Who is Elisa?

What kind of a person is she? What does she like or hate? Who is she?

Elisa is funny & cheeky little git.

She has a wicked sense of humour. 

Watch her, as she will try to cause havoc. She will try to pull the leads attached to her knowing you will come to tell her off, which she finds hilarious! In similar fashion she will try to flick her implants off her head knowing that you will soon appear to put them back on her.

She loves rough and tumble. She loves making a mess. She loves water: she loves swimming and splashing and playing with water. She loves sensory play and bright lights. She likes exploring with her sense of touch. She finds bubbles fascinating. 

Elisa is happy 5-year-old.

She is a content little girl, who only cries when there is something terribly wrong. Crying is her last resort; if you hear it, you go running to her.

She cries if she is in pain. She cries, if you keep doing something she has tried to say “no” to numerous times and she cannot think any other way to get out.

Usually, you see Elisa smiling and laughing. That is her. A happy little soul. 

Elisa loves Futurama. 

TV has always mesmerised her. She could easily spend the whole day watching cartoons. Though she is picky! She will protest to Peppa Pig or anything too babyish. She used to love Frozen, but that does not take her fancy anymore. 

She likes the films Moana, Coco and Angry Birds. 

But she absolutely loves Futurama. Her favourite characters in it changes periodically. It used to be Dr Zoidberg, now it is Bender. 

She cannot speak, but she won’t stop talking 

Even though there is no language as such that she can use to communicate with, she expresses herself colourfully with facial expressions and body language and audible squeals. 

She will make choices by smiling at the object she prefers and following it with her eyes. If she doesn’t really mind, she will not react either way to the presented choices. 

She says yes with a smile.

She says no with a frown. Sometimes she closes her eyes and pretends to be asleep, which is another way of saying no.

Elisa does not like 

heavy metal and/or rock music. She prefers clear melodic music with simple instruments that is easy to listen to with coclear implants. She loves Frank Sinatra’s voice! 

being left alone. With her medical conditions it is vital she is not left alone anyway, but if she realises she is alone it terrifies her. She is happiest when someone is touching her, when she can sense someone’s attentiveness. 

there are a couple of episodes of Futurama she does hate with passion. She will cry if you make her watch the whole episode of  “Yo Leela Leela” (Season 6, Episode 19) – especially on the bit where the other TV shows are trialled on the orphans.  Her absolute favourites are “Why Must I be a Crustacean in love?” (Season 2, Episode 9) – especially the bit where Dr Zoidberg lifts weights in a gym – and “Clockwork Origin” (Season 6 Episode 9), especially the bit where robo-dinosaurs are fighting and Fry is almost killed. 

She hates being on her tummy. With poor head control, her face is pretty much squashed against the floor if she is put on to her tummy. She hates it. 

She picks favourites.

Mummy used to be her favourite, but for years now she’s been a devoted Daddy’s girl. She picks favourites from all the people who care for her, from school to hospice and respite services. She reacts in bigger measure to people she likes more.

She will give me a nice smile – she will grin like a maniac to her father.

Elisa loves people and attention. 

It is best if she can have as many people admiring her as possible. She’s never been shy, and unlike her mother, she loves being in the centre of the attention. She loves watching people’s reactions to her; she loves big smiles and expressive faces! 

She understands tassels – a tactile body sign language which is used to let her know what happens next. Touch is important to her, not only in comforting way, but as a way of communication too. 

She is interested in others and likes people watching. She gets entertained by watching kids running and jumping.

Traffic has always fascinated her: she is never bored at a bus stop if she is able to watch the cars go by.

She loves being out in fresh air, she adores the sunshine and wind on her face. The best place to be is being cuddled; though do not overheat her, she does not like being hot and sweaty.

Elisa is diagnosed with

  • cerebral palsy, which makes her immobile. She cannot walk or sit unaided. Her cerebral palsy is described as dystonic and dyskinetic, meaning uncontrollable and involuntary movements of her limbs; also, she gets really stiff and suffers from cramps.
  • deafness; she cannot hear a thing without her cochlear implants 
  • cerebral vision impairment: she is registered blind. She can see, but her brain muddles the visual sensory input a bit. Also, she’s short-sighted.
  • epilepsy
  • reflux and unsafe swallow; Elisa is completely tube-fed

But as you now know, she is not her diagnoses. 

Who is she? 

An outdoorsy little geek, who loves being in the spotlight of attention.  A sassy girl, who likes a violent robot Bender and adores Frank Sinatra’s deep voice. She is my precious first-born, who is perfect just as she is. 

PS. You might know her by a different name – read here why she carries a nickname here in the blog!

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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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What to do when you see someone different

I’m hesitant to let people know about Elisa. More precisely, I waver telling people about her disabilities. I am not ashamed of her. I do not think I could be any more proud of her!

But people get scared. Emotional. The pity slashes through their eyes. They don’t know what to say or do.

I do not want anyone’s pity.

I’m sure Elisa doesn’t want it either. She is just a kid who has come out to have fun with her family. She is excited about the activity we are about to do, just like our diagnose free toddler.

Luckily visually impaired Elisa might not be able to see the looks.
But we, parents and Elisas siblings, surely do.

I am so grateful

for the people who say hi. Like that mum and daughter at our local leisure centre. Me, a carer and Elisa were enjoying a swim in the teaching pool. They came around smiling and said hi, asking for Elisas name. Then with huge grins on their faces they commented how she surely seems to love the water.

Elisa had been laughing loudly as me and the carer took turns helping her to enjoy the pool water. She splashed with her hands, and floated so we only needed to have a hand under her neck for support. The mum and daughter had delighted wide smiles on their faces when they examined Elisa’s joy.

