We completed the Kids Kilometre

It so closely didn’t happen for us. The plan had been for Melody to run with me and Elisa to be pushed by Dan. On the day Melody woke up feeling poorly and ended up being sick, so she was out of the game.

Elisa wasn’t though.

Once I gathered my wits, I pushed her out of the house and onto a bus. I was determined to make it special mummy-daughter time then with Elisa.

I met up with the others close to the starting point and got our T-shirts on. There were a bunch of us running for the Dorset Children’s foundation – a varied group of kids with different difficulties and mobility issues. For many of them, you couldn’t see the struggles they have gone through to be there today, ready to run for the charity that gives so much back to them.

Me and Elisa, all ready for action!

I didn’t know what to expect really – I had never done anything like this before. I didn’t have time to feel self-conscious though as my amazing daughter kept me present in the moment. She was so excited about the attention she got from our friends and people walking past: she was so happy to be out and about and meeting people. She kept me grounded, I didn’t even have time to feel nervous.

Then they started the countdown

It was time to go. First we were surrounded by people and I was conscious not to push into people with Elisa’s chair. Soon the faster runners had got distance to us and we had more space around us. I picked up speed – for Elisa’s delight.

Elisa turned out to be the best personal trainer ever. The faster I ran, the more she giggled.

Naturally I wanted to see her enjoying herself as much as possible, so I ended up pushing her faster and faster. I had her backpack on my back that had her emergency medications, syringes, hearing stuff and all the rest of it in it and on her wheelchair, I had her suction machine, saturation monitor, oxygen cylinder, feed pump and whatever else on.. Above all her wheelchair is not designed for such purpose as running. It is not the lightest or easiest to handle as you try to be agile and run, but those technicalities aside – I had fun. She had fun. I didn’t run the straight line with her but went for the uneven terrain where she would get the more exciting bumpy ride that I knew she would laugh at, and I curved the wheels like on a snakes path.

She loved it.

I got sweaty and red in a face quite quickly, but I had this silly grin plastered on my face that glowed from within. It came from seeing Elisa enjoying herself. It came from her laughter and excited posture. It came from the buzz around me, from all these kids running with their mums or dads, the audience cheering.

So many firsts…

She had been snickering and giggling the whole way, but all of a sudden she fell quiet. She had focused on the the crowd. I had pushed her near the audience and held her arm out, which resulted in her receiving a couple of high fives. It quieted her down.

As she has both hearing and visual impairment, touch has always been very important sense to her – not only we use tactile sign language called “Tassels” with her, but she gets so much comfort from cuddles and simple touches. So, to get high fives from strangers while being pushed in her wheelchair was another thrilling experience for her.

Then she heard the clapping.

She had her cochlear implants on during the whole race and when people were clapping for her, she closed her eyes and concentrated on it. Even though I could not properly see her face and all the emotions it was conveying while running, I saw concentration and awe.

Coming closer to the finish line

I was surprised to feel sad. Even though I had found it more tiring that I care to say to push her, I didn’t want this experience to end just yet. They announced Elisa’s name and how she was running for the Dorset Children’s Foundation when we crossed the finish line, and I was teary-eyed. I didn’t see anyone I knew immediately, but lovely event organisers took us to get our medals.

When she was handed the medal,

I found myself welling up with emotion. I managed to hold it in till she had got her “Finisher 2019” t-shirt and then a tear or two rolled down my cheek while I pretended to look for a way out with the wheelchair. I felt so proud of her. I know I was the one that did the sweating, but with everything we’ve gone through together, I had never imagined this moment – of her getting a medal for finishing a race in a marathon event.

Such an absurd idea!

When she was in NICU and we feared she might be brain-dead or when she almost died because of a nasty chest infection when she was 3 and was in medically induced coma in paediatric intensive care unit in Southampton… or even just 2 years ago when our daily routine of medications and feeds took 24/7 in a way that we had no rest at all, before we had sufficient support in place.. If then someone would have told me that in just few years she would be handed a medal for finishing a race in Bournemouth marathon event… I am not sure what I would have thought.

When we’ve only been concentrating on surviving for so long, doing something extra curriculum like this is so out of the hat crazy that it is hard to wrap my thoughts and feelings around it.

3-year-old Elisa fighting for her life in PICU in Southampton, only 3 years ago now.
But look at us now!

