The Impossible Can Happen

Overcoming cancer one day at a time

To find out more details, visit our go fund me page here:

https://www.gofundme.com/helpestherconquercancer

If someone had told me five years ago that I would be told I had cancer at 26 years old, just over a year after finding out our firstborn son’s surprise diagnosis of Down Syndrome at his birth, I would have dismissed it as a cruel joke. What are the odds? At 26 years old, with no family history, with a little boy who (despite how amazing he is) has extra challenges and needs me to be there for him? There’s no way. It’s too much.

If someone had then told me that I would find out it was a rare, aggressive and fast-growing type of breast cancer (a particularly aggressive, recurrent strain of triple negative, the hardest to treat conventionally) with only a 10% survival rate, I would have been left in a state of disbelief. Especially if they told me that the doctors would then say, after two surgeries and then finding a third lump in my lymph nodes within nine months, that they did not recommend having surgery again since it would just keep coming back. Or that eventually the doctors would say there was little else they could offer that would help my chances of survival. That conventional therapies like chemo and radiation would most likely have no effect on it whatsoever and would be palliative (have a small chance of helping extend my life), not curative.

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The oncologist told me back in August 2016 that by the time of my next scan in three months time, it would have spread throughout my body to all my major organs. That I would most likely have no hope of survival once this happened.

26 years old. No hope of survival. The words themselves seemed impossible.

If I had been told that instead of accepting this grim prognosis, I would find after doing much research and reading that there are thousands of first-hand accounts of people turning around even a terminal cancer diagnosis through a radical change of diet and lifestyle, natural supplements and alternative treatments, I would have been skeptical and cynical. In fact, at the beginning, I was. If this is true, that there are other options, why do we never hear about them from our doctors?

As I did more reading and research into it all, I found that there are other options that doctors either haven’t been taught about or dismiss because there haven’t been widespread (expensive) scientific studies proving beyond a doubt that treating cancer naturally actually works. Even though Hippocrates, regarded as the father of medicine, famously quoted ‘let food be thy medicine and medicine be thy food’, this kind of thinking is now usually dismissed and ridiculed. In my case, I decided to try it and threw myself into it, changing my eating habits radically to a whole-foods, plant-based diet and doing a host of different natural and alternative therapies. What did I have to lose?

Up until recently, 18 months after my oncologist said it should have spread throughout my body, the cancer had miraculously still not spread anywhere else. It remained localized and contained to one area in my lymph nodes under my arm.

AND, after starting to take high doses of a powerful liquid mineral supplement at the beginning of the year, the lump started to actually shrink! MIRACLE.

This is our story of how the impossible can actually happen.

More than putting our hope in surgeries or food and supplements to save me (although I’m sure they helped a huge amount), I believe this is because we put our hope in a God who specializes in making the impossible happen. We’ve had prayers flowing in from around the world that I know our God has heard. We believe this is the God who wants to see every person on earth healed, whole, set free and living life in abundance, until it overflows. The God who will stop at nothing for his children. The God who makes it possible to still live a life of joy and fullness despite our outward conditions. The God who gave up everything, became human through his son, came down to his creation and went through unspeakable torture, pain and death so that we can have health, wholeness and life to the full. The God whose son’s name we only have to whisper to be rescued and made new. The God who has carried us through this and every other hard battle we’ve had to face, the one who has somehow managed to turn the most impossible of circumstances around for good. Every single time. And we are so thankful.

However. This journey is not over yet.

Although the lump started to come away, it came to a standstill and has become a large open wound, causing intense pain and multiple bandage changes a day. I have been having constant pain of about 7 out of 10, with intense periods of pain that is 10+ – at times even worse pain than I remember having in childbirth. My left arm has become swollen, painful and unusable with symptoms of lymphedema, which is common after the type of surgery I had. I have had little to no energy and can’t move my arm without causing the pain to be even more intense, which means no housework, no lifting our son, no cooking, no diaper changing or doing the millions of other things it means to be a mother. When we first arrived I was spending a huge amount of time every week in the prayer and worship room here which made a big difference, but for the last few months haven’t been able to play piano or go up as regularly because of being pretty much glued to the bed or couch.

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My happy place – Succat Hallel, Jerusalem

We recently celebrated our beautiful son Levy’s FOURTH birthday (how is that possible??), who is doing so well despite it all. He recently started at a mainstream school here that he miraculously got into (another impossible story I’ll share later), and is thriving and absolutely loving it there. He has a beautiful little girlfriend already (this boy!! Little heart throb) and friends who rush up to hug him as soon as he gets there. He’s walking on his own more and more, still singing songs constantly at the top of his lungs and can now count to twenty in English and to ten in both Hebrew and Arabic! We couldn’t be prouder of him.

The hard part was having to celebrate his birthday at home, opening his presents on the couch because of not being able to do much else. We did make it to the aquarium one day (which we thought he would love. He was not impressed), but I would have loved to do so much more to celebrate him.

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Opening Levy’s birthday presents on our couch with Anna, who was Levy’s volunteer carer for a few months and who has been a huge help to us

On top of everything else, having these pains and symptoms has also meant little to no social life or having people over, no going out to show visiting friends and family the sites and no traveling, even to other parts of the country to see friends or get away (all things I love to do). I’ve barely seen anyone since being back and haven’t been sleeping or able to leave the house much because of the pain.  Although we have had had a huge amount of help from our incredibly supportive families and friends, it means my husband William has had to become the working father, house husband, household chef, primary caregiver and tour guide for visiting friends and family. We’re so thankful for all the help we’ve had. Despite it all, we became exhausted.

Because of the intensity of the pain and the swelling keeping me from sleeping or functioning, we decided to go to the hospital here to see what could be done. About a million tests and scans and long days spent in the hospital later, we found out the results…and they were not what we were hoping for.

The latest CT scan showed that the cancer has started to spread throughout the lymphatic system. They also found a small mass on my spine, making it stage 4 metastatic cancer.

We were devastated.

It was still a miracle that it hadn’t spread any further or to any organs. And though this diagnosis usually means it would be terminal, the hospital here still gave us hope. They told us about a new medical treatment called immunotherapy, which works by supercharging the immune system to recognize and fight against the cancer itself and has seen incredible results. After finding out more about the potential of this new treatment, we decided to look into cancer clinics that specialize in immunotherapy.

We found one such clinic near San Diego, called the Immunity Therapy Center. It uses cutting edge medical technology and treatments, combined with holistic, non-toxic, intensive natural therapies. Most people who go there are stage 4 and, judging from all the independent reviews on Google of it that are overwhelmingly positive and 5 star, have had incredible results. Most report a huge improvement within a few weeks of treatment, with some testimonials (including ones with stage 4 or triple negative breast cancer) saying that within two weeks, the lumps disappeared and they actually left the clinic cancer free.

Since it’s so far away, it’s been a big decision to make. After a lot of prayer, research, talking it through and confirmations, we all felt a peace that this was the most promising option for me to take. As soon as we got in contact, everything started miraculously falling into place for me to fly over and start treatment right away. Within three days from making the decision to come I was on the plane (!!) with my mother, who came with me to support me so that William could stay home with Levy. We had the easiest, most stress-free travel experience I think I’ve ever had to get here. I just finished my first day of treatments here and already felt a difference, feeling a lot more energy. We set up a Go Fund Me page that has unbelievably raised the entire initial amount for the treatments in three days! We have been blown away, humbled and so grateful for all the support that has come in from all over the world.

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Although the initial goal has incredibly been reached, we’ve decided to raise it since there are additional costs coming up from having to see specialist doctors and take medications/supplements that aren’t included in the treatments. They have also strongly suggested having some treatments or procedures outside the clinic that would incur additional costs, along with all the other costs of living with this condition. There is a chance as well that I may need to stay longer than the initial three weeks depending on how I respond to treatments.

We are so thankful for everyone who’s given already, and would appreciate beyond words anything else that could be given – every dollar donated and link shared on social media helps us a huge amount.

