Helena Huxham
Tributes read at Helena Huxham's celebration service held at St Mark's Church in Sheffield on 4th July 2004
Tribute by Lilias from Lilias, Max & Saskia
I listened to a tape recording of Helena the other night. She had made it herself having learnt to press record on her computer, then speak into a microphone, then doing click to play back. I listened out for her voice singing. Instead I heard take after take of Helena recording herself, deliberately gargling! It was achingly funny.
During our desperate sadness over the last few weeks, I have found myself laughing on many occasions, as our memories come back, and as people have brought back their own memories of Helena. Someone said that she made their stomach hurt from laughing. She had such a funny way, and lovely outlook on life.
Heli's take on disability was astonishing. She knew she was different, but in her view, I do not believe she saw herself as diasabled. "Its not working" or "its stuck" was how she described things, very matter of fact. Recently when telling us she wanted to go to school, Saskia told her that she wouldn't be able to as she couldn't walk. This led to an astonished "mama, I cant walk!". What do you say to that, except - well of course you cant - but lots of people can't. When reminded of others who were in wheelchairs, she was perfectly reassured. We all know of course there was more than not being able to walk.
Her disabilities didn't preclude her from enjoying life to her full. One of my most remarkable and uplifting memories was from some time last year. We were trying to take Heli on a trip to the seaside. It ended up being a long journey, and probably as a result of immobility in the car, Heli had one of her horrible choking "do's". It was extremely frightening for all of us. We could have lost her then. Eventually we managed to sort out the problem and she recovered. Although we were by now only a few miles from the beach, my nerves so shattered, I just wanted to get home. Max thought we should continue as we were so nearly there, so we did. Heli loved it there on the open sands. We flew a kite, which she held in her hand. She was helped to build sandcastles, and we bought a little windmill. At the end of the day, she told us how lovely the day was, and how she had enjoyed flying the kite. There was never any mention of the ghastly, nearly life-ending do, either then, or ever. That was the way she was. She enjoyed life, and savoured the good parts.
Neither did her disability stop her from loving the company of other children. She enjoyed to watch them at play, even though she must have known she could not participate in the same way. She would get most annoyed if she couldnt see Saskia and friends running around.. "In way!" she would bark, "want to watch".
Heli also had a strong sense of what she was able to do, and of achievement. One of her favourite childrens TV programmes she would watch on awakening was "Smarteenies". Four artists demonstrating very simple craft activities for toddlers. Heli would watch and sometimes some idea would catch her fancy. "I can do that" she'd say. If I maybe looked surprised, wondering how it would be possible for her to do it - she'd tell me "hand-in-sling", "mama help"! There would be the things she managed to do - it might be to lift a light toy a tiny distance - but she would then say triumphantly "I did it!". Achievement over-rode frustration.
Games would be played Heli style. "Hiding" games a few months ago consisted of Heli counting to 10, saying "ready or not", then closing her eyes... We would then have to find her, even though she was lying beside us!. Then there would be: "Heli where are you? .. are you inside? "no" ...outside? "no" ....in the wardrobe?.....in the fishtank?... in a helicopter?....increasingly mad suggestions, eventually back to ... are you sitting next to me in the car?.. "YES!" (Eyes open!) Again and again. Later she and Saskia would want to play hide and seek together. Both trying to do the hiding at the same time! Later, Saskia would drag Heli'sgreat big chair round the downstairs part of our house, leaving poor Heli behind curtains, then come in to tell us "Heli's hiding". Heli never got the hang of hiding - always shouting out with delight, "I'm here" "I'm here" when we pretended not to be able to see the all too obvious chair bulging through the curtains!
She was very good at reading people, sussing out their skills. If there was a computer problem, she would ignore me if I was there and shout "AXE" knowing that Max was the computer expert in our house! She would play to the skills of her various nurses, as they know only too well! She would wind Saskia up - choosing exactly when to disagree with her for maximum effect. I will miss the daily disagreements between Helena and Saskia about TV and video viewing. She would always disagree with Saskia, make Saskia thoroughly cross, then finally give in to Saskia's choice, once she had achieved maximum desired effect!
She was a real girly girl. The loved to look pretty, and adored her pretty dresses. What a to-do getting her dressed in the morning as she ditthered what to wear. I think she sensed she was the bees Knees at Karin and Ian's wedding when she was a flower girl. How proud she was that day. And so were we.
Despite her disease weakening her muscles, including those of her face, all those who knew Heli would know that her face had a thousand looks. She enjoyed pulling ridiculous faces "frowning", "blinking" as well as smiling. Sometimes all 3 together! Her eyebrows could move faster than anyone's in the universe! Then she learnt to do "boss eyes". She particularly turned these on to cause as much dramatic effect to her neurologist Chris. Everytime he looked at her, on would go the "boss eyes"! But her eyes were the best, because they could radiate so much joy.
