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;)

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 wouldn’t wish it on anyone, just as I’m 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.

My twenties have 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 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 without being told any 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 isn’t common knowledge, but two days after the shock diagnosis, I found out that 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. 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); 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 & 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 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. 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.

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 was given a shock diagnosis.

I was told I had a diagnosis of breast cancer.

I’m 26. I have absolutely no family history of it. And yet they told me I had a diagnosis of grade III invasive ductal carcinoma which, according to the doctors, will require surgery and possibly chemotherapy. 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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Breaking out of the ‘Downs’ Box

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Today was a beautiful day. The first day of spring sunshine warm enough to walk outside without a coat on. The first day of almond and cherry blossoms blooming, signalling that the long winter days of darkness and gloom are over and that spring has finally (!!) sprung. (Sounds a bit like our lives this past year.)

I spent the day outside, putting off my to-do list and focusing on spending time with my son who, unbelievably, is only a few weeks away from celebrating his first birthday. Time has literally FLOWN. IMG_1375Everyone (including strangers on the street as soon your bump begins to show) tells you how fast time goes after having a baby. I can’t count the number of times I was told by one granny or another to enjoy every minute because they grow up quick. They don’t stay babies forever, they say, it flies by in a second and you’ll never get that time back.

I always thought they were exaggerating. Really? Spending all day, every day at home with a helpless tiny human being who has constant needs and wants? How much longer of a day (and night) could you have? How would that do anything but make the hours drag on for what feels like forever? And it’s true, there have been days when the hours stretched out endlessly – when, by the end of the day, I’d be frazzledly, constantly watching the clock, listening for the key in the lock that would mean Daddy would be home and could finally take over baby duty. In one way it has felt like forever, that Caleb’s always been in our lives and life before parenthood is only a distant foggy memory. But in another, very real way, those grannies were all too right.

It feels like we’ve blinked – and like magic, that tiny, naked, wriggly, fragile and vulnerable little human that I held against me that spring evening nearly a year ago has suddenly transformed into this mini person with his own sense of humour, his own favourite toys, foods and games he’s invented – a little boy full of character with a big laugh and an even bigger personality.

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Our son has broken out of every single box that doctors, society or even we as his parents, however unintentionally, have put on him. You can read more about how he’s defied medical and developmental expectations here. Yet beyond that, he’s broken out of every box put on him limiting his personality, intelligence and character – of what society told us we should expect of someone different like him.

When Caleb was diagnosed with Down Syndrome at 3 days old, we were blindsided. Despite knowing that a genetic condition could be a possibility after the 20 week scan where they found excess fluid on his brain and a possible problem with his heart. Despite the niggling thought that came slicing through the haze of joy and elation and unadulterated love when he was first laid on my chest to do skin-to-skin – the thought when I first saw his upturned face that something, somehow didn’t seem quite right. Despite the midwife telling 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 the 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. Yet even then, she said she wasn’t sure at all, as he didn’t have many of the symptoms usually found in babies with Down Syndrome – so we decided to try to push it from our minds until the tests came back. We were determined not to let anything steal the joy of this beautiful little person we had created together, and those first few days were filled with wonder at the beauty God had created through us. Our hearts broke as we had to watch Caleb go through one test after another and then, after a few days, go into the intensive care unit under the lights for jaundice.

Just before he had to go in to NICU, the doctors came in to tell us the tests had come back for Down Syndrome. They were positive. I still remember the icy numbness, the inability to think or process what this meant – we were so sure he had been cleared of everything they had found in the scan that we were convinced the tests would come back negative. We thought there’s no way that this could happen to us; with our first child when we were both 25 years old, what were the odds that our baby would be the 1 in every 1000 babies born in the UK with Down Syndrome? Despite everything, until that moment, we had still doggedly refused to believe it could be true. We were well and truly blindsided.

Then, suddenly, the dam broke. All the fears and doubts and misconceptions began relentlessly flooding in and I broke down into a heap as deep sobs began wracking my body. As I sagged into Will’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 baby 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 and that would be so different to the one we had dreamed of for 9 months, 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.

