A Father’s Story – Life, Grief and Fitness

Exercise: The Importance of Movement

 

I have always been fit and active. At university I was a keen hockey player, training or playing up to 6 days a week. After university, a career in management, and then teaching began. As is so often the way, fitness and sport was overtaken by stress, long hours, commitment to the job and an overwhelming tiredness that meant trainers were nothing but casual wear and shorts only worn on rare hot summer days or holidays.

The waistline expanded, and the trouser size followed suit. Creeping middle age spread accompanied a lethargy towards exercise, a preference for nights out, takeaways and slobbing on the sofa; watching sport inevitably. The irony.

Into my mid 30’s I resolved to do something about it. I was fed up of feeling unfit, of eating without the payoff of a youthful metabolism that burnt the calories consumed at a voracious rate. I only had to look at a biscuit and the waistband would groan audibly. It was time to shape up and get fit.

The first run was a painful plod. A mental battle more than physical. Sure, the body hurt, the legs felt stiff and full of protest. But the mind plays tricks. It tells you that you should stop, it informs you that this is a silly idea, it encourages you to take the path of least resistance – walk, turn round, go home, eat some cake. But with a resolve and determination to stick at it, I slowly began to regain fitness and was running 24 minutes for 5km. I even came 55^th out of approximately 300 runners in a 5km Santa Run for Leukaemia Care in Worcester one year. The fitness was back, the enjoyment of being fit and of exercising had returned. The benefits were obvious. Physically in shape, mentally positive and the trousers fit again.

 

Children

But then in 2006, life for my wife and I changed irrevocably. We had longed for children for many years since marrying in 1998. We had had no luck and we were put forward for IVF treatment. Almost incredibly, not only did my wife become pregnant on the first round of treatment, we were shocked to learn that she was carrying triplets.

The pregnancy progressed until 24 weeks without a problem. And then one night our world imploded. My wife went into premature labour, her waters broke and she was initially admitted to Worcestershire Royal Hospital, but a few days later whisked by ambulance, blue light all the way to Liverpool Women’s Hospital. On 18^th April, 2006, my wife Rini, gave birth to our daughter Jewel. 2 days later on 20^th April, Jewel’s triplet sisters were born. Louisa and Milla had shared a separate placenta to Jewel, so the doctors tried to ensure they could stay as long as possible in the womb prior to birth; to give them the best chance. Every additional day was vital for their chance of survival.
Babies born 16 weeks premature need every bit of time and good fortune possible. The odds on any of our daughters surviving were very low.

The next 6 months are a blur. Each daughter was in a critical condition, in incubators with round the clock monitoring. Each girl weighed around 1lb 6 oz and were the length of my forearm. Every second was stretched to feel like hours. After 17 days, Jewel sadly passed away. She had contracted an infection and was too weak to fight it off. Though she fought so bravely. At the same time as we were grieving for Jewel, Louisa and Milla were fighting for their lives. Every day brought hope and fear. Every time the monitors beeped, or an alarm sounded, it struck fear into us.

6 months of fear and 6 months of hoping, praying for a miracle. 6 months of setbacks and recovery, of hopes dashed and of spirits lifted. 6 months for Rini living in a hospital room and not returning home. For me 6 months of working and then driving a round trip of 250 miles every Friday evening and back home Sunday evening. It was exhausting. You lived in the moment and didn’t measure time. Only for Louisa and Milla. Time was precious. Each day a gift. A month, 2 months, 100 days, 150 days, 6 months. But in that time both girls had operations on their eyes and Louisa had an operation to repair a hole in her heart. The stress and anxiety was enormous for us both.

But miracles do happen. After 6 months, including a few weeks after transfer to Worcestershire Royal, Louisa and Milla came home. Both girls hooked up to oxygen machines that whirred and puffed all day and all night. Sleep apnoea mats under their bodies in their cot to alert us if they stopped breathing. More worry, more stress. But at least they were well enough to be home.

As the months passed and Louisa and Milla grew stronger and eventually came off the oxygen machines, we noticed that Milla was not achieving the milestones Louisa was. She didn’t crawl or roll, or sit. She found eating difficult. She would vomit and her body weight gain was suffering.

At around a year Milla was diagnosed with spastic quadriplegia cerebral palsy; an injury to her brain as a result of her extreme premature birth. As Milla got older it was apparent that she would be unable to sit unsupported, to stand or walk. She would require a wheelchair for life. In addition, Milla was non-verbal, had very irregular sleep patterns that would see her awake almost every night until 4am. She also required operations on her legs, to alleviate the stiffness of the cerebral palsy. And on her stomach – to create an entrance way so she could be fed directly into her stomach, her swallow reflex was weak and she risked taking food into her lungs.