She loved music. Many of you saw her dancing her eyebrows, rocking her head to music, tapping out rhythms with one finger. She enjoyed singing at the piano. She was beginning to play music on the computer. On my birthday, the day before she got really ill, she sang me happy birthday, accompanied by random playing of notes in time, with "I did it" at the end. You will hear some of her favourite music today. She adored Hoya Hoya or "track 9" as she called it and played it repeatedly once she had discovered how to save it into the computer - something we never mastered how to do. One time she said "look at this mama" and she had track 9 playing on the computer with the swirly patterns of the multimedia. She had managed to catch hold of the side of the window on the screen, and was pulling the pretty pictures in and out in time to the music.
She loved too to be danced to music. A recent very warm memory was of her grandmother holding Heli in her arms for a dance at Karin and Ian's wedding. Heli was relaxed and happy, and at the end said "I did it", I think truly believing that she was properly dancing.
She was very bright, and loved letters and numbers from an early age. She was probably Richard Whitely's youngest fan! She loved to shout out the letters with Carol Vorderman on Countdown!.
The computer liberated her huge intelligence, and her voracious appetite to learn. What she was able to do on the computer was quite astonishing. We would find her clicking on all sorts of icons and windows that we never had seen, finding her scrolling down the words of the help files, then rotating the words round at 90 degrees, with a "look at this mama". Often she would have several "windows" open at once, clicking between one and another. You would think she was doing one thing, but in the time of a blink, something completely different would be on the screen. She would get through new games "like a woman posessed"(to quote Sue Burkin), not stopping until she had tried all the different games. How proud she was at the end of hours of work to complete her brand new Bob the Builder Game - all in one day! She was so pleased to print out her achievement poster. Often when playing on the computer there would be a running self congratulatory commentery of "that's roight Hays" .(the name she called herself). The computer allowed her to tease others - "does it go this way Askia?" to Saskia - knowing full well it was wrong!
I am sure that the computer allowed her to grow in confidence, as adults and children saw in interest and awe some of the things she could do. Thank goodness she never got onto the internet - I dread to think what she would have got up to!
She loved new experiences. Smelling new smells ...the bizarre experience of buying fresh fish and chips on The Isle of Arran, I was unable to eat it quickly as, with every mouthful, Heli was saying "want to sniff it" then "mmm, thats really nice"...... Being out of doors, interesting walks, seeing animal at zoos, feeding her fish and animals in children's farms... so many things..
She was happy and loving. We were told on a number of occasions "I love ama, axe, askia and all my family". For all the little arguments, she had a very special relationship with Saskia. They would want to see each other at the beginning and the end of every day. Saskia treated her in a special way, different from the rough and tumble with other children. Very gentle. They loved each other very much.
Having looked through her little nursing and daily diaries that we kept over the last 3 years, a word keeps springing from the pages. "Happy".
As my cousin wrote: "she was so bright and so tough, it was abundantly apparent that had it not been as it was, hers would have been a life which it would have been fascinating to watch develop and unfold"
She has left us many legacies. One of the most profound is the pleasure she has brought to others. For us she leaves an enormous hole, which gives us great sadness, but also great joy in remembering what she brought.
Truibute by Amy Austin on behalf of the neurology nursing home care team
We wanted to write this as a reflection of our experiences of knowing Heli through the Home Care Nursing Team. The team became involved with Heli and her family in November last year. However many of us had the pleasure of knowing Heli before this time through agency shifts.
These comments reflect personal memories shared by Alison, Annette, Helen and Myself. I'm sure many of you can relate to them.
When each of us first met Heli it didn't take long for it to become apparent that Heli was a special child with a very special family. Heli was everyone's best friend. She could be a real flirt and could express herself brilliantly, especially with her eyebrows. Heli was a beautiful, bright, happy little girl, with the most gorgeous chubby hands that helped her whiz through computer games with expertise and precision.
Trips to the Botanical gardens and Endcliffe park would involve singing all the way there and all the way back. Heli would shout "I did it" with such delight that you were as excited as she was to slide down the slide. She was hilarious with other children at the park, shouting "get off" when they tried to cross the wobbly bridge that she was lying on.
Heli could argue brilliantly, especially when she made us put a big toad in her hand, shouting "in hand" "in hand" and almost convinced us that it would be ok with Mummy and Daddy to take the toad home!
We would quickly pick pretty flowers, whilst the gardener's weren't watching to take home to show mummy. Whilst playing in the bear pit we would pretend to be "locked in" and would shout "open sesame" and the doors would roll back in front of Heli's excited sparkling eyes.
Heli loved throwing pennies into the fountain in the glasshouse and made us prick our finger on the cacti as we walked past, her eyebrows going up and down as she made that little laughing noise.
Lying on the floor we would read endless story books, Heli always made us pick through every video on the shelf before she chose the one she wanted!
No one could fail to succumb to Heli's charms and she very quickly learnt who she could wrap round her little finger, almost point blank refusing to do any activity unless it involved a computer screen.
