Elisa’s Dystonia Journey: The Hip Surgery

If you’ve read my previous post about Elisa’s current predicaments leading to hospitalisations, you don’t have to click this link. If you haven’t read it and don’t know what has been happening previously, I recommend you to read this first before carrying on.

Post telling about Elisa’s dystonia and hernia surgery

Spring spent in hospitals

Elisa spent the majority of April in the hospitals. She did get transferred from Southampton to our nearest hospital, Poole hospital, which made it easier for us to care for her and I was able to be more involved. During that hospital stay, Elisa’s dystonia did not get better and her dystonia rescue plan had to be constantly reviewed and altered. In the end, the doctors were trying their hardest to get the hip surgery booked in for as soon as possible.

Her hip surgery was booked in for June

Personally, I felt disheartened. It was so torturous for me to see my child in so much pain. She was in agony! All she would do was either be in drugged up sleep in relative calmness or scream like she was being tormented in medieval torture machine that stretched her limbs into unnatural positions. I am not going to lie – it was hell. I was convinced Elisa was scared of waking up, to be aware of her pain. The complaining and screaming came on like with a flick of a switch – one minute she would be seemingly calm and sleeping, the next second she would have screwed up her face and was screaming with the the full capacity of her lungs.

The reason for a long waiting time was the pandemic

I was told there were only two hospitals doing paediatric hip surgeries: Southampton General Hospital and Great Ormond Street in London. As was the case, the waiting list was unduly long for both hospitals. It was unsettling to think there could be so many other children in similar agony to Elisa waiting for the operation as desperately as we were…

This is the position Elisa was the happiest in – if we straightened her legs, she would immediately stiffen up and complain loudly. She even slept like that! Sometimes we managed to keep her comfy as so on a bed, but mostly one of us would be laying next to her and holding her in this position to help her.

Still, every single day I wished for a phone call from either of the hospital to announce: “Hey, we’ve got a cancellation – could you come in as soon as possible to get Elisa’s hips done?”

That never happened though, but I lived in hope.

We got Elisa home

In the end of April, we got Elisa home. It wasn’t because she was better; it was a trial to see if we could manage her dystonia better at home where we would have all her equipment and specialist seating in hand, not to forget the comforting stimuli of home environment. Armed with very powerful drugs and our invaluable night carers paid by NHS, we got her home and hoped for the best.

We tried our hardest. 24/7 we would cuddle our daughter, as that was the only way we could keep her as content as possible.

It nearly broke me.

I found myself thinking that I wished for her to give up. I couldn’t imagine the strength required from her to keep going, and I wanted her to find peace – even if it would only come through death. I was horrified by my thoughts. It wasn’t that I wanted to lose her or for her to die. I wanted her pain to stop so bad that I was even ready to let her go – so she would not have to suffer so damn much anymore like she had been.

If you do follow me on Facebook, the last bit didn’t come to you as a surprise, as I did post about it there. I add the post underneath for you to read now in case you’ve missed it:

My best wasn’t enough

In the end, it was too much for me. We decided to take Elisa back to the hospital, where she could have more sedatives than what we were allowed to give her at home. It wasn’t an easy decision in any means, but it was what we felt was right for her.

She spent the last weeks of May in Poole Hospital. I informed the doctors I rather had her in medically induced coma than see her suffer, but due the infection risks and withdrawals and all that lot that comes from such extreme medications, it really wasn’t a practical option. It left her being medicated as regularly as possible with pain relief, chloral and other sedatives.

Thanks to our insistent nagging though, the doctors allowed it that she didn’t need to be screaming her head off in absolute agony before giving her the strongest stuff.

Time is too slow for those who wait

It took forever, but we got to the end of May. Then she was transferred to Southampton Hospital – on Dan’s birthday – in readiness for the upcoming surgery.

The surgery finally happened in 2nd of June

and it took nearly 8 hours. I do admit, I do not know all the ins and outs of what they’ve done to her hips as I didn’t want to know – but both of her hips were done, metal rods put in, bones crushed and what-have-you, tendons in her groin were loosened and they operated on her pelvis too. She will have four big battle scars as a proof for undergoing such an operation.

If you want to know what was done, Dan found this useful video for you to view on Youtube called “Hip Reconstruction in Cerebral Palsy“.

She will need to wear a brace for 6 weeks post-operation.

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Child wearing a hip brace after hip surgery
This is the brace. It is so much better than a cast that was the other option!

Afterwards, she spent 2 nights in Paediatric Intensive Care Unit (PICU). First night she was in ventilator getting as much rest in as possible, and for the second night she was kept in for other medical reasons.

On a third day she was transferred to HDU ward, where she is still today.