After I had found the others and exchanged couple of emotional words, I found refuge at a cafe in Lower Gardens. Once I had given Elisa her midday medications and put her lunch running through the gastrostomy tube, I just hugged her and cried. I cried of joy, pride and for the amazing experience we just had. I cannot even explain fully why I was crying. I was just so freaking emotional.

Want to see the DCF group run on a video?

Alex, who supports the DCF’s work, ran with our group of kids taking video and photos of us. Elisa loved him and posed for him every time he came close with his camera, and all the footage show the atmosphere – she was so happy to be there. By the beach, breathing in the salty sea air, feeling the wind and making Mum run. Most of the photos of us by the beach are from him!

This is his video:

Not to forget,

All the children that took part in our group “challenge” really overdid themselves and had fun. With that, through our donation page we’ve raised a staggering 1 622 pounds with Gift Aid! How amazing is that?

That all will go to Dorset Children’s Foundation “Accessible for All” initiative. Read more about it here.

Elisa with Patsy, the co-founder of the Dorset Children’s Foundation (DCF).

I am not sure how much longer the donation page will be open for donations, but last time I checked, it still was. If you want to donate a pound or two after reading our experience, I would be so honoured if you did so in here: Kids Kilometre. It all goes for very good cause; it gives families like us opportunities to play together, to make family memories. Thanks to the Dorset Children’s Foundation Accessible for All initiative, that this money is raised for. The DCF does other important work too, check it all out from their website here.

Thank you – I’m just off to dry my tears away. Again.

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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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Get to Know Me tag

get to know me photo for blogger

As this blog is very fresh, I thought it would be quite appropriate to introduce myself a bit better. I dug out some odd 30 #gettoknowme questions and answered them.

In short, I am a mother of two and a step-mother for one teenager. My eldest child has complex medical needs. But what else is there about me?

1. Where did you grow up?

I grew up in a small village in Finland called Juankoski. The village and its surroundings had only about 5000 residents back then, so I grew up in a tiny community where everyone knew everyone.

My parent’s house is on a lake shore.

2. Where do you currently live?

I am so fortunate to live in beautiful Bournemouth, United Kingdom. Not only because of the award-winning beach, but the whole package – the countryside girl in me is happy with the parks, woods and forests that Bournemouth has to offer me and my family, but also Bournemouth is buzzing town of 183,491 residents with so much to do!

3. How tall are you?

In common terms, I’m 165 centimetres tall, which is 5 foot 4 inches for the British.

4. Do you have any siblings?

I am so lucky to have two (2) amazing little sisters, who both live in Finland.

5. Funniest moment throughout high school?

One day me and my friends decided to give out free hugs for all that wanted them. We all wore signs on our chests proclaiming “free hugs!” and I remember how jittery I felt throughout the whole day. How excited, nervous and happy. Who would stop for a hug? I can’t remember any specific embrace, all I remember is the nerves of the day and the joy it brought myself!

Me, a high school student.

6. What year were you born?

I was born on a Year of the Dragon – 1988.

7. Are you in/have you gone to college?

I did study Tourism and Hospitality Management in Jyväskylä’s University of Applied Sciences.

Interesting fact: Finnish education system differs from United Kingdom.

Me in Jyväskylä.

I started school when I was 7, as is usual for Finland. First 1-6 years are classed as primary school, then the next 7-9 years are “junior high school”. That makes me 15 to 16 year-old when I was done with the compulsory school. We don’t have any national exams during our compulsory schooling.

I chose to go to high school – or “upper secondary school” – which carried on for 3 years for me, making me 19 years old when I graduated. During the last year of high school we are given the option to partake in A-levels. It is not compulsory and you can graduate from high school without them, but usually people do take A-levels. So did I.

8. What is your favourite drink?

Coffee. White, no sugar, thanks!

9. You’re wearing perfume, what scent is it?

Sweet and floral.

10. Have you got children?

Yes, I am very proud mum of two beautiful children and even prouder step-mum for one amazing teenager.

Melody and Elisa in 2016, my two children.
My step-daughter Ruby, me and Elisa this summer.

Have you read about us in here?

11. What are your life goals?

To live happy and fulfilling, meaningful life. Along the way with the resources I have, I aim to change lives around me and the world for better too.