So many challenges. Louisa developed well, but having had two operations on her eyes in Liverpool, the surgeon indicated that while he believed he had successfully saved her eyesight in her right eye, her left eye was badly damaged as a result of retinal detachment after her birth and she would probably be severely limited in her sight. Louisa is blind in her left eye, and has partial sight in her right, but has learnt to manage this disability incredibly well.

Exercise & Caring

A busy father, working full time and caring for two disabled daughters, poor sleep patterns, tiredness and continual stress. There was only one thing to do. Exercise. But with a goal.

I decided I would attempt a physical challenge and raise money for charity. In June 2007, I cycled 240 miles from Worcester to Liverpool Women’s Hospital and back as far as Kidderminster in 2 days. I then jumped off the bike and ran the remaining 19 miles back to Worcestershire Royal. And raised over £4,000 for Bliss and the Newborn Appeal in Liverpool.

And from then on I was hooked. I decided that exercise could be an instrumental part of my own personal health regime. It kept me fit, but irrespective of tiredness, it alleviated stress and allowed some ‘me time’. Time to think through problems and to embrace some solitude.

Each year I embarked on different physical challenges, raising money on behalf of Bliss, Scope, Make A Wish and Acorns Children’s Hospice. All charities that supported Milla and us and other children like Milla.

 

 

I cycled from Worcester to London and back, cycled from Worcester to Dublin and back in 6 days, climbed Kilimanjaro, trekked to Everest, cycled from John O’Groats to Lands End in 10 days, ran the London Marathon together with my good friend Oliver Groß and did a number of other cycling challenges. And had 3 knee cartilage repair arthroscopy operations too. To date, I have raised over £30,000 for charity and wish to continue to raise more. In addition to the physical challenges, I wrote and published two charity cookbooks, Milla’s Cookbook and Milla’s Inspiration.

And throughout the challenges of caring for a severely disabled daughter and her sister, exercise helped me remain in a reasonable state of physical health. It certainly combatted the negative impacts of poor sleep and stress. Milla continued to provide all the motivation and inspiration I could ever need. Without words, her smile said everything. There was not a day that Milla didn’t smile. Louisa too grew and developed into a beautiful, funny girl, always ready with a big hug and cheeky smile.

However, while physically I felt fit, my mental health had started to be affected. It manifested itself in crippling social anxiety. I would shun opportunities to go out with friends. If I did go out, I would be looking for an excuse to leave as soon as I could. Having two daughters in need of constant care, it was not difficult to make an excuse and leave. Other times I would stand mute, wishing to be anywhere but where I was. Anxiety flooding my thoughts and an overwhelming sense of embarrassment and ineptitude. Who wants to talk to me? Who would even want to be here with me? The negative thoughts swamped me and panic attacks happened; sudden, emotionally devastating and bewildering. I began a spiral into low mood and periods of depression. All the while maintaining a professional face in front of expectant English language students at the school where I taught. A double life. Competent and composed. Professional and successful in the classroom. Useless and sad, lost and broken outside of it.

I sought help and received Cognitive Behavioural Therapy (CBT) and gradually began to piece my mind and my confidence back together. To rebuild and focus on what was most important. Look after the self and you can look after those you care about so much better.

And so life continued.

To care for a severely disabled daughter brings enormous challenges; together with responsibility, stress and exhaustion. But at the same time, caring for Milla and Louisa brought so much joy, satisfaction and love. But when you are in a bubble of a continual routine of caring, giving medicines, feeding, changing, erratic sleep patterns, hospital visits, doctors and consultants and school meetings, hospitalization etc etc, it wears you down. You remain as focussed and as motivated to do your best. The body is incredibly resilient. It lets you keep going and going and going. The reserves of energy are deep. But we all have limits. We all have a point of total exhaustion.

After working as an English language teacher for 13 years and then caring for Milla and Louisa as well, I could not go on. I was on the verge of a physical breakdown. You carry on and do what you must, because there in no other option. You have to provide the care and love and attend to every aspect of your daughter’s needs. You have to. And you do so willingly, not begrudgingly. You do so with love and compassion. It was not Milla’s fault. She is blameless. At the same time you have to help nurture your other daughter. Louisa needs support and help too. She has developmental delay together with her blindness. The children both needed our undivided support.