As hard as it’s been, we know we will see this impossible situation turned around for good. We’ve seen the miraculous happen too many times before for us not to believe it will happen again. I believe that soon, we will be celebrating a miracle that seems inconceivable from a medical perspective. Until then, as hard as it is right now, we will keep believing that the impossible can, in fact, happen. This is what fuels our hope and gives us the strength to carry on in the face of the hardest of circumstances. God has brought us through this far and we know he will finish what he has started. We know it’s only a matter of time.

To donate and find out more details, visit our go fund me page here:

https://www.gofundme.com/helpestherconquercancer

Please spread the word and share to help me beat this! Thank you 🙏🏼

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A different kind of perfect

**Note: The title and the idea for this post came from an interview I did earlier this year on the Pilgrimage Podcast with Joshua Luke Smith. To hear more of our story, you can listen and subscribe to the podcast here.**

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Three years ago, our world was turned on its head – in what turned out to be the best way imaginable. After our beautiful son’s birth, we found ourselves suddenly faced with an unexpected diagnosis of Down Syndrome. In that one moment, our lives changed course completely. Being honest, I found the idea of this life – a life that was so far removed from the idea of the ‘perfect’ life that I had always dreamed of – difficult to accept at the beginning.

This image of perfection – the idea of the ‘perfect’ life, career, home and family – is so ingrained in most of us from childhood that it makes it hard to take when life inevitably doesn’t measure up. I had always planned out in my mind what my perfect life would look like, strongly influenced by media and western culture.

Then this boy came into our world, took my idea of ‘perfect’ and smashed it into pieces — remolding it into a different, better kind of perfect than I could have ever imagined.

I’m so thankful for this champion of a son and am so grateful we get to call him ours. He has made the last three years the best three years of our lives, despite all the hardships we’ve had to face and how different it has been to the life I always imagined.

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As a young girl, I would lull myself to sleep by planning out my dream life. In my fantasy future I would travel the world helping people and making a difference as a photojournalist. I’d live a nomad life of going from one adventure to the next, before finally settling down into married life. We would have four kids (two of our own, two adopted – one little Vietnamese girl and a little boy from somewhere in Africa). We would live in a glamourous, exciting place (most likely Jerusalem, where I grew up) where we could soak up the sun for 9 months of the year, making music and changing the world together.

Instead, I ended up getting married halfway through my Uni degree, having a son with a surprise diagnosis of Down Syndrome three years later, and living in rural southwest England for eight years where it probably rains nine months of the year. At least. And – just to top it all off – I was then told at the age of 26 that a lump I had assumed was a clogged milk duct was actually an aggressive form of breast cancer.

Not exactly what I imagined as a young girl. Yet – and I can say this in all honesty – my life is beautiful. Although I’m still very much in the middle of my journey of conquering cancer, I’ve recently found a new appreciation for this life I’ve been given and how good it is. It’s messy, it’s hard, it’s nothing like the ‘perfect’ life and family I thought it would be. But I’ve realised that it is absolutely, 100% perfect – just a different kind of perfect to what I expected.

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And, after eight years of living in the UK and finally accepting that we may never move back to my heart home of Jerusalem because of practical and financial reasons, it suddenly, unexpectedly all fell into place for us to move back! Just a few weeks ago we packed our house and our lives into six suitcases and finally came home. Seemingly impossible dreams can still happen.

Getting married and having our son were two of the best decisions I ever made, and if I could go back I would make the same decisions all over again. I honestly have loved my life until now – as different as it is from what I had imagined. I am so thankful for having the family, friends, community and homes I have had, both in the UK and in Jerusalem (along with our wider family & friends across the globe). And I am beyond thankful for our son.

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He, and others like him, are so different to what the world calls perfect. From the time we’re given Barbie and Ken dolls as children, up through adolescence and our entire adult lives, we’re constantly being sold this image of perfection. An image that is – by the way – totally unattainable and unrealistic; according to this article, if a woman were to have the same body measurements as her favourite childhood Barbie doll, she would most likely be unable to menstruate and have to walk on all fours because of her wildly unrealistic body proportions. The other role models young girls have to look up to are the other extreme. Skeletal, androgynous, stick-thin models dominate every shop window, magazine and runway now. Yet, from a young age, one extreme or the other is what etches itself on our subconscious minds of what the ideal woman is – the ideal that most women strive to be and that most men feel like they need to end up with.

As we grow older, the image of perfection spreads to having to have the perfect life, the perfect career, the perfect home and the perfect family. This social pressure comes at us from every source imaginable: television, films, magazines, music, shop windows, billboards – not to mention, of course,  the relentless barrage of social media. Pinterest, Facebook and Instagram have become some of the biggest propagators of this social pressure to fit in and measure up to this image of the ‘ideal’ life. Being honest, how often do we look at the impeccably designed homes and Instagram-filtered lives of others and feel, deep-down, like we could never measure up to what we’re constantly told our lives need to look like?

In our work or creative lives, how many times does the need for perfection stand in the way of creating? They say an artist’s work is never finished – that no matter how long is spent working on a project, it could always be better.

There comes a time when releasing any work, that we have to consciously take a step back, switch off the perfectionist part of our brains and say ‘this is enough.’ Why is it, then, so hard to do the same for ourselves – to take that step back and know that we are enough?

Many times we don’t even realize we’re buying into the lie. We spend our income, our time and our lives trying to fit in to this impossible image – and when we fail, which we inevitably do, it costs us. We desperately don’t want to be different, so we do everything we can to at least still present a façade of perfection. Even if our lives are falling to pieces under the surface, at least if things still look good and the same as everyone else on our Instagram feed, then maybe we can still feel some small measure of success.

But imagine for a minute a world where everyone was the same, where everyone did fit into this image. A world where there were no differences. Where everyone acted the same, spoke the same, looked the same. Where we all lived in our comfortable bubbles and there was never anyone or anything that would make us feel uncomfortable. Where there was never anyone or anything that would stretch our minds beyond ourselves. Or that would challenge us and our perceptions, our stigmas, and our stereotypes that we put on others, whether consciously or subconsciously. Or that would ever cause us to leave our comfort zones.

Imagine a world where every single person has somehow managed to shape themselves (at least on the surface) into this mold that the world has decided is the ‘perfect’ way to look, the ‘perfect’ way to act, the ‘perfect’ life to lead. Where our identity and self-worth is defined by how well we fit into this mold we’re constantly being sold. A world where anyone who is different and who doesn’t fit in this mold is sidelined and marginalised. A world where we are pressured to silence we are pressured to silence those who won’t necessarily “fit in” before they’re even given a chance to live.

It sounds intense, I know. But this is the world I believe we’re heading towards if something doesn’t change. And yet I believe the opposite is also true: we have the power to safeguard the diversity and perfect imperfection that makes our world so beautiful. To embrace and be authentic and vulnerable about our beautiful, messy, imperfect lives. To be a voice for those who are different and who may not have a voice for themselves (at least not one that the average person on the street would take the time to listen to). To give dignity and self-respect to those who are too often sidelined and marginalised. To bring to light the value of those who may be different but who have so much to contribute and teach us, if only they were given the chance.

October is Down Syndrome Awareness month, where we have been celebrating those, like our son, who rock the extra chromosome they were born with and bring a beautiful diversity and joy to our world.

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This month we have been celebrating our son. He has taught us to love deeper and fiercer and freer than we ever loved before. He loves to do whatever he can to make us laugh and stop and enjoy life every single day – even the days when it all feels too much and too hard. He finds the smallest things like a cough or sneeze the funniest thing ever, and will get to the point of finding it hard to breathe because of laughing so hard and long if he so much as hears someone blowing their nose. He sings at the top of his lungs, constantly. His favorite songs range from Swing Low, Sweet Chariot and You are my Sunshine to worship songs like King of my Heart and Catch the Wind (first thing he asks for every morning now), to Happy by Pharrell Williams and So Fresh, So Clean by Outkast (old-school, I know).

