A Wing and a Prayer

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There are moments  when your foundations are shaken to the core. Moments when you realize how frivolous your life up until now has been. In those moments you yearn to go back to the yesterday you so recently complained about, where your biggest problem was unpaid bills, or how you never managed to get through your pile of ironing. Those moments humble you. They come at a terrible cost, but the only way to keep going, the only way to not just fall on the floor and wish you could simply evaporate, are to believe that you’ll come out on the other side. Somehow.

For me that moment came three months ago sitting in a chair of a docto’rs office, and I wished I could run away back to the previous week where my biggest heartbreak had been listening to my son scream in terror outside the room where he had had his blood taken every day for nearly nine days. I was not allowed to be with him. Standard practice to stop hysterical parents from interfering with important procedures I suppose. I stood outside that door and wept, every fibre in my body screaming to be with my child.

It should have been so ordinary, so routine. He had a stomach bug. He kept nothing down. We grew afraid and raced him in the middle of the night to Paidon hospital in Athens’ centre. One day passed. Two days. Three. Children around us came and went. We remained. One aspect of a blood test was wildly out of the normal range. They tried various things. Blood was tested daily. They wouldn’t let us leave. “It’s probably nothing” everyone told us.

We all hoped and waited. My son played with his toys, annoyed by the drip in his hand. It’s probably nothing. Armies of paediatricians visited. They poked and prodded. When students appeared alongside the doctors, I grew increasingly worried. Make him stand, make him sit. Does he walk? When did he crawl?

It’s probably nothing…

By the seventh day, I was growing hysterical. I walked the corridors endlessly with my son in his pushchair, singing to him as I tried to get him to sleep. I still have dreams where I’m back there walking those corridors, trapped and unable to leave. When the cardiologist refused to give consent to discharge us, saying we were free to do so at our own risk, I don’t remember how I got outside, but outside I fell to the floor and howled in terror.

The hysteria passed, but each doctor who visited looked over the blood tests, frowned and advised staying put. I clawed at my arms. They ended up covered in red welts. I dug my nails into my scalp. I was losing it.

The stomach flu passed. We were still there. Finally, with no change in the blood results, we were allowed to go home. And there I enjoyed three days of bliss. Those were the last three days of life as we knew it. Something inside me sensed it. I kept saying “It’s probably nothing. The rest of the tests will come back fine.” Something in me didn’t believe it.

On a sunny Monday morning, I sat opposite a grey haired geneticist, a kindly man. I was there to hear good news. I felt sorry for how many times this man had to tell parents something terrible.

“I’m afraid the news I have for you is not good.”

My stomach plummets. I get a strange sensation I’ve never felt before. I feel like I am falling into myself.

Stop the ride. I want to get off. I don’t want to hear the next sentence. I want his mouth to stay shut. I want to pick up my son, thank him for his time and walk out of there. I don’t want to know. Normal slides away, and I have no choice but to watch it slip from my hands in the next few seconds.

My son has Duchenne’s muscular dystrophy. I don’t know what this means. I don’t dare ask. I stare at the doctor. “What will his life be like?”

“I’m afraid I can’t tell you.”

We often hear people say their heart broke, or their world collapsed. You don’t know what those words mean until it really does happen to you. I was in pain, my chest crushing in on itself. I wondered how my heart still beat. I wept in the doctor’s chair. The future I had imagined for my son vanished. I was left with nothing, just a big question mark, darkness and questions I was too petrified to ask. My tears didn’t last very long. Shock took over and they dried. “Pick up your son” the doctor gently advised.

I went to him, this precious, perfect, wonderful creature. I lifted him up. I looked at his beautiful puzzled face. I hugged him and breathed in his delicious smell. This was the creature I loved more than I could ever imagine, so much that  a lifetime with him was not going to be enough. Now, I am probably not even going to get that one lifetime. He couldn’t say it, but his expression asked all the questions. Why are you crying? What’s wrong? I’m bored.

My sweet angel. The little soul that had given me the gift of motherhood. I had wanted everything for him. I would have done anything. But no money in the world could buy him a new set of genetics. I kissed him. Save me, I silently, ridiculously, begged my little boy. Save me.

The months since that awful day have passed slowly. We have educated ourselves and began an aggressive round of visits to doctors in Greece and the UK. It’s not easy, because our son has developed a terrible fear of doctors after his nine days in Paidon. We fight on. We fire off emails. Friends trawl the internet for leads of new therapies. It sometimes feels like a search for a figment of our imagination. Mr Zeus and each other make light of what’s happening. We push each other on.

