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.

og:image
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!

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…

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?

Have you read these blog posts yet?

You can follow me and my family on Facebook and Instagram, where I post “story updates” every other day. We can be found on Twitter too!

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:

This blog post is not paid collaboration or sponsored post.

You can follow me and my family in all of your favourite social media channels including Facebook, Twitter and Instagram.

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?

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.

Do you follow us yet on Facebook and Instagram?

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!

Related posts

Do you follow us on Facebook and Instagram yet?

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?

Do you yet follow us on Facebook and Instagram?

Who is Elisa?

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

Elisa is funny & cheeky little git.

She has a wicked sense of humour. 

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

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

Elisa is happy 5-year-old.

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

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

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

Elisa loves Futurama. 

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

She likes the films Moana, Coco and Angry Birds. 

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

She cannot speak, but she won’t stop talking 

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

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

She says yes with a smile.

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

Elisa does not like 

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

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

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

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

She picks favourites.

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

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

Elisa loves people and attention. 

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

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

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

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

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

Elisa is diagnosed with

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

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

Who is she? 

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

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

Do you already follow us on Facebook and Instagram?

She is home.

I am so happy to announce that Elisa was discharged from the hospital ward on Sunday. Elisa couldn’t be more thrilled herself, even though she does love all the attention she gets from the staff at our local hospital.

Elisa laughed and giggled the whole way home.

I wish we would have had the cameras already filming when we had Elisa settled down on her beanbag. Usually, Melody would keep a safe distance from Elisa’s dystonic hands and legs, but this time she cuddled straight up to her. It was so sweet we were paralysed by the sight of it, only able to coo and aaw on point. Elisa was surprised and happy about her little sisters approach, and as usual, tried really hard to control her jerking limbs. 

It feels so good to have her back home.

You can follow us on Facebook and Instagram!