Yes, today should have been her 2nd birthday and it is heartbreakingly sad that she isn’t with us to celebrate but this is also the anniversary of one of the loveliest days of our lives, the day we met Eilys for the first time. It is also a year since so many of our family and friends came to join us to celebrate Eilys’ 1st birthday which was such a wonderful day too. We are having a family day today and we are going to remember her beautiful smile and how she lit up the world. We would like as many people as possible to be wearing something purple today in honour of our beautiful girl (see here for full deets). Anyway, the blog post. I wanted to write about Eilys’ Experience list, how it came about, what was on it and what we managed to get ticked off. So here you go…

On the car journey home from Alder Hey Children’s Hospital after we were told that Eilys has Spinal Muscular Atrophy type 1 we tried to pick up the pieces of our broken hearts and get ourselves together before telling our families. We sat in silence for some of the journey, we talked, we cried. It felt like the longest journey. Eilys slept through most of it.

During the journey some ideas came to me. Eilys was a day away from 6 months old but with her diagnosis I didn’t want her to move into her own bedroom so I said to Joe that we should turn it into a sensory room with funky lights, bubble tubes, disco balls, music, textures and smells for her to enjoy. I wanted to try to focus on the things that she could do and could enjoy. We talked about these ideas a bit and then a lightbulb went on in my head. I had heard of bucket lists and wanted to do something like that with Eilys. I had been really moved and amazed by the late Stephen Sutton and had thought that his bucket list and fundraising despite facing the worst news was so awe inspiring and positive and I started to think about how we could do something similar for Eilys. I started to scribble in my note book a few ideas. We chatted about it a little bit in the car but other things took over like our unbearable sadness, how the bloody hell were we going to tell our family, our friends and how were we ever going to explain this to Dylan. Dylan, who had loved Eilys from the second he met her. Dylan, who was the best big brother to Eilys.

And Dylan was one of the biggest reasons that we made Eilys’ Experience List, well apart from Eilys herself. We wrote down a list of things that we felt all children should experience. Things that we loved doing as children. Adventures that we’d have wanted to take them both on when they were a bit older. The full list took a while to compile and we added to it as and when we needed to.

After people started to find out about our devastating news about Eilys we started telling them about our ideas for her Experience List and people suggested places or things that might be suitable. A lot of people suggested talking Eilys to Disneyland in Paris but this never really entered my head (which is a bit weird as I had been pissing Joe off for years asking to go). I felt that it wouldn’t hold any meaning to her and whereas she would enjoy the fireworks and the lights etc that other places would be better for her to go and enjoy. I thought that she would just be observing Disneyland and due to her age she’d have no point of reference with it really. I know Dylan would have had a blast there but the logistics of getting Eilys there and what if she was ill while we were there etc etc was just too much for us to think about. So we kept things simple. We were quiet specific about what made it onto the list. We wanted all the things to be quite simple and enjoyable. We wanted the things on the list to be things that Eilys could participate in herself and not just being a passive observer. And most of all we wanted to make as many lovely memories to look back on for us and Dylan and the rest of the family.

So here it is… the list in full with a little bit of info with each one. These are in the order that the list was written in and not in the order that we completed them in…

Go to an Aquarium (done)

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This was the first thing we ticked off the list. My birthday was 4 days after we had Eilys’ diagnosis and all I wanted to do was hide away and hold her close but what would be the point of that? We decided to go to the Blue Planet Aquarium in Chester. This was the hardest thing to tick off the list for me. Everything was so raw and seeing other people going round living their lives was so painful. Joe’s sister, Rosa, came over for a few days and we all piled into the car and went out for the day. It was a really good day out. Eilys loved all the fish and she slept through a huge chunk of it so we had to go back to the bits she missed and start again, bonus!

Visit a Zoo (done)

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We decided that the day after boxing day we would go out for a family day out to Twycross Zoo. We went on mass. Me, Joe, Dylan and Eilys, my parents, Joe’s parents, Joe’s Uncle David, Joe’s Granny and my Gran. It was cold but we had a great day out but it was bloody exhausting, Twycross is HUGE. Eilys very much enjoyed the giraffes and the lorkieets. As we were walking around the Zoo I had a text for my awesome Slimming World consultant Ro to see if I would mind if she shared my justgiving page to raise money for Eilys’ experience list… er, what? I had no idea what she was talking about. I had been completely off social media and hadn’t seen that my beautiful insta-buddy Emily had started fundraising to give us money to get things done on our list. We were blown away! I text her right away and said thank you. It was so humbling that complete strangers cared about Eilys and her story and wanted to donate money to her. In the end she raised over £2800 which is utterly amazing and incredibly kind and it allowed us to do so many more things. Another one of my friends, Helen, arranged an online auction to raise money for Eilys’ Experience and again strangers donated items and bought things with all the money going to Eilys. This raised over £1000. We used about half of the money and the rest we split evening between the Children’s Adventure Farm Trust and the Ally Cadence Trust for SMA.