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He’s now decided he wants to be called Levy (from his nickname Calevi that we’ve called him at home since birth) since it’s easier for him to say (although if it were up to him it would be Levy-O – but we had to draw the line somewhere!). He has a gift of knowing exactly what to do when it feels like our world is falling apart that seems to make everything better. And he knows how to make each person he gets to know feel like the most extravagantly loved person in the world.

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Before we moved back to Israel, Levy had started going to preschool (!!), a mainstream school with a forest school ethos that he absolutely loved and thrived in. We weren’t sure at first if he would cope with all the children and noise and new environment of a mainstream school. I also had a fear in the back of my mind that he wouldn’t be able to make friends like other children – that other children might look down on him, exclude him or even bully him because of his differences. Yet he has proven our fears to be needless again and again. He couldn’t wait to go to school every day. He joined in and was included in everything they did (since it’s a Forest School that means even learning to build fires and survival skills!), and had a crowd of little friends who loved him and would run to play with him as soon as he arrived.

We’re hoping to find a similar school for him here, where he is already thriving and loving being with all his cousins who live down the road (eight, to be exact – all from one sister! I know.). His cousins can’t get enough of him and fight over who gets to play with him or sit next to him. They sing songs together and love showing him off to all their friends, who equally love him and love playing with him. We have been blown away by how much our little boy is loved and how much joy he brings to everyone he meets.

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Of course there have been some extra challenges that have come as part of the package. Although his speaking (and singing skills) is above average for children with Down Syndrome his age, he still wasn’t walking by three and a half years old. For over two years, our time was filled with waiting, physiotherapy, exercises and frustration.

Until one day, my husband Will came through the door from work. Levy dropped everything, yelled ‘Daddy!’ and speed crawled over to his father’s waiting arms as he did every day. This time, though, was different. A few steps away from where Will was waiting for him, he suddenly stood up on his own and walked three steps to get to him! Will looked up, shocked, to where I was standing at the kitchen counter with my hands over my open mouth, tears quickly filling my eyes. Because as hard as it is to wait for him to reach milestones that children less than half his age find easy, it makes it all the more beautiful when it does finally happen. I never felt my heart achingly filled to bursting with pride and joy more than in that moment.

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When it finally happened, he did it completely by himself, with no cajoling or striving on our part. We just had to wait for him to be ready on his own terms (like with everything else it seems – he takes the term ‘strong-willed child’ to another level), and learn to enjoy each season for as long as it lasts (even when it seems like a lifetime).

Although with some things it takes him longer than with others, he consistently continues to break out of every box we subconsciously put him in. And he continues to teach us the value of living each day to the full, enjoying each season, and embracing life in all its messy, glorious imperfection.

So here’s to those people, like our son, who may not “fit in” to that perfect image but who can often teach us, if we let them, what it is to live life fearlessly and to the full. Who teach us that the best kind of life we can live is one where we celebrate the messy, the hard, the imperfect. Who teach us that it is, in fact, possible to have a perfect life. It may just be a different kind of perfect. And that is more than enough.

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 There is always hope.

Sitting on our kitchen counter is a block print of a Banksy work of street art. Since Bristol-based celebrated graffiti artist Banksy is somewhat local to us, we’ve always been big fans of his thought-provoking, often provocative works of art. From a work showing a crucifix where Jesus is holding Christmas shopping bags as a statement of what Christmas has become, to a child stitching flags as a scathing statement against government-sanctioned child labour, his works of art are often a satirical commentary on the state of the world. There is one in particular, though, that has always struck a chord in me. It’s an image of a little girl standing in front of a gust of wind, letting go of a red heart-shaped balloon. Seeing it always stirs up thoughts in me of a loss of childhood wonder & innocence; a little girl choosing to let go of her child-heart when faced with the harsh realities of life. It would potentially be a dark, depressing picture of the inevitable loss of childhood faith and optimism if it weren’t for these words written next to it: There is always hope.

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It’s not known for sure whether Banksy wrote these words to go along with his stencil or if someone else decided to juxtapose the image of loss with this truth; the truth that no matter how much loss and grief we may face, it can never eliminate all hope. I’ve found that this is a truth that, though it is so simple, has the power to transform how we live life. How would we live if we truly believed that, even when faced with unthinkable circumstances and loss, there is always hope?

I have had to face this question again in my life recently. A few weeks ago, unbelievably, I found another lump. After having gone through two separate surgeries and intensive nutritional therapy for ten months, this came as a huge blow to us. Especially after we got the news back from the doctors that this time it didn’t look like surgery could be an option. Thankfully the CT scan showed that it hadn’t spread and was still localised to the lymph nodes in the same area as before, which came as a surprise to the doctors. After another long consultation with the oncologist, we came away having to make a hard decision. She reiterated what she had told us before, that because it is the rarest and most aggressive type of breast cancer there is (grade III, stage 3c and triple negative) and because of my age and circumstances, chemo would most likely not be effective in my specific situation. We had already started looking at other options before this happened, and thankfully already had made plans for me to go see a health and wellness treatment centre run by believers in Germany that we had been personally recommended.

I found it to be an incredible place, combining an intensive medical and natural treatment plan (custom-made, based on individual lab and blood test results) with emotional and spiritual healing and prayer in a peaceful, welcoming and restful atmosphere. They have many success stories of people who have come from around the world, many with more advanced stages of cancer who were only given days left to live, who were miraculously able to turn it around and live long, healthy lives (some of who we know of personally). After a series of events that seemed to confirm this is the way forward for me, I made plans to come back for an extended time of three weeks of intensive treatments.

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A typical first course of lunch in the Wellness Café

These last few weeks have been challenging in more ways than one. The biggest challenge we’ve been getting to grips with has been to find the balance between living in wisdom, yet not allowing fear or worry to have any hold on our minds, and living in faith, yet not living with blinkers on shielding us from the facts or with our heads in the sand. We’ve had to have some hard conversations. There have been hard moments where the full harshness of the situation has made itself all too clear.

I had one moment recently where the possibility of having to leave my loved ones finally hit me like a sledgehammer with full force. It broke me. I had a strange experience of being detached from myself, looking down at my body collapsed on my knees with half an avocado in my hand, weeping my heart out on the kitchen floor. I had to come face to face with the very real possibility of having a life cut far too short. Yet, and I know this sounds crazy, it wasn’t a fear of death that overcame me. I had read this book a few years ago that completely changed my mind set about death. It changed how I viewed the end of life as we know it. I believe that facing death is not the end. I believe that it is only a stepping stone to the fullest, most thrilling adventure we could ever undertake. That there is more than we could imagine waiting for us on the other side. More intense pleasure, more freedom, more pure unadulterated happiness and sheer joy than we could ever experience in this broken world. I believe that this is the world we were made for, the world that the deepest parts of us craves and is homesick for. C.S. Lewis puts it like this:

“If we find in ourselves a desire that nothing in this world can satisfy, we can only conclude that we were not made for here.”

So no, I wasn’t a wreck on the kitchen floor because I was feeling sorry for myself (though that is a totally valid response to anyone going through something like this and I have definitely had moments of doing that before). Thankfully because of my paradigm shift that had taken place before any of this happened, I can honestly say it wasn’t that I was concerned about myself. Of course, I would have regrets or things that I wished I had had the time to do with my life. But the most painful part of being hit with the possibility of this was thinking about my loved ones being left behind. My amazing family and friends, who have stood by me, supported me and who have loved me so well this last year. My incredible husband, who has sacrificed and given up so much of himself and his hopes and dreams to keep our family together. My beautiful little boy who brings so much life and joy wherever he goes, who loves nothing more than sitting on my lap, snuggling in and having giggle fests at random noises and words he comes up with.

