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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Special Siblings Burden: our example from one weekend

There are times when I wonder about the effect on Ruby and Melody for having a disabled sister. They endure a lot. Only recently I watched them plough through an eventful day like it was nothing.

It all started on Friday.

In the afternoon it became clear all was not well in our household – after my swimming session with Melody she didn’t seem right. She was pale and unusually quiet; she only wanted cuddles. Had she swallowed some water? Maybe she overdid it at the pool?

Then Elisa came back from school and she wasn’t right either. She had had some paracetamol for discomfort at school and her school book noted that she also had had some chest physio for chesty and rattly cough at school. Oh dear, we thought.

She didn’t yet have temperature and staff from Julia’s house, who had come to look after Elisa for couple of hours, decided to stay indoors with her and do quiet, relaxing activities.

Dan had a rare evening out that day

In the evening, Ruby and Dan went off to the local SEND hustings event that Dan had organised, and I was home with the younger girls. Our CHC – funded carer showered Elisa and got her ready for bed. I had no trouble getting Melody to bed – she hadn’t perked up at all since coming back from the swim and she fell asleep without a hitch.

I came back downstairs to find that Elisa was already tucked in bed too, but she was awfully pale. We attached the Nurofen FeverSmart Thermometer under her arm to keep an eye on her temperature as I had that feeling… (link is to Amazon page; not affiliate)

Sure enough, in just hours time her temperature spiked up to 38 Celsius Degrees.

But that’s not all, folks!

Melody woke up with blotchy red cheeks. She was hot, but shivering. I found a traditional thermometer to check her temperature and it climbed up to 39.3 Celsius degrees. Melody complained that her arms and legs hurt, so I took it that she felt achy.

I send a cheery video message to Dan saying:

“Hello there! The one time you actually get to go out and this is what happens and what you come home to… To poorly Elisa who has got temperature of 38 degrees and Melody, who’s got 39.3. Both have had some paracetamol, Elisa is with a night carer and I’m just taking Melody back to bed… I hope you have had fun and take your time, all is otherwise good here…”

Maiju, while taking Melody back to bed

Both of the girls reacted positively on the pain killers, but temperatures spiked back up when the medicines wore off.

We had very restless night with both girls

In the morning it was clear Elisa was struggling. Her saturations (oxygen levels in her blood) kept dropping; she was working hard to breathe and her temperature was too close to 40 Celsius. We called our local hospital where Elisa has open access to and started arranging to take her up there.

We had to take Elisa to the hospital to be checked out

I went to wake Ruby up with the news that we are taking her sister to hospital. As a sign of what an amazing special sibling she is, she didn’t panic about it – she has experienced such wake-ups before.

Her first words to me:

“Okay, well I don’t have to go to boxing today, I could always catch up during the week so don’t worry about that, it would be too much hassling about if we went.”

My beautiful step-daughter.

Her first instinct was to make it all easier for everyone.

She loves boxing and I never want her to miss out on anything because of her sister’s conditions, but she insisted it was fine.

She was right – it did make the day easier.

Around the time she was supposed to be boxing, she was looking after Melody while I dropped Dan and Elisa off to the hospital.

Later, me and Melody took Ruby home to her mother’s place so she could enjoy more of her weekend and to better her chances of not getting what her sisters had.

Melody hadn’t been herself all day.

She was tired, but had no breathing difficulties. There were no rashes. She didn’t even cough. She didn’t really have an appetite, but she drank fluids okay. When the pain relief was working her temperature was only mild.

Late afternoon I had just noted that Melody’s temperature had jumped up again and was wondering if it was time to give her more pain relief, when I got the news that Elisa could come back home from the hospital. They had diagnosed her with viral throat and ear infection; her lungs and flu test were clear.

It was time to witness 3-year-old Melody’s special sibling skills

When your sister is disabled, your own needs get surpassed often. Even when you have a temperature of 39 Celsius degrees, you might have to be wrapped up in clothes and climb up to your car seat. It doesn’t matter if you don’t want to do it and that you feel horrible, as you do have to pick your big sister up from the hospital with your Mummy.

