Three Dorset based Charities have made our Christmas full of joy

Three local charities have done so much for our family for Christmas that there have been so much to be thankful for!

Julia’s house

Dan, Elisa and uncle Andrew as their driver got to go and meet some professional football players and their manager at the hospice. These are Dan’s posts about it:

The photos are from Julia’s house Facebook Gallery, photos taken by Simon Ward.

Dan’s photo:

AFC Bournemouth’s video about this event

Dorset Echo wrote about the event here

Amelia’s Rainbow Toy Appeal

Santa and an Elf came to visit us bearing gifts for all of our children and I could not be more grateful. Knowing our application had been accepted took a huge pressure off my shoulders: I knew my children would have so many lovely presents to open this Christmas thanks to Amelia’s Rainbow and to all, who had donated to them.

Unfortunately Elisa was asleep when they came to visit and Melody felt too shy to pose for photos with Santa, so we have no photos from the occasion.

We let Melody choose one gift from her sack of presents to open then, and ever since the Barbie and Unicorn have gone with her anywhere – literally, anywhere. She has slept with them, taken them to have a bath with her, and I’ve allowed them in the car too… Elisa and Ruby both have all of their gifts yet to be opened, and Melody has more too waiting for her!

Thank you Amelia’s Rainbow again for all this joy!

The Dorset Children’s Foundation

Within December, we’ve got more than four events with the DCF, the regular football sessions excluded from the count.

A Christmas party

where we got to see Santa, climb on board of a fire engine and Firefighter Melody got to spray water with a firefighters hose.. There were Squidge and Pop doing bubble magic and DJ Nose It got us all dancing… with a princess and a Spiderman!

Elisa slept through most of the party, but she had her friend Dolly looking after her the whole time. Everyone should have a friend like Dolly – we love her!

Comotion

Christmas edition of Comotion dance session was another blast. We all loved it, and not only because the ever-so-lovely Dorsey Bear came to visit!

Afterwards we walked to around the corner where there were some market stalls and animals to see and cuddle from Mill Cottage Farm Experience – Melody’s favourite was the guinea pigs, Elisa loved a bunny rabbit and I liked the goat. There were also a sheep, alpacas (that I accidently called llamas – ups), turkeys, ducks, chickens and roosters.

Honeybrook Farm

We had bought tickets to Honeybrook Farm, Wimborne, through the DCF. We went to see some lovely farm animals and played with tractors and in the play equipment in muddy conditions for one lovely sunny afternoon – and we had a tractor ride, a tour led by a funny Elf and visited the Santa’s Grotto, where we got to have our photos taken with Father Christmas. Kids got to choose their gifts, which was a nice bonus, as even the teenager found something she was interested in from the options available! All and all, we had a nice, relaxed family afternoon in a friendly atmosphere, surrounded by friends and other visitors.

There wasn’t enough room on a tractor ride for Elisa’s wheels – so Daddy and Elisa met us in the end of the ride.

Melody thought the pigs were the best!

Amazing big sister Ruby followed her little sister everywhere, making sure she was okay and played with her – even if it meant getting muddy! Ruby truly is the best big sister.
Because Elisa’s wheelchair would not have fitted in the Santa’s grotto, Father Christmas came to see Elisa outside. Melody was already inside eagerly waiting for her turn and I was there with her.
Elisa loved this extra attention, and amazing Ruby is making sure Elisa is okay.
I wanted to have a family photo with Santa, but with Melody waiting for Santa eagerly inside and Elisa not being able to follow with her wheelchair it seemed to be impossible, even though the staff were very accommodating to our family. Melody would have got very upset if I was to take her outside again promising that Santa would be there, when she knew everyone else went to see Santa to the next room.. I almost cried as I got so upset about it – but then Dan carried Elisa in and all was good.
Can you see it from my smile how happy it made me, having this photo?

The Giggles

Giggles is a soft play centre in Bournemouth where we have DCF session once a month. Towards the end of the Christmas period we have a Christmas spectacular party awaiting us at the Giggles, which will be fun!

Elisa with Patsy, the co-founder of the Dorset Children’s Foundation

I feel so incredibly lucky that we have already had so much to do this December and more still upcoming – as to previous years our activities were focused at home and highlights would include seeing “only” family.