 

In March 2016 I was officially laid off from my teaching post. I had the option to return to work on a supply basis, as the business demand for teaching English in the UK had fallen dramatically. If work was available, and if I were able to teach, the school would offer me work. But I couldn’t. My health was suffering. My mental health was deteriorating again. So I began to provide care from home, together with my wife. It was not any easier, but I was able to focus on Milla and Louisa and also help Rini in managing the situation.

Throughout 2016, I managed to continue with my cycling. My fitness levels were still good, even though I felt jaded. Every bike ride was a chance to clear the head and stretch the legs. It gave me space, a chance to assess life, to think through problems and to recharge the batteries. Exercise is invigorating, not debilitating. It energises and gives you a lift, a boost. Give me endorphins and a rush of adrenaline from a 40mph descent off the Malvern Hills over a doughnut and a chocolate bar any day. (Although doughnuts are nice any day…)

In September 2016 I embarked on another cycling fundraising challenge. A 200 mile cycle ride, solo and unsupported, over 2 days. Cycling from Worcester to Bath and back for Acorns Children’s Hospice. A wonderful organisation that provided respite care for Louisa and Milla from a very young age and then continued to provide respite stays for Milla as the girls got older and Louisa did not any longer require Acorns help.

I cycled over the Malvern Hills and then down the spine of the Cotswold Hills, battling a constant headwind and the relentless hills. I struggled all the way to Bath, watched the end of the stage of the Tour of Britain cycling race (and cycled directly behind Sir Bradley Wiggins as he rode to his team bus) and then set off the next day to cycle back to Worcester, stopping off at the hospice shortly before completing the challenge. 207 miles in 2 days. Alone. But I knew there would be a big hug from Louisa and a huge smile and a laugh from Milla when I got back, all sweaty and smelly.

The same hugs and smiles that we had every day, when they got home from school, or I returned from work, or we picked them up from respite.

Indonesia

My wife Rini is from Java, in Indonesia. We married there in 1998 and return as often as we can; which is sadly not as often as we would like. Every 1 and a half years to 2 years we take an extended trip to visit family. When Louisa and Milla were born we were determined they would also have the chance to spend time in Indonesia and to get to know their Indonesian family. The diagnosis of Milla’s cerebral palsy and the daily challenges of a severely disabled child were never a consideration when planning our trips. We resolved that disability would not prevent us from travelling. Air travel, wheelchair use, stomach tube feeding, double incontinence, sitting for 16 hours with Milla on your lap, entertaining Louisa, jet lag…travelling is tiring enough. But we managed. We always do. And we enjoyed our trips to Indonesia every time. It was worth all the planning and effort.

We decided to return to Indonesia in December 2016 for 6 weeks. All the planning and organisation was as before. After around 5 trips with Louisa and Milla, I was used to all the bureaucracy and hurdles, form filling and letters needed to ensure the trip went ahead smoothly.

We arrived in Indonesia and took a few days to get over jet lag. We were happy to be back with Rini’s family. The love and affection they showed towards Louisa and Milla, despite a lack of a common language, was returned in the smiles and hugs from our daughters.

But then everything changed.

Milla developed a fever, perhaps a touch of a cold. Not unsurprising from travelling. Milla had frequently experienced raised temperatures, coughs and colds; her cerebral palsy meant she had difficulty regulating her temperature at times. We treated Milla as we always did. Nothing gave us any indication of anything worse. We thought she would be fine after a few days.

In the space of 3 days, Milla went from a little unwell, to a raging fever. We took her to hospital and she had a nebulizer to help her breathing. Her temperature settled. But that night, Milla’s condition deteriorated. The fever returned and by early morning she had become unresponsive. We rushed her back to hospital, but as Milla was taken to the emergency room, she passed away.

From a happy healthy, smiling little girl, to passing away in a few days.

Milla was only 10 years old. She had developed an infection which had resulted in sepsis and this had proven one last battle she was unable to overcome.

 

December 13^th 2016 seems so close in memory. Yet already over a year has passed. We returned to the UK as a family of three, not four. We buried Milla alongside her grandfather in the cemetery in Mranggen, Central Java. We left full of hope and happiness. We returned full of despair and sadness.

Nothing can ever prepare you for the loss of a child. And we had lost not only Jewel, but now Milla. Louisa had lost a sister she had never known, and her twin sister who she had been with continuously.