12. What is your biggest strength?

My determination. If I’ve decided on something, there is almost nothing you can do to change my mind. Just ask my partner Dan.

13. Have any books you read changed your life?

I wouldn’t say that they’ve changed my life per se, but influenced it with an encouraging hand. Such books would be “Big Magic” and “Eat Pray Love” from Elizabeth Gilbert, my favourite author. I love her in all podcasts I’ve heard her in too!

14. What is your favourite film?

Oh deary me. I’ve never liked this questions as there’s not ever been one film over all others. But I do love these films:

  • Notebook.
  • Avenger – films from Marvel.
  • Dance films like Dirty Dancing, Step up and Save the Last Dance.
  • Matrix – films
  • The first 6 Star Wars – films

15. What relative was important to you growing up & why?

My cousin and godmother. She was my penpal, even though she didn’t live far, and I had sleepovers at her place regularly from quite young age and even spend one summer at hers when I was already a grown-up. I had always felt that she was my confidant, my adult friend.

Now I’m so proud to be her youngest godmother.

16. Who are your favourite YouTubers?

I guess I show my age here… Even though I am aware of YouTubers and talk about them with Ruby, I do not follow any of them. The only YouTube channel I visit religiously is “Yoga with Adriene“. I love her videos and her easy way to giggle to herself, it has helped me to be less serious about doing yoga and making me to do it just for myself. Just like it should be, I guess.

Me and Melody doing yoga together in our lounge.

17. Do you speak any languages and how well?

I’m native Finnish speaker and believe it or not, but at school English was the one subject I struggled the most.

In addition I studied Swedish. I understand it and I can form simple sentences, but I’m so rusty with it as I have not used it at all since school.

Me in Athens, Greece. I worked there in a hostel for a summer, it was one of my practical training periods for my degree.

I have studied Russian, French and Italian on top of those, but I only remember some odd phrases. While I was in Greece I learned to read Greek and I do still remember some phrases. I’m sure it all would come back to me if I just practised.

18. Are you single or taken?

Sorry to be a smart ass but no-one has taken me. I fell in love with an English man and he loves me, so we choose to be together.

19. What is your favourite Netflix show?

The OA, which I’m so sad about that it has got cancelled! I also like the Black Mirror, Stranger Things and Friday Night Dinner.

20. Show us your songs tab on Spotify.

Sure, I guess the easiest way to show it would be sharing the link to the profile where you can see the stuff what I’ve been listening to. The Jellies on Plates and Baby Sharks are on heavy rotation during our nursery runs with Melody…

See the profile here.

21. What is the craziest thing you have ever done?

Must be when I left to Australia on my own just after graduating from high school. I had not lived on my own yet, so I flew straight out from my parents nest to the other side of the world… And survived there for 2 years loving every minute of it.

22. What theme parks have you been to?

Finland: Särkänniemi in Tampere, Linnanmäki in Helsinki, Visulahti in Mikkeli, Ähtäri Zoo in Ähtäri, Santa Claus Village – Joulupukin paja, in Rovaniemi

United Kingdom: Adventure Wonderland in Dorset, Paulton’s Park in Hampshire, Legoland Windsor in Berkshire and Sealife Adventure Park in Weymouth, Dorset.

My family chilling in a sensory room at Legoland Windsor.

Europe: Tivoli in Copenhagen, Denmark

Australia : Australia Zoo – home of the crocodile hunter.

23. Have you ever failed at anything and what did you learn?

A bigger scale fail would be failing to complete my education and graduating with a degree. I had it all planned out and I was supposed to continue my studies during the pregnancy and right after, I had my practical training places sorted out and I even had ideas for my thesis. Then Elisa was born prematurely and just like that studying was the last thing in my mind.

Me and almost 2 months old Elisa still in Neonatal Intensive Care Unit (NICU).She was so small..

Years have flown by and I haven’t got back to it. I feel like I’ve failed – but I have learned to let it go. The world didn’t collapse even though I didn’t become a professional in hospitality management – and to be perfectly honest, I’m not quite sure if I would like to work at that sector anymore, unless I can tie it up with accessibility and disability somehow.

24. How many countries have you travelled to?

Total visited: 24 countries

I used Traveltip.org’s website for making this map, but didn’t give the website any personal information, just saved the map once it had been generated.

Needless to say, I did most of my travelling before the kids, before my life was turned upside down.