The truth is, I couldn’t imagine them living life without me. I didn’t want to. I think the reason why I never was able to fully face the harsh facts was because I didn’t want to think that they would have to go on without me. And, although it was hard and I do still believe wholeheartedly that I am going to make it through this and live a long life worth living, I believe this was a necessary part of letting go. Of getting to the point where I could genuinely release my family and have the pressure taken off of feeling it was all on me. It was hard. But it was beautiful. It was freeing. And it made it possible for me to think about leaving them for an extended time of treatments, which I could never have imagined doing before. It’s still hard being away. But I can give them up to God and know that it’s not up to me to take care of them – it’s up to Him. And this is one of the most freeing things I’ve ever experienced.

After these hard conversations and moments, it would have been easy to dwell on the what ifs and dark possibilities of what’s ahead in the name of living in wisdom. Yet this is where faith comes in as the counterbalance. It’s been the kindness of God that, after carrying me through this hard experience of letting go, He has confirmed again and again that there is more in store for me. That this is not the end. That my dreams and hopes for my future are nothing compared to what He has in mind, and that this is only the beginning.

I’ve just arrived in Germany and have the guest house where the treatment centre is almost completely to myself. For an extreme extrovert and verbal processor like myself, finding it hard enough already being on my own and away from my husband and little boy (especially on Thanksgiving Day!), this could feel like a prison sentence. Instead, I’m seeing it as a retreat; a time to rest, get the treatment I need and have some spiritual rejuvenation. Time to write and come to terms with this news we’ve been given.

Time to come to a place of balance of living in wisdom, of being aware of the facts, yet living in faith in the conviction that this is not the end of my story. To get to a place of being able to be thankful and stay thankful in all things. I’m slowly learning to live from the place of knowing that no matter the circumstances, there is always, always hope.

Sunrise overlooking the fields surrounding the treatment center

(PS – Happy Thanksgiving to all my American readers! May we all learn to be thankful every day, not just today;)

The day our world stopped turning.

Deja vu – but worse. So, so much worse. That’s the only way I can think of to describe what we’ve been through this last month.

A month ago, on January 14th, 2016, I went to the hospital and was told a shock diagnosis.

I was told my body was fighting an aggressive form of breast cancer.

I’m 26. I have absolutely no family history of it. And yet they told me the diagnosis was a grade III, stage 3(c) triple negative invasive ductal carcinoma which, according to the doctors, will require surgery and possibly more. Unbelievable. Unthinkable.

It still doesn’t feel real. It feels like a dream that I’m going to wake up from any minute. Even when I talk about it, it feels like I’m talking about someone else. Distant. Far, far out of reach. And yet over the last month, with the never ending tests, ultrasounds, biopsies, mammograms and consultations with surgeons and oncologists, it’s become agonizingly real. Too real.

I thought I knew the extremes of emotions a human can feel. It turns out I didn’t know the least of it. It’s the same feelings all over again that we felt when we first heard our 21-month old son’s diagnosis of Down Syndrome – shock, disbelief, anger, denial, despair, fear of the unknown and of the future. The same feeling of being blindsided and hit by a monster truck with no warning. Times those feelings by ten thousand, and it comes close to what we’ve been hit with this last month.

The first two weeks were the hardest. I was exhausted emotionally, physically and spiritually. But somehow after the initial onslaught of emotions being ravaged and getting so angry my husband had to stop me from punching through the car window; after all the tears had been spent and questions of why had been thrashed out; after it felt there was nothing but emptiness left inside me, somehow, this inexplicable peace started slowly filling the void inside. It was as if I could feel heaven’s tears and I knew – I was not alone in this. I would get through this.

The last few weeks I’ve felt closest to Heaven that I’ve ever been in my life. I’ve felt a deep peace and joy that make absolutely no sense, given the circumstances. The important things in life have become more real and clear to me than ever before, and all the unimportant things have faded into the background. My faith in God and personal experience of him as a kind, good father has been what I’ve clung on to; it has given me strength when I felt I had none left. It has carried me through these last few weeks and become more real than this tempest that has been raging around me. It feels as though  I’ve been taken above the dark clouds to a place where I can somehow, unbelievably be at rest and have hope – despite the circumstances surrounding me.

I know that this is not the will of God. Though I believe He is all powerful, I have been searching it out the last few weeks and I also believe that His desire for us to have free will and love Him freely is more important to Him than the ability to exercise power and to control and micro-manage our lives. We live in a broken world where terrible things happen as a result of this. This does not mean that He makes these things happen. I believe it grieves Him when things like this happen more than anything we could feel in our finite human emotions. I have felt Him closer than ever before in the last few weeks, and I know that His will is for me to be healed from this.

I don’t know what that will look like. It could be an instant supernatural miracle (which is what we’re hoping and praying for), or it could be through doctors, treatment or other ways. I’ve been learning there is no formula; there’s no way to predict what He will do. As C.S. Lewis wrote in the Chronicles of Narnia: “He’s wild, you know. Not like a tame lion.” But this I know – He has a plan for me, to prosper me and give me hope for my future; whatever that may look like. Something my sister said to me that she heard from a teaching by Danny Silk has helped me through this time – that instead of having specific expectations of what will happen, we need to live in a state of constant expectancy. We don’t know what will happen, but we do know the promises that we’ve been given. And we can know that these promises will happen somehow. This is the rock I’ve been clinging on to. We know that though it seems like there’s a fierce army at our backs and a sea of unknown ahead of us, He will split this sea so that we can walk through it.

We have had so much support these last few weeks. We’ve been surrounded by incredible family and friends throughout this whole time that we feel so, so thankful for. So many people have been supporting us, praying for us, believing with us for a miracle and offering to help in practical ways. We appreciate all of you more than we can say. All of this has helped us get through the difficult time we’ve been going through.

What’s helped us the most though, after our faith, is our son. This boy, so full of life and joy and personality, has been the furthest thing away from being a burden or added difficulty as most would think having a small child with Down Syndrome and additional needs would be during this time. He has been the opposite – he’s been a bringer of joy and a reminder of the good things in life. No matter how low I feel; no matter how weighed down I may be feeling, I can’t help but laugh when I’m with him. He is constantly laughing, doing his party tricks of animal noises and raspberry-blowing, doing whatever he can to make people laugh – his favourite thing to do in life it seems. His latest thing is taking your head in his hands, holding your cheeks and putting his face as close to yours as possible, and doing what we call an ‘old man laugh’ – not letting go or even letting you turn your head away until he gets you laughing back. He seems to have this uncanny ability to read people’s emotions and know exactly what they need in that moment – whether that’s to make you laugh when you’re down or reach up to give you the tightest hug he can when you need it the most. I am so thankful for this boy. I know he will help us through whatever this next chapter of our lives may be.

I don’t know what the future will look like. But I do know that we can trust that even this, like so many other storms we’ve been through in the past, will somehow be turned around for our good. I am thankful for having family and friends around us, supporting us and being there for us. I know I’ll get through this – and that I won’t be alone in it. I’m continuing to live in expectancy. And I know that though it feels like we’re walking an impossible road with walls of water on either side and though it feels like this night will never end, we will come through it and the light will come. It’s just a matter of time.

Coping with the Unexpected

“We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.”

E. M. Forster

I have to say it – I love Christmas.

I didn’t always. Growing up I had mixed feelings about Christmas to say the least, usually accompanied by a general feeling of bewilderment about what it was all about. Growing up in Jerusalem, where Christmas is practically nonexistent; where there are no decorations and where everyone goes to school or work on Christmas Day, it would usually feel flat and anticlimactic. Experiencing Christmas other years visiting our extended family in the United States was the other polar extreme – to make a colossal 1082019019understatement! With ten meter high inflatable Santas on every corner, every house competing to see who could have the most glitzy Christmas lights and decorations covering every inch of outside space, and advertisers constantly trying to overwhelm the public with how much they need the latest and best things for Christmas, it would leave me…confused. How did the holiday that’s meant to be celebrating the immense joy of Light entering the world and shattering our darkness become so…plastic?