It is so much easier to be active when a whole community full of friends is waiting for you to join in the fun; people who understand your struggles and need no explanations. When previously we had nothing specific to look forward to, only having our fingers crossed for a healthy holiday season without hospital stays, now look at us, having a calendar full of fully accessible events for the whole family.

I feel so blessed to be living in Bournemouth, with these brilliant local charities giving so much to my family. Regardless what next year brings us with Brexit and the new UK parliament, I feel reassured that there are these amazing organisations fighting our corners and giving our family so much opportunities to enjoy life and be part of it all.

All the charities mentioned

All the companies mentioned

We wish You Very Merry Christmas!

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We completed the Kids Kilometre

It so closely didn’t happen for us. The plan had been for Melody to run with me and Elisa to be pushed by Dan. On the day Melody woke up feeling poorly and ended up being sick, so she was out of the game.

Elisa wasn’t though.

Once I gathered my wits, I pushed her out of the house and onto a bus. I was determined to make it special mummy-daughter time then with Elisa.

I met up with the others close to the starting point and got our T-shirts on. There were a bunch of us running for the Dorset Children’s foundation – a varied group of kids with different difficulties and mobility issues. For many of them, you couldn’t see the struggles they have gone through to be there today, ready to run for the charity that gives so much back to them.

Me and Elisa, all ready for action!

I didn’t know what to expect really – I had never done anything like this before. I didn’t have time to feel self-conscious though as my amazing daughter kept me present in the moment. She was so excited about the attention she got from our friends and people walking past: she was so happy to be out and about and meeting people. She kept me grounded, I didn’t even have time to feel nervous.

Then they started the countdown

It was time to go. First we were surrounded by people and I was conscious not to push into people with Elisa’s chair. Soon the faster runners had got distance to us and we had more space around us. I picked up speed – for Elisa’s delight.

Elisa turned out to be the best personal trainer ever. The faster I ran, the more she giggled.

Naturally I wanted to see her enjoying herself as much as possible, so I ended up pushing her faster and faster. I had her backpack on my back that had her emergency medications, syringes, hearing stuff and all the rest of it in it and on her wheelchair, I had her suction machine, saturation monitor, oxygen cylinder, feed pump and whatever else on.. Above all her wheelchair is not designed for such purpose as running. It is not the lightest or easiest to handle as you try to be agile and run, but those technicalities aside – I had fun. She had fun. I didn’t run the straight line with her but went for the uneven terrain where she would get the more exciting bumpy ride that I knew she would laugh at, and I curved the wheels like on a snakes path.

She loved it.

I got sweaty and red in a face quite quickly, but I had this silly grin plastered on my face that glowed from within. It came from seeing Elisa enjoying herself. It came from her laughter and excited posture. It came from the buzz around me, from all these kids running with their mums or dads, the audience cheering.

So many firsts…

She had been snickering and giggling the whole way, but all of a sudden she fell quiet. She had focused on the the crowd. I had pushed her near the audience and held her arm out, which resulted in her receiving a couple of high fives. It quieted her down.

As she has both hearing and visual impairment, touch has always been very important sense to her – not only we use tactile sign language called “Tassels” with her, but she gets so much comfort from cuddles and simple touches. So, to get high fives from strangers while being pushed in her wheelchair was another thrilling experience for her.

Then she heard the clapping.

She had her cochlear implants on during the whole race and when people were clapping for her, she closed her eyes and concentrated on it. Even though I could not properly see her face and all the emotions it was conveying while running, I saw concentration and awe.

Coming closer to the finish line

I was surprised to feel sad. Even though I had found it more tiring that I care to say to push her, I didn’t want this experience to end just yet. They announced Elisa’s name and how she was running for the Dorset Children’s Foundation when we crossed the finish line, and I was teary-eyed. I didn’t see anyone I knew immediately, but lovely event organisers took us to get our medals.

When she was handed the medal,

I found myself welling up with emotion. I managed to hold it in till she had got her “Finisher 2019” t-shirt and then a tear or two rolled down my cheek while I pretended to look for a way out with the wheelchair. I felt so proud of her. I know I was the one that did the sweating, but with everything we’ve gone through together, I had never imagined this moment – of her getting a medal for finishing a race in a marathon event.

Such an absurd idea!