25. Do you have any bad habits?

I don’t drink alcohol unless I go out, which happens rarely, and I don’t smoke anymore.

According to my waist line, I overindulge in food. My favourite treat is ice cream, especially Ben and Jerry’s, and I love chocolate. Those are though treats, not daily bad habits.

One daily bad habit would be not going to bed in time..

26. Do you have any pets? Show them!

My small puppy who loves cuddles as much as she did when she was physically smaller. Also, she did not appreciate me taking photos, she wanted me concentrate on her, thank you very much.

My lovely labrador pup Freya, who is about 8 months old now.

Read more about Freya: A Dream Come True: Introducing Freya the Labrador

27. What is your biggest struggle you overcame?

That would be either the 101 days that Elisa spent in hospital continuously or when Elisa was fed through nasogastric tube and was attached to a feed pump 20 hours a day and struggled with reflux, which meant constant supervision. We had no support yet in place, and Melody was still a baby. I honestly don’t know how me and Dan survived those times…

Maybe the most descriptive photo from that period of our lives.

28. What is one thing you wished people knew about you?

I suffer from depression and anxiety, which I am on medication for. It is entirely possible I might also suffer from post-traumatic stress disorder (PTSD) looking at my past 7 years and all that has happened.

Sometimes I struggle when I’m out in a social situation, even with “safe” people who know me and my family. The anxiety hits and usually knocks me right out, making me quiet and “turned off”. I might smile, I might look at you, but wouldn’t say a thing. If I try to speak it might sound muffled and the sentences would be bad english – that’s me trying very hard to be polite and make my foggy panicky brain work.

It is not me being proud, funny or rude, it’s just me battling my inner-demons.

29. Tell us one thing about you that we wouldn’t know?

I am obsessed with notebooks : I love drawing and journaling. I even had to start an Instagram account just for my journaling stuff..

View this post on Instagram

In September 2018, this was a #journalthisinyourstyle prompt from @journalingyourway. I made this page then but didn’t share it – it felt too personal back then. As a mother to a special needs child, there already have been so very many moments when I’ve felt like giving up. When everything had been too overwhelming. Like in my simple drawing though, hugging the reason I’ve held on for so long makes me feel better. It gives it all perspective. No matter if she has her oxygen prongs on, or her ventilator – she is my daughter, and I need her as much as she needs me. (if you do want to see actual photos of my beautiful strong daughter, check my other Instagram account @meriannen) But here we go. Almost a year late, I share this page from my journal. #journalprompts #journalingyourway #journalthisinyourstyle #journal #specialneeds #specialneedschildren #specialneedsfamily #journaling #creativejournal

A post shared by Meriannen & Bujo (@meriannenbujo) on

30. What are you happiest with in your life?

My family – they are my everything. No matter what goes on around us but as long as I have my family near me, happy and healthy, I’m the happiest.

get to know me photo for blogger

QUESTIONS:

  1. Where did you grow up?
  2. Where do you currently live?
  3. How tall are you?
  4. Do you have any siblings?
  5. Funniest moment throughout high school?
  6. What year were you born?
  7. Are you in/have you gone to college?
  8. What is your favourite drink?
  9. You’re wearing perfume, what scent is it?
  10. Have you got children?
  11. What are your life goals?
  12. What is your biggest strength?
  13. Have any books you read changed your life?
  14. What is your favourite film?
  15. What relative was important to you growing up & why?
  16. Who are your favourite YouTubers?
  17. Do you speak any languages and how well?
  18. Are you single or taken?
  19. What is your favourite Netflix show?
  20. Show us your songs tab on Spotify.
  21. What is the craziest thing you have ever done?
  22. What theme parks have you been to?
  23. Have you ever failed at anything and what did you learn?
  24. How many countries have you travelled to?
  25. Do you have any bad habits?
  26. Do you have any pets? Show them!
  27. What is your biggest struggle you overcame?
  28. What is one thing you wished people knew about you?
  29. Tell us one thing about you that we wouldn’t know?
  30. What are you happiest with in your life?

I combined these questions from different #aboutme and #gettoknowme tags.
You are welcome to copy and answer these questions yourself in your social media channels, with or without tagging me!

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Dream Come True: Introducing Freya the Labrador

Freya arrived to our family in March 2019. It was made possible with rigorous saving up – we committed putting aside tiny amounts of money weekly in to a savings account for a very long time – and research.