Go to a Farm (done)

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Eilys went to quite a number of farms with us. We went to Wheelock Farm, the farm at Reaseheath College, Stone Hurst Farm and the Children’s Adventure Farm trust (CAFT). Being around animals is so therapeutic for children and Eilys was always very interested in the animals. When we went to stay at CAFT for 3 days in February it was so lovely because she was able to interact more with the animals and we were able to spend loads of time with the animals. We also managed to wangle having a private tour of the lambing at our local agricultural college, Reaseheath College, which was an amazing experience and they have an incredibly cool zoo.

Have an ice cream at the beach

Dip her toes in the sea

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Unfortunately, although Eilys did go to the beach when she was really tiny we didn’t manage to get there again. This was due to being really busy ticking off other things when the weather was shitty and then when then weather was better she wasn’t really up to a long drive to the beach. We had planned to take Eilys and Dylan to Southwold beach when we visited Suffolk for my Aunt’s 50th Birthday but Eilys was really poorly that weekend and so Dylan went with my parents and we stayed at home instead.

Get sand between her toes (done)

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The first time we did take her to the beach when she was a weenie little dot I buried her little feet in the sand. I have no idea why I even did it but I am glad that I had. We also played with sand and put her toes in sand in Dylan’s sandpit (an old ceramic sink) our back garden too.

Meet Santa (done)

Go on a train (done)

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On the 19th December we took the kids to meet Santa at a local farm that holds a massive christmas light display called Weston Light Display. We really just went to see the lights as we thought Eilys was like it, and Dylan too and then there was Santa there so we waiting in line and met him. It was really lovely but a bit heartbreaking as the lovely Santa said “Oh you 2 will be a lot bigger when I come to visit you next Christmas”.

On Christmas eve, I booked for us all to go on the Santa train at Shackerstone railway. It was magical. The train went along the Bosworth Battlefield line and it was a beautiful old steam train. Eventually it was our turn to go to see Santa and he was so lovely with both children. It was a lovely way to spend Christmas Eve.

Go for lots of long walks with family and friends (done)

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As a family we like to go out on walks. One of the first bits of “equipment” that we bought for Eilys after her dignosis was a brand new, all terrain pushchair so that we could go out for walks as a family without having to stick to the path! We went for lots of lovely walks and enjoyed the outdoors together as a family.

Visit a castle (done)

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The weekend after Eilys has her NG tube fitted we met up with my parents at Beeston Castle for a walk. It was the first time we had really been out with her tube in so I was a little bit nervous as it was the first obvious thing that made her look ill but I also felt very difiant with a “fuck off” attitude on me as a protective veil. Anyway, we walked all the way up the hill and to the castle on the top. The weather was awful, so grey and windy but not rainy, until we got to the top. Eilys was a bit grumpy and we gave her a feed near the top of the hill when we were on the way down. She was still quite grumpy so we decided that me and Joe would take her back to the car to give her some physio. And then it started to hammer it down with rain so we all retreated back to the car for picnic.

Go on a boat (done)

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I really wanted Eilys to go on a boat and I really wanted it to be a Canal Barge. Me and my family had quite a few lovely holidays when we were younger on various barges and I thought that the movement of the water would be lovely for Eilys. We booked a day trip on a boat and both sets of Grandparents came with us. We packed a picnic and some cake (it was Joe’s Dad’s birthday too) and we had a lovely, if not cold day on the canal.

Look at the stars (done)

Go camping (done)

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Part of Dylan’s 3rd birthday celebrations were that we stayed in a Yurt. Yes, yes, I know this is technically not camping but it is in a tent and taking Eilys in an actual tent wouldn’t have been a very good idea or a very safe idea. We chose a Yurt in Chester so we could go to Mattel Play! on the Saturday and then to the Cheshire Ice Cream Farm on the Sunday. It was a wonderful place to stay, so peaceful and quiet and in the middle of nowhere. It was bloody freezing at night though! Eilys loved it there and due to it being a bit chilly we had her in our bed from about 4am both nights. Our bed had a window at the head of it and me and her watched the stars in the early hours of both mornings and it was just perfect.

