How can I be thankful after having a child with Down Syndrome and then being told a diagnosis of cancer – all before the age of 27?

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Let’s be honest. After everything we’ve been through, most would think I shouldn’t be sane right now, let alone thankful and living a happy, fulfilling life. After seven years of one hard thing after another, how is it possible to rise above it all to live a healthy, whole life? This question would not leave me alone for years. It wasn’t until I realised this that I was able to raise my head above the water:

The key to rising above hard circumstances to live a full, wild, joy-filled life comes down to this one thing: being thankful. 

Let me be clear – I’m not thankful for cancer itself and would never wish it on anyone. I’m also not thankful for the developmental delays and health issues that are caused by our son having Down Syndrome (although in my opinion, these pale in comparison to the positive aspects of DS). Cancer is different. I hate cancer. I hate everything it stands for. I hate what it does and has done in the past to myself and others that I know and love. I hate how the very word is enough to strike fear into anyone who has the unbelievable hardship of hearing it come out of a doctor’s mouth.

Thankfully, my last CT scan was clear (!!) after ten months img_1505of going through two separate surgeries, intense nutritional therapy, a complete overhaul of diet and lifestyle and physical, emotional and spiritual detoxing. Thank God.

It is still a battle. There have been many times when I have thought that this chapter of my life was over, only to have another worry, another concern, another fear rear its ugly head. At first, I thought I could only be thankful after coming out on the other side of this valley. I’ve now learned that it’s more important to be thankful and stay thankful when you’re in the middle of it, and this is what makes all the difference.

When I was first told the diagnosis, I couldn’t even say the ‘C’ word without feeling emotionally overwhelmed and completely inadequate to deal with everything that comes with it. Yet now, when I look back over this and the many hard times we’ve had before, I don’t wish that these times had never happened. I feel the bittersweetness that I can imagine a wind-torn and half frozen mountain climber feels after conquering Everest. I look back over my life and, from this viewpoint, can see how every hard thing we’ve gone through have been little mountains that we’ve had to conquer as practice for this, our Everest.  I see now that out of every single time of hardship we went through, including this sheer cliff of a challenge of getting through cancer, that unbelievably – good has come out of it. Every time.

This last decade has not been the easiest so far – to make a massive understatement. For the last seven years we have been blindsided again and again by one thing after another. My sister put it well when she said it was as if we kept getting hit by a bus. Then we would finally manage to get to our feet and be able to stand again, only to get slammed. Again. And again. If a publisher was given the story of my life as a novel, they would most likely throw it out for being too unrealistic. What are the odds that this many hard things would happen to one person?

Being told I had to leave my home country of Israel because I couldn’t get a long-term visa when I was 19. Being denied entry into the UK just after getting engaged to my British now-husband at 20. Then being told I would be deported and being held for 32 hours (the legal limit is 24) in a narrow holding cell with 10-12 others without being told any official reason why (also illegal). Getting personally sued as a named defendant for sending out an email for my boss in my first job out of university at 23. Being thrilled at getting IMG_2954pregnant with our first child at 24, only to find out at the 20 week scan that our child would most likely have severe brain damage and possible problems with his heart. Our baby making a miraculous recovery and the opposite happening to what the consultant projected – only to find out an hour after the difficult birth that our child has Down Syndrome. This happened at 25 years old.

Then, this. At 26, just when we had picked ourselves up and had come to terms with having a child with additional needs, I then got hit with cancer. Seriously, what are the odds? I seem to be an expert at being the one in a thousand.

And yet, unbelievably, there’s still more. This is hard to share, because it is by far one of the hardest things we’ve had to walk through. 

Two days after the shock diagnosis, I found out — I was pregnant. After I did the test I locked myself in the bathroom and sat on the floor for about an hour processing the news. This news, the news that we had been eagerly waiting for since we had started trying again earlier that month, now brought on a whole new onslaught of extreme emotions. Disbelief. Fear of the future. Fear of the implications of going through cancer treatment while being pregnant. Anxiety. All of these, along with feelings of being hopelessly overwhelmed, were mixed in an emotional cocktail with feelings of joy, elation and a hope that somehow, in the middle of all this darkness and sadness, there could be a ray of happiness – that one thing in our lives at least was happening how we wanted.

Until. A week after I went through extensive surgery to remove the tumour, we went to the 12 week scan. Even though there had been risks with having a general anaesthetic while being pregnant, we were reassured that if anything were to happen with the baby, it would happen right away. As of yet, there had been no sign or symptoms of anything wrong, so we went fully expecting everything to be fine. Until we heard those awful words – we can’t find a heartbeat.

Blindsided. Again. The one happy thing in our lives, the one ray of hope we had in the middle of the darkest time of our lives, gone. We were crushed. I had what is called a silent miscarriage – the baby had stopped growing at 8 weeks, 4 weeks before the scan, but I had no symptoms or signs whatsoever that anything was wrong. 

Sadly, we discovered afterwards that this is all too common, though it is never talked about. In one friendship group I have, four of us had similar heartbreaking experiences of this within two years of each other. Four out of six. Unbelievable. The fact that this happens so often is a heart-wrenchingly hard truth – yet it is a truth that never gets talked about. Our culture has made it into a taboo subject, so much so that many parents go through the grief of losing their child silently on their own. Most have no idea that there are so many others that have been through the same thing and would grieve along with them, supporting and loving them, if they only knew. As hard as it is to be open and vulnerable in our grief, we feel we need to let others know that they are not alone. Light does eventually break through the dark.

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Our baby at 8 weeks.

The day after being told that we had lost the baby, we found out more hard news. When the doctors examined what they had removed after the surgery, they discovered that the tumour had grown to twice the size and had spread to 6 out of my 19 lymph nodes on that side (thankfully these were also removed in the surgery). This made it stage 3(c) cancer – one stage before it would become terminal. They said that the tumour had been a millimetre away from my chest wall and if it had spread further, it would have been inoperable and incurable. As it was, they said there was a good chance that it had already spread to other parts of my body (which would make it terminal), and booked in an MRI scan for the end of that week. Still reeling from this news, two days later I then went through the surgical procedure to remove the baby.

Unbelievable. That hellish week was the hardest week we’ve ever had to go through in our lives. By far.

It makes no sense. My life so far reads like one of those ridiculous movies where every possible thing that could go wrong does go wrong. Of course there were also a lot of highs in between all the lows in the last seven years: I got engaged; got a first in a media degree at university (a university I got into as a direct result of being put in that holding cell – good did come out of it in the end); got married to my best friend and one who has been a rock and an anchor to me; started a business; released my debut album & I had a beautiful, perfect son. And after preparing ourselves (twice) for being told that I would only have weeks left to live and somehow trying to coming to terms with this, we went to the appointment to get the results of the scan and it showed that miraculously, it hadn’t spread and there was no visible sign of cancer left in my body!

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Leaving the hospital after the first surgery

And now, after going through everything we have, I can honestly say that I am thankful for everything that’s happened in my life. I can even say, now, that I am thankful for the good things that have come out of having a child with Down Syndrome and from going through cancer.

Cancer has changed me – I would even say for the better. It has given me perspective like nothing else I’ve been through. It has given me a passion to live life well. A knowledge that I can’t take my health for granted, giving me the motivation I needed to treat my body with the value and respect it deserves. It has given me an insatiable desire to go after my dreams and desires, to live a life of meaning now, instead of thinking I have years to do everything I want to do. It has taught me these things:

  1. To live a life of gratitude. 

    When hard things happen, the lifeline that keeps you from sinking into the pit of self-pity, bitterness and depression is this: staying thankful.

    I honestly believe that staying thankful is the only thing that’s kept me sane. I’ve held on to it for dear life; I found that whenever I would find myself sliding into the temptation of wallowing in self-pity, cynicism or bitterness that would eventually lead to depression, I would consciously choose to find something to be grateful for and it would snap me out of it. Every time. I heard it said once that even if 90% of your life is in pieces and only 10% is good, take that 10% and be thankful for it. Eventually, the more you focus on that 10%, the sooner it will grow to 15%. And so on, until soon that 90% won’t be ruining your life anymore; it will shrink until all that is left is that which you are thankful for. I have also heard this said:

    Be thankful for the bad things that happen in life, for they open your eyes to the good things you weren’t paying attention to before.                                       – Unknown author

    This is so true. I am now so thankful for every breath I take – even the ones that feel like they are tearing out of my lungs when I go running (and people who know me know the fact I choose to go running now is a miracle in itself). I know now I can’t take the good things in life or even life itself for granted. I am grateful to have been given the life I have and the husband and family (both my physical family and our extended family of our community and friends) I have, who have supported me like I never would have imagined possible. I am beyond thankful for our little boy.

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    Our boy loving his cake at his 2nd Mexican Fiesta birthday party

    Most would think that having a child with special needs on top of going through cancer would (to say the least) be a burden and added difficulty. For us and others I know who have been through similar things, it has been the opposite. He helped us get through this time more than anything else after our faith, family and community. 

    And I am beyond thankful to God for giving me my life back. As I said in my last post, I don’t believe for a second that God causes hard things to happen to make us better people. But I do believe that he is the master of the turnaround. I believe that though he grieves with us while we’re in it, somehow he always manages to bring good out of the worst circumstances in the end. Every time, and after the questions and the fears and the doubts and the rantings fade away, every time I am grateful for it.

  2. To live a life of conscience. Before this happened, I tended to go through life like it would last forever and that there would be no consequences to my health from the choices I would make. My teen years consisted of eating a sugar-coated cinnamon bun and drinking a bottle of coke every day for lunch, and living off of frozen pizza and fluorescent-orange-toxic-waste-coloured macaroni and cheese out of the box (not even an exaggeration). I was always the one who would pretend it was my time of the month and that I was suffering from cramps to get out having to do the mile run at school (no lie). Later on, while my eating habits changed, I always had intentions to start exercising but never got around to it. Since I had a pretty high metabolism, I never had any motivation to get healthy – until now. Getting cancer was a wake up call. It showed me that, despite what I subconsciously believed before along with most other twentysomethings, I am not invincible. It has given me the motivation needed to live a life conscience of wellness. I now choose to eat a whole-foods, plant-based diet (more on that later) and live a healthy, preventative lifestyle that now has me, ironically, feeling the healthiest I’ve ever felt in my life.

    What a post-run breakfast looks like these days

    Living a life of conscience means knowing that every single choice I make has the potential to bring life or, on the flip-side, take away that potential of life.

  3. To live a life of meaning. I recently met with some friends from school that I hadn’t seen in nearly ten years and as we were reminiscing, one of them said that the main thing that had changed in her life since our school days was the definition of living a meaningful life. I couldn’t agree more. It’s no longer about having the perfect career, perfect marriage or perfect family. For me, it comes down to this question: who am I serving? Einstein puts it like this:

    Only a life lived in the service of others is a life worth living.

    In other words, life has no meaning unless you’re using it to serve others. ‘Serving’ is a loaded word in our culture of me-first, look out for number one, do anything to get ahead. To us enlightened millennials born in the age of reason, of information and of over-achievement, what is the point of spending our time serving anyone that doesn’t help us get ahead in some way? Since all this has happened, I look at it a different way. When life is so short and when what really matters all boils down to the people that you impact with your life, what is the point of only serving yourself? Luke puts it well when he says, what is the point of gaining the world if, in the process, you lose your very self?

Above all, going through something like this makes you reevaluate and rethink everything, including what you think about God.

Believe in God or not, being faced with the very real prospect of meeting your Maker makes you brutally honest about what you think about him.

Going through this shook me and my faith. It shook everything I thought I knew, but after all the earthquakes and shakings finally stopped, what has been left is a faith that is stronger than ever before. It shook off all the insignificant, superficial things that we tend to think are so important, and made me realise that what’s important in life all comes down to getting my life right with my Maker. It’s about choosing life every day. It’s about living in a very real relationship that’s built on trust and a knowledge that there is hope for the future. It’s about living a life of gratitude, a life of conscience, and a life of meaning.

Going through everything we have has made me realise that above all, life is fleeting. All of what we think is so important can be gone in an instant. It has made me see what really matters and how I can live my life in a way that counts. And now I can honestly say, I’m thankful in all of it.

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15 thoughts on “How can I be thankful after having a child with Down Syndrome and then being told a diagnosis of cancer – all before the age of 27?

      • I belive with full elling for you. God is good all the and is hand not to short to save. He loves you, and your familly. He cares for you he is not going to let you down. Hold you in prayr if you ask it naomi morher i am also had a very heart time with my son atar. But god all the keep is promis for is elling and calling. So i am not going to give up and trust him. I dont look at my eyes any more but by is spirit. Love dikla.

        Liked by 1 person

  1. Wow – this is so good. It can help so many people- no matter what their life circumstances are. It’s so well written. It’s difficult to read about the many trials you have had to face but I am so thankful, above all else, for your strong faith in God- the only thing that really matters. You are truly amazing and He has done a tremendous work in your life that will touch multitudes. Love you so much, Mom

    Sent from my iPhone

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    Liked by 1 person

  2. Thank you for sharing…This was so well written and really touched my heart and gave me some amazing perspective. God is so good…happy to hear you and your family are doing well.

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  3. Pingback: There is always hope. | Finding Perspective

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