Mother at Home: Child at the Hospital.

So much of missing Elisa is guttural.

Usually, when I miss someone, I either call them or text them. Usually the latter. I can keep in touch with my stepdaughter and nieces that way, I can call my parents who live in Finland. I can even write and receive simple sentences from my 5-year-old or have a chat with her over the phone if a need arose.

With Elisa, none of the above communication methods are usable. She is non-verbal, and cerebral palsy makes it nearly impossible for her to master any sort of meaningful movement in any of her limbs or body. She is deaf, and when she is poorly, she hardly ever tolerates her cochlear implants as she prefers to heal in complete silence that her body naturally engulfs her in. Her eyesight is not a lot better, even though she can recognise people and animated characters by looking at them. Still, eyeing Elisa through a screen knowing that it is possible she might not even recognise me on the screen at her end does not provide the equal comfort than actually seeing her.

So much of communication with Elisa is done through touch. We cuddle her to shower her with love. I stroke her hair, I gently trace her facial features with tips of my fingers. I tickle her, or give her a firm, strong massage. I smell her hair, the curve of her upper lip, where I can feel her breath. I love breathing in the smell of her breath when she’s healthy. When there isn’t that sickly sense that she’s got a flu,.

I can’t get any of that through the screen.

When she is not at home, the house feels utterly empty. Even if everyone else was filling the space, the lack of Elisa’s presence is so immense that none of us really know what to do with ourselves. Even the cat and the dog look like they’ve lost the plot, wandering around aimlessly, looking for something. Looking for Elisa. Even if she doesn’t do much, she does so much more than any of us realise, and it only comes painstakingly clear when she is not around to do it.

What is the hospital life like during the pandemic as a parent at home, when your child is an inpatient?

I recorded this voice clip on the 2nd of March. I attempted to answer the simple question of: “What is the hospital life with your child like during the pandemic, when you are the parent at home?”

I made it into a little slide show, with subtitles.

There are many reasons why me and Dan have made these care arrangements; why he is the one looking after Elisa at the hospital while I’m at home with Melody. One of the reasons is as simple as me being the one with a driving licence, therefore doing the supply runs between home and hospital.

Today is 9th of March 2021.

Elisa is still in hospital. I got to go and have a cuddle with her this morning before she got transferred to Southampton hospital with her Dad.

During the pandemic, Elisa’s muscle tone has been getting worse. She suffers from dystonia, which is “unintentional sustained muscle contractions leading to abnormal postures.” The lack of physiotherapy and occupational therapy may have contributed towards the worsening muscle tone.

Two weeks ago Elisa got admitted to the hospital due a lot of stress from dystonia – she was in so much pain. We took her in for the third time this year.

While doing their examinations the hiatus hernia was discovered nearly by accident, and since then we have discovered her fundoplication has loosened up as well as her hips are not doing really that well either.

She will have a surgery tomorrow. They will tighten up her fundoplication and get rid of that hernia that is letting her bowels push her lungs. I can’t even imagine how painful that has been for her. I mean, I’ve seen how much in agony she’s been – but to actually know how she’s felt…

 I just hope she will recover quickly and come back to being her happy self, without pain, as soon as possible. I am also so very scared. It’s going to be a major surgery.

Today is 12th of March 2021.

The surgery lasted 8 hours, but was regarded a success. Afterwards she was on a ventilator for nearly 24 hours in Pediatric Intensive Care Unit (PICU), but has already been taken off the ventilator and moved to High Dependency Unit (HDU) . I wish we could go up there with Melody to visit, but it’s not possible nor safe. Melody has been back at school, so even if the hospital would allow siblings to visit, we would not recognise it being safe.

Finally,

It is strange being home without Elisa and Dan. I’m trying to keep Melody as busy as possible, as this time around she has found it very tough indeed. She was so used to us shielding, all of us being constantly at home together, and all of a sudden half of her family is out of reach and mostly to be communicated with through screens.

We do not know how long Elisa will be in the hospitals for this time. She won’t only need to recover from the surgery, but most of her medications need to be fiddled with again to provide the relief from dystonia and other problematic by-products of her disabilities.

Will keep you posted…

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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Another One of Those Days

It has been such an emotional day that it would have been too easy to assume it to be the time of the month. 

Taking your daughter to a hospital is obviously intense, but with our rate of hospital visits it’s as tear-jerking as going to a dentist for a check-up. 

First time I bit my lip in aid to control my emotions today was when I learned she would stay overnight.

When I called to ask help from the organisation that provides our night carers, I didn’t expect to get a lot. It is not their purpose to provide respite for the hospital, so even as I explained that without the night support Elisa’s Dad would need to stay in the hospital with her, as she needs 1:1, I didn’t dare to wish to actually get a carer for the night.

But we did. Not only for the night but for the morning too. It meant no rushing, it meant breakfast, it meant a proper night sleep together.
I cried. 

Then I cried as our friend Dani promised she could pick Dan up after the night carer had started her shift, saving me buckling our sleeping toddler to a car seat and disturbing her night sleep. 

Can you guess what got to me most ?

Melody woke up with a startle. She had been asleep for about two hours already, so it was very much unexpected.

As I got her to my arms and rocked her sobbing body against me, I listened to the empty house. I could hear the neighbours; it was that quiet. And dark – as it had been just me downstairs, I hadn’t had many lights on.

Melody wouldn’t calm down. I decided to take her downstairs, and as I carefully carried her down the stairs, I saw her searching. I didn’t dare to say anyone’s name as I calculated it to make matters worse. 

We got to the lounge and she started to cry even harder as she saw Elisa’s bare bed and empty couch. There was no Dad playing on the xbox, there was no sleeping Elisa or her beebing monitors.

It was just her and Mummy. 

She cried so hard that her body was shaking with anxiety. I kept cuddling her, talking to her, even tried singing to her (poor baby), and then I resulted to giving her sugar. It stopped her crying for a moment; then she let out a weep.

We settled on a couch together. She was laying on top of me, resting her head on my chest. I hoped she would go back to sleep like that, but she kept staring at Elisa’s empty motorised bed.

I feel incomplete when my family is not together – I couldn’t even imagine how this toddler felt.

I then sent a message to her father. As he replied immediately, I video called him. 

How could I ever explain that immediate relief, when our 2,5 year old saw her father on the phone?

She took the phone, and the smile on her face… 

We let Dani know we would be picking up Daddy after all. 

From her big sisters clothes, Melody picked out Minion pyjama bottoms. Eagerly she dressed herself and I helped her put her shoes on. As she waited for me to lock the front door, she said to herself: “Good girl, Melody.”

When we walked towards the car hand in hand, she kept saying “Daddy, daddy, Daddy!” I looked down to her blond head – with her other hand she held Peppa Pig – toy tightly on her chest and there was spring in her steps. She was on a mission. She was to get her Dad back.

Once I got her strapped in her car seat, she pointed at Daddy’s seat and said again “Dada”. Then she looked at me and said: “Elisa”.

“Elisa needs to stay in the hospital,” I said in Finnish, “but we go and get Daddy.”
“Daddy”, she confirms.

After her Father closed his arms around her, she was pleased. I passed some clothes and other essentials for Elisa to the night carer, and we were on our way home. 

One staying in the hospital affects the whole family unit

Melody is still restless: her family is not complete. She is resting on her Dads bare chest at the moment as I sit with my laptop thinking of my first-born child in the hospital. How I miss her, but how lucky we are to have a familiar carer looking after her tonight so we can have a good night sleep at home. That is luxury; that is so much more in comparison to what we used to have.

But that is again another story.

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