Have afternoon tea (done)

A couple of weeks before Eilys had bronciolitis we went for Afternoon tea courtesy of Auntie Mizzy and with my Mum as a girls day out. Eilys was too little to eat anything but we had a wonderful time and it was the first time she ever tried cake.

Visit the Soup Kitchen in Stafford with her Grannies (done)

The Soup Kitchen in Stafford is somewhere that we have visited many times since Dylan was born. It is a really old cafe/restaurant and we generally couple a visit with going to the awesome sensory room that you can book for free in Stafford Library (which has sadly now closed). Both of Eilys’ Grannies and Dylan came along and we had a really fun day out and we went then by train too!

Go on a swing (done)

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Every time we came across a suitable swing we tried to let her have a go. She really loved going on swings. The movement must have felt so lovely to her.

Touch something really big (done)

Eilys touched quite a few big (huge) things like Beeston Castle, the columns inside Manchester’s Royal Exchange Theatre and the launch scaffolding from a Spaceship at the Leicester Space Centre.

Listen to Mummy and Daddy’s favourite songs (done)

We had lots of “raves” and “parties” in the sensory room with Eilys. She loved dancing around the room with me or Joe and watching Dylan dance about like a numpty. On the nights where we thought we were going to lose her we wanted her to be relaxed and calm so when she didn’t need physio or suction or other forms of intervention we would just lie next to her and listen to The Beatles or Pulp or Blur or the Smashing Pumpkins or whatever else came into our heads. Sometimes we would tell her stories at the same time or we’d sing to her but looking back, these were really beautiful and really special nights even thought the memory of them is also really heartbreaking.

Watch Glastonbury (done)

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The weekend before Eilys died we watched a lot of the Glastonbury highlights on the TV. Eilys wasn’t very well at all but the music and all the funky lights seemed to calm her a lot. Her favourites were Coldplay and Muse but she loved Foals. Adele made her cry… not in a good way!

Visit all her Great-Grannies houses

I am gutted that we didn’t get this one done. Eilys visited my Dad’s Mum quite a number of times as she lives near my parents. Our other Grans live quite a trek away (Rotherham, York and Carlisle). Like with the beach, there was either not the time or Eilys wasn’t well enough. I am most saddened that she didn’t get to go to York as it is one of my favourite places. Luckily, Eilys did get to spend quite a bit of time with both our Maternal Grandmothers but unfortunately, she didn’t get to meet Joe’s Dad’s Mum.

Smell lots of flowers (done)

Get a Valentines Card (done)

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Go to the cinema (done)

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Eilys went to the cinema twice. The first time was to see Paddington and the second time was to see Despicable Me 2. She was mesmerized by the whole experience (and she slept too) and Dylan was so lovely and excited both times!

Go to the theatre (done)

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We took Eilys to the theatre twice. The first time with went with Granerie and Dylan to see The Gruffalos Child and the second time we went to see Peppa Pig live with Auntie Rosa and Dyl. Eilys very much enjoyed both times but she was a bit more into it the first time, she slept through a lot of Peppa Pig!

Go swimming lots (done)

Swimming made Eilys come to life, she loved water and she had a lot more movement when she was in water. We tried to go swimming a much as we could. She loved being at Center Parcs as she was able to stay in the pool longer as it was so warm. She also had weekly hydrotherapy classes and we would go swimming at our local pool when we could too.

Wear Mummy’s wedding dress (done)

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Joe’s Mum cut a big hole in the huge train of my wedding dress and made Eilys an amazing little dress out of it and it was ready in time for our profesh pics. Every girl dreams of trying on her Mum’s wedding dress so this one was really important to me.

Play with some animals (done)

I have read a lot of the theraputic nature of interacting with animals so I really wanted Eilys to be able to play with lots of different animals. We had an Owl experience at Center Parcs, she played with my brother’s woofer Ollie-bear and we visited our friends Lisa and Suze’s gaff who breed bunnies to have some fluff therapy a couple of times. Eilys loved animals so much.

Dress up (done)

Eat lots of cake (done)

We decided that every single birthday that our immediate family had for as long as we had Eilys would be a celebration of Eilys, we would do something fun and the cake would be for Eilys (with the exception of Dylan’s birthday). Eilys loved cake. When she was able to eat cake we would smush crumbs for her or little bits of cake and she would munch away on them but as it got harder for her to swallow bits I would blend cake with yogurt or chocolate mousse for her.

Eat Christmas dinner (done)

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Christmas day 2015 was a very special day indeed. We went for a lovely walk as a family, we had a yummy dinner all together (Joe’s parents and Granny came to my parents house). I really wanted Eilys to have a proper Christmas dinner so I blended everything separately for her so she could taste all the different flavours. She munched on all of it and she enjoyed most of it (obviously she waasn’t overly fussed with sprouts). But she LOVED the trifle my Mum made. She ate 2 lots of it and then burst into tears when it ran out so I had to go and blend her some more.

Stay up and watch New Years Eve (done)

Technically this one was added after the fact. It was never planned. I thought it would be a nice idea but we had a really busy day New Years Eve as my parents and my Gran came over, I made afternoon tea and cake as it was my Mum’s birthday and Dylan was a bit poorly so we were all a bit knackered. I was hell bent on getting Eilys’ sensory room painted so I spent the evening in there and Joe was busy do some other DIY. Then it was nearly midnight and Eilys woke up. She wasn’t grumpy and she didn’t seem to want anything so we sat in the dark in our room and watched the fireworks. The memory of it and the serendipity of it makes us very happy and brings a smile to my face and a tear to my eye.

Have some professional family photos taken (done)

We recieved Eilys’ diagnosis on the same day that my Mum had her works christmas do so she had told her friends at work what was going on. They were/are such a lovely bunch of people and they had a whip-around at the do and bought us a professional photo shoot which was so touching and amazing, we were blown away! The photos are so precious. Then a week or so later we were at Center Parcs and we had some more taken so that both sets of Grandparents could be in too and these are wonderful too.

Meet a Celebrity (done)

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Taste lots of different foods (done)

One thing that Joe wanted was for Eilys to experience lots of different things and food was defo on top of that list. For as long as she could handle pureed food we tried to blend a bit of our dinner for her so that she coudl try a variety of things. She was a bit fan of cake, chocolate and ice cream but she also really loved curries (the spicier the better!) and fruity things. I went as far as blending some coleslaw for her once, a concept that Joe’s Granny couldn’t get her head around and kept banging on about and with a little chuckle and a head shake but Eilys liked it!

Lie on grass and watch the clouds (done)

Play in the back garden with Dylan (done)

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I was so happy when the weather started to improve last year and we could play in the garden. We bought a little 2 seater swing so that Eilys could lie on it as Dylan gently pushed her. Or we would just lie on a blanket and watch the clouds roll by. One day Dylan even found Eilys a worm to play with!

Paint (done)

Musical instrument (done)

Get muddy (done)

Get a certificate (done)

The time we spent at the Children’s Adventure Farm Trust in Millington was such a happy one. They looked after us so well. The place is amazing and everything was geared towards disabled children so perfect for Eilys. They had the most incredible sensory room that she loved, we had so much fun on the bouncy castle, with the animals and in the music room. Eilys was able to do some painting in the art room, she painted a rather modern art style mixed media collab with her brother using paint, crayons, sand, bubble mix and other bits and peices. She was also able to paint a teddy bear money box all by herself which now has pride of place on my “Eilys shelf”.

In the music room Eilys played various different musical instaments like the drums, a keyboard and various other precussion things and she loved it. She really lit up and when Uncle Jimmy came to visit one evening he wowed us all with his excellent drum playing skills that he didn’t know he had!

On the last day me and Eilys went for one last walk around the farm on our own (Dylan and Daddy were playing Thunderbirds in the playroom). One our walk it was raining and quite muddy so I took the chance and lay Eilys in the mud, on her side and let her have a little play and get a little bit messy, she loved it!

At the end of our stay our 2 play workers did a little presentation for us complete with a beautiful video of our stay and presented Dylan and Eilys with a bag full of toys each and this included a certificate for each of them. Our time there was honestly just magical and the memories that we made will last forever.

Have photo booth pics (done)

Have her nails painted (done)

Have a girlie night (done)

Like I said, we wanted Eilys’ list to be full of normal things that we would have wanted to do with her when she was little and as she was growing up and this is why we added paint her nails and have a girlie night in, these are things that we would have done as she’d got older. I bought her some Disney nail varnish that was peelable and non toxic and she would often have her nails painted. One night, after a day in Alder Hey we put on face masks (mine was a real one and her’s was smushed avocado), we painted our nails, we ate chocolate and we watched a few episodes of Friends. It was lovely!

Watch Granerie dance (done)

Sneak into somewhere for free (done)

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On May Day 2016 we all jumped into the car and went to Trentham gardens to watch Granerie (Joe’s Mum) do some garland dancing. It was a gorgeous sunny day, warm but very windy. We snuck into Trentham for free, cheeky, and then watched the dancing and had  coffee with Granerie.