How do you deal with such a devastating loss? We received tremendous support from health, social and education services – counselling for Rini and I. Specialist support for Louisa in school. But counselling is only part of a process of coming to terms with bereavement. You have to learn to manage your own grief; to recognize that many days will feel as if they will never emerge from the darkness of grieving; the anger and despair and hurt and raw emotions that can burst without warning. You have to find ways to accommodate grief. For it will always be present. You have to learn to accept grief and to be aware of its presence and accept that there will be times it will consume you. But with the passing of time; which can feel as if it has stopped entirely, these instances of overwhelming sadness and loss will become further apart.

You can never heal a heart that has ben broken so unexpectedly. You can never make the heart whole again. But the healing, the support and love you receive can help you recover eventually.

 

 

 

Exercise Overcomes Grief – #rideformilla

Soon after we returned from Indonesia, I found myself slipping towards the blackness of depression. An urge to do nothing. I tried to return to work. Initially in an administrative role. It took my mind off my grief and was a welcome diversion. But when that role changed and I was asked to teach classes again, although I tried my best, I could not face the challenge. I could not concentrate and I felt I could not give of my all and I was honest enough to admit I felt I would be failing my students, myself and the school. I needed more time to grieve and I needed more time to get my head straight again. I stepped back from my work and worked to rebuild my mental health, my confidence and strength. Something that had inevitably been broken when Milla passed away.

 

Within a month of arriving home I was off on another cycling challenge. I decided to cycle another 200 miles in two days challenge, but in memory of Milla. A challenge I called #rideformilla

I cycled 212 miles over two days to the headquarters of Make A Wish in Camberley and back. There I met the amazing staff who do so much vital work supporting life limited children like Milla. They had kindly granted Milla a wish in 2012 when we travelled as a family to spend a week in Florida visiting the Disney theme parks. We have been eternally grateful to Make A Wish and I have raised many thousands of pounds for them. It is a cause I really believe in.

In Camberley, I met up with my good friend Jim Yeoman. He had cycled 125 miles up from Margate and we cycled back the following day towards Worcester. Although we did 100 miles that day, we didn’t reach Worcester on our bikes. A nagging headwind, a late start after a big breakfast slowed us down. But truth be told, I was not in a very good condition physically or mentally. I had not exercised for around 3 months and I was setting out to ride 200 miles in two days! But the thought of Milla and her smile and her memories kept me going. As did the support and encouragement from Jim, something I will always remember. He was honest too. He wondered whether I was going to get all the way back to Worcester and suggested perhaps we should look to hit 100 miles and then get a train from Evesham. I could have pushed on. But he was right. I was drained physically, mentally and emotionally. After hours and hours of cycling with my thoughts, I broke down. Crying in the wind as I struggled up another Cotswold hill. All my frustrations and anger dissipated in the wind. For now at least.

A ride for Milla. And from that moment on, I decided that every time I went out on my bike, I would ride in Milla’s memory. I would smile when the hills hurt and when the rain and wind conspired against me. Milla always had a big smile for me. Her love was unconditional and constant. The least I could do was to try to smooth the hurt and pain of loss by smiling for her and with her.

Over the course of 2017, I cycled around 3,000 miles. Every ride helped. Every ride was a chance to remember Milla, to think of the happy times together as a family and to forever recall those memories. But every ride was also a chance for reflection, a chance to escape the sadness, to save myself from teetering on the brink of depression once again. My fitness returned and I was enjoying my cycling and exercise as much as I ever had.

But with bereavement, comes emptiness. Moments that grab you and shake you without warning. Evenings which had been spent always with Milla. Louisa tucked up in bed, but Milla still being fed via her stomach tube, sat on my lap or my wife’s. Evenings that passed to sleepless nights. But a constant presence. And now those evenings were silent, devoid, bereft. Rini and I had all this time on our hands, ‘Milla time’. And it was hard to fill it without the sadness creeping in. When you are left alone in thought, your mind fills it with many different things. It is hard to be upbeat and positive.

I decided to attempt another fundraising challenge in September. This time would be my biggest challenge to date. 200 miles cycling from Worcester to Eastbourne in a day. Eastbourne on the south coast, where we have relatives and Milla and Louisa enjoyed a wonderful short holiday by the sea. A place of happy memories.

I raised money, I went on BBC radio to talk about Milla and the challenge. I had so much support. I was keen and ready to face the challenge. Leaving at 3am and cycling up to 16 hours. But, reflecting now, I was not ready. My fitness was fine, but I was not in the right condition, nor correct mental state to undertake the challenge. I was denying what my heart and head were saying. This is too much. You are pushing yourself too hard.

