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?

Have you read these blog posts yet?

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