There were times at the beginning that I wondered if we should have done the screenings during the pregnancy, if only to prepare and steel ourselves for what was ahead. The first few months after finding out I believe are best described by my friend Nicole who writes the ‘The Baby Blogs’ , who has been through it herself. She aptly calls the time of initial shock ‘the dark cloud period’ – where everything is filtered through this hazy lens of grief and disbelief. During this time of processing and coming to terms with the shock twist that life had just handed us, I wondered many times if it would have been better to get through this ‘dark cloud period’ before Caleb had been born so that I could have spent every minute just focused on him.

But now I am so glad we waited. He was the one who made it so much easier to take in. Every time we would look at our 10291239_10203787483708710_5626427546989223500_nperfect baby, hear his cooing newborn noises and laugh at his thousands of sleepy newborn expressions, we would forget for a little while and just be family. Whenever we were with him, his diagnosis faded into the distance and we’d be swept up into a deep gratitude for being given this perfect angel baby. Although we were going through a (what I believe is very natural and necessary) grieving period to mourn the child we had imagined having for so long, him being physically with us as his uber cute baby self somehow made it that much easier. We were head over heels in love with him from the first and that carried us through until the dark clouds finally, gradually lifted.

Don’t get me wrong – even though we felt after a time that the clouds did lift, they can suddenly sweep back into our lives with a vengeance for a time. There are days when it all feels too real again and the fears and doubts start whispering (or thundering) their way in again. It is an intentional, daily decision to stay rooted in today, to not think about tomorrow and to trust that there is a plan in all of this. But those are the bad days.

Most of the time, now I can honestly say that my life with having a child with Down Syndrome is better than I ever imagined it could be before we had him. Living with this little firecracker makes life so much more fun. I laugh more now than I ever have.IMG_1327 Caleb’s favourite thing to do is make people laugh. His favourite game for the last few months has been what we have come to call Pokerface: suddenly pulling a frown face (think upside-down smile) and not breaking it until the person facing him (many times random strangers on the street who say hello and try to make him laugh) does a frown back, facing off until someone breaks. If you manage to do a face that makes him break his pokerface first and smile, he’ll usually go straight back into his pokerface and keep playing until he wins. But he usually wins with a face that’s too cute not to laugh at. Every time he does win he then cracks up as if he knows he’s the funniest kid ever. Which – I know I’m biased – but I think he probably is.

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He’s smart: he’s figured out the one noise that is guaranteed immediate attention is gasping as if he’s choking, sometimes even finished off with a few fake coughs. Then as soon as he gets the reaction he’s looking for, he cracks up. He now does this ALL THE TIME. Constantly. In the shops. While he’s getting changed. In between every bite of food, making me panic IMG_1192thinking he’s going to inhale the food into his windpipe – which he seems to find even funnier. We also found out a couple weeks ago that he needs glasses as he’s long-sighted – I didn’t even know they did glasses for babies that small, but he rocks them. He figured out how to take them off, pull them apart and take apart the curly ear pieces within the first few hours. It’s now his favourite toy, and every time we look away he’s at it again. See what I mean about too clever for his own good? This boy.

His favourite things in the world are people, music and dancing. As long as he’s getting attention and cuddles, he’s happy. He already hates missing out on anything – if there are people over, he wants to be right in the middle of where the party’s happening. He loves IMG_1321music – if he’s ever fussy or whingey, we just put some baby music on and he’s loving life again. If there are actions or bouncing along to it, all the better. His favourite thing ever, though, has got to be dancing. Sometimes the only way to stop him fussing in his high chair is to break out into a little dance in the kitchen. He LOVES it. His favourite thing to do (and mine too at the moment) is having a family dance party in our living room – when Will gets home from work we put on some old Paul Simon or Doris Day vinyls on the record player and the three of us dance away. He can’t get enough of it. Neither can we.

This boy, extra chromosome and all, is our absolute dream baby. He is nothing like we were expecting our child to be beforeIMG_1323 we found out about his diagnosis. Yet he is nothing like we were expecting him to be after finding out about his diagnosis. He has broken every single stereotype, stigma and misconception we didn’t even realise we had about people with Down Syndrome before having him. He is 100% perfect in our eyes and we couldn’t be prouder of him.

Today is World Down Syndrome Day. It’s a day for celebrating those rocking the extra chromosome (as the amazing blogger Heather from The Lucky Few puts it). Those who bring a beautiful diversity to a world obsessed with fitting into an impossible image of perfection. Those who are unafraid to be who they are, so different to the mould that the world tells us we have to try to fit into at all costs. And today we have celebrated our son. This boy has broken out of the ‘Downs’ box again and again and has made us appreciate those beautifully different to us in an entirely new and real way. Thank you, Caleb, for opening our eyes to see the value of what those with an extra chromosome bring to our world. We are different people to who we were before we had you. And we are better people for it.

The Modern Myth of Parenthood

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2014 has been a year of polar extremes for us – to put it lightly. It’s been a year of unbelievable highs and lows that would rival any world-class roller coaster. We have experienced the most difficult and challenging, yet by far the most fulfilling and joy-filled times we have ever known.

It’s now been over a year from the moment we first knew we weren’t having the dream pregnancy and first child-experience we thought we would. Just before Christmas 2013, our world was turned upside down in an instant. From the moment we were first told in our 20-week scan that there was a problem with our baby, to being told after the birth that Caleb was diagnosed with Down Syndrome, until now, this past year has been a journey into parenthood far different to how we thought it would look. Yet it has surpassed all our expectations to be the most thrilling, life-changing, challenging and fulfilling experience we have ever had. I have discovered things about parenthood that I wasn’t expecting, that go against everything that the world has told or implied to me about parenting. And I have learned much that has caused me to question how we as a society in the west view raising children. I have learned this:

1. Parenthood is a fierce joy.

IMG_0277It is a tidal wave of love that is overwhelming in the power of its strength. It is an instinct of being willing to go to any lengths to protect your child from harm, a warrior instinct that is almost frightening in its ferocity – even before they are born. It is a joy that makes your heart feel full to bursting every time you hold them and look into their smiling, fully trusting eyes that reflect a small piece of who you are. It is everything we were made for and, in my experience, one of the best, most fulfilling things you can ever do with your life.

Yet how is it that on a daily basis, we are told by our culture and society that focusing on raising a child (any child, let alone one with special needs) or children is a waste of your life? That life is over as soon as a child comes on the scene, that it’s impossible to do anything that you’d like to do after having a child so you’d better do everything you possibly can before that terrifying day arrives? Forget traveling. Forget living your dreams. Forget having a life of your own, because as soon as that baby comes you cease to exist as a person.

This is what our culture would have us believe. And because of this people are waiting later and later to have children. There has been a huge increase in the last few decades in the use of IVF because of infertility, many times because couples are in their mid to late thirties before they finally feel ready to ‘settle down’ and start a family – only to find they are now heartbreakingly unable to do so. I personally know people who have done this, who have told me they now wish they had started trying for children earlier as they no longer can have any of their own. Yet we are being told constantly by the media, our peers and our culture that life is over when you have children – so we need to put our other desires, passions and dreams first whatever we do.

Then, there is the other extreme the world tells us – that you can have a baby if you want to, but if you do, nothing should change. A baby is an accessory, an additional token of a successful life that can and should be handed over to someone else to raise when they become inconvenient or get in the way of our career, our wants, our ambitions. These children many times become orphans in their own homes, closer to the nanny that raises them than to their own parents who they hardly ever see. Of course there are many times when this is unavoidable, when in order to provide for their family both parents have to work. Yet the same world and society we live in that has made this so often a necessity then drives guilt and condemnation into us for not being there for our children. It’s a catch-22 that creates so much frustration and fear that it can often put people off having children altogether, or at least until much later on in life when they feel they can afford it.

These are some of the lies and fears that are subtly and sometimes not-so-subtly driven into us on a daily basis. Consciously or subconsciously, in the western world almost all of us have bought into it to a degree. I certainly did. Until I had a baby.

2. Parenthood and pursuing your dreams are not mutually exclusive. 

The truth couldn’t be further from what I thought. I thought that to avoid this second scenario, I could never pursue my dreams of having a successful career as a photojournalist and a recording artist as well as becoming a young mother at 25. I thought traveling would come to an end, I’d have to give up my passions and that I would essentially lose my identity as a person in the vast vacuum of exhaustion, weariness and mundane jobs known as motherhood.

But the truth is, life is what you make it to be after having a baby. We decided to try for a baby despite all this and since then, the reality of the joy of it has far outweighed all the other expectations our culture puts on us. Since having a baby, my life dreams and passions have been becoming reality in ways I never thought possible.

In the last year and a bit since finding out we were expecting, I’ve had the opportunity to record and launch a debut album of self-written songs (with a full band at 7 months pregnant no less! Madness I know. You should see a hugely pregnant woman playing the accordion up to her chin over her bump. It looked ridiculous. I loved it. You can find it here) that made it to number 14 on the iTunes singer/songwriter charts. There is now a second album and another EP in the pipeline, largely made up of songs written as a direct result of the journey we’ve been on this last year.

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7 months pregnant at the debut album launch of All Shall Be Well, March 1st 2014

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Baby-wearing while doing a professional shoot for a website, September 2014

We’ve rebranded and reinvented our husband-and-wife wedding photography and photojournalism business, now called East West Photographers (new website to be launched very soon – watch this space!). And I’ve been inspired to start writing again for the first time in years (hence this blog).

We’ve been given opportunities to travel around the world seeing family and friends. Caleb has been to six countries in his first six months of life and has loved every minute of it. Our fears of not being able to afford having a baby so young were for nothing – almost everything we need has either been given to us or we’ve been able to find them secondhand, nearly brand new for a fraction of its original price. We’ve realised what advertising companies and marketing ploys tell you is essential and what you actually need are two very different things. Having a baby has ended up costing us far less than we thought it ever would. Every preconceived notion I had in my head of having a family from the world’s perspective has been blown to pieces and is nothing like what I had imagined (feared?) it to be.

I’m not saying life doesn’t change after having a baby. Trust me, it does. It is harder to do certain things and there are things that have to be given up for the sake of your family. There are days where it feels like too much and that you’re not enough. Days when it’s harder to choose joy than others. And it is hard work maintaining a healthy balance and being committed to your family while pursuing your dreams. But, it is possible. And the rewards are more than worth it.

3. Parenthood is all about perspective.

In our (very limited) journey of parenthood so far and becoming parents to a beautiful boy with Down’s Syndrome, I’ve been learning this: It’s all about perspective. And what you focus on defines your perspective. It’s a bit like a photograph taken with a large aperture and a shallow depth of field. In photos like these, one element of the image is in focus while everything else blurs into the background. Your eyes are drawn to the one subject that the camera is focused on – everything else is insignificant. Change which part of the image the camera is focused on, and the whole picture changes. In this way, two photos can be taken of the same exact subject but, depending on where the focus is, they can tell two entirely different stories.

Finding Perspective

This is what I’ve found parenthood (or anything in life, really) to be like. You can focus on the issues, on the negative, on the hard parts of it. Yet if you do, this will consume you until it’s all you see. All the beautiful parts of the image fade into insignificance because you’re viewing life through this lens of negativity, of what the world tells you to expect. The world may tell you to expect to be exhausted, overwhelmed and financially frustrated as a parent. And if you go into it expecting the worst, you most likely will experience it to be like this. Yet if we take the time to intentionally realign our focus on the elements that make the rest of the image beautiful and whole, everything changes. Suddenly the hard things, the negative things about it, don’t seem as significant. You start seeing life through a different lens that still acknowledges that, yes, life can be hard – we live in a broken world full of broken people and this will always cause hardships. Anything in life that is worth having is hard at times. But there is more. There is a beauty and a wonder to life, even in the hard times, that is often missed because of our culture’s cynical view of hardship.

There are always going to be reasons why not to have children yet. Let me debunk some myths from personal experience here: There is never a ‘right time’ where everything lines up perfectly in place to start a family – circumstancially, physically, financially and emotionally. You can never be fully ready before being thrown into the deep end of the pool of parenthood (and if you think you are – you’re usually not.). And parenthood alongside living out other passions and dreams is, in fact, possible.

What I’ve learned is, though we have already been given life and life to the full, it is up to us to take hold of the life we’ve been given and live that life to the full. It doesn’t just happen. It is often a gigantic leap of faith. It is often a risk. But it is possible. And it is one well worth taking.