In my teens I had had a dog, but ever since I moved to UK I haven’t had a furry friend of my own. It was almost a dull ache in my existence, not having the sound of four paws pounding next to me at all times.

As with Elisa’s complex needs,

I realised I could train the dog to help her. I looked into many breeds, trying to narrow the choice down to what we wanted and needed and what needs the breeds have.

My favourite breed is a shetland sheepdog – my previous dog was a sheltie. Even though I knew that breed very well, I crossed it out from the list. I wanted to teach the dog to help Elisa with her dystonic episodes by laying next to her and maybe even on top of her spasming arms, so the dog needed to be strong and heavy. Lightweight sheltie would have flown off Elisa once her forceful dystonia kicked in..

Taking everything into account,

we decided on a working type Labrador (read from Labradorsite.com about the two types of labradors). It would be agile enough to jump on Elisa when she’s on her wheelchair and strong enough to hold her down if needed – also the eagerness to please and learn were definite positives. I was aware of the negatives, the mouthing (the “need” to grab everything and anything and the constant chewing) and the endless energy, but I was ready to crack on and work with those in mind too.

When I went to see Freya,

I liked her curiosity and calmness. She didn’t yap like her brothers. She wasn’t shy and she was keen on examining me and Melody when we sat there on the floor getting to know the pups. She did mouth, but I had expected that anyway. She let me roll her around, didn’t protest or get anxious, and there I was sold. Freya seemed like the confident little addition that I wanted to have in our family.

After couple of more weeks, she came home and fell in love with Elisa almost instantly.

Freya has proved herself to be a sassy little lady, who only barks at neighbours cats and is endlessly interested in everyone. She loves cuddles and wants to be with her humans at all times.

Freya keeps testing my patience in daily basis,

and we have walked a long way together already – from learning out of the habit of mouthing to walking nicely on a lead. We are not perfect yet, but we are so getting there.

Above all, the kids love Freya.

Elisa is calmer around her – when Freya is close to Elisa, her dystonia seems to ease up.
Melody has an “always-ready-to-play” playmate out of Freya – they’ve got the games of their own from the start.

Ruby is eager to teach Freya tricks.

Me?

Freya is my therapy dog. She calms me down when I feel anxious, and she is my pass to get outside for a long walk daily.

She is a dream come true. Not perfect, but we are all learning together.

So what does Dan think about the dog?

“Oh it’s alright. Whatever makes you happy, it makes me happy. No big deal.”

.. says the one cuddling the dog every night before bedtime.

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Our best ever Summer Holiday yet

I do feel inferior talking about our holidays even though it was the best yet for us. We did not travel within UK or abroad , nor did we visit any museums or amusement parks. We didn’t go camping or glamping and we didn’t go to any festivals.

Such things are expected of the “best ever holiday”, right?

Even though we did not proceed on doing mentioned activities, we still did have the best summer we have had yet as a family.

So what did we do?

Monkey World with the DCF

The Dorset Children’s Foundation “DCF” funded a fun day at the ape rescue centre called Monkey World at the very start of the holidays. We were ecstatic – well, I was at least as I’ve never been and Melody was all keen to see chimpanzees!

Notice sleeping Elisa on the background… She slept through the whole thing.
Melody enjoys travelling in the Tula toddler carrier, that I got from Finnish shop called “Ipanainen.fi“.

We had a lovely day, never mind that Elisa slept through the whole thing.
Maybe she dreamt of monkeys though?

Played Football with the DCF

These football sessions are such a safe place; there are footy related games for those who can and want to join in, but no-one is looked on badly if you decide to run around the hall playing chase with your Mum instead or have your very own game going on with a wheelchair football.

Neither are you judged if you happen to fall a victim to your emotions and have a temper tantrum.

There are only few opportunities where all parties of the family can join in the activity fully when one is physically disabled – it happens so easily that the disabled is on the sidelines or then the siblings. 

These football sessions are for all; all of our three children love to join in the fun. Well, after all, this is “Accessible for All” Football arranged by the Dorset Children’s Foundation. 

Colour sorting is very important for our 3-year-old.. So at one session she managed to gather all coloured practice plates and balls and sort them accordingly.