Today is the 10th of June 2021.

Today it has been a week and a day from the surgery.

Guess what? I went to the hospital to see Dan and Elisa today and Elisa gave me a genuine smile when she saw me. She smiled at me! For the first time this year! My heart nearly stopped, it was a such a sight that I could have cried on that very spot!

Instead, I rushed over to stroke her face and cuddle her as gently as I could.

She has some gentle physio daily and she has even managed to sit in her own wheelchair already – and the big news is that she is tolerating it!

After having to cuddle our child non-stop as that was the only way to keep her as content as possible, to see her in her wheelchair is… I don’t think there is a word for this sort of emotional excitement, wonder and happiness pierced with sadness that I feel when I see her now.

We even got Elisa out of the ward – she joined us for lunch in the hospital’s cafe!

Oh, only if we could have had her hips done earlier, back in March!

Maybe this was it?

We are so hopeful we have finally cracked the mystery of the dystonia trigger – it might have been the hips. Her sore hips causing her to go into dystonic status every single day for the past… I don’t want to do the maths for how long she has suffered. I’m just glad we’ve finally managed to do something that has made a positive difference to her wellbeing.

She is still having a lot of drugs, but not as much as she was pre-surgery. In most likelihood she will be spending the whole 6 weeks in the Southampton hospital so she can have the specialist physio she requires to heal, but that is such a small price to pay if it means we can have our happy little girl back!

Again, thank you for reading – and to all of you who has sent us messages, comments, phone calls, cards and gifts: thank you so much. It has meant so much for us. It has helped us to keep going, knowing we are not alone in this. We are so grateful to you. Thank you!

We got help from Paws on Board

Black labrador looking at the camera with border collie. text says "we got help from paws on board"

What is it about asking for help that is so damn hard?

I would be honoured to help, if anyone blessed me with a genuine request for help. But to ask for myself… I have to be at the very near to the end of my wits before I do, and I know it’s very foolish of me.

Black labrador and border collie stare at a camera. Text says: We got help from Paws on Board.

We have a lovely, energetic and bonkers 2 years old black Labrador called Freya. We got her as a puppy at a time when I had time to train her and take her for walks.

Introducing Freya the Labrador.

I needed help.

First of all, Elisa’s muscle tone was getting very varied, she would suffer from very painful muscle spasms and cramps that are what is diagnosed as “dystonia”. Often, she would only be comfortable enough to be sort of content was when cradled in with a firm cuddle.

Then Melody started having seizures, and after necessary checks she was diagnosed with epilepsy (I realised I haven’t blogged about this – I will).

This inevitably meant neither of us parents felt comfortable being left alone with both kids at the same time, as each of them required a minimum of one adult to keep them safe.

The worst-case scenarios haunted our minds – what would happen if Elisa suffered from dystonia and was cuddled by the lone parent, only to see that Melody dropped to the floor having a seizure?

That meant no more taking turns to have some alone time while the other parent minded the kids. No more long walks with the dog, unless we got a carer to look after Elisa.

Labrador cuddling a child

Looking for ways to help Freya

From very early on our newly founded restrictions on walking time with Freya, I stumbled upon Absolute Dogs. I was looking for different ways to engage with Freya, give her focus and burn some of that energy at home, without me leaving the premises or going too far in case Dan needed me with the children.

I signed up for the “Sexier than a Squirrel”-challenge as it seemed like fun, which it was. Me and Freya enjoyed the challenge games and the whole experience did wonders for both of our confidences and Freya’s recall.

Unfortunately, it didn’t change the fact that Freya was not having enough exercise. I could throw treats on the floor in the garden all I wanted so she could go out for a sniff… I could play the games, I could teach her tricks so she would use her brain… But still, she needed the exercise. I could see her physical form getting worse. She was loosing muscle. She was getting restless and frustrated. Pressure was building up within her.

Black labrador laying down on a picnic mat.

Even after we got Melody’s seizures under control with medication, the fear stayed. I only felt comfortable taking the dog out for a proper long walk, if I knew Dan wasn’t alone with the children.

The shielding didn’t make matters any easier – it meant every time I was out with (or without) the dog, I would pass the other pedestrians as far as possible, keeping my distance. Which meant zero socialisation prospects for the furry pet of mine. Brilliant for learning to pass other dogs, but very bad for Freya’s mental health and canine social skills.

What is best for our dog?

I started to wonder if it was best for Freya to be rehomed to another family, where she would have all the exercise she craved for and the attention she deserved. We had had her for two years, and she was part of our family. Still, we were not providing the life for her that we thought we would when we originally considered bringing her home to us. The pandemic, shielding, the children’s diagnoses, it all were on my way of being the dog owner I had thought of being.

