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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