Heli gave us all a lot of funny and scary moments. For example the time she enjoyed smelling fish food so much we were afraid we might have to explain to Lilias and Max how she had aspirated on it? And the time Saskia accidentally pulled Heli from the chair onto the floor head first, an experience Heli found very amusing, unfortunately the nurse wasn't quite so amused at the time!
Heli had an amazing zest for life helped we are sure by having an amazing family. We know Heli would want to thank her Mummy and Daddy for their dedication and care over the past three and a half years, through all the exhaustion and stress they have been through. Without their determination Heli would not have been the delightful little person she was for so long.
And lastly but certainly not least Saskia, for being the kindest and most fun sister Heli could have wished for.
Heli gave all of us who cared for her a lot of special memories and we will miss her greatly.
Tribute by John Barnard about Heli's outdoor adventures
The outdoors, mountains and wild places have always been important to Max and Lilias, and during Helena's short life they passed this love of the open air on to her. One of Heli's favourite activities was going for what they called "rucksack walks", and over the last three years or so I was lucky enough to be able to join them on some of these excursions, usually somewhere in the Peak District. Usually Max would carry Heli in a papoose rucksack on his back, I might carry Saskia, and Lilias would bring along all the various bits of medical paraphernalia needed for Heli.
In the first year or two of her life Heli got to lots of interesting and enterprising places. She ticked two Munros - three-thousand-foot mountains in Scotland - and reached the tops of mountains in Wales and the Lake District She even got to the tops of a couple of small peaks in the French Alps, and on one occasion descended a hundred metres of metal ladders in Max's rucksack to have a look at the Mer de Glace - the great glacier on Mont Blanc. This rather horrified the French guides who were watching, but Heli loved it. And everywhere she went she was alert and fascinated by the sights, sounds and smells around her. She loved flowers, and on virtually all these walks she would be holding a little flower in her hand.
In September 2001, when the twins were about ten months old, Max and Lilias organized a sponsored walk to raise funds for the Jennifer Trust, in which long, medium and short routes all converged on the summit of Win Hill, near Bamford. Max and Lil carried Heli and Saski up in rucksacks to meet everyone else on the top, before a mass descent to a garden party at Thornhill.
Last summer I remember them joining me and some other friends as we walked out to Froggatt Edge to do some rock-climbing. There were flowers to pick beside the path, and when we got to the crag, Heli watched as we geared up for the climb, before warning David "don't fall off" as he started up the route.
As her illness progressed, it became increasingly difficult for Heli to sit upright in the rucksack, and for more recent walks she would lie on a rugged 3-wheeled pushchair buggy. This still didn't stop her from getting to rough places, nor Max and Lilias in their determination to take her. In the last few months I remember helping them push and pull the buggy over the stones and rocks of the Foulstone Delf track up towards Back Tor on Derwent Edge, while Heli looked out for the sheep baa-ing on the moor, and even the glimpse of a hare running across the heather.
Of course, the buggy had the additional advantage of allowing Heli to indulge her passion for speed, leading to the spectacle of Max charging down steep hills trying to keep hold of the thing while Heli urged "Faster! Faster!"
On Easter weekend, I was camping with our friends the Heweses in Langdale, and the Huxhams drove up to join us for the day. We went for a walk round the head of the valley, looking at the spring flowers, and the new-born lambs in the fields, and when we crossed a footbridge aver Mickleden Beck, Max helped Heli to throw some stones into the pool underneath, to see the big splash they made. Back in the tent on the campsite, we were helping them pack up for the journey back to Sheffield, when Heli announced that the rest of the family could go home if they wanted to, but she'd enjoyed herself so much she wanted to stay where she was.
Just six weeks ago today we went for a walk round Dale Dike reservoir, at the top of the Bradfield valley. We had a certain amount of trouble getting the buggy past some locked gates and over stiles, but it was a perfect late Spring morning, and Heli watched some ducklings following their mother on the lake. There were masses of spring flowers out, and the meadow right at the head of the lake, where we stopped for a snack, was completely carpeted in bluebells. If you live locally, and don't know Dale Dike reservoir, I can thoroughly recommend a visit. Go in the last week of May, when the bluebells are at the peak of their brief glory; certainly it's a place that will always remind me of Heli.
That walk was actually Heli's last proper walk, though just a week before she died, she suddenly asked if she could go in the rucksack again, which she did, and Max carried her round their garden, looking at and smelling the flowers there.
Max and Lilias don't want today to be a sad occasion, but rather a celebration of the many happy times in Heli's life, and I'd like to finish with a verse from the Book of Isaiah, that most poetic of all the Prophets, which I hope sums up how we'd all like to remember Heli:
Ye shall go out with joy, and be led forth with peace:
the mountains and the hills shall break forth before you into singing,
and all the trees of the field shall clap their hands.
(Isaiah 55, xii) | 