Don’t get me wrong, I loved being with family and all the traditions, but something about either extreme left me unsure about why Christmas is meant to be the most wonderful time of the year (as you hear in every song in the weeks [months now?] leading up to Christmas).

That all changed 6 years ago. When I moved to England and experienced Christmas here, with just enough tasteful decorations and lights to get you into a holiday mood without being overwhelming (although that is of EastWestPhotographers_FromeIndependent_Dec15-67course down to personal taste), mulled wine, Christmas markets and buskers singing carols and festive atmosphere filling the streets, I turned into a kid again. I started reliving my childhood and now have 3 different Christmas playlists on Spotify playing constantly for the whole of December, deck out our house with lights and decorations and wear Christmas jumpers (sweaters for those from the other side of the pond) pretty much every other day for the month. I guess you could say I’m making up for lost time of humbug years (it’s also the only way I’ve found to get through the long, dark and very wet English winter!).

Yet along with all the lights, Christmas music and festivities, there is a part of the days leading up to Christmas that still feels bittersweet. 2 years ago, the day before we were going away to spend Christmas in Devon with Will’s family, we got the news at our 20-week scan that shattered our expectations, turned our worlds upside down and changed our lives forever – that all was not well with our baby. I’ve recently been reliving those days as I’ve been writing our story as an article for a local magazine produced by a UK charity for new parents, called National Childbirth Trust (NCT). It was published a few weeks ago and I thought I’d share it on here. It’s written mainly for expecting or new parents who have had to deal with the unplanned for in any part of the pregnancy, birth or post-baby experience. But my hope is that in sharing our story, it could in a small way help anyone who is going through a storm that the unexpected in life can bring.

Hope you all have the happiest of Christmases and a joy-filled New Year, with our love. X

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Coping with the Unexpected

How to handle when life doesn’t go to plan

Most of us have a plan  for our lives, whether it be a conscious or subconscious one. When it comes to pregnancies, births and babies, we are constantly told we should plan it all out. Plan your pregnancy, write a birth plan, plan out how you want to parent your children. These are all good things in themselves. But what happens when, as happens more often than not, things don’t go to plan?

Since I was young I remember dreaming about my future and planning out my life. I wanted – among other things – four children and relaxed, natural births with no problems (my sisters have 12 children between them so this was on my radar from an early age). I thought of course there would be no issues with this plan; my sisters had low-risk pregnancies and perfect, natural births for all of their children who were born with no health issues. I thought that since I have the same genes, of course I would be the same. How wrong I was.

The beginning of our pregnancy seemed to be going perfectly to plan – my husband and I decided to start trying for a baby three years into our IMG_9595marriage and got pregnant within the first week of trying. The first few appointments and the 12 week scan went perfectly well; I was classed as a low-risk pregnancy and was told I could have my birth at a natural birthing centre as I wanted. We went on blissfully until our 20 week scan, when – suddenly – our perfect world was shattered around us. Sitting in the antenatal scanning room, I still remember the feeling of ice-cold numbness and the sensation of falling when they told us there was a problem with our baby. They had detected extra fluid on his brain and what looked like a problem with his heart. They told us to come back in two weeks for another scan by a heart specialist and to meet with a consultant about what this would mean for our baby.

Those two weeks over Christmas 2013 were some of the longest in my life. My perfect world and plans had just shattered into a million pieces. Nothing seemed certain anymore; I was told our baby, who I had already formed such a strong bond with, who I already loved fiercely and wanted to protect, could have severe brain damage and heart issues that would affect his entire life – and ours.

Two weeks later we came back and they had a cardiologist do a heart scan. Thankfully, it showed that there were now no problems with his heart (you can read more about Caleb’s story here) – but the fluid was still an issue. We had decided together that we loved this baby and would want to keep it no matter the cost. We also decided that we would rather not do the Amniocentesis screening for Down Syndrome and other conditions, as this can cause a slight chance of miscarriage. Since we knew we wanted this baby, we felt there wasn’t much point and thought we’ll just have to take whatever comes.

(This was a personal decision we made based on our own feelings, beliefs and values. Looking back I often wondered if we should have done the screenings – if only to prepare ourselves for the future. Now, though, I am so glad we personally chose to wait.)

The consultant confirmed our fears, saying that his projection was that the fluid would continue to increase, taking the room needed for the brain to develop and would most likely cause severe brain damage. He said that instead of the natural water birth at the midwife-led birthing unit in Frome I was hoping for, we would need to deliver at the Royal United Hospital in Bath and be under constant monitoring. He said that instead of the skin-to-skin bonding time I wanted after the birth, our baby would need to be taken away from us straight after the birth for surgery. He then said that instead of going home soon after the birth to start our lives together as we wantedIMG_2954, we would most likely need to stay in the hospital for a good few weeks with our baby in the intensive care unit. Everything he said – everything – was the exact opposite of what I had always imagined and planned for my first birth and baby.

I know I’m not alone in this. So often, our pregnancy, birth and baby plans that we work so hard on making a reality end up crumbling around us – often, because of circumstances and through no fault of our own. Whether it be where you want to have your baby, how you want to have it, or how you want to parent and feed your child, sometimes – despite our best efforts – these things just aren’t possible. But what do we do when this happens? How do we cope when life doesn’t go the way we planned?

It is completely natural to feel disappointed, even devastated when things don’t go to plan. It’s easy to dwell on the disappointment; to let the things that go wrong consume us, affecting our lives and everyone and everything in them. A friend of mine calls it the ‘dark cloud period’ – when everything is filtered through a hazy lens of grief and disbelief. It can be easy to blame yourself, to feel like a failure or feel that the darkness will never lift. The first thing to know is that these feelings are natural and valid. “Feelings are feelings, and they are all OK,” says expert Crystal Clancy, a licensed marriage and family therapist who specialises in working with pregnant women and new parents struggling with postpartum difficulties. “Many people, women especially, feel guilty or shameful about their feelings. [Mothers need to] express their feelings and see that their feelings do not make them a bad mother, person, wife, woman…they need to honour those emotions.”

After asking local parents about their experiences of things not going to plan with the pregnancy, birth or post-baby, one of the main things that stood out from the responses was the importance of talking these feelings through. ‘I wish I had talked about how I was feeling more with my husband and friends, rather than bottling it up,’ said mum & NCT volunteer Jessica Slater. Mum Alice Starr, having been through an unplanned emergency caesarean, agreed; saying it’s important to talk through emotions and stress that can come from experiences not going to plan. She also said it’s important for people to realise that things can go wrong for anyone and to prepare yourself beforehand, which several other mothers agreed with. Mum Michelle Jones, who had to be induced twice, said: ‘I think women need to be prepared far, far more for the possibility of interventions (perhaps not routinely but in cases where they look likely).’

Mum Claire Schneider, who also had an emergency caesarean, also highlighted the importance of hearing or reviewing your medical notes after the birth. She said: ‘It was only six months after my first was born that I discovered the actual reason for the section. I had spent six months blaming myself & believing I had failed.’

Feelings like these of self-blame and guilt are a common thread woven through experiences that parents have had of things not going to plan. It can go beyond pregnancy and birthing experiences to the realities of breastfeeding, recovering from the birth and parenting your child. Women often aren’t told during pregnancy that breastfeeding, whilst incredibly rewarding and beneficial, can sometimes also be difficult and painful at the beginning rather than easy and natural as it’s usually portrayed. You can read our experience of Caleb finally learning to breastfeed after four months of constant exclusive pumping here. Mum Lottie Hooper, after a difficult experience with breastfeeding, said: ‘I wish I knew that I could’ve had help from so many people, like La Leche [and] local breastfeeding support groups. I also know [now] that it’s OK to express and feed if I don’t feel I can do direct [breastfeeding]…and topping up with formula is OK’. Often if breastfeeding doesn’t work out, mothers are made to feel guilty and ashamed – even if it is through no fault of their own, as is often the case. Says mum Filipa Vance: ‘I expected it to be easy and natural. When I couldn’t do it the first time around I felt like a failure.’