Dog being cuddled by her emotional owner.
Freya giving me emotional support at the time when I was upset over Melody’s seizures.

Something had to change.

We had to take Elisa in to the hospital for third time this year (post about this here). I knew something had to change. Even when Melody went back to school, I didn’t have the time to take Freya to blow some steam as I was on the beg and run to go to the hospital during school hours.

I started to research local dog walkers.

I wanted someone experienced. I needed someone who would know how to handle an energetic Labrador, who hasn’t had a chance to really be a dog for a while. Who would make socialising with other dogs safe and fun for Freya, who had been lucky if allowed to sniff another dog in touching distance for such a long while. Even if Freya wouldn’t pull as such on a lead, I didn’t want to give her to someone who wouldn’t necessarily understand her.

Which was why I hadn’t just given her for a friend either to take for a walk – I didn’t know how Freya would react to someone else walking her. Would she behave?

Child watching videos on a tablet while cuddled by a black labrador
I’m not just a dog. I’m a cuddly dog.

I watched lovely videos that dog walking entrepreneurs had posted, where they had taken a punch of lively canines to a forest and they were having zoomies and crazy, fun times. I read reviews, checked websites, read posts on Dog Friendly Dorset’s Facebook group, trying to get the feel of the people behind the profiles.

I asked my friend, a fellow dog owner, for recommendation and she told me about Vicky.

I checked out her website. While reading about the training service she offers, I noted she has been trained by the same people behind Absolute Dogs. I felt a spark of excitement: she would have same ideas for dog ownership and training like I do. I smiled as I thought of her training Freya to surf, of all things. I looked at her Facebook Page, and got the feel of calm, controlled but fun.

I contacted her, and I watched her face on the video call when we talked. I felt reassured. I felt connection. This woman seemed to know what she was talking about. We arranged a trial walk, and she came to pick Freya up the very next day.

I was nervous.

For nothing, in the end. When Freya got back, Vicky reported same things I already knew about my dog – that she had lost muscle on her legs due lack of exercise which could potentially be a health risk in the future, and she played rough with the other dogs and didn’t really understand all the social cues the other dogs were giving her, which was due the lack of socialising. Freya was lacking in confidence, which manifested itself in many ways.

Vicky also noted how loving dog Freya is and how in tune the dog is with me. Freya reads my moods better than I do. She truly is our emotional support dog. For the whole family but especially for me.

Vicky gave me some exercise ideas to help Freya build up strength on her hind legs and back, and there we had it – a beautiful working relationship between a dog owner and a dog walker/trainer. She started to come and pick Freya up couple times a week, and after each session I would see Freya trusting Vicky more and more, and she would come back from her walks tired but happy.

labrador laying under the table, leaning on her owners foot
“Mum, you are not alone. I’m here, laying on top of your foot. Just so you won’t forget.”

I have already noticed she is calmer around the house, the ever present near to the boiling point pressure within her has just about vanished.

She is still very much in tune with my emotions.

On the day of Elisa’s surgery in Southampton hospital, I was very anxious and so was the dog. She was clingy. She followed me everywhere, touching me on my legs, her ears drooping, tail low. I walked around the house, cleaning and picking up stuff to only put it down again somewhere else, and all the while the dog followed.

The surgery was to be long one. So I called Vicky and she came to collect Freya.

Freya didn’t want to leave my side, but she got lured away with yummy sausages… And when she came back, she was like another dog. She was content. She still watched me like a hawk, never letting me out of her sight – but she did so from the armchair, where she got herself comfortable. She kept her tabs on me, but wasn’t clingy.

When I was near a peak of an anxiety attack, Freya trotted to me and placed her head on my lap. I gathered her in my arms and hugged her tight, and Freya was there, calm, collected, snuggling into me. She felt my worry, but it didn’t overflow her bucket. She had had her run and fun, her body was tended for, she wasn’t bursting with nervous energy – so she was there for me. Helping me to keep me together.

This blog post is not paid advertisement.

Is merely an acknowledgement for amazing person for the work she does and what a difference it can make. For £12 a walk, my dog is safe, but has an adventure. She is allowed to be a dog, she learns to socialise with others of her kind and she gets the exercise she needs. If anyone ever asked me for recommendation on dog walkers or dog trainers around BCP council area, I would full-heartedly recommend Vicky.

And so would Freya.

Check out Vicky’s website and Facebook for more details:

Thank you Vicky, for all you’ve already done for us. Thank you. My only regret is that I didn’t find and contact you sooner.

Mother at Home: Child at the Hospital.

So much of missing Elisa is guttural.

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

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

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

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

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

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

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

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

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

Today is 9th of March 2021.

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

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

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

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

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

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

Today is 12th of March 2021.

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

Finally,

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

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

Will keep you posted…

My 4-year-old will be expected to do longer days at school in UK than a 12-year-old in Finland

In 2020 our youngest will start school and I am terrified.

She is too little for school!

I think she is not ready. She will only be 4 months shy off being a 5-year-old when she starts.

But then, I am from Finland. There children start school at age 7. Till then, they can be at home with their parents, being care-free about numbers and letters and just enjoy playing.

Let’s briefly compare some aspects of Finnish education system to UK’s one

At age 7, Finns start school and only then start to be taught to read, write and do maths. As they should at year 1.

At age 7, children in UK are in year 2. They have done their reception class at age 4-5 and then moved on to year 1 at the age of 5-6. At age 6-7, they are expected to already learn to …

So they are obviously expected to be doing more advanced maths than their age peers in Finland, who have only just started their education journey at school. It is no wonder though, as the British kids would have already spent 2 years in school and are on their 3rd year!

Even more disturbingly…

Here in UK the pupils spend about 6 hours a day, 5 days a week at school. That is a whopping 30 hours a week!

The Finn in me is distressed as a 6 hour day at school was always a long day for me, or any Finn, at school.

My little helper shopping in Finland.

In Finland the councils are required by law to provide at least a minimum amount of hours of school lessons a week, but the requirement increases with the age of the children. They do not expect a 7-year-old to be spending as long at school than a 13-year-old.

In Finland, they do not expect a 7-year-old to be spending as long at school than a 13-year-old.

Those minimum hours are

The minimum hours for 7-9 year olds (years 1-2) are 19 hours a week,
9-11 year olds (year 3-4) should have at least 22 hours a week,
11-13 year olds (years 5-6) should have at least 25 hours a week and
13-16 year olds (years 7-9) should have at least 30 hours a week at school…

By comparison in UK, once the child turns 5 years old they are expected to be getting a full-time education, so from as early as in reception class the children are expected to spend 30 hours a week.

So a 5-year-old in UK does the same hours at school than a 13-year-old is only starting to do in Finland.

Me, then Melody (4) and Ruby (14). Isn’t it mind-blowing to think that these two sisters will be spending as many hours at school a week, despite the age difference?

I know British schools do not perform too bad on the international rankings when comparing educational systems.. but what about Finland then? How will the children, who spend less of their childhood at schools, do in those international tests?

I found this interesting video ..

I kept a close eye on Finland and United Kingdom on that video – and Finland always scored better than UK.

Finnish education system do differ from United Kingdoms schools in other ways too.

But someone more experienced could write about the other differences.
(But if your interest has peaked, there is a blog by an American who lives in Finland called Taught by Finland.)

As a conclusion,

I am excited as we are reaching a new family milestone with Melody. I anticipate the school runs, homework and all those normal school-life activities that are almost within the reach for us.

But also I am saddened by the fact that she will be spending most of her childhood within school walls. She will have so many years more of compulsory formal education than I did. But then, that is the consequence of us living in the United Kingdom, where we are content and which I do identify as my home. (There are plenty of reasons why we live here and not in Finland – maybe that’ll be another blog post.)

What do you think? How many hours children should spend at school a week?

Three Dorset based Charities have made our Christmas full of joy

Three local charities have done so much for our family for Christmas that there have been so much to be thankful for!

Julia’s house

Dan, Elisa and uncle Andrew as their driver got to go and meet some professional football players and their manager at the hospice. These are Dan’s posts about it:

The photos are from Julia’s house Facebook Gallery, photos taken by Simon Ward.

Dan’s photo:

AFC Bournemouth’s video about this event

Dorset Echo wrote about the event here

Amelia’s Rainbow Toy Appeal

Santa and an Elf came to visit us bearing gifts for all of our children and I could not be more grateful. Knowing our application had been accepted took a huge pressure off my shoulders: I knew my children would have so many lovely presents to open this Christmas thanks to Amelia’s Rainbow and to all, who had donated to them.

Unfortunately Elisa was asleep when they came to visit and Melody felt too shy to pose for photos with Santa, so we have no photos from the occasion.

We let Melody choose one gift from her sack of presents to open then, and ever since the Barbie and Unicorn have gone with her anywhere – literally, anywhere. She has slept with them, taken them to have a bath with her, and I’ve allowed them in the car too… Elisa and Ruby both have all of their gifts yet to be opened, and Melody has more too waiting for her!

Thank you Amelia’s Rainbow again for all this joy!

The Dorset Children’s Foundation

Within December, we’ve got more than four events with the DCF, the regular football sessions excluded from the count.