Go to a Disco (done)

The last time Eilys went to Center Parcs we found ourselves at the disco one night. We all had a lovely dance about like nutters, Joe’s Dad particularly. Eilys loved the Hokie Cokie except the “Rar rar rar” bit which for some unknown reason made her cry!!

Sit on GPop’s Motorbike (done)

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Every Easter and Christmas my Dad, GPop, takes part in a Motorbike run. The Easter one involves donating Easter Eggs to children who are in hospital and 1000s of Motorbikes riding through Stoke and the Christmas one, yep you guessed it, involves donating Christmas presents to children who are in hospital and 1000s of Motorbikes riding through Stoke. We normally go and watch him. We meet up at the Harvester near Stoke City’s grounds to have breakfast and then we watch all the bikes ride past. We had a lovely time looking around all the bikes and then Eilys had a little sit on the back of GPop’s bike and we watched all the bikes go past. I think Eilys was a bit perplexed by the whole thing but Dylan had a fabulous time waving at all the bikers!

Going to Jodrell Bank with Daddy (done)

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Joe is a total space nerd! He took Dylan and Eilys to Jodrell Bank quite a few times to look around. Dylan and Eilys bought him a annual pass for his birthday and they normally go for a walk around the place and then have a picnic or lunch in the cafe if the weather is shitty.

Go Trampolining (done)

For Dylan’s birthday, my beautiful bestie bought Dylan passes for us all to go to a tramplining park. We had a great day and bouncing around with Eilys was so much fun. They showed us a safety video on the way in and Dylan spent quite some time looking for watches and phones in a foam pit as they showed people losing personal items in there on the video!

Go to a Carnival (done)

The same weekend that Dylan went to Suffolk with my parent we decided to take Eilys to a Carnival that was in Crewe. It was a bit last minute but Eilys was doing a bit better so we thought we would go. There was loads to look at but it was a bit weird being somewhere like that without Dylan.

Go to a Fancy Dress Party (Done)

Have a kiss from a boy (done)

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At the end of March Dylan and Eilys were invited to a fancy dress party by Dylan’s best friend Blake. Dylan decided to go as Spiderman and I really wanted Eilys to go as Harley Quinn and I really wanted to have a go at making her a costume. It was a lovely party and everyone looked awesome. Eilys made an excellent Harley Quinn!

On the morning of Dylan’s birthday we went to soft play with Blake for a bit of Friday fun before Daddy finished work and we could drive to the Yurt. We invited Blake to come along to. As he was saying goodbye to Eilys, he lent into her pushchair and gave her a kiss, her first kiss from a boy… so lovely!

Turn 1 (done)

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I didn’t dare add this to the list until the day of her birthday as I didn’t want to jinx it. Part of my knew that thinking she would live to be 2 was optimistic at best. I don’t fully understand how the statistics work really but the hospital said that it was likely that she could live 18m to 2 years but in actuality most SMA Type 1 babies don’t see 8 months old. Eilys turning 1 was a huge milestone and the day itself was so emotional and wonderful and also crushingly sad. As all our friends and family who celebrated with us sang “Happy Birthday” to her I had to walk out of the room as the reality of it all suddenly hit me like a brick. In my heart, I knew this would be not only her first birthday but her only birthday. I am so happy that Eilys had a birthday and I know how incredibly lucky we are to have been able to celebrate it with her. It was such a special day.

Have a party (done)

For Eilys’ birthday we booked out the village hall in Measham in Derbyshire, where Joe grew up. We were cautious about arrange it all as I didn’t want to jinx her turning One and then having to cancel things. We asked everyone who was invited to bring a plate or 2 of party food and we tried to keep other plans to the last minute. The theme was a street party. It all came together so well and it was such a wonderful day. Most of out friends and family came up for it and the whole place was just filled with love. The food was brilliant. Eilys had a bubblologist. She had bunting. She had beautiful flowers everywhere. She had 5 cakes (4 at her party and 1 for the daintiest breakfast cake smash you’ve ever seen). We asked all the people coming to the party to not buy her a present but to buy her a helium balloon as they were her favourite things… they were light enough for her to have absolute control over them and they always made her smile. It was the prefect day!

Thank you so much for reading this, I know it was a long one. Eilys’ list really helped us get though Eilys being so ill. It gave us something other than her terminal condition to focus on. It gave her and Dylan some amazing experiences  and allowed us to make some beautiful memories together. We filled her life with so much and I mean it, we really packed things in. I can honestly hand on heart say that even though Eilys had a painfully short life, it was filled with more fun, smiles and love than most people who live to be 100 years old.

xx

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