Often even the way we planned to parent our child can change, and it can be easy to blame yourself for your child not fitting into the ‘perfect’ routine or what we are told is the ‘correct’ way of parenting. Says mum Michelle Jones: ‘If I could tell my pregnant or new mum self anything it would be to relax, not worry about other peoples’ opinions and do what feels right. I stressed way too much over getting parenting ‘right’, believing there was a correct way to do it when there totally isn’t, every baby and every parent is different so of course we can’t all do it the same!’ Mum Carrie Hillis echoed this, saying that if they were to do it again they would be more relaxed and not feel guilty for parenting differently to how they thought they would. She said, ‘I think there is too much emphasis on the perfect baby who has a perfect routine and when yours doesn’t fit that image it is so emotionally tough.’

There are times when experiences go beyond being disappointing and are traumatic, which can cause post-natal depression or even post-traumatic stress disorder (PTSD). If you feel you may have this, it is important to consider speaking to a mental health professional. You can ask your healthcare provider for a referral to someone who has expertise in this area. For others who have a lingering disappointment that may not be as serious but is still worth addressing, there are methods to help get through the ‘dark cloud period’ that is so common after things don’t go to plan.

Talking through your feelings and having suIMG_0348pportive family and/or a good group of friends that you can confide in and talk honestly with helps enormously. I am so thankful for the support of both of our families and their love for our son, which helped us so much in the difficult early days and continues to make a huge difference for us. We also have had support from local charities such as Ups & Downs Southwest and the local branch of NCT. Down Syndrome Association is also meant to be a very helpful charity that does a lot of work to support new families. I’m also so glad that we did the NCT antenatal classes, as the group of friends we made from it have been a lifeline. We’ve continued meeting almost every week for the last year and a half and have become close friends. We still message each other when our little ones aren’t sleeping or when we’re at the end of our rope wit12369174_10153161719875493_7462140212382107832_nh teething! Sometimes it helps just knowing others have gone through or are going through similar things.

It can also be helpful to journal through your experience, as writing things down can be incredibly therapeutic. It can help to try to reframe your thinking – to see yourself as a survivor, not a failure – and it can also help to try and make a list of the good things that happened or came from (or despite) your experience. However you do it, it is important to deal with any issues that may come from having a disappointing experience, as one mum pointed out that not having dealt with it fully has had an effect on the way she brings up her children.

After going through this ‘dark cloud period’ after my own birth and coming out the other side (as much as you can), I believe one of the keys that helped me the most to cope with my life not going to plan was finding perspective. I’ve learned that your perspective defines your life view; and your focus defines your perspective. In the times when everything seemed to be falling to pieces and all those carefully laid out plans were laying crumpled on the floor, I found it helped to try to take a step back and focus on what matters most. Was it having the dream pregnancy, birth and baby I always wanted? Or, though the disappointment is natural and should not be trivialised or dismissed, was the important thing having a unique, beautiful baby no matter what it took to get them there?

One time I had to make myself do this was when I was in the final stages of giving birth. Although in the rest of the pregnancy the opposite happened to what the consultant projected (amazingly, the fluid decreased and the brain developed to the point where they were no longer worried and said that we should be able to have a natural birth, that our baby wouldn’t need surgery and that we’d be able to take the baby home at the normal time – you can read more about that here), we still had to give birth at the hospital. I did manage to still have some of the labour in the birthing pool, which I loved. Most of the birth went as well as I could have hoped – apart from the staff not believing I was in labour and putting me in the maternity ward in a room with three other new mothers for the majority of my time in labour (poor women!), I found the experience on the whole empowering and positive.

In the final five minutes of the birth, though, everything went horribly wrong. I had been pushing for five minutes when the midwife stopped me to monitor the heartbeat. Instantly, her face changed. She pushed a button and ordered my husband to get me out of the pool and onto the bed immediately. Mid-contraction, my husband had to lift me out and put me onto the bed. My eyes were closed for the contraction and by the time I opened them, our hospital room was swarming with doctors, nurses and aides.

Completely disoriented, I struggled to take in the scene around me: a sea of blue-clad medical professionals rushing around me, speaking urgently to each other; my midwife telling me our baby’s heartbeat had plummeted, was in distress and needed to get out within the next 15 minutes; her ordering me to push with every ounce of strength in me without any breaks in between pushes. Through the haze I saw one doctor take out forceps and another one the tools needed to do an episiotomy – and that’s when I started to feel the panic rising. I had expressly said on my birth plan that I wanted no medical intervention unless absolutely necessary, and that I especially did not want an episiotomy. I also had said I would want to avoid using forceps because of the damage it can cause. And of course, it seemed that everything I had expressly said I wanted to avoid on my birth plan was what was happening around me.

At the time when I started feeling panic taking over, I was so grateful to have my husband there. To be honest, I didn’t know how he would be in the birth – he’s not the best with seeing blood! During this time though, he was a rock in the sea of chaos and confusion around me. He did the one thing that kept me from losing it completely – he took my hand in his hands and kept saying to me over and over, ‘it’s for the baby. Whatever they’re doing, they’re doing to keep our baby safe and healthy. Just think about the baby.’ This gave me what I needed to re-orient myself; to steel myself and focus on what was most important. With the goal of delivering my baby safe and healthy, everything else – the how, the where, the method – faded into insignificance.

After having the episiotomy and after four minutes of pushing so hard I broke blood vessels in my face, our baby was born by forceps delivery. They laid him on me to do the skin-to-skin bonding – but something was wrong. He was grey and not breathing. They quickly cut the cord (another thing on my carefully written birth plan thrown out, as I had wanted delayed cord clamping and natural delivery of the placenta) and took him over to the oxygen table. By the time I came out of the grogginess and realised what was happening, the panic was nearly to breaking point. I remember frantically asking where my baby was, why he wasn’t crying – and then came the sound that I never thought would be the most welcome, beautiful sound I had ever heard; our baby crying at the top of his lungs. IMG_2966That rush of relief is unlike anything I had ever felt before or felt since. It was that sound that made me realise that everything that it had taken to get him here was worth it.

It wasn’t until they had laid him on me again that a niggling thought came slicing through the haze of joy and elation – the thought when I first saw his upturned face that something, somehow didn’t seem quite right. The midwife then told us an hour after the birth the words that I had been subconsciously dreading – that she thought that he could have some features consistent with Down Syndrome.

I still remember that now-familiar feeling of chilling numbness, starting in the pit of my stomach and spreading its ice-cold fingers across my body, even as she confirmed my fears. I couldn’t feel anything at first but an inability to think or process what this meant. Then, once the tests came back positive, the dam broke. All the fears and doubts and misconceptions began relentlessly flooding in and I broke down into a heap. As I sagged into my husband’s arms, we wept together as the reality of the news began to sink in through our walls of disbelief.

Looking back now at the weeping, devastated pile on the hospital floor we had become, I wish we knew then what we know now. That instead of the near-death sentence we felt we had just been served, that this beautiful IMG_2508baby would bring us more life and joy than anything else we had ever experienced. That instead of being imprisoned by parenting a child with special needs, it would be the most liberating time of our lives – freeing us from the shackles of stigmas and stereotypes that society puts on anyone slightly different to the norm. And that instead of our dim misperception of imagining raising a child that would have limited intelligence, character and personality, our child would be razor sharp (too clever for his own good sometimes), be full of life and joy and would have his own very unique, cheeky personality that would know every trick in the book of getting attention and laughs from everyone he meets.

Something else I didn’t include in the article but that helped me through this dark cloud period, arguably more than anything else, was my faith. Believing that, though I didn’t know what it was, there was a reason that we had been given this little boy and had been chosen to raise him gave me a sense of purpose. Throughout it all, though we had times of ranting and railing and weeping and grieving, we still had a deep peace and joy underneath it all that made no sense, given our circumstances. And now, we are so unbelievably grateful to God for how much He’s blessed us through giving us our son and wouldn’t change him for the world.