When she was in NICU and we feared she might be brain-dead or when she almost died because of a nasty chest infection when she was 3 and was in medically induced coma in paediatric intensive care unit in Southampton… or even just 2 years ago when our daily routine of medications and feeds took 24/7 in a way that we had no rest at all, before we had sufficient support in place.. If then someone would have told me that in just few years she would be handed a medal for finishing a race in Bournemouth marathon event… I am not sure what I would have thought.

When we’ve only been concentrating on surviving for so long, doing something extra curriculum like this is so out of the hat crazy that it is hard to wrap my thoughts and feelings around it.

3-year-old Elisa fighting for her life in PICU in Southampton, only 3 years ago now.
But look at us now!

After I had found the others and exchanged couple of emotional words, I found refuge at a cafe in Lower Gardens. Once I had given Elisa her midday medications and put her lunch running through the gastrostomy tube, I just hugged her and cried. I cried of joy, pride and for the amazing experience we just had. I cannot even explain fully why I was crying. I was just so freaking emotional.

Want to see the DCF group run on a video?

Alex, who supports the DCF’s work, ran with our group of kids taking video and photos of us. Elisa loved him and posed for him every time he came close with his camera, and all the footage show the atmosphere – she was so happy to be there. By the beach, breathing in the salty sea air, feeling the wind and making Mum run. Most of the photos of us by the beach are from him!

This is his video:

Not to forget,

All the children that took part in our group “challenge” really overdid themselves and had fun. With that, through our donation page we’ve raised a staggering 1 622 pounds with Gift Aid! How amazing is that?

That all will go to Dorset Children’s Foundation “Accessible for All” initiative. Read more about it here.

Elisa with Patsy, the co-founder of the Dorset Children’s Foundation (DCF).

I am not sure how much longer the donation page will be open for donations, but last time I checked, it still was. If you want to donate a pound or two after reading our experience, I would be so honoured if you did so in here: Kids Kilometre. It all goes for very good cause; it gives families like us opportunities to play together, to make family memories. Thanks to the Dorset Children’s Foundation Accessible for All initiative, that this money is raised for. The DCF does other important work too, check it all out from their website here.

Thank you – I’m just off to dry my tears away. Again.

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Our best ever Summer Holiday yet

I do feel inferior talking about our holidays even though it was the best yet for us. We did not travel within UK or abroad , nor did we visit any museums or amusement parks. We didn’t go camping or glamping and we didn’t go to any festivals.

Such things are expected of the “best ever holiday”, right?

Even though we did not proceed on doing mentioned activities, we still did have the best summer we have had yet as a family.

So what did we do?

Monkey World with the DCF

The Dorset Children’s Foundation “DCF” funded a fun day at the ape rescue centre called Monkey World at the very start of the holidays. We were ecstatic – well, I was at least as I’ve never been and Melody was all keen to see chimpanzees!

Notice sleeping Elisa on the background… She slept through the whole thing.
Melody enjoys travelling in the Tula toddler carrier, that I got from Finnish shop called “Ipanainen.fi“.

We had a lovely day, never mind that Elisa slept through the whole thing.
Maybe she dreamt of monkeys though?

Played Football with the DCF

These football sessions are such a safe place; there are footy related games for those who can and want to join in, but no-one is looked on badly if you decide to run around the hall playing chase with your Mum instead or have your very own game going on with a wheelchair football.

Neither are you judged if you happen to fall a victim to your emotions and have a temper tantrum.

There are only few opportunities where all parties of the family can join in the activity fully when one is physically disabled – it happens so easily that the disabled is on the sidelines or then the siblings. 

These football sessions are for all; all of our three children love to join in the fun. Well, after all, this is “Accessible for All” Football arranged by the Dorset Children’s Foundation. 

Colour sorting is very important for our 3-year-old.. So at one session she managed to gather all coloured practice plates and balls and sort them accordingly.

The DCF Fun Day

We only came for the afternoon part of the fun day – so we managed to get some lovely cake, then burned off those calories with playing indoor football and dancing to the beats of the amazing DJ Nose It !

Saying thank you after a nice game of football!

Launch party of the DCFFC

As we already had been enjoying the football sessions arranged by the DCF, we were excited to attend the Family Fun Day that celebrated the launch of the new football team.

Can you spot Elisa and Ruby in one of the photos from the Dorset Echo’s news article? You can check it out here.