That I was able to cycle 153 miles in a day, easily the furthest I had ever cycled in one day, was an achievement to be proud of. If I had been alone, I would have given up long before. Indeed, I was only 3 hours into the ride and my right foot had frozen in temperatures around 3C, my bike had developed a mechanical problem I could not fix, but I could still cycle. I felt like stopping and going home. But I had friends along the route in support. My oldest and best friend, Simon Whitton was in his car, supporting every mile of the way. Guy Stapleford, who did a year of incredible challenges for Make A Wish throughout 2017 cycled 50 miles with me. And Sean Veasey appeared out of the mist near Bicester after 3 cold, unpleasant hours at 6am, waving and smiling and encouraging from his car.

But to have not completed the challenge and cycle the full 200 miles hurt. I felt I had let people down and myself down. And it rankled in my mind. I had not failed in a challenge before. Even in March I had cycled more than 200 miles in 2 days, even if I had not made it all the way back to Worcester.

Again I found myself spiralling towards negativity, depression, anxiety. The counselling helped enormously, but old habits were resurfacing. I was comfort eating and denying what was evident. Despite cycling, my weight was increasing. From a size 34” waist to a 36” waist. Which initially was comfortable and then increasingly uncomfortable. A denial that prevented me from facing the truth by getting on the scales. And when I did in late December, after the carte blanche Christmas indulgence I got a shock. I was 14 stone 8 pounds. 92.6kg. I had never weighed so much. And I was unhappy.

 

New Year, New Me, My Active Year

So I sit now at the end of March. I sit after 3 months of a new year’s resolution that I have stuck to. My goal was to lose 10kg. To get back to a healthy weight and for my BMI not to say ‘overweight’. Today I weigh 82.4kg. I resolved to continue exercising. I tried running again, but my knees were not best pleased. Stupidly after nearly 2 years without running, I ran two 5km runs and then decided I would run 10km without stopping. Which I did in 1 hour. But which resulted in knee pain and a consultation with the physio. “Perhaps you pushed yourself too much, maybe start with a mile of running and walking and build it up. It was too much of a jump.” Absolutely. As always, I look to prove to myself that I can do it, I am capable, I am strong, I will succeed. The old anxieties surface every now and then. So I backed off from running and continued with cycling.

I try to cycle for an hour to an hour and a half around 3 times a week. Usually 15 to 25 miles in a ride. A couple of longer 30 – 45 mile rides. Healthy eating, and a drastic reduction in fatty, sugar-based sweets. No chocolate bars or bags of crisps, no huge portions of cake and tins of biscuits.

Through my friend Guy, I found out about My Active Year and joined the Instagram group. A simple philosophy that works. Keep active, no matter whether that is walking or jogging, cycling, swimming or hiking. Movement is life and it has so many benefits to our physical health and mental wellbeing. Exercise can help overcome grief and by actively participating in regular exercise and receiving the support and encouragement of friends and people in the group, the motivation is renewed. The results speak for themselves. Not only has my weight gone down, I am happier and more relaxed as a result. I have learnt to accommodate my feelings of sadness, grief, anxiety and all the negative emotions that threaten to overwhelm you. Exercise has been and remains a huge support for me.

 

I will be turning 50 in July this year and I said on January 1^st that this year I would be ‘Fit and Fifty’, not fat and fifty.

So much has happened in the space of the last 12 years. So much that has been painful, stressful and sad. So much we have lost and so much we miss. But by committing to maintaining my physical and mental health by exercising as often as possible, I am ensuring that the happy memories and the achievements we as parents made in caring for Milla and now continuing with Louisa, are our dominant thoughts.

We will never forget Milla. As we have never forgotten Jewel. Louisa is developing and growing into an intelligent, independent and happy girl. She will live her life, but we see Jewel and Milla reflected in her eyes too. I will encourage Louisa to be fit and active and she will understand that exercise should be part of her everyday activities.

People often ask me why I climbed Kilimanjaro, or ran the London Marathon or cycled from John O’Groats to Lands End. My answer was always the same. I was climbing, running or cycling for those like Milla, who could not and would not have the opportunity to do so. I maintain this principle. I do these challenges for others. So that they can have a better quality of life.

But I have come to realise, that these challenges, and the exercise and training I do, are every bit as important to my own state of mind and my own health.

You don’t have to run a marathon or climb a mountain to reap the benefits of exercise. All that is important is that you get out and do something. Let the next walk or jog or cycle or swim be the start of a new you and let exercise change you for the better.