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Often, the things in life that weren’t part of the original plan are better than the planned life could have ever been. I’ve found this with our little boy – he is not what we expected or planned for. But he has made our lives more full and rich than they ever would have been if our lives had gone as we had originally planned. Heather Avis, blogger at The Lucky Few, poster behind the famous Instagram account @macymakesmyday (which you NEED to be following if you’re not already. Highlight of my day) and mother to three adopted children (two of which have Down Syndrome) puts it perfectly when talking about her oldest daughter: ‘I know now it was not the Down syndrome, or the heart defect, or the serious lung disease that terrified me, it was the unknown and the unplanned for those things represented. I thought I knew what my life should look like in order for it to be the best it could, and this was not it…or so I foolishly believed. Then [my daughter] rammed into me, shattering my plans and in so doing, revealing just how narrow and shallow they were. I was hoping for a pond. She brought me the ocean.’

When it comes to things like having medical intervention or drugs in labour when you wanted a natural birth; having issues feeding and having to give formula or expressed milk when you wanted to breastfeed; or even feeling disappointment over your child not being the baby you had imagined or expected they would be, this can often come with an overwhelming load of guilt and self-blame. This does not make you a bad parent. You have not failed.

Again, it’s all about perspective – what is important is the fact that you carried a baby for nine months, grew them inside of you and birthed and are raising a beautiful, unique child. That is a gigantic feat and accomplishment in itself and one worth being proud of.

It is important to not dismiss the feelings and emotions that come from things not going to plan and to deal with the issues that may arise from them by talking them through and getting help if needed. But it is also important to not dwell on the disappointment more than necessary. It’s not easy. I have found that finding perspective can often be a daily task of making myself intentionally focus on the good and, by doing so, letting the negative fade into insignificance. I’ve found that when you focus on what you have achieved and the good that’s come out of it, finding that different perspective, your life view changes to one more positive and able to withstand the unexpected things that don’t go to plan. Your perspective defines your life view; and your focus defines your perspective. Finding that different perspective is what can make all the difference.

Finding PerspectiveA few highlights from 2015:

 

Celebrating life


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18 months ago yesterday our son came into the world and turned our lives upside down for good. 18 months! How has that happened? It seems like it was only a few weeks ago that we were coming home from the hospital with ours heads spinning from the newness of it all.

imageA lot has happened in the inexcusably long time since I’ve last posted on this blog. Our little man turned one in April with a party themed after his favourite toy, Mr Raffa the Giraffa (post of the party and his first birthday coming soon).

Ten days later Caleb and I then flew solo to Israel for three weeks for a family reunion for my mother’s surprise 60th birthday party and the wedding of dear friends of ours, Yosef & Kristi (a stunningly beautiful Scottish/Israeli wedding in the Judean hills overlooking Jerusalem). Will wasn’t able to come for all of it because of not being able to get time off work, although he was able to fly over for four days for the wedding. He then needed to fly back before us so flying solo with Caleb again on the way back it was!

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We then came back to the news that our rental home we were living in had been sold by our landlords while we were gone, and that we needed to find a new place to live in the next few weeks. A few weeks of frenzied house hunting followed, along with some soul searching about where we should live and put roots down for the next few years. While we’ve loved living in England the last 6 (nearly 7!) years and in Frome for the last year and a half of those, our hearts still see Jerusalem as home and we would love to move back someday. We did push on some doors to see if that could happen visa-wise but it didn’t work out, so we know that now is not the time. Someday, but for now our home is here and we’ve been loving this community-filled, creative, boho market town we’ve been living in and the people in it. We thought through some options but soon realised that this does feel like the place we’re meant to be in now, and seems to be the perfect place to begin raising our family. So, we decided to take the inheritance we had recently been given by Will’s grandmother and put it on a deposit for a house! Hard to believe we’re now home owners, still feels like we’re kids playing house. We bought a house that we’re currently in the process of redecorating and changing to suit us, and we’re loving having a place of our own that’s warm and perfect to raise a family in.

After finally deciding to stay and put some roots down, we decided to go hunting for a church closer to us as logistically going to Bath every week was proving more difficult than we thought. We soon found an amazing one in nearby Trowbridge that we’re loving being a part of. Full of life, down to earth, very real with no pretentiousness, filled with genuine people who welcomed us with open arms (especially Caleb!) and oriented towards families. Win.

Will and I also both got new jobs during this time – me as the photographer for the big Frome Independent Market that happens once a month and is an eventimage that people come from all over the country for (including celebrities – my first one I was working at I accidentally got a photo of Russell Brand doing some casual shopping!) and Will retraining in the finance department of the company he was working before at as a management consultant. His new job means more normal hours, no more 70 hour work weeks and much more time to spend with the family at home. I never see Caleb more excited now than when Will walks through the door when he gets home from work. They’ve become best buds and Caleb is definitely a daddy’s boy now. Will now has time to take Caleb to the park a few mornings a week before work and spend an hour playing with Caleb when he gets home. He also now does bath time, story timeimage and bed time and their bond has grown so much stronger because of it.

We moved into our new house in the summer, followed by a week of non-stop unpacking and decorating to make the place liveable before my family all came to visit. My sister, brother-in-law and their 8 (!!!) children all arrived a week from the day we moved in and stayed for two beautiful, hectic, fun-filled, harrowing at times and gloriously mad two weeks. The time they were here included a trip to the accident and emergency room for my three-year-old niece who had a cup of hot tea spilled over her, who then had to be rushed in an ambulance to Bristol to a special burns unit as it looked like she had over 12% of her body covered in severe burns. Thankfully by the time they got to Bristol the redness had gone down and they said only 2% of her body had been affected and that the burns weren’t as severe as originally thought. She was discharged that night and we went ahead to Devon to stay at Will’s family’s house the next day as planned.

Two days later, she came down with a high fever and went back to Bristol, where they said she had contracted Toxic Shock Syndrome (common in young children with the type of burns she had) and needed a blood plasma transfusion and to be on an antibiotic IV drip for 4 days. Needless to say, this was a terrible time for all of us and we prayed non-stop for her recovery during that time. My sister stayed with her in the hospital, which meant that my brother-in-law, Will and I had the other 8 children to look after. Will thankfully had taken a few days off work, but soon had to go back, leaving my brother-in-law and I to hold the fort with Caleb and seven of hisimage cousins, ranging from 12 years old to a few weeks younger than Caleb. My respect for my sister shot through the roof during this time, seeing how she lives every day looking after 8 children – all with big, outgoing personalities and constantly full of energy! Despite all this, we had an amazing time together. A week later when my niece had been discharged, nurses came to check on her burns and were amazed at how quickly her burns were healing – they said that they were healing twice as fast as they would have expected and she was soon back to herself.

imageWe then all went camping at a worship festival called David’s Tent and had the most incredible, restful much-needed time being together as family along with our closest friends. After another week spent with them partly in Devon and partly in our new house when we had a beautiful time being able to relax and enjoy being together, they flew out – and mimagey parents arrived the next day! They stayed for a week and we had a great time together, but it was non-stop for a long, long time.

All this to say – with moving house, new jobs, new church, meeting new friends and catching up with old ones and seeing family our lives have been a little busy! I’ve also started volunteering for our local branch of the NCT parenting charity and am writing an article for their magazine which I’ll soon post on here about how to cope when things don’t go to plan. Not to use all of that as an excuse, but writing on the blog kept getting pushed back until now. Now we’re finally feeling more settled in to our new home and new lives, I’m hoping to start updating this blog more regularly.

The main reason I wanted to write another post today was to celebrate our little man and the impact he’s had on our lives and many, many others. On the day where everywhere you look, all things to do with death is being celebrated, I thought it would be fitting to celebrate the life of our world changer. Today is also the last day of Down Syndrome Awareness Month. As Down Syndrome is the condition caused by an extra 21st chromosome and is also known as Trisomy 21, I did a challenge to post a photo or video every day for the last 21 days of October to share some of the messy, beautiful reality of what it is to live life with someone who has that extra chromosome. What I’ve learned from doing it is how many people Caleb is impacting just through being the awesome little rock star that he naturally is. I’ve realised again how much more alike than different he is, and how the differences that he does have are what make him beautifully unique and individual.