A Christmas party

where we got to see Santa, climb on board of a fire engine and Firefighter Melody got to spray water with a firefighters hose.. There were Squidge and Pop doing bubble magic and DJ Nose It got us all dancing… with a princess and a Spiderman!

Elisa slept through most of the party, but she had her friend Dolly looking after her the whole time. Everyone should have a friend like Dolly – we love her!

Comotion

Christmas edition of Comotion dance session was another blast. We all loved it, and not only because the ever-so-lovely Dorsey Bear came to visit!

Afterwards we walked to around the corner where there were some market stalls and animals to see and cuddle from Mill Cottage Farm Experience – Melody’s favourite was the guinea pigs, Elisa loved a bunny rabbit and I liked the goat. There were also a sheep, alpacas (that I accidently called llamas – ups), turkeys, ducks, chickens and roosters.

Honeybrook Farm

We had bought tickets to Honeybrook Farm, Wimborne, through the DCF. We went to see some lovely farm animals and played with tractors and in the play equipment in muddy conditions for one lovely sunny afternoon – and we had a tractor ride, a tour led by a funny Elf and visited the Santa’s Grotto, where we got to have our photos taken with Father Christmas. Kids got to choose their gifts, which was a nice bonus, as even the teenager found something she was interested in from the options available! All and all, we had a nice, relaxed family afternoon in a friendly atmosphere, surrounded by friends and other visitors.

There wasn’t enough room on a tractor ride for Elisa’s wheels – so Daddy and Elisa met us in the end of the ride.

Melody thought the pigs were the best!

Amazing big sister Ruby followed her little sister everywhere, making sure she was okay and played with her – even if it meant getting muddy! Ruby truly is the best big sister.
Because Elisa’s wheelchair would not have fitted in the Santa’s grotto, Father Christmas came to see Elisa outside. Melody was already inside eagerly waiting for her turn and I was there with her.
Elisa loved this extra attention, and amazing Ruby is making sure Elisa is okay.
I wanted to have a family photo with Santa, but with Melody waiting for Santa eagerly inside and Elisa not being able to follow with her wheelchair it seemed to be impossible, even though the staff were very accommodating to our family. Melody would have got very upset if I was to take her outside again promising that Santa would be there, when she knew everyone else went to see Santa to the next room.. I almost cried as I got so upset about it – but then Dan carried Elisa in and all was good.
Can you see it from my smile how happy it made me, having this photo?

The Giggles

Giggles is a soft play centre in Bournemouth where we have DCF session once a month. Towards the end of the Christmas period we have a Christmas spectacular party awaiting us at the Giggles, which will be fun!

Elisa with Patsy, the co-founder of the Dorset Children’s Foundation

I feel so incredibly lucky that we have already had so much to do this December and more still upcoming – as to previous years our activities were focused at home and highlights would include seeing “only” family.

It is so much easier to be active when a whole community full of friends is waiting for you to join in the fun; people who understand your struggles and need no explanations. When previously we had nothing specific to look forward to, only having our fingers crossed for a healthy holiday season without hospital stays, now look at us, having a calendar full of fully accessible events for the whole family.

I feel so blessed to be living in Bournemouth, with these brilliant local charities giving so much to my family. Regardless what next year brings us with Brexit and the new UK parliament, I feel reassured that there are these amazing organisations fighting our corners and giving our family so much opportunities to enjoy life and be part of it all.

All the charities mentioned

All the companies mentioned

We wish You Very Merry Christmas!

Have you read these posts yet?

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Special Siblings Burden: our example from one weekend

There are times when I wonder about the effect on Ruby and Melody for having a disabled sister. They endure a lot. Only recently I watched them plough through an eventful day like it was nothing.

It all started on Friday.

In the afternoon it became clear all was not well in our household – after my swimming session with Melody she didn’t seem right. She was pale and unusually quiet; she only wanted cuddles. Had she swallowed some water? Maybe she overdid it at the pool?

Then Elisa came back from school and she wasn’t right either. She had had some paracetamol for discomfort at school and her school book noted that she also had had some chest physio for chesty and rattly cough at school. Oh dear, we thought.

She didn’t yet have temperature and staff from Julia’s house, who had come to look after Elisa for couple of hours, decided to stay indoors with her and do quiet, relaxing activities.

Dan had a rare evening out that day

In the evening, Ruby and Dan went off to the local SEND hustings event that Dan had organised, and I was home with the younger girls. Our CHC – funded carer showered Elisa and got her ready for bed. I had no trouble getting Melody to bed – she hadn’t perked up at all since coming back from the swim and she fell asleep without a hitch.