Thanks to Christmas decorations, she was a superstar

To start with, she did complain and cry as she felt achy and uncomfortable. All she wanted was “mummy cuddles”, and not to be sitting on her own in her car seat. I felt for her and tried to think of something to cheer her up…

So, I made the car trip into a game of “spot the prettiest Christmas lights”. Thank you all in Bournemouth and Poole, who already have decorated their front gardens – you made it all so much easier for me and Melody! My poorly girl forgot about her aches as she kept looking out for Christmas characters, stars and snow projectors and colourful flashing fairy lights.

Melody looking at Christmas lights last year in Bournemouth Gardens.

Soon we pulled up by the hospital and got the wheelchair girl and Daddy back in.

Melody then would have wanted to have Daddy sitting next to her, but that is another impossibility when Elisa is in the car as Elisa needs an escort that can assist her during the car journey… Again, before Melody had an epic meltdown over the lack of cuddles, I was able to divert her attention to the different flashing Christmas decorations. Would we see a reindeer one? How about an elf?

The following day both of them were better and only had mild temperatures.

Those events keep running through my head. What little Melody had to endure even when she felt terrible herself; how Ruby didn’t only miss out on her boxing lesson but a weekend with her sisters. Elisa can’t help her disabilities; she has breathing issues without a cold, and with an illness she struggles more than others in our family.

I keep feeling guilty for strapping Melody into her car seat when all she wanted – and needed! – were cuddles and snuggles with Mummy on a sofa. I know we had no other choice; we needed to get Daddy and Elisa back home and we surely did not have the money for a taxi. Also it was a weekend and it was not planned appointment, so we could not use the hospital transport for the trip.

I do not feel bad that she was with us when I took Ruby home, as then her temperature was down and the trip seemed to cheer her up. The main difference is in the timing.

I keep worrying for them all. Could I have done something differently? Did we do the best for all? Do we do all we can for all of them, the best we can for them in the long run?

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3-year-old’s logic with a step-family: which house is whose and whose mum is who?

We are blended family or “step-family”, which in itself is nothing unusual. Dan has a 14-year-old daughter called Ruby from his previous relationship, and he’s got two daughters with me – 6-year-old Elisa and 3-year-old Melody.

“Ruby’s house”

Ruby lives with her Mum and comes to ours every other weekend and sometimes between. Melody has started to question it recently, asking every day when Ruby will be with us and that where she is. She does know where Ruby lives – she calls it “Ruby’s house” – and like all of us, she misses her when she is not with us.

To make matters more confusing for a 3-year-old

Elisa has been going to Lily’s Place for respite care once a week, staying there overnight. During school holidays Elisa has gone there for two nights a week.

Therefore Melody is quite used to seeing her big sister off to Lily’s place that she promptly calls “Elisa’s house”.

How does Melody view this?

Melody is the only one who doesn’t do “sleepovers” just yet. As stated earlier, she calls Ruby’s mum’s place as “Rubys house”. Lily’s place is “Elisa’s house”.

The house where we all live in she calls as”Melody’s new house”. “Melody’s house” is the old place where we moved out of in October 2019.

Aren’t we lucky as all of our children already have their “own houses”?

In Melody’s new house, there is “Elisa’s room”. The biggest bedroom upstairs is “Melody’s room”, where she shares a bunk bed with Ruby. She claims the bottom bunk is hers and the top one is Ruby’s.

Order is crucial.

It get’s weirder though. As ever since Dan quit working and took on a carers role for Elisa, Melody has learned that Daddy looks after Elisa and Mummy looks after her. Now she has started to tell that Daddy is “Elisa’s Daddy” and Mummy is “Melody’s Mummy” – and she laughs and yells “Nooo!” if you correct her saying that Melody, Elisa and Ruby has got a same Daddy and Mummy is also Elisa’s Mummy.

So just that you know

– all of the girls have a same father, and Elisa and Melody are biologically my daughters. Do not believe the youngest of the family…

I can’t wait when her mind is blown with the fact that Grandma is Daddy’s Mum, and “Mummi” is Mummy’s Mummy and “Ukki” is Mummy’s Daddy…

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