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?

My Trusted Temper Tantrum Tamers

The stomping foot, arms crossed, protesting lower lip. The crying and screaming, the trembling body. The lovely classic signs of a temper tantrum.

There are times when I find it extremely hilarious.

When we are not in a rush and we are not having a temper tantrum over wellies or sandals on a rainy day. On those situations the problem might be solved with a conspicuous

“I understand you, I hear you, I know you want the sandals but it’s raining outside and you don’t want your feet to get wet now, do you? No? I thought so, so let’s save the sandals for another day and we go and find your lovely Peppa Pig wellies now.”

If it only worked…

She does love her Peppa boots!

But then there are the most entertaining temper tantrums when the child herself forgets why they are stomping their foot. The very mood when anything you offer is thrown back at you with a solemn “no”.

Like the other night at bedtime.

We had just finished our routine of brush your teeth – bath – pyjamas – hair – and it was time to pick a book for bedtime story. All of a sudden I see my child protesting and trashing around on the bed.

“Do you want your teddy?”
“No!”
“Do you want your drink?”
“No!”
“Do you want the monkey book for bedtime story?”
“No!”
“The Gruffalo book?”
“No!”
“Do you want mummy hug?”
“No!”
“Daddy hug?”
“No!”
“Do you want a kiss?”
“No!”
“What would you like?”
“No!”
“What, you would like a ‘no’?”
“No!”
“Okay,” I inhale and shout as loud as I can master, knowing that Elisa’s night carer is just next door, “NO!!!!!
That startles her. She turns to stare at me.
“Is that what you wanted?” I asked.
“No…” She says and sniffs.
“What would you like then?”
“No.”
“Another one? Really?”
“No.”
“Okay then… NO!!!” I shout and slam my hands on the bed too, for the effect.
Melody can’t hide her smile.
“Right, would you like to pick a book now?”
“No.”
“What, no book?”
“No…”
“What would you like?”
Melody cracks another smile.
“No..?”
“Okay, last one…. You ready?”
“No..”
NO!!!” I shout.
She dissolves in laughter.

I gather my giggling child up in my arms and once she’s stopped laughing, I tell her we are going to lie down on the bed now. I knew that if she wanted a book at that point, she would tell me so – but I suspected the whole tantrum was caused by her being so tired. Without another protest, she settles down next to me.

“Mum?” Melody asks.
“Yes, Melody?”
“Cuddle me.”
I wrap my arms tighter around her.
“Melody?”
“Yes, Mummy?”
“Hug me.”
“Okay okay…” and she wraps her slender arms around my neck.
“Night night, Melody.”
“Night night, Mummy.”

Couple more minutes, and she was fast asleep. I disentangle myself free and just watch her sleep, before I tiptoe back downstairs.

There is another Tantrum Tamer that I’ve used

Instead of explaining it, I just show you the video where I got the idea from.

On a video, Dad is holding a little girl in his arms. The girl is crying. Dad tells her that it’s his turn now and starts to wail himself. The girl stops sobbing and stares at his father (through the screen). Father stops crying and tells the girl it’s her turn to cry now. The girls answers with “no”. Dad takes couple more turns on crying, but the girl is done and doesn’t want to cry anymore.

Melody responds with “NO!” first, then runs to cover my mouth when I “cry”. She’s by then stopped crying herself, so we can have a conversation about what went wrong, why we were upset. Occasionally the conversations go horribly wrong and I find myself witnessing another tantrum… but after a couple of turns with “crying”, we usually do end up fixing the situation for real.

How do I solve the wellies versus sandals issue?

I am not so proud of this one.

Too many times we disagree about the clothing and instead of getting ready to go, we squabble over summer hats or woolly hats, lost socks and sun lotions or if she can bring whatever unpractical toy with her.

There was a time when she didn’t believe I would leave to go to nursery without her.

We had been trying to get ready, but disagreed on I-cant-even-remember-on-what, and I had used all the reasoning power I had and the situation was not resolving. So like a mature adult that I am, I said

“Well, if you are not doing what I ask you to do, I’m going without you.” I paused to see if that made a difference.
It didn’t.
“Okay then, bye bye, I’ll see you later!” I got up to my feet, walked to the door, opened it, stepped outside and closed the door.
I heard the wailing scream immediately.
I counted to three and opened the door.
“Would you like to come with me?”
“Yes please,” she sobbed and ran to my arms.

I had no problems getting her dressed the way I needed her, and she was the laughing usual self already on our way to the car.

If I struggle with the same issues now,

all I need to say “Okay, I can go without you then, bye bye” when she then hastily says “No noooo!” and runs to do what I need her to do and off we go.

(Needless to say, this is the very last resort – it would loose it’s magic if I overdid it. Also, I do not want my child to live in a constant fear that I would actually leave her behind [never]).

To warn anyone who sees me and Melody at a supermarket..

I am definitely one of those parents who will throw a “temper tantrum” on a floor just to shut their kid up. If she can do it, so can I.

My little helper helping me in my hometown’s supermarket in Finland.

