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.

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Beauty in the Unexpected

Caleb

This is Caleb. Our son.

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He is the happiest, easiest, most contented baby you can imagine. He smiles with his eyes and his entire body, often looking as if he’s about to burst with the sheer joy of being alive. He loves hearing the sound of his own voice talking to himself and anyone who will listen. He has the brightest, bluest eyes I’ve ever seen and he melts everyone he meets, including complete strangers on the street.

He has also been diagnosed with Down Syndrome.

He is not what we expected. But he has already brought us more joy than we could have imagined. He is beautiful, healthy and strong. To us, he is perfect.

He is a fighter. He has proved the medical professionals wrong time and time again. He has broken off every expectation put on him and out of every box health professionals try to make him fit into. He has proven wrong every preconception, mold and stereotype that has been put on him and overcome definition time after time.

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They said he would most likely have health issues and that he would develop much later than his peers. He has been thriving and developing in some ways much earlier than what is considered ‘normal’. He first smiled at 5 and a half weeks, slept through the night at 8 weeks and rolled over at 12 weeks. The average age these developmental milestones are hit are 6 weeks for smiling, anywhere from 4 months to 3 years (!) for sleeping through the night and 5 months for rolling over for most babies.

They said he would have heart problems, as many babies with Down Syndrome are born with heart defects and require open heart surgery in their first year of life. Caleb also had what looked like a problem with his heart in one of his scans during the pregnancy, which made them sure that he would have heart issues. Yet Caleb now has a healthy, whole heart. They couldn’t quite believe this, performing test after test to try to prove their prognosis right. Time and again they tried to hide their looks of bafflement when every test came back saying that his heart was 100% whole.

They said he had problems with his digestive system and bowels and would most likely need major surgery before he would be able to poo normally. After they had spent ten minutes telling us all the problems he would have, saying we would need to rush to a hospital in Bristol for him to undergo emergency major surgery, they opened his diaper and were promptly proven wrong. (That’s our boy!)

They said he would get ill easily and very often. For the first 5 and a half months of his life he didn’t catch so much as a cold.

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One of Caleb’s favourite things to do is pose like Superman.

They said almost all babies born with Down Syndrome have very weak muscle tone and are floppy (known as hypotonia) for the majority of the time they are babies. From birth, every midwife or health care visitor who has seen him has commented on how excellent his muscle tone is and what a strong boy he is, even by typical standards. He has been a wriggler (and a future footballer, judging from the strength of his kicks) from the womb onwards. He has always been determined and known what he wants and many times has been strong enough to get it.

They said that often babies with Down Syndrome have trouble breastfeeding. This has been a battle for us, as for the first part of his life he did refuse to latch on and I would express every feed, every day and night in order for him to have breast milk. For 16 weeks I would try to get him to latch on almost every day, and when he wouldn’t be able to I would attach myself to a pump every 3 hours to express enough milk for him to feed from a bottle. It was hard. After four months, I had reached the end of my rope and had given up completely. We made the decision to wean him off breast milk and switch over to just feeding formula. Just before making the switch, I thought I might as well make one more last ditch attempt at breastfeeding, even though I was told and was sure that after four months of bottle feeding there was no human way possible he would latch on.

HE DID.

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On our recent trip visiting his grandparents, aunt, uncle and 8 cousins in Israel – this was taken on the coast of the Sea of Galilee.

He latched on straight away and fed for over an hour. Something suddenly clicked and he has now been breastfeeding and latching on with no problems for two months, gaining weight and being contented and happy after every feed. It’s an actual miracle and a direct answer to a prayer we prayed every day for four months.

We have been praying for him constantly since being told at our 20 week scan that there was a problem. They said he had excess fluid on his brain and what looked like a problem with his heart. We were told he could have long term brain damage and heart issues and that we should think about aborting our baby.

This was most likely the hardest time we had ever been through in our lives. Yet through it all, unbelievably, there was a peace. A peace that made no sense, a peace that went against everything we were being told. The support and prayers we have had from our families, church family and friends from that time until now was and has been incredible. We are so, so thankful for it. Two weeks after the initial scan just before Christmas last year, after two weeks of having many people praying hard every day, we went back to have a scan by a heart specialist. She told us his heart was now 100% whole with no defects whatsoever. Miracle.

We continued going to the fetal monitor unit in Bristol for scans throughout the rest of the pregnancy to monitor the amount of fluid on his brain. The consultant’s projection was that the amount of fluid, which was classed as severe ventriculomegaly and hydrocephalus, would continue to grow and take the space needed for his brain to develop, potentially causing severe long-term brain development problems. He said our baby would most likely need to be rushed off for major surgery as soon as he was born. He spoke to us at length about terminating the pregnancy, even after we said that would not be an option for us and we would love our child no matter the outcome. He kept pressing the issue, saying that although the legal limit of abortion in the UK is 24 weeks, if we changed our minds after this point it would be considered a ‘grey area’ and implied that something could be ‘worked out’. We were offered screenings for genetic and chromosomal conditions, which we declined since we knew it would make no difference to us of whether we would keep the baby. We later discovered that if there is found to be a significant risk in pregnancy that a baby would be born with Down Syndrome or a variety of other genetic or chromosomal conditions classed as disabilities, it is legal in the UK (and many other countries) to abort until the day the baby is due. Approximately 92% of babies diagnosed with Down Syndrome in utero are aborted (many times with diagnoses that turn out to be false). On the UK national healthcare website, they list several reasons why, in their medical opinion, ‘abortion may be necessary‘. One of these reasons they list is if there is a ‘significant risk’ that the baby would be born with what they would consider a disability. Apparently, according to the government (which is a reflection of the society we live in, not just in the UK but all over the western world), babies with Down Syndrome or other conditions labeled as disabilities are seen as less than human.

IMG_4032All this, however, made no difference to us – our minds were made up. We would keep and love the baby we were given, even if they were different to what we had been expecting. We would pray for their healing but we would love them for who they are, no matter the outcome.

We continued to pray and every time we went to the specialists in Bristol, the amount of fluid either had become smaller or the brain had grown and developed to the point until, at the end of the pregnancy, the consultant said he simply wasn’t worried about it anymore and that it should no longer affect our baby’s development. He said that our baby would no longer need surgery straight away, that I could be classed a low risk pregnancy again and that we would be able to take our baby home as soon as he was born. He said we were a very interesting case and to stay in touch as it could change the way he advises couples in the future. Miracle!

Caleb (Calev in Hebrew) – a name we had decided was our favourite and that we felt God had given us at the beginning of the pregnancy before we knew any of what was going to happen with his heart – means whole hearted. It also means brave, courageous and strong warrior after Caleb the giant slayer in the Bible. He has already been all of these things. Rafael, his middle name, in Hebrew means God has healed or God is healer.

We believe that the healing process began in the womb, beginning with the heart. We believe it is continuing every day and will continue for the rest of his life.

God has been good to us.

These last few months have been a journey for us. We needed time and space. Time to process, to ask the why and the how. Why we weren’t given the child we had been expecting.  How his life will look and how our lives will look from now on. Space to be a family and heal together without having to answer painful questions. And time for healing to come through the wonder and beauty of creating a tiny human being, one so like us yet so entirely unique and individual. Time to get to know this beautiful, perfect little person with a big personality that God had entrusