A Tale of Darkness & Light: How A Mother of Cancer Survivor Turned Pain to Power

March 21, 2019            ــــ By: Dina Al Mahdy

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Radwa Moussa-Youssef, 35, is a mother of three children (Zein, Malak and Aya). She lives in the USA with her family and runs her real estate business with her husband Tamer Youssef.

A major life event occurred to Radwa and her family in February 2013 when her oldest son, Zein was diagnosed with Stage 4 Neuroblastoma cancer, and began a journey that turned her family’s life inside out. She published her first book, Zein, A Tale of Darkness and Light, which became a bestseller in its first week at the 2019 Cairo Book Fair. The book reveals the true story of how her family decided to turn every negative into a positive and embraced life despite its harsh reality.

In this interview, we discuss her writing career, her family, life challenges, advice to families of children with cancer and more…

When did you start developing your passion to writing? Was being a writer your dream job?
I think since I learnt how to hold a pencil! I’ve always had a passion for writing. I still keep all my journals, poetry, short stories I wrote as a little kid. Becoming a writer was always my dream job! I even thought of pursuing journalism as my major in college at some point, but given I had a passion for learning the aspects of business and the fact that my writing style is more of a non-fiction raw reflection of life, I figured I would pursue it differently.

I started publishing my pieces and work in several magazines when I was young. Starting as a young kid in a magazine in Egypt called (Teen Stuff), then after I got married in another magazine called (Dear Guest), finally in 2017 I launched my blog (Radwa Moussa-Youssef) which was originally known as (Rudiz Blog). I’ve always had a thing for the written word, it has its own magic to reach your heart.

54521675_1740092036090951_8706348684125667328_nFrom the book reviews on “Zein: A Tale of Darkness and Light”, many readers wrote it is a life changing book as it has changed their perspectives on life and the way they deal with their problems. Tell us more about your first book? Why did you decide to share your story now? What do you want people to get out of it?
It is very humbling to see the beautiful response from all the readers in different age groups and walks of life really. When I first decided to write the book, it was due to my personal experience with childhood cancer with my eldest son Zein. This traumatic experience, or experiences if I may say completely changed me! If I thought I was a strong woman before, this took strength and independence to a whole different level! I learnt a lot and our story by the grace of God became a beacon of light to so many, not just ones who are affected by cancer per say but any challenge in general. Thus, I felt the social responsibility to share the message with the world.

The book covers a lot of lessons and real life stories, one might think it is a sad cancer story, but in reality it deals with the raw experience in the way we should deal with life in general… with both strength and sarcasm. It is an uplifting journey with details that will make you laugh, cry and relate to yourself while reading it. I poured my heart into it wanting the people to see the light after each darkness, the smiles amidst the hardships and overall the beauty of life. We might not have a choice in what life throws at us, but we sure have a choice on how to deal with it.

How did Zein’s sister, Malak, cope with Zein’s disease and support her brother and parents during his treatment?
Malak was and still is a rock star! We decided from day one to earn their trust by including them in everything. With Malak, we shared with her the reality of the situation through age appropriate details. She was always by her brother’s side, supporting him and playing with him. She prepared a poster for him every time he comes back from a surgery or a hospital visit. We encouraged the positive reinforcement knowing that it plays a huge role in his and our morale. She had her tough moments, but now she is a public speaker and advocate for siblings of kids with cancer. She recently just donated her hair to create wigs for kids undergoing cancer treatment.

How long did it take to write and publish your book? Did you plan to write it in Arabic? Tell us more about the acknowledgment of your book?
It took me a total of five and a half years. I had to put it on hold for a few times due to Zein’s condition that was changing throughout the years. I originally wrote it in English though aiming to publish it in the US where I reside. But after connecting with Al Dar Al Masreya Al Libnaneya in Egypt and figuring out the need to change the taboo of talking about and dealing with traumatic experiences and especially cancer, I decided to publish first in Arabic. I translated and re-wrote it myself which took me another year in the making

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Being a working mother of three children, how did you manage to juggle between your role as a mother, a wife and an author?
Time management is key! Life will never get easier or less hectic. If anything, its pace keeps moving fast and steadily every day. As impossible as it may sound, but making time for myself is so important! It doesn’t have to be a day at the spa without the kids – which in all honesty sounds amazing lol – but it could be making sure you get your quiet time even for 30 minutes a day to clear your mind and reflect. Prepare a to-do list and don’t give up on it. In my case I dedicated an hour of committed writing every morning before the kids wake up or as soon as they go to school before I start my day. I plan ahead for house work, meal prep, school work and my own business. Life happens and the schedule falls off the wagon occasionally, but picking it up and organizing it again is key!