The DCF Fun Day

We only came for the afternoon part of the fun day – so we managed to get some lovely cake, then burned off those calories with playing indoor football and dancing to the beats of the amazing DJ Nose It !

Saying thank you after a nice game of football!

Launch party of the DCFFC

As we already had been enjoying the football sessions arranged by the DCF, we were excited to attend the Family Fun Day that celebrated the launch of the new football team.

Can you spot Elisa and Ruby in one of the photos from the Dorset Echo’s news article? You can check it out here.

Most importantly – we saw friends and Elisa got some lovely cuddles with a younger friend of ours!

We went swimming at BH Live Leisure Centres

Littledown

We do like the pool in Littledown. It is all wheelchair accessible and we go for a swim there every so often.

Pelhams

Our favourite Leisure Centre has to be the closest one to us though, but not because of it’s proximity. We love how the changing area for swimmers is an open area and so we can get changed as a family. The disabled changing facilities include an essential hoist, and there is a hoist to the warm pool too.

About to go for a swim!

Mummy – Daughter – quality time with Elisa

It’s rare that I get to spend one on one time with Elisa. So on a day when Melody was in nursery, I took Elisa out. Just me and her.

Elisa needs an escort in a car in case she needs support with her breathing or dystonic episodes, which is why it’s not safe for me and her to drive anywhere alone – I need another adult with us. That naturally limits our options for quality one on one time, which is why we went for a walk.
We went through Slades Farm and the woods – Elisa loves a “bumby ride” and it’s good exercise for Mummy to push her along the naturally uneven sandy pathways.
We went shopping to the Julia’s house charity shop at Wallisdown. Elisa loved the guitar and I found some clothes for the kids too.

Attended Julias House event called “Housemates”

Julia’s house arranges these events called “Housemates” during holidays and half-terms that are designed for the whole family. The events are relaxed, offering parents a chance to enjoy a cuppa and a chat with other parents when their children take part in supervised play.

Melody was so independent and went off to play with the Julia’s house staff and other children. She enjoyed some arts and crafts (like in the photo) and decorating cupcakes.
That gave me an option to enjoy uninterrupted cuddle and play with Elisa..
We even managed to have a civilised cup of coffee together, me and the father of my children, while our offspring played happily with Julia’s house in the next room.
Not to forget who is the favourite here for Elisa.. Even as she does enjoy Mummy cuddles, she is such a Daddy’s girl!

Picnic at Moors Valley

Dan arranged to see a friend of ours at Moors Valley. We walked around the pond and then settled for a picnic.

It was my first time to travel on the Moors Valley Railway. I was so excited!
Elisa didn’t travel in her wheelchair but had Daddy cuddles the whole way through. She loved it!
Our labrador Freya was excited to be with us on the train ride.

Random moments

We had had a lovely swim session with other families with disabled children. We were hungry and it was raining – so we had a picnic in the car. Why not?
We enjoyed a lovely pub lunch with family in celebration of Ruby’s birthday.
We attended “Noahs Fun Day” that was organised to raise funds for essential housing works for our disabled friend. Here Melody is having a break from the bouncy castle and enjoying a lovely cupcake.
While Melody was in nursery, we had a shopping spree with Grandma at Castlepoint. Here we are about to enjoy some well deserved coffee and cake! Well, cinnamon swirl for me.
The DCF had organised a Sensory Disco, which we enjoyed. Here the sisters were having a breather in the sensory room – one chilling, other not.
Our friend Dani took Melody and Ruby out for an afternoon of minigolf. Here Melody is all ready to go!
Other day and walking hand in hand with a friend..
Icecream after Elisa’s appointment at Poole Hospital. Ruby, Daddy and Elisa had attended the appointment, and me and Melody had spent that time at the playpark.

Moments at home

Melody is helping Daddy to make dinner.
Building with Dublos..
Painting nails as a reward for letting Mum to trim them first…
Loads of lovely cuddles..
Baking biscuits with Mummy…

How come was this the best summer holiday yet?

This is something any family with a child with complex medical needs will agree on.

Canford Park Sang

This was best holiday yet, as we all stayed home. Elisa didn’t end up being admitted to hospital once. She was poorly with a tummy bug for couple of days, but that is so minor that is not even worth properly mentioning. Honestly – even as we lacked the confidence to book anything and make certain plans because of last years experiences, we ended up having the most active and loveliest time we’ve had during holidays. Happy, content time, as we were all healthy enough.

Isn’t that amazing?

Did you pay attention?

Most of the activities we enjoyed as a family were arranged and funded by charities like Julia’s house and the Dorset Children’s Foundation. Both of these charities are really close to my heart and our lives would be so much poorer in so many ways without them.

Which is why we are raising money for the Dorset Children’s Foundation.

Did you read about that here yet? Most importantly, if you could spare a quid or more, have you donated here?

Our new Facebook page is booming with new likes already – thank you so much for that! If you haven’t liked us yet, please do so here. If you are more of a Instagrammer, we do have an account there too here.

Mummy Blogger reveals her children’s real names after 7 years

This is a big deal for me.

I have kept a public blog for more than 7 years and my children have always been known by nicknames in it.

Not anymore. My blog’s long term fans would have noticed a huge change in my blog since yesterday.

I am very proud of my children’s names.

Still, I wanted to hide them from the world. While I’m revealing so much of myself here I could not help but try to wrap my kids in with a fluffy anonymity blanket.

As I start blogging again,

I feel more connected to the local people, businesses and charities than I did before, and more than previously I do want to work with them and for them. I want to promote amazing charities and help to bring recognition for them, for all the hard work they do for families like mine. We already have let some of them use our kids real names in their leaflets and websites, and to prevent confusion, I’ve revised my nickname policy here in my blog.

My blog’s fans have known my eldest as “Elsa”.

Her real name is Elisa, pronounced like the name “Eliza”.

I had known for more than a year before Elisa was born, that my first child with Dan would be called Elisa. I didn’t want to have any “foreign” letters in her name to honour her Finnish background, as in Finnish letter z is hardly ever used. But Dan didn’t want the pronunciation that comes easiest with this spelling, so we went with “Eliza” with s.

She is as special as her name.

My youngest has been known as “Anna” in the blog.

Her real name is Melody.

Melody loves her name, she promptly and proudly introduces herself to everyone whenever needed or not. Her name comes from a twin who sadly didn’t live very long – I didn’t even ever have the honour to meet her. I met her mum when I had been told the worst news possible; that my child, Elisa, might die. It was then that I bombed into Melodee’s mum, who knew exactly what I was going through. We have been friends ever since.

When I was expecting my youngest, we made name lists, and name Melody just kept popping up. It was the one that just felt right.

Ruby

has always been known in the blog with her real name as according to her own wishes.

Weirdly,

I feel like a weight has been lifted off my shoulders. It appears protecting the names of my children had been a sort of a battle that I had been soldiering through… and I don’t have to do that anymore. Strange.

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We are taking part in the Bournemouth marathon

On the 5th of October 2019 I will be chasing after Melody, 3, while Dan will be pushing Elisa, 6, in her wheelchair. We have entered them to Bournemouth Marathon Festival’s “Kids Kilometre” -event and we’ve never done anything like it before.

We are raising money for a charity that has helped our whole family so much and keeps doing so every single week.

Why the Dorset Children’s Foundation?

As charities go, I have yet to find another charity that is as approachable and friendly as the Dorset Children’s Foundation. The charity supports local sick and disabled children by funding medical expenses, mobility equipment and therapies not covered by the NHS. They get to know the family as a whole and their approach is really hands on. Their mission is simple – “to provide what is needed for a better quality of life”.

They’ve helped us already in numerous ways.

Not only did they fund Elisa’s p-pod that is comfortable seating for home..

Your standard supportive chairs for disabled are like dinner table chairs – they are necessary, but they are not what you call cozy. P-pod is the equivalent of your sofa. Supportive enough to help a good positioning for the disabled, but more comfortable than your standard special needs seating.

More than that, they’ve made us all active.

We didn’t even realise how isolated we were before we took part in the DCF events. We didn’t know any different, as Elisa has always been disabled and we’ve struggled with its knock-on effects from the day 1.

accessible football

Thanks to our friend Emily and DCF’s co-founder Patsy, there are now weekly events for families like us to do different activities. As an example, we now go and play football weekly with the other DCF families.

Here is a video of us spending quality time with our children in different DCF events :

Not only Elisa is included in the activity with the rest of the family, but the siblings too. I cannot press enough how important this is; that the whole family is involved and feels safe and supported to take part in a way they can.