I came back downstairs to find that Elisa was already tucked in bed too, but she was awfully pale. We attached the Nurofen FeverSmart Thermometer under her arm to keep an eye on her temperature as I had that feeling… (link is to Amazon page; not affiliate)

Sure enough, in just hours time her temperature spiked up to 38 Celsius Degrees.

But that’s not all, folks!

Melody woke up with blotchy red cheeks. She was hot, but shivering. I found a traditional thermometer to check her temperature and it climbed up to 39.3 Celsius degrees. Melody complained that her arms and legs hurt, so I took it that she felt achy.

I send a cheery video message to Dan saying:

“Hello there! The one time you actually get to go out and this is what happens and what you come home to… To poorly Elisa who has got temperature of 38 degrees and Melody, who’s got 39.3. Both have had some paracetamol, Elisa is with a night carer and I’m just taking Melody back to bed… I hope you have had fun and take your time, all is otherwise good here…”

Maiju, while taking Melody back to bed

Both of the girls reacted positively on the pain killers, but temperatures spiked back up when the medicines wore off.

We had very restless night with both girls

In the morning it was clear Elisa was struggling. Her saturations (oxygen levels in her blood) kept dropping; she was working hard to breathe and her temperature was too close to 40 Celsius. We called our local hospital where Elisa has open access to and started arranging to take her up there.

We had to take Elisa to the hospital to be checked out

I went to wake Ruby up with the news that we are taking her sister to hospital. As a sign of what an amazing special sibling she is, she didn’t panic about it – she has experienced such wake-ups before.

Her first words to me:

“Okay, well I don’t have to go to boxing today, I could always catch up during the week so don’t worry about that, it would be too much hassling about if we went.”

My beautiful step-daughter.

Her first instinct was to make it all easier for everyone.

She loves boxing and I never want her to miss out on anything because of her sister’s conditions, but she insisted it was fine.

She was right – it did make the day easier.

Around the time she was supposed to be boxing, she was looking after Melody while I dropped Dan and Elisa off to the hospital.

Later, me and Melody took Ruby home to her mother’s place so she could enjoy more of her weekend and to better her chances of not getting what her sisters had.

Melody hadn’t been herself all day.

She was tired, but had no breathing difficulties. There were no rashes. She didn’t even cough. She didn’t really have an appetite, but she drank fluids okay. When the pain relief was working her temperature was only mild.

Late afternoon I had just noted that Melody’s temperature had jumped up again and was wondering if it was time to give her more pain relief, when I got the news that Elisa could come back home from the hospital. They had diagnosed her with viral throat and ear infection; her lungs and flu test were clear.

It was time to witness 3-year-old Melody’s special sibling skills

When your sister is disabled, your own needs get surpassed often. Even when you have a temperature of 39 Celsius degrees, you might have to be wrapped up in clothes and climb up to your car seat. It doesn’t matter if you don’t want to do it and that you feel horrible, as you do have to pick your big sister up from the hospital with your Mummy.

Thanks to Christmas decorations, she was a superstar

To start with, she did complain and cry as she felt achy and uncomfortable. All she wanted was “mummy cuddles”, and not to be sitting on her own in her car seat. I felt for her and tried to think of something to cheer her up…

So, I made the car trip into a game of “spot the prettiest Christmas lights”. Thank you all in Bournemouth and Poole, who already have decorated their front gardens – you made it all so much easier for me and Melody! My poorly girl forgot about her aches as she kept looking out for Christmas characters, stars and snow projectors and colourful flashing fairy lights.

Melody looking at Christmas lights last year in Bournemouth Gardens.

Soon we pulled up by the hospital and got the wheelchair girl and Daddy back in.

Melody then would have wanted to have Daddy sitting next to her, but that is another impossibility when Elisa is in the car as Elisa needs an escort that can assist her during the car journey… Again, before Melody had an epic meltdown over the lack of cuddles, I was able to divert her attention to the different flashing Christmas decorations. Would we see a reindeer one? How about an elf?

The following day both of them were better and only had mild temperatures.

Those events keep running through my head. What little Melody had to endure even when she felt terrible herself; how Ruby didn’t only miss out on her boxing lesson but a weekend with her sisters. Elisa can’t help her disabilities; she has breathing issues without a cold, and with an illness she struggles more than others in our family.

I keep feeling guilty for strapping Melody into her car seat when all she wanted – and needed! – were cuddles and snuggles with Mummy on a sofa. I know we had no other choice; we needed to get Daddy and Elisa back home and we surely did not have the money for a taxi. Also it was a weekend and it was not planned appointment, so we could not use the hospital transport for the trip.

I do not feel bad that she was with us when I took Ruby home, as then her temperature was down and the trip seemed to cheer her up. The main difference is in the timing.