We had a pleasant chat. As usual, I didn’t mind telling about Elisa’s disabilities or especially about her likes and dislikes. Once they left I felt warm inside, and Elisa – as always – had loved the attention.

It was such a different experience

to the incident on a bus some time back. Before Elisa turned 3 and were eligible for a Motability car, we had to travel everywhere by bus. It wasn’t always pleasant.

Once, I was sitting next to Elisas wheelchair on a bus and a man across the disabled spot kept staring at us. It was so intimidating that I kept my eyes on my child, distracting both me and her. Then he asked:

“What’s wrong with her?”

I should have answered with nothing. As there is nothing wrong with her. Instead I answered with a couple of diagnosis and the notion that Elisa was born prematurely. Usually that covers all the coming questions and we could move on from the disability to other things. 

“Well,” he looked straight at me and with some emphasis he said “That’s because you ate too spicy food”. He said it like it was the truth. That that’s why my daughter was born early, that’s why she is disabled now.

Maybe he needed that. Maybe he needed to place the blame somewhere. I surely didn’t need to hear that though. I had blamed myself enough for everything already. 

I didn’t have spicy food when pregnant.

I followed all recommendations religiously. I controlled my gestational diabetes with diet, I ate like clockwork and only what I was allowed.

Still, my placenta malfunctioned and with that, my body nearly killed my baby.

If he had just nodded and left the conversation to the diagnoses, I would have been fine. 
If he had moved on from the medical diagnoses to find out who Elisa is, I would have been delighted. I’m not my blond hair or my weight, nor is Elisa her diagnoses.

He didn’t, he finished the discussion with that accusation and left me feeling crushed. 

When you see someone different, 

please be like the mother and daughter. You do not even need to say anything – a smile brightens everybody’s day.

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I was not supposed to be that woman.

Have you ever thought of your life as a film?

A fantastic movie in making, with a start (birth) to preparation (childhood), the catastrophic problem (teenage years – young adulthood), climax (adulthood – middle age) and the end (death). 

I definitely have, and I had a great plot plan for it.

I was to have an encouraging upbringing and during teenage years, I was to find my true love, the One. As a clever young adult with the True Love on my side I would work hard  to get my degree in something that would give me the tools needed to save the world. It might have been politics, a career in teaching that is highly respected profession in Finland or a degree in journalism, on my way to uncover the hidden truths in society. Then, as a qualified professional who already had a respectable work experience under her belt, I would safely ease myself to motherhood and have an even number of children – either two or four, take a pick. While nursing my offspring, I would not stop working; family coming first, but still putting my invaluable effort in to saving our universe.

Life disregarded my plot plan. 

I didn’t find love within my teenage years, and I was certain I would never find it. Frustrated with my Life’s lack of following my will, I decided to trash it all. Instead of getting a degree, I flew off to Australia, where I spent 2 years backpacking and getting work experience in customer services and on a banana farm.

Back at home, I started studying Tourism, forgetting my ambitions for saving the planet – my plan then was to save myself by living in exotic hidey-hole, as away as possible from a normal every day life. While learning about aspects of Tourism and Business, I escaped yet to another country to do an Erasmus Exchange year.

As I had no idea, I fell in love with an English man. As shocked as I was, I did try to finish off my degree, but ended up getting up the duff. Well, as flexible and amazing as Finnish Higher Education is, I planned to finish my degree while nursing my baby. 

Well, our baby was born disabled. 

No, we did not expect it. It all happened so fast. While my waters were whooshing to the floor, midwives heard from the baby’s heartbeat that she was not doing well. As she was delivered promptly and resuscitated on the pregnancy week 33, she was then taken to NICU. Three hours after her birth, I saw her for the first time.

Two months later, 

she came home to us. We still clung on to the hope that she was just a premature baby, healthy and normal otherwise. 

We were proved wrong. 

First, she was diagnosed with profound hearing loss – she could not hear a thing, unless her ears were pressed on a loudspeaker in a heavy metal rock concert.

Then we learned she has got cerebral palsy. She might not ever walk, or even sit independently.

Before long, we were yet to find out that she had a cerebral vision impairment, which meant her brains was not great translating the visual messages her eyes were sending it. She was then registered blind.

Finally, she was diagnosed with epilepsy and reflux. Now, she is tubefed and she has a strict daily schedule of around the clock medication. She doesn’t go anywhere without a portable oxygen cylinder, unless we have an oxygen compressor in the room as she is rubbish at breathing without aid.

I couldn’t finish my studies.

I have not been even able to think about going back to work, I am very much needed to care for my firstborn. As our family has grown with yet another lovely human being, my True Love – the English man – was needed to step off the career ladder to care for his family. Even that was not enough – for all of our wellbeing it is vital to have a third adult – a night carer – to look after our daughter. 

Looking back to my life as a 30 year old 

without a degree and living off benefits, I feel ashamed. I was not supposed to be that woman. I was not supposed to be the stay-at-home parent who relied only on her husbands wages, or worse, the state benefits. I was supposed to support myself and my family financially and save the world for Pete’s sake! 

But I am in love, and I have a wonderful family. I love my step-daughter-to-be, my fiancés firstborn, and my firstborn “Elisa” and my youngest, “Melody”. 

Even though the life has not yet turned out to be how I anticipated,

I’m trying to tell myself it is not bad. And maybe I can find a new meaning, another way to make a difference in this ever-changing world.

With this blog, I’m hoping I can change the way you see other people and especially people with disabilities.

I’m hoping you will see my firstborn as a child, not as a disabled thing. Even if I’ve only described her here with her diagnoses, she is so much more than that. But that is another post.

I will be back.