Lessons that helped me deal with the toughest hardship of my life

“Your son has Duchenne Muscular Dystrophy. This is a 100% fatal disease for which there is no cure.” In June last year this phrase put my life upside down.

We had just celebrated my son’s 6th birthday. Three months earlier, the neurologist had informed us that something was wrong with his health but there were different possible outcomes, some of which were ‘not that bad’. We went through a never-ending period of blood tests, muscle biopsy, MRI-scan, heart-scan, lungs analysis and more to determine what was going on with our boy. I had spent my days and nights searching on Google and was shattered between hope and despair. I was getting an average of 3 hours of sleep per night and walked around in disbelief. And then it was confirmed: my son has DMD.

DMD is a progressive disorder causing muscle weakness and atrophy. Sufferers are confined to a wheelchair between the ages of 8 -12 years after which respiratory problems start. The average life span is between late teens and earlier 30s.

Now what? We left the neurologist’s office and for a while I cried in my husband’s arms. But there was also a form of relief. At least we finally knew what is was. There was no uncertainty anymore. We were going to have to face this, now it was time for action.

I had asked the neurologist what I could do and her answer was ‘nothing’. This was unacceptable for me to hear so I insisted: “what would be the most beneficial for my son?” “Physiotherapy, swimming and the sun” she replied. We were living in France, near Paris and that evening I told my husband: “let’s move to Dubai”.

Close friends of ours live in Dubai and we had visited them several times. We loved Dubai and my husband had the opportunity to work from there for years but I was reluctant because of my apparent successful career in Finance. But a year earlier, I had already left Finance and started a Coaching activity to bring more meaning to life. The DMD news changed everything. There was no more time to waste. Our son could probably walk only a few more years.

Within three months we organised everything and moved to Dubai. It was September 2017, temperatures hitting 40°+ Celsius. We had to find a house, buy all the furniture, start a new school, new job, find our way around, it was hard. My main focus was on finding the right health care providers.

“Don’t do it”

Most of our family and friends had strongly advised us against moving to Dubai. France is known for its excellent health care service at almost 0 costs. Dubai was a different story. We had difficulties finding Duchenne experts and until today we haven’t found a single health insurance ready to cover all of our son’s health costs. We knew this and decided to move anyway. Why? To give our son the best life possible. At least for as long as he could walk and/or for as long as we could financially afford it to live in Dubai. We have never regretted this move. I absolutely love Dubai and have only been positively surprised by the facilities here, the life style, the genuine kindness of people, the open-mindedness, the visions of the rulers and their efforts to make life for people with a disability slightly easier. For example instead of the word ‘handicap’ the UAE says ‘people with determination’. How beautiful is that! I hope we will be able to stay here as long as possible.

I have been passionate about personal development and growth for the past 10 years. Everything that I have learned in that journey of reading, coaching, attending seminars, trainings and more have helped me tremendously to become stronger and to be able to live with this new turn in life.

7 Lessons worth sharing

1.      Give yourself time to digest the hard news and for mourning. Cry it out, hit a wall, release your rage and mostly treat yourself with compassion. Outsource whatever you can. When we heard there was something wrong, without knowing the diagnosis, I was devastated. I cancelled all my meetings that weren’t crucial, told my clients I needed some time and didn’t accept any new clients for several months. I hired a young lady to go and do fun activities with my children.

2.      Before you can effectively make a change, you have to first accept the situation. Don’t fight against the current, you will exhaust yourself. Acceptance is key to focused action. You can of course not accept the presented outcome (like me) but you have to accept the situation you’re currently in, in order to make an efficient change. The first thing to accept is that you cannot control everything. I had so much difficulty with that.

3.      Don’t fall/stay in the victim role but take ownership of the situation. You have way more power than you think. Whatever happens to you, no matter how desperate the situation, you always have power. Power to choose how you see the situation. Power to choose how you let it affect you. Power to do whatever you can do. Power to let it make you stronger. Power to use your experience to help others. See below what I did that was still in my power.

4.      Don’t let anybody tell you how things will end. Always keep hope. Miracles happen every day. Be open for new ideas, new solutions and meeting new people with new insights.

5.      People love to give advice; they do this to help you. In a sense, it’s what I’m doing here. Listen to them and then forget about it. Do what seems right for you because nobody has ever walked in your shoes.

6.      Do not compare your life with anyone else’s. Especially with Social Media nowadays we only see what people want to share and that is rarely the hardships they go through. If you want to compare with anyone, compare with who you were last year. Don’t focus only on the outcome but celebrate small wins, small actions, your progress.

7.      Life will end. We all know it but we often pretend not to. You will die! So live, don’t just exist, don’t wait for later, when xyz, truly LIVE now.

What is in my power?

If I look back, these are a few examples that were in my power to improve our son’s life:

-         Moving to Dubai, for the sun, beach, pool

-         Swimming several times a week to exercise his muscles

-         Improve his nutrition: we reaplaced wheat, dairy and refined sugars with fruits, vegetables, nuts, seeds and dried fruits. Whenever possible we buy organic.

-         Choose the best school for him where he feels valued and capable

-         Great physiotherapists where he goes 2-3 times every week to stretch

-         Relaxed attitude: not worrying about the little things anymore

-         Do things now without waiting or planning for later. Go to new places, discover new things, explore, create, laugh more

-         Positivity: every night I ask him to tell me the 3 things he has appreciated most that day to train his mind to see the positivity in the little things. He started with answering ‘nothing’ but now challenges himself to name more than 10 things a day

-         Gratitude: just before sleep I remind him to thank his body for everything it’s doing for him: thank you my heart for pumping my blood around, thank you my longs for providing me air, thank you my legs for being able to walk, etc.

-         I often sing a Dutch song for him which translates to ‘I love you exactly the way you are, never change for me’

-         Stretch his muscles and massage him every evening

Today our son is doing wonderfully well. His neurologist and physiotherapists are positively surprised and tell us to keep doing what we’re doing and that is exactly what we’re planning to.

All of this positivity and personal growth wouldn’t have been possible without the touching support of our family, friends, colleagues, clients and even complete strangers.

The most beautiful lesson DMD has taught me is that behind every person, every title, every mask, there is a human being with a heart full of kindness and compassion. Let’s bring that out more, we all need it.

What about you?

Please comment on what you have learned from your hardships. What further advice can you give people who are going through a hard time?