I’m sure you agree,

the Dorset Children’s Foundation is one small but mighty charity that changes lives within our community. It definitely has improved ours greatly.

You can learn more about the charity on their website here.

How to Donate

Emily has set up a Virgin Moneygiving page, where you can securely donate money to our worthy cause. Please spare what you can to help the Dorset Children’s Foundation to support families like us – to keep us active and our kids happy.

So please – donate here.
Thank you so much!

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NEWS! We are merging two blogs together

I pretty much disappeared from the blogging world for almost a year.

Meriannen mielessä

I loved my 7 year old blog Meriannen mielessä – it was my personal public journal to where I poured my sorrows and discoveries of parenthood to a special needs child.

I created the blog when I only had had my first ultrasound scan – as a fledgling mother-to-be I mused about the happiness of expectancy. From there on, from the birth story to the diagnoses and further, the blog was kept updated. Within those posts you could watch me grow and mature, more than those years would naturally age a person.

I wrote in Finnish. On the blog’s prime it was hosted by the biggest parenthood media in Finland called Kaksplus, so I could call myself then as a professional blogger as I did have a monthly income from it.

After leaving Kaksplus I tried self-hosting again but ran against technical windmills. We battled against them one by one, me and my partner, but they kept coming – soon I was so discouraged I just gave up. I left the whole blogging scene behind, letting it rest.

This Is Us

For so long I had been mulling over the idea of keeping a blog in English. There were so much that my English speaking friends couldn’t get out of my Finnish blog and I didn’t want to keep them out of the loop, and writing in English started to feel as natural to me as using my own native language. So alongside my still yet alive Finnish blog I created a shiny new blog with the most intriguing name of “This Is Us”, because, well, the blog was about us.

I eagerly published 10 posts to it, but the flame of inspiration vanished with the technical difficulties of the Finnish blog. Regrettably, I left this promising new writing venue wither with the other one.

The End – or not?

Months went by and I learned to live a life without blogging. Whenever I thought about my abandoned projects I was filled with pure frustration. I was even ready to delete them all from the word wide web, just print them off to actual paper and keep those as memory keepsakes but have nothing online anymore.

I even told that plan to my two most keen fans of my blogging – my parents – with certainty in my voice. I would have done it too.

Then Dan, my so awfully irritating partner, somehow managed to convince me otherwise. Hence, here we are now.

Meriannen mielessä + This is Us = Maiju

Hi. My name is Maiju – pronounced My-You. It does not mean anything, it is just my name – and now name of this merged blog.

The Finnish blog will not be updated anymore, but all the posts are still up here for you to read through. It is just sort of.. archived.

All ten posts I wrote under This is Us are now here in my Maiju-blog, because why not – they were a good starter for a fire.

I will be merging all the social media accounts too, to prevent confusion. Or, like with the unhelpful case of Facebook and “ We’re unable to update your Page’s name because your request doesn’t follow our Page guidelines ” , I created a new page.

If you just found yourself here and have no clue whatsoever who I am, who we are and what this all is about, please feel free to click yourself here to the very first post and work your way from there.

In other words…

I’m back.

You can thank Dan later.

You can follow us on Instagram and on our shiny new Facebook page!

Getting rid of “I-should’s”.

Since the last rant, I gave in to my inhibitions. I had been following almost religiously my inner “I should” talk – “I should blog”, “I should clean”, “I should do…” – and it was driving me bonkers. So I did everything but. I did crochet, I listened to audiobooks, I drew and enjoyed being creative with my bullet journal. 

After a while, “I-should’s” quieted down and I found myself really wanting to write. My mind started to ponder around new post ideas, even post series – and my love for the actual art of keeping a blog was awaken again. 

I am ambitious, and very demanding of myself. With my Finnish blog and this relatively new English blog I have a lot of  presuppositions of my own work and its achievements. As a perfectionist, none of my posts can be half-heartedly done – it’s a full blast of accelerator or nothing. So with this in mind it’s easy to understand how I can overdo a hobby like blogging and drive myself to hyperventilation with it. 

Currently I’m making conscious effort to slow down and not to expect too much of myself. I’m making no exact plans and if my mind oggles on a “I should blog” – thought, I will steer away from a laptop and force myself to do something else creative instead. This is for my own sake – and with his in mind, there is no quarantine there will be a blog post a week or a month. I hope you understand. 

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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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