The last few months have had difficult times as well as the joy-filled ones. There have been times when all I have been able to focus on are how behind he is on his walking, standing and crawling. Times when I’ve taken him to the park or play groups and see how every other child his age is walking, running and climbing while he happily sits and stays where he is. Times when it feels when I’m walking down the street that every person we pass stares and wonders about our child, when all I can feel are the stares and the (perhaps imagined, perhaps not) judgments of people we see.

But then there are other times (most days, to be honest) that we walk down the street and everyone we pass seems to melt when they see him. Many times the faces of people who were walking down the street scowling or in their own world change when they see our boy smiling and waving at everyone he sees. Their faces light up and they smile back, troubles seemingly forgotten. There are times when he seems to make strangers’ days by smiling and waving the way he does with his IMG_5590-2entire body getting involved. Times when he seems to instinctively know who is having a bad day or is feeling down and impulsively launches himself into their arms, hugging them tightly and changing their mood and atmosphere of the room with his gorgeous smile and infectious laugh. He seems to have a gift for wholeheartedly loving people who need it most and unreservedly giving his affection to whoever he meets. And – he crawled for the first time yesterday, on his 18 month birthday! Reaching milestones seem all the sweeter when you’ve been fighting for them as long as he has. We couldn’t be more proud of him.

I have learned so much from our boy. He has made our lives over the last 18 months so much richer and fuller than they ever were before he turned our world upsideimage down. It’s funny how the unplanned for and unexpected can so often be so much better than our original plans for our lives are. I’ve found this with our boy – he is not what we expected or planned for. But he has made our lives more full and rich than they ever would have been if our lives had gone as we had originally planned.

Heather Avis, blogger at The Lucky Few and mother of three adopted children (two of which have Down Syndrome) puts it perfectly when talking about her oldest daughter: ‘I know now it was not the Down syndrome, or the heart defect, or the serious lung disease that terrified me, it was the unknown and the unplanned for those things represented. I thought I knew what my life should look like in order for it to be the best it could, and this was not it…or so I foolishly believed. Then [my daughter] rammed into me, shattering my plans and in so doing, revealing just how narrow and shallow they were. I was hoping for a pond. She brought me the ocean.’

Thank you, Caleb, for turning our lives inside out and making them so much fuller than they would have been if our lives had gone the way we originally planned them to. You are changing the world for the better just by being who you are. Never change who you are – the world needs more people like you. Thank you for bringing us the ocean.

To see the photos from the 21 day challenge and more of Caleb since I’ve decided to keep posting as much as possible, you can follow me here on Instagram.

Here are some more from the mini photo shoot I couldn’t resist dressing him up for on his 18 month birthday:
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A response to Beauty in the Unexpected

Firstly, I want to say a huge thank you to everyone for their comments and support – the response to the last post was overwhelming and we are so humbled and grateful. Thank you to all who read it and took time to share or comment on it, we were blown away by the response and are so thankful for the support you all have shown for our family and our baby boy.

There was one comment on the last post that raised some interesting points about the abortion issue that I thought was important to address. This is an issue that I am passionate about – although I got a bit too passionate writing a reply and it became so long that it became more like another blog post! So, here it is.

In this comment, they raised the point that not everyone has the resources or support needed to raise a child with disabilities, and that for many prospective parents it is a difficult decision that they should not be judged in making. I agree. Something I want to clarify from the outset is that I did not mean in any way for my views on government policy to come across as being judgmental to anyone who is faced with this difficult situation. Trust me, I understand how overwhelming this news is when you are faced with it and how frightening the prospect of the future of raising a child with special needs can be. I went through all of that. It is terrifying at first. I couldn’t comprehend how I or my husband would ever be able to cope with the responsibilities, and I doubted myself and my capabilities to raise a child with DS. It is not easy in the slightest and I would never condemn or judge anyone faced with this situation.

That being said, I passionately don’t believe abortion can ever be the answer. I believe that, although it can seem like it would solve everything and at times seem to be the only possible way out, it causes more problems, grief and heartache than any baby with disabilities ever could. A baby, whether they are disabled or not, is not a problem that can magically be solved by ‘terminating the pregnancy’. The emotional and physical consequences it carries, both for the parents (especially the mother) and for the baby, I believe, are never worth it.

There are other options out there for people who genuinely feel they don’t have the resources or support to raise a child with special needs. There are many people who would love to adopt a child with disabilities. I know a wonderful couple who have adopted three children with varying degrees of special needs, who are living happy and fulfilled lives, are in college and bring much joy to the people they come into contact with every day. I know another young couple who are looking into adopting a baby with Down Syndrome one day and would love to welcome them into their lives and home. We have also considered adopting ourselves after experiencing the joy and beauty children with DS bring in unashamedly being who they are.

Saying all that – one of the points that was raised was that we are in a privileged position to have the resources and support to be able to raise a child with Down Syndrome and not everyone is in the same position. I appreciate what they are saying, that we are privileged to have the support we do, and I am so thankful for it. However – we don’t actually have that many resources available to us as might be easy to assume. We are a young couple (both 25 years old) and have both only been in our careers for just over a year – not exactly much time to be able to save. We just make it by most of the time. Yet we are still able to make a priority of giving Caleb a life of being loved and cherished – which is more important, in my opinion, than any material things. We are extremely fortunate to have supportive families and friends, but there are many incredible support groups available for anyone who would need it and wonderful people who are available to help as part of these groups. If anyone does find themselves in a similar situation without support or resources, they can get in touch with a number of charities and groups that can provide that for them.

I know this is so hard. Please hear my heart: I have no judgment for those who have been faced with a similar decision in the past and who have decided to have an abortion. I know this most likely was the most difficult, agonizing decision they would have ever had to make. It is never easy. My intention was never to pass judgment or condemnation on anyone – past, present or future.

What I am saying is that I don’t agree with government legislation and healthcare labeling abortion as one of the only options and as a necessary course of action. I don’t agree with governments providing unlimited access to abortion for those who may have a child born with disabilities and not providing adequate support for families who have children with special needs. I don’t agree with the double standard of one policy of abortion for ‘normal’ babies and a different one for babies who may or may not have disabilities – it is never 100% sure and many times babies who are diagnosed with severe disabilities are born completely healthy and whole. I personally know couples who were told the worst and were pressured to abort who went on to have healthy, whole children. One couple whose child was diagnosed with severe brain damage among other things went on to be born 100% whole and healthy – he eventually became a child prodigy and a genius cellist and musician. Even those who are born with disabilities deserve the same rights as those born without. No baby should ever be allowed to be aborted until the day they are due. Look at the Paralympics and the inspiring, fulfilling lives those athletes lead. The government or medical professionals deciding whether it is ‘necessary’ to abort based on whether the baby measures up to our standards of perfection, I believe, is nothing less than modern eugenics. And I definitely don’t agree with medical professionals – who often are in a position of trust and influence -pressuring couples or individuals when they are at their most vulnerable to make a decision that can carry devastating lifelong consequences and regrets instead of supporting them and telling them there is another way.

I passionately believe that all life is sacred and brings joy into the world. For us, although the diagnosis brought fears, grief, heartache and despair at ever being able to be the parents our child would need (and to be completely honest still does at times), our child himself has brought us nothing but pure, unadulterated joy. Of course there are challenges and difficulties – I am not saying it is always easy or trying to sugarcoat reality. But the good by far outweighs the bad and makes everything worth it. I am so thankful for him and now honestly feel that if the world knew what it was really like to have a child classed as having a ‘disability’, disability-based abortions would become a thing of the past. I passionately hope and pray this becomes so.