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…

Did your kids ever have similar type of peculiar ways of thinking?

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A smell of mucus caused a panic attack

Melody has got a cough. It is nothing unusual for the time of the year. She coughs, laughs and carries on. She doesn’t complain or moan, she doesn’t let it to slow her down.

The only reason I mentioned it is the outburst of emotions it caused in me. She knew nothing of it as she was fast asleep, with rosy cheeks and lips healthy red. I could only smell the mucus that caused her to cough every now and then and it unnerved me. My own breath was caught in my throat, my hands suddenly shaky. I noted her colour and breathing patterns, all healthy and unaffected. I stared at her, scared for her life.

I was taken back to PICU,

when Elisa was in medically induced coma and a machine breathed for her. She was unusually still, colour so pale, dark circles around her eyes. She made no sound while fighting for her life.

Instead of Elisa though, I saw Melody hooked up in those machines. In present I saw Melody breathing evenly, but in my minds eye I heard the sirens of an ambulance, the beeping sounds of hospital equipment. I smelled the hospital.

I concentrated to watch sleeping Melody’s even breath while I battled to get my emotions back in control.

My child may die before me

I have had to face the possibility of Elisa’s death many times already. We were lucky that she came out of my womb alive, we were lucky that she survived her first week after her birth. So often she has fought and survived, and I have been by her side urging her on.

If Elisa was to go to a hospital now,

I would bat an eyelid in annoyance. I wouldn’t be scared for her. We have taken Elisa to hospitals so many times that it is like taking her to see a dentist. It is nothing to be overly anxious about.

Looking at my sleeping youngest child though I found myself paralysed with fear, even though she had no temperature, she was breathing effortlessly and the only signs of a slight illness were a smell of mucus and a cough. I realised I had never prepared for her death. The mere idea of it had thrown me.

You can never be prepared for such things and I know I’m not prepared for Elisa’s either, I am only equipped to battle with her to keep her alive – but to do the same for the one child that has never been admitted to a hospital since her birth…

Being Elisa’s mum is so different than being mum to Melody

There are things that I do on auto-pilot with Elisa, things that would throw me straight out of balance if I had to do the same for Melody. I don’t hesitate to clear up Elisa’s sick, suction her mouth and check that her airways are clear. I don’t think twice for placing oxygen prongs on her or performing chest physio. When Melody is sick, I have caught myself being frozen, having to think what I need to do next.

Melody is my healthy child.

She is the child whose health I do not have to worry about. That is how I carry on in my every day life. Only a smell and a sound of a cough threw it all out and I was confronted with the possibility that this small normally abled child could fall seriously ill too. What would I do then?

I restricted myself

and didn’t allow myself to gather her close to myself and hug her tight – oblivious to my distress, she had only just fallen asleep. I swallowed my emotions and went back downstairs, where the child who I am used to seeing unwell was laughing and giggling in her room as her night carer was getting her ready to bed. I washed dishes and tried to make sense of these whirling feelings of mine but came in no conclusion.

Maybe it was a PTSD symptom?

Have you ever experienced anything similar?

She is home.

I am so happy to announce that Elisa was discharged from the hospital ward on Sunday. Elisa couldn’t be more thrilled herself, even though she does love all the attention she gets from the staff at our local hospital.

Elisa laughed and giggled the whole way home.

I wish we would have had the cameras already filming when we had Elisa settled down on her beanbag. Usually, Melody would keep a safe distance from Elisa’s dystonic hands and legs, but this time she cuddled straight up to her. It was so sweet we were paralysed by the sight of it, only able to coo and aaw on point. Elisa was surprised and happy about her little sisters approach, and as usual, tried really hard to control her jerking limbs. 

It feels so good to have her back home.

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Under the Strain

Before it was all on us adults – and Ruby. Ruby was old enough to understand, and if not, we were there to listen and talk to. Every time Elisa was in the hospital, us parents played ball, conveying our feelings and doing what needed.

As said, taking Elisa to the hospital is so routine to us that it’s more of an annoyance than painful procedure.

There she is again, looked after by nurses and doctors who we know very well. She’s got chest infection: she is prone to have those.

Capture from the old Facebook-page.

First, it did not hurt much.

Then the terror on the youngest cry shook me, awakening me to see the situation with fresh eyes.

Before, Melody was too young to understand. She was easy to distract and she took comfort in continuing routines.

She is fooled no more.

She can clearly see her sister is not here and wonders why. She asks after her, not understanding why Elisa cannot come home. She misses her father, who is looking after Elisa during day hours. She knows something is not right.

She was quiet when we walked on the long hospital corridors. When we found her sister, she looked confused. There was too much going on in the room, nurse doing observations on the patient that is Melody’s big sister, a carer giving a report on Elisa’s being, Daddy asking for cuddles. Melody hid away behind furniture, found carers snack stock and helped herself. She couldn’t make sense of the situation, so she made distance to it.

It pains me to see her sisters confusion, her longing to have her family back. Her reactions to this is a unwelcome reminder of how this is not okay, how this is so unfair. Every day we endure apart, the more it hurts. In a way it is odd; Elisa’s record stay in the hospital is 101 days. So it “shouldn’t” hurt this much.

I keep fighting tears.

“She will be okay,” Dan keeps saying, misreading my emotionality for being worried for Elisa. I am, but I know she is going to be fine. She is on the mend, her colour is already better, and she is happy.
“I know,” I say frustrated, “but this, this is so unfair. Going in and out of the hospitals like this.”
“It is her life,” he says.
“It doesn’t make it more fair now, does it.”

Even though it is only the third night apart, I try not to make any assumptions about when my first-born could be discharged from the hospital. We just.. have to take it a day by day.

Sometimes
you have to be at your strongest
when you are feeling at
your weakest

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