So far, she’s been too good while shopping. Such a little angel helping me carry my shopping basket, getting my products for me and doing every little bit to help me where she can. But one day.. One day I will find myself on a floor pretending to have a temper tantrum.

What are your trusted Temper Tantrum Tamers?

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I’m worried of

When I write, I have to organise my scattered thoughts and feelings. I cannot just reminisce on something superficial – what I write comes from my heart and if I cannot reach it, something is wrong.

So why haven’t I been writing for weeks now?

First, I was busy trying to get the Finnish blog work – it still has a few technical issues and hiccups, but at least it is not as freaking slow as it has been.

Then I was teaching myself to crochet and knit. I picked up a pencil and drew. I cleaned up the house with an audiobook on my ears giving me a lucky escape.. I knew I was procrastinating, but I couldn’t force myself to sit down and write. Even doing a “one line a day” to my bullet journal became hardship, so it was not just blogging. 

I knew something was bothering me.

In truth, I feel guilty. I feel guilty for feeling trapped and unlucky. I feel guilty for feeling bad for myself and my family’s situation. 

As we are so lucky. We have got so much support in comparison to what we could get outside the UK. I am so grateful for everything so I keep counting my blessings – and turn the blind eye to the misfortunes. 

With all we’ve got, it felt unfair to complain. 

What do I worry about then?

My parents. 

About 60 years old and “back in business”. About half a year ago they relaunched their bakery-cafe, as the entrepreneur who had bought it off them couldn’t carry on with it anymore. My parents are hard working and enjoy the social aspect of running their business, but their bodies are not up for the task. I worry – so much – for them; when will their bodies give up on them? Will I get a shaky call from my sister telling me they’ve collapsed, had a heart attack and got into a hospital? And there is nothing I can do to help them from here, apart from spreading the word that there is a business property for sale as well as a well established company (link to my Finnish post about this issue).

Brexit. 

I am from Finland; I’ve been living in England since 2013. I have not hold a “proper job” here unlike I planned, as my child was born disabled. In other words, I am an immigrant living off benefits. I am a mother to two beautiful British children and a step-mother for one, and I’m so bloody afraid how my family will be affected by me not holding a British passport. Even if I would get the right to stay, will everything else stay the same for me and therefore for my family? Will we still get all the support and help that we’ve received so far, or will it change as I’m not British?

I feel bad as no matter how much I do, I feel like a parasite of the society.

Even if it is not possible to return to work, I feel abashed. Not only because both of us parent’s are at home. There is shame attached to the statement of “oh we are both stay-at-home-parents”. There shouldn’t be, but there is.

I feel bad as I constantly feel like I’m failing our daughter, that I’m not doing enough for her and with her.

Not to forget how much I worry for her, because of her tonsils and how we are still waiting for that tonsillectomy, how much oxygen she requires daily, how much we don’t know about her epilepsy and how her dystonia keeps bothering her.. 

I feel gutted because the house we were moved in to turned out to be incompatible for our daughters needs. This was supposed to be the forever home, the one that we could slowly make it ours. The home our children would grow up in, the one they would recall as their childhood home.
Yet we are to start all over again, the excruciating hunt for a home.

I feel guilty for having carers for my daughters nights 

I like every single one of our night carers and I always love to have a chat with them – but lately I have found it hard to go and say hello, to chat about my daughter and how the carers are doing – because .. I do not even know. Because they could ask how I’m doing and I don’t know how to answer? Because they could turn around and say I’m doing a rubbish job as a mother (they never would say anything of that sort – I’m sure) or they could judge me for how I run our house or..

I feel bad because we need them. Because if a carer wouldn’t turn up for their shift, we would be screwed. I feel bad that we are so dependent on people that are in a working relationship to us; that our home is their work place. A night by night we have someone at home who is not part of our family, to look after our daughter, and even though it’s been going on for almost a year now it .. it still gets to me. It is a weird relationship too. You cannot really be friends as she/he is working when here  and there is such thing as professional boundaries. But still that person is not a stranger nor a guest – I am trusting my daughter to them to look after for the evening and night, and as I’m so grateful for all they do I have found myself thinking how unfair it is that we need a night carer. How unfair it is but how lucky we are to have so amazing carers provided for us.

Why do I feel trapped?

There are so many factors influencing my life and how I live it – if we get a carer for the night, if I get another adult to be with me in a car so I could take the children out, if so and so. I wish it would be easier for me to go and see a friend, or do anything. 

I’ve secretly hoped for a child free moment. 

Not for couple of hours, but for couple of days. I love my children. But all I want is to be alone. Completely alone for couple of days so I can do whatever I want without no-one needing me. Or climbing all over me. Or making her alarms go off or needing to follow a strict medication timetable. I even want time off from my partner, so I would be totally attachment free. 

What would it be like to miss for my children?

I don’t know, I have not been apart from them for more than a couple of hours, the time which usually is spent doing chores or running errands, rushing to do everything before they get back. Every now and then I’ve tried to make it “me time”, but end up feeling guilty for it. 

In other words, 

even if I do not want to moan, bitch and complain, there has been loads of things happening lately and so much going on in my mind. And it felt cleansing to let it out. 

Now, please tell me

How are you, really?

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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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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.