I keep worrying for them all. Could I have done something differently? Did we do the best for all? Do we do all we can for all of them, the best we can for them in the long run?

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3-year-old’s logic with a step-family: which house is whose and whose mum is who?

We are blended family or “step-family”, which in itself is nothing unusual. Dan has a 14-year-old daughter called Ruby from his previous relationship, and he’s got two daughters with me – 6-year-old Elisa and 3-year-old Melody.

“Ruby’s house”

Ruby lives with her Mum and comes to ours every other weekend and sometimes between. Melody has started to question it recently, asking every day when Ruby will be with us and that where she is. She does know where Ruby lives – she calls it “Ruby’s house” – and like all of us, she misses her when she is not with us.

To make matters more confusing for a 3-year-old

Elisa has been going to Lily’s Place for respite care once a week, staying there overnight. During school holidays Elisa has gone there for two nights a week.

Therefore Melody is quite used to seeing her big sister off to Lily’s place that she promptly calls “Elisa’s house”.

How does Melody view this?

Melody is the only one who doesn’t do “sleepovers” just yet. As stated earlier, she calls Ruby’s mum’s place as “Rubys house”. Lily’s place is “Elisa’s house”.

The house where we all live in she calls as”Melody’s new house”. “Melody’s house” is the old place where we moved out of in October 2019.

Aren’t we lucky as all of our children already have their “own houses”?

In Melody’s new house, there is “Elisa’s room”. The biggest bedroom upstairs is “Melody’s room”, where she shares a bunk bed with Ruby. She claims the bottom bunk is hers and the top one is Ruby’s.

Order is crucial.

It get’s weirder though. As ever since Dan quit working and took on a carers role for Elisa, Melody has learned that Daddy looks after Elisa and Mummy looks after her. Now she has started to tell that Daddy is “Elisa’s Daddy” and Mummy is “Melody’s Mummy” – and she laughs and yells “Nooo!” if you correct her saying that Melody, Elisa and Ruby has got a same Daddy and Mummy is also Elisa’s Mummy.

So just that you know

– all of the girls have a same father, and Elisa and Melody are biologically my daughters. Do not believe the youngest of the family…

I can’t wait when her mind is blown with the fact that Grandma is Daddy’s Mum, and “Mummi” is Mummy’s Mummy and “Ukki” is Mummy’s Daddy…

Did your kids ever have similar type of peculiar ways of thinking?

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I am not alone anymore

As I posted before, I have struggled with my mental health recently. It could be just from pure exhaustion and dealing with change – I mean, did I mention we moved house? Yeah, we moved house. That comes with endless to do lists on top of the usual neverending list of things to do.

I had felt vulnerable and shattered.

I felt tired physically and mentally, trying to get the house sorted enough that it would be livable and not a constant trip hazard. It didn’t matter how much I managed to do during the day, I still felt like an utterly lazy and awful human being who hasn’t done nearly enough when I went to bed. I tried to be kinder to myself and change those critical voices in my head to something more compassionate, but didn’t seem to succeed.

Panic! at the shop

Then, couple days after the reported panic attack, I had another. I was shopping in Aldi and without any prompt or apparent reason, it hit me. A huge wave of pure mental anguish. I wanted to scream, cry and run out. I was at the fruit and vegetable aisles, clasping to my trolley for support. My chest felt tight, and the mental pain felt physical. It was painful pressure building up inside in me, filling me up, scrounging me hollow. It needed to release, and in its most painful state it used to be my previous impulse to harm myself somehow to give all that mental torment a way to discharge. This time, I snapped my fingers against the shopping trolleys handle and concentrated on breathing like an yogi. In while counting to three, out and counting to three. In…Out. In…Out. Pick up potatoes. In… Out… Pineapples. We need pineapples, pick two. In… and milk. Out..

I didn’t notice if people were staring at me, I paid no attention to any other customer or staff member there. It was just me, shopping, my psychological torture and breathing. I didn’t fight it, it never helps, I only counted to three and breathed in rhythm to it and picked up items into my shopping trolley.

By the time I had circled around all the aisles and was at the tills, the panic attack had eased. It had left me feeling weak, used up and unsteady.

A night out with the girls?

I got home okay. While unpacking the groceries I thought what to do next. I was supposed to go out that night with some other DCF mums, but the whole thought of going somewhere public, loud and full of other people with all that stimuli it brings about was too much. I felt another attack building inside me.

I didn’t give up straight away, as that would have made me disappointed in myself. I decided to have a shower, just to see if it helped.

Freshly out of shower, I felt better – but wobbly and weak. I could not face going out – it already felt too much having to drive to nursery to pick Melody up, but I had no other choice.