Most importantly – we saw friends and Elisa got some lovely cuddles with a younger friend of ours!

We went swimming at BH Live Leisure Centres

Littledown

We do like the pool in Littledown. It is all wheelchair accessible and we go for a swim there every so often.

Pelhams

Our favourite Leisure Centre has to be the closest one to us though, but not because of it’s proximity. We love how the changing area for swimmers is an open area and so we can get changed as a family. The disabled changing facilities include an essential hoist, and there is a hoist to the warm pool too.

About to go for a swim!

Mummy – Daughter – quality time with Elisa

It’s rare that I get to spend one on one time with Elisa. So on a day when Melody was in nursery, I took Elisa out. Just me and her.

Elisa needs an escort in a car in case she needs support with her breathing or dystonic episodes, which is why it’s not safe for me and her to drive anywhere alone – I need another adult with us. That naturally limits our options for quality one on one time, which is why we went for a walk.
We went through Slades Farm and the woods – Elisa loves a “bumby ride” and it’s good exercise for Mummy to push her along the naturally uneven sandy pathways.
We went shopping to the Julia’s house charity shop at Wallisdown. Elisa loved the guitar and I found some clothes for the kids too.

Attended Julias House event called “Housemates”

Julia’s house arranges these events called “Housemates” during holidays and half-terms that are designed for the whole family. The events are relaxed, offering parents a chance to enjoy a cuppa and a chat with other parents when their children take part in supervised play.

Melody was so independent and went off to play with the Julia’s house staff and other children. She enjoyed some arts and crafts (like in the photo) and decorating cupcakes.
That gave me an option to enjoy uninterrupted cuddle and play with Elisa..
We even managed to have a civilised cup of coffee together, me and the father of my children, while our offspring played happily with Julia’s house in the next room.
Not to forget who is the favourite here for Elisa.. Even as she does enjoy Mummy cuddles, she is such a Daddy’s girl!

Picnic at Moors Valley

Dan arranged to see a friend of ours at Moors Valley. We walked around the pond and then settled for a picnic.

It was my first time to travel on the Moors Valley Railway. I was so excited!
Elisa didn’t travel in her wheelchair but had Daddy cuddles the whole way through. She loved it!
Our labrador Freya was excited to be with us on the train ride.

Random moments

We had had a lovely swim session with other families with disabled children. We were hungry and it was raining – so we had a picnic in the car. Why not?
We enjoyed a lovely pub lunch with family in celebration of Ruby’s birthday.
We attended “Noahs Fun Day” that was organised to raise funds for essential housing works for our disabled friend. Here Melody is having a break from the bouncy castle and enjoying a lovely cupcake.
While Melody was in nursery, we had a shopping spree with Grandma at Castlepoint. Here we are about to enjoy some well deserved coffee and cake! Well, cinnamon swirl for me.
The DCF had organised a Sensory Disco, which we enjoyed. Here the sisters were having a breather in the sensory room – one chilling, other not.
Our friend Dani took Melody and Ruby out for an afternoon of minigolf. Here Melody is all ready to go!
Other day and walking hand in hand with a friend..
Icecream after Elisa’s appointment at Poole Hospital. Ruby, Daddy and Elisa had attended the appointment, and me and Melody had spent that time at the playpark.

Moments at home

Melody is helping Daddy to make dinner.
Building with Dublos..
Painting nails as a reward for letting Mum to trim them first…
Loads of lovely cuddles..
Baking biscuits with Mummy…

How come was this the best summer holiday yet?

This is something any family with a child with complex medical needs will agree on.

Canford Park Sang

This was best holiday yet, as we all stayed home. Elisa didn’t end up being admitted to hospital once. She was poorly with a tummy bug for couple of days, but that is so minor that is not even worth properly mentioning. Honestly – even as we lacked the confidence to book anything and make certain plans because of last years experiences, we ended up having the most active and loveliest time we’ve had during holidays. Happy, content time, as we were all healthy enough.

Isn’t that amazing?

Did you pay attention?

Most of the activities we enjoyed as a family were arranged and funded by charities like Julia’s house and the Dorset Children’s Foundation. Both of these charities are really close to my heart and our lives would be so much poorer in so many ways without them.

Which is why we are raising money for the Dorset Children’s Foundation.

Did you read about that here yet? Most importantly, if you could spare a quid or more, have you donated here?

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