Tell us more about your family life before and after Zein’s diagnosis? How do you describe your journey in life?
I went through a major trauma early on in my life which was also discussed in the book when I lost my mother at a very young age. This experience really shaped who I am and I believe that I chose the strong positive direction of life early on. I hated being the pitied on little girl who lost her mom and sported my way through life with passion in everything I pursue. After being a mother, life took a completely different direction and especially after cancer. Life as I know it as a mother and wife became before and after cancer. I feel blessed looking back and seeing all the times I could have easily fallen and never gotten back up, but yet by the grace of God and the support of my family and friends I was able to get back on my feet and turn a negative into a positive. Taking these challenges and turning them into an experience to help others.

Knowing that your son’s chronic disease is a persistent problem, how could you manage to cope with this fact?
It is a mindset that is easier said than done! In the beginning our life completely stopped and we fought so hard to squeeze in normal moments in between the cancer treatments. Yet, as we moved on in our journey we decided to take control and change things a bit. It was the moment I realized and said it out loud that no matter what his health status is, I will always be a mother for a cancer patient. Maybe not with active disease again – God forbids- but the after math of cancer and long term side effects is not going any more. That’s when I decided enough is enough! We live every day and die once! I will live every day setting goals, embracing the moment, enjoying what’s given to me, making fun of what’s difficult and accepting the weak moments as they come through. It is a ride and I accepted its ups and downs.

Raising a child with a chronic disease while pursuing a career is one of the toughest challenges any woman could face. How did you manage to pursue your career during the hard times you have been going through?
I don’t think being a mother means giving up on one’s dream! My personal goal was to be a published author, being a mother just magnified this goal and gave it a different sense of responsibility. I’ve always known that my published work should be one of life changing content. It happened to be my first book with a life changing story.

I think we set the example for our kids on how they should deal with life moving on. There will always be a list of responsibilities and hurdles, yet one should make time for their own dream no matter how long that takes or how much life throws at you. It wasn’t easy in my case, and it took a long time! But the key was being persistent and always setting a goal that success is one thing, but falling through in the process is inevitable, it is picking yourself up every time that counts and makes you stronger.

Writing is a form of expressive therapy that eases feelings of emotional trauma. Did writing help you work through your emotional pain?
Big time! I started journaling this book first as thoughts before I drafted and outlined it as a book. It definitely helps getting all those mixed emotions out. Bottling up never helped anyone!

In your opinion, do children with cancer and their parent need psychological therapy to help them cope with this challenge?
There’s a stigma about seeking psychological therapy, that one who seeks it has to be a in loss state of mind, while in fact talking to a professional help drastically most of the times just to put things into perspective and organize your thoughts. Especially, when it comes to a family with children with cancer. Caregiving is a TOUGH JOB! It takes a toll on you, and by default we always put our kids first. There is no shame in asking a professional or even seeking help when needed. We didn’t feel the need to seek continuous help, but my husband and myself are constantly educating ourselves on how to improve our parenting techniques, reading, asking professionals when needed. Also, communication is key! One of the most important things would be talking openly about the subject, allowing each other to vent and support one on one time with the kids and the parents.

54197814_250462919069431_2254328737673773056_nZein is a real miracle child with a beautiful smile and a source of inspiration to many other children and mothers. How did he develop his inner strength? How do you describe his outlook at life?
He has always been this happy chill child. I feel like because of the way we empowered him with his disease he continued to have a positive outlook and just enjoy himself. Especially the fact that he missed a lot from his childhood makes him cherish the “normal” moments a lot more.

How did you get a child at this age to understand the disease and the treatment he would be going through? How did he take the news when there was a recurrence?
Zein was first diagnosed at the age of five and a half, we chose simple words to describe the magnitude of his disease. And as we went on we made sure we disclosed everything with him, especially the parts that includes physical pain re-assuring him we will always be by his side and support him. The moment we lie to our children or undermine their feelings or the facts they are living, is the moment we lose their trust and hence their desire to never give up. It was much harder on him when his cancer recurred twice at an older age, he was more coherent then and aware of the situation.

Aside from talking to him, addressing and respecting his feelings, supporting him and constantly planning positive and happy surroundings, gatherings, or simple outings to keep the normalcy of life smooth…there is really not much you can do except pray he goes through the motion and gets back to himself like we adults do. Kids are persistent! They teach us to never give up.

Your book revolves around the moments of hope and despair. In what way has your experience with Zein changed your life?
Everything now has a more magnified meaning, when one gets so close to losing his kid and seeing death coming so close, nothing feels or means the same any more. I was told to take Zein home three times in three different occasions. Getting that close to losing my kid in addition to seeing him go through that much pain is life changing to say the least. That’s why hope comes in ways to uplift us fully and despair comes to humble us that everything changes and passes. Hence the title of my book (darkness and light)

One could choose to live in despair and not be able to see the hope no matter how much it presents itself in different ways, and others could choose to hold on to the thought of hope especially when life gets rough. I chose the latter way.