As time moves on, we really do have more good days than bad days. But when the bad days strike, I feel exhausted already and we’re only at the start of the road. I feel tired. I feel so so old. I cry like a wounded animal. I cry for my child and what his future does or doesn’t hold. I cry tears of panic – I can’t do this, I’m not strong enough, I can’t raise a child I will most likely lose if no cure is found in the next years. I cry because a mother’s first job is to protect her child, and I couldn’t save him from this.

I get selfish and weep angry tears. Why him? Why my child? Why us? Weren’t we good enough? Haven’t we always been decent people? Haven’t we always helped the needy? Why, why, why? I torture myself with these questions, knowing that they’ll lead to nothing.

In the end, there is no answer to this question. In our case, the why will never be known. My son’s case of Duchenne’s was down to a random mutation. I am not a carrier, which is a relief because I have three sisters, and Duchenne’s carries down from the mother. When the news was broken to us, my older sister had just got pregnant after many years of agonized failed attempts. I was immediately sent for testing to see if I was a carrier based solely on my sister’s pregnancy. My test was pushed to the top of the pile and the results rushed through, in case she too would need testing.  Luckily, I was clear, which is a blessing because she is expecting a boy.

Amongst the darkness though, there are rays of light. I found a strength I never knew existed in me before. I have said it before. I’ve had an easy life. Nothing has really ever tried me. The first time I was in hospital was to give birth, the second was with my child. I’ve always been shielded from the harshness of life. I never imagined I would still be standing after this. The crushing pain in my chest is not there anymore when I wake up each morning. We check where we are on a grotesque ladder of genetic conditions, and morbidly console ourselves saying at least it’s not this or that.

I try to exude positivity. Some very promising therapies are being worked on right now. This disease may affect my son’s body, but his mind will remain intact. He can still use his intellect to be anything he wants. I found a drive I never possessed before. I retook and finally passed a mathematics-laden financial exam my office had been badgering me about for years and which I had convinced myself was too hard to pass.

Mr Zeus and I work hard at untangling our messy heads. We never imagined this would be the path our life would be on eight years ago when we met under the blazing Athenian sun. He is my rock, and every day I thank God that I have him in my life. There is no one else I would rather have next to me in this battlefield. We talk and make action plans. We fuel each other’s positivity in the face of impossible statistics. There are no miraculous getting out of the wheelchair and walking moments with this disease. There are no “I beat Duchenne’s” T-shirts.

But most of all I get my strength from my son. He gives me endless joy and hope for the future. I know he has a strong spirit that will see him through, because in the end the ultimate trial is his, not ours. When I watch him sleeping, his beautiful limbs sprawled out like a starfish, I want to kiss him endlessly. I rub his hard muscles, the early sign of this syndrome. I hope he is not in pain. I wait for the morning when he rolls out of his cot onto me with a smile and a delighted “Mama!” as if returning to me after years away. I try to remind myself of how precious our time together is when he has a tantrum or insists on chocolate for breakfast.

This post has been hard for me to write. I have cried and relived moments that still cause me enormous pain. I have been composing it in my head for months, I just couldn’t bring myself to write it. I hope you managed to find your way here to my blog today, the new home of Big Fat Greek Life, because Google has locked me out of my old blogger profile. I can’t get onto the old blog even to monitor comments, but it is still out there at http://bigfatgreeksummer.blogspot.gr/. As soon as, if ever, they manage to tell me how to retrieve access to my blog, I will link up to this new one.

I hope you don’t think it was oversharing. Writing this has helped me order my chaotic thoughts. But most importantly, I wanted to make people familiar with the name of the disease. This is what I always ask of friends when they want to help – make noise, donate, raise awareness. The more people know, the more funds are raised, the faster we get to a cure.

Throughout our journey to this point, we have been cared for incredibly well by the Greek public healthcare system. We have been treated with great care. Every procedure followed met the current recommended international standard. We were from the start treated with a lot of kindness and patience. The doctors working in the Greek public system are heroes. They do an excellent job with limited resources. Even after being awake all night and dealing with the madness of overnight admissions that often overflowed into the corridor, they were still ready to patiently answer the questions we had about our son’s progress.

We are now primarily in the care of the Muscular Dystrophy Association of Greece. Once again, we have been treated very well and with a great deal of sensitivity. This organization runs on donations alone. I give their site below. Donating even one euro will make a difference.

http://www.mdahellas.gr/

Thanks for reading. BB.