I sent an apologetic message to the other mums telling them honestly about my panic attack and that I could not come out with them that night, but urged them to go without me. They sent me sympathetic messages and I went to pick up Melody.

I never expected what happened next.

“Maiju, it is all arranged. We are coming to you. With food, wine and chocolates.”

The girls didn’t go out for dinner without me. As I couldn’t go out, they came to me. We sat around our tiny dinner table surrounded by the mess that is our daily life with surplus moving disarray, and they didn’t bat an eyelid. They brought everything with them that we needed, and we sat in our comfortable clothes, ate and drank and giggled. Even I cracked smiles and laughed, feeling more certain about myself around them. They made me feel better. They made me feel cared for, loved.

This is the best photo of me ever taken. I am sitting by that same dinner table and Melody took this photo with my phone. And posted it into my Facebook story with some smileys on it too, without me realizing what she was doing.

They made me realise I was no longer alone – I had mum friends that cared for me and were ready to change their plans to help me.

[I am aware I have never really been alone, I have friends abroad and here too, people I have met through different connections. It has been my own fault that I had not seen them that often or become that close to them. ]

How precious is that, how amazingly lucky am I?

Since that night, after those hugs and bottles of wine, I have felt steadier on my feet. I haven’t had another panic attack. I have made more of an effort to be kinder to myself, and celebrate the things I have managed to do. So far, so good. Additionally, just thinking about that night around our dinner table makes me smile. It fills me up with hope.

Hope for our future, hope for myself, hope in general.

Thank you girls.

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We met Jules the Entertainer at Julia’s house event

For years, we have been getting support from Julia’s House Children’s Hospice.

Every school holiday they organise an event called “Housemates”, which is a lovely relaxed play session for the whole family. Parents can have a hot drink and a gossip with other Julia’s house parents while the disabled and their siblings are all entertained with arts and crafts, toys and games and sometimes even a child’s entertainer pops along. Last half term we met Jules the Entertainer, who is a master Balloon Modeller among other things.

We’ve never met him before and we were curious to see how he would do with our children’s requests. He made an unicorn balloon for Melody in no time at all, and when it was Elisa’s turn…

Can you guess what we asked him to make for Elisa?

If you have met Elisa, you should be already aware that she is the hugest fan of Futurama. She has loved it for years already and it still continues to entertain her to the fullest. Her favourite characters are the robot Bender and Dr Zoidberg.

From GIPHY

Hearing this, Mr Jules sighed comically, took out his phone and searched up “Dr Zoidberg” from the Internet. Soon he had an image of the lobster up and he was modelling away, picking up balloons to match the colours and murmuring to himself while trying to work out the logistics of how to actually build up a weird creature with tentacles on it’s face. Elisa was fully entertained by just watching him, and everyone else around was having a ball seeing him “struggle”. Soon Elisa had worked out what he was making and the wonder on her face…

Elisa didn’t yet know what he was about to make …
Here, Jules is making eyes for Dr Zoidberg. Can you tell it from Elisa’s face? She already knows!
It’s coming along.. and Elisa is loving every minute of this balloon show!
“Hmmm? Does it look like what it should?”
Elisa thought it did and her opinion is what mattered the most!
She loved it.

I like to believe that seeing the pure joy on my child’s face,

it motivated Jules even further. After he had made a balloon to every child in the event, he then did some research on Futurama themed balloon models. We carried on with the events other activities – Melody was busy decorating pumpkins and biscuits and soon was time for stories and songs.

In the end of the event we found Jules in the hallway crafting away with his balloons, building an even bigger Dr Zoidberg for our Elisa!

We found him!
Putting it all together while Elisa is waiting excitedly…

Elisa was so happy.

how can I explain the joy she felt when she saw the big balloon creature that looked like her favourite character from her favourite tv-show?

I was so taken aback by the generosity and the will to make my child happy that Mr Jules showed that it made me speechless. It did make me cry [of happiness]. In secret though, I did not want to embarrass Elisa nor Jules!

Making sure we all got home safely.

I could not think of any other way to thank Jules enough for what he did for my children than to write this blog post.

Jules the Entertainer

can not only do balloon modeling, but magic shows, fire stunts, stilt walking and circus workshops. He does do kids birthday parties – he is the “Bournemouths Children’s Entertainer” – and he is available for corporate events too.

I cannot recommend him for birthday parties as I have not yet seen him in anywhere else than at this Julia’s house event. If his compassion for the children he met that day. his eye for detail and his determination to bring joy and happiness to the children and their families are anything to go by, I would say he is an excellent choice as a party entertainment for anyone.

We all hope to see him soon again. Thank you Jules for making our children happy!

Jules the Entertainers contact details:

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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?