What are the most rewarding aspects of having a child with a chronic disease?
It teaches you to be present! It teaches you that there is no time to waste on silly things and no space for toxic or negative people. It built my stamina and taught me coping mechanisms in ways I never thought before! If I could juggle a chemotherapy session after a major surgery while driving back and forth to the hospital with two kids one of them is a cancer patient for example, then juggling lunch boxes and sports practice with school and work should be a looked at as a blessing not a stress.

What is the greatest moment you have had with Zein?
Plenty! The moments he rose to the occasion, the moments he taught me life changing lessons without him knowing, the moments I fell apart and saw hope in his eyes… I mentioned them all and much more in the book. Moments like these are what gives life a meaning. I hope the readers see and practice these messages in their daily livesJ

What does Zein want to become when he grows up?
He wants to be a scientist that invents food to fight and combat cancer instead of the toxic chemotherapy and radiation. Going through it he always wished there was a treatment that is not as harsh on the body like the ones he went through

What is the mission of “Create a Smile” organization? Are you planning to extend its activities to Egypt?
Create a Smile is my nonprofit organization that I proudly co-founded in California where I currently live, its mission is to spread happiness and allow cancer kids to feel “normal” while taking them away from the reality of cancer. all this through personalizing experiences and gifts in ways to help the ones undergoing treatment maintain a positive attitude. We believe a smile goes a long way! It is hard to administer it given I don’t live in the country, however I always encourage any initiatives that are inspired by Create a Smile to start their own entities with their own unique names.

What advice would you like to share with families of children with cancer? How did you manage to overcome the challenges and fears that all parents of children with cancer face?
It is not easy! Embrace it, look it in the eye and leave it all in God’s hands. Our fear is relentless; it is living with it and finding joy within the pain is what makes us stronger. Ask questions and educate yourselves, surround your kids with a happy and positive atmosphere always and address the challenges openly. The world should cope with you not the other way around! Being a caregiver and a cancer parent is the toughest job, you need YOU and you need each other to go on.

54519312_407942123104671_3427607214737588224_nWho are your greatest supporters amidst all the chaos and fear you have been through?
My husband! The one who lives it with me minute by minute and second by second. We decided to unite from day one and talk about it. Always allow and make time for effective communication. Our community as well came together when they found us open about talking about it. Sometimes, people want to help but they don’t know how. It takes a village! And as humans we should always have each other’s backs

After being awarded and recognized by Facebook as a Social Media Ambassador in the Middle East region, what are your future campaigns that you are planning to launch in Egypt and the Middle East to raise awareness for childhood cancer?
It was such an honor to be awarded this title in my recent visit to Egypt, because I believe that in a time where social media is a huge influence on our world we should be using it wisely and positively. This platform helped me reach millions of people and spread the message loud and clear and I intend to continue doing it, keeping it real and raw.

I just launched my first campaign with another social media charity platform in Egypt called (Mega Kheir) announcing our partnership in giving back a percentage of the book to childhood cancer in Egypt and I am working on a couple of more projects to help spread positive content. I am in constant pursuit of effective and fruitful partnerships for the greater good.

God has created us for a specific purpose and mission. In light of your challenging but inspiring journey, what is your mission in life?

Being an advocate and an activist for childhood cancer evolved from my role as a mother to make it a mission of mine to spread happiness and positive energy to everyone I meet. I think combining my passion of helping others while writing gave my life a bigger purpose. Living everyday while creative constructive and inspiring content is a mission that will live for years and years. One that I hope will inspire my kids to pursue their dreams and always live with a purpose.

What is your message to your family, and to all the children with cancer and their parents?
Thank you! Thank you for inspiring me, pushing me, and supporting me in everything I do! I love calling my kids my best friends and my husband my partner in crimeJIt wasn’t an easy journey for sure, and God knows what life has in store for us in the future.

But I am grateful to every moment and my family’s existence to make my life and my mission worthwhile. And to all the other families with cancer, kudos to you… for your bravery, for your strength and for your perseverance. Never give up, stick to each other and especially when times gets rough. Our faith only gets tested in hard times, be ready! It is not an easy ride but it is one that will change you forever. It is on YOU to make it change you to the better version of yourself. Much love and respect to all of you… you are GOLD

What are your future plans on the personal and the professional levels?
My book thank God is sold out, went to print again and made it to best-selling in Cairo book fair and currently in the Middle East. My goal is to partner with a US or UK based publisher to release the English version and start planning for my next book. Now that I started, I feel so excited about continuing to pursue writing with the goal of spreading creative and positive content.

Check Radwa Moussa-Youssef Facebook Page here

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