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About bollybutton

Hi and welcome to my blog! Thanks for stopping by. My name is Bollybutton. I'm an Asian woman that grew up in a barely anonymous South Asian country (you could probably guess it if you visit my old blog). I used to like in the UK for 10 years. In 2004, I came to Athens to volunteer at the Olympics, which is how I met my husband. Fast forward through the years and I'm still here, and that unlikely and much opposed romance turned into a marriage and a beautiful son. This blog is a tribute to the experience of trying to settle in Athens as an Asian and a foreigner. My original blog can still be found at http://bigfatgreeksummer.blogspot.gr/. This is the place to go for resources and where to find Asian food and ingredients in Athens, though more of the same will eventually feature on this blog. Enjoy! bollybutton@gmail.com

10 responses »

  1. hey, I’ve been thinking about you all summer. Thought you got tired of blogging. I’m absolutely gobsmacked with this post… Pardon my tears and the senseless language in my comment… If there’s anything I can do from where I am right now (besides donating), email me.

    Stay strong. Zeus and your son need you to if they are to be strong too. You’ll see him grow. You’ll see him making you proud and leaving the world gobsmacked. He’s got no other option with a mother like you and a father like Zeus.

  2. I’m so sorry to hear about your child’s diagnosis. My thoughts and prayers are with him. Stay strong and have faith.

  3. I have followed you from courtship to wedding to the birth of your son and I have no words to express how I feel right now. Tears are flowing as I type this. As a mother and grandmother my heart goes out across the miles to you. Please try to be gentle with yourself, you have a long and weary road ahead. You are brave.

  4. I am so so sorry to hear what your little boy and your family have to face – life is just not fair. Glad to hear that the Greek system is doing its best for you. (I too have used the public health here, and have been pleasantly surprised – given all the negative press they get).

  5. Bolly Button, Kalispera- Maria here(Sparta and Amherst Ma)- I wish you had simply retired from blogging, how happy we were for you one year ago- we still are- only a different reality- keep the faith with the little one , hold on tight to him and Mr Zeus- I know its draining- I am going on to the 3rd year in hospital with husband- but there are better days- the child is so young-there is so much hope for him and you- All of you are in my prayers- regards to your family, a good deliverance for your sister- keep blogging- this can not be overwritten-

  6. Thank you all for your kind words of support. Jinjir, you were weirdly one of the first people I thought of when I found out. I’ll email you. I spent a few weeks being somewhat of a pervert, sitting in my gym and staring at the bodies of the young men and their muscles. They must have wondered what was wrong with me. I wanted to cry and touch their bodies, and tell them YOU ARE SO LUCKY! In a way though this awful diagnosis has simplified my life. My goals for the future are now very very ordinary and clear. i know where I want to be in five, 10, 15 years. My dream is for my son to die an old man in his bed. I’ve grown excessively fond of the Greek version of happy birthday, which has a line that says “May you grow old with white hair”.

  7. I have enjoyed your blog on and off for many years but I don’t think I have been moved to comment. I hope this post does some good for your family and for others. You will remain in my thoughts. And I hope you get some comfort from the fact that people who don’t really know you still care.

  8. Such an articulate and brave woman,I will pray for your son and with advances in medicine it is vital you keep hope,make fun beautiful memories together and try to have relentless optimism.I teared reading your post and even though i dont know you my heart goes out to you .Wishing you continued strength, for you and your family ,and happiness. xxx

  9. Bolly – I don’t know how I missed this post when you originally published it, only saw it after your most recent posting. I am so sorry your lives have taken this turn that no one would ever choose. You are so brave to write so openly about it, and I am sure the step to a psychotherapist is a great one for you.
    I’m sending all the positive and loving vibes I can. Polla fillia to you, your son and Mr Zeus.

  10. Bolly-I have enjoyed reading your blog on and off for years. I enjoy your perspective of Greek, which, as my mother is Greek is a distinch part of my heritage. You have a voice that is instantly understandable and draws people to you, even those who do not know you personally. I was heart-sore reading of your grief and confusion.

    But, as someone newly married, trying for children, looking forward to meeting the little personalities we bring into this world and dreaming of the bond and love I will have for them, I was inspired by your strength, action and courage.

    You are an honest and courageous woman, for sharing this, for reaching out to others, for taking this problem by the horns. You have given your son a strong spirit to grow, develop and make a life. I believe you will manage this path and you will continue to challenge this fate.

    I wish you continued strength and renewed hope and joy with every little ordinary miracle your beautiful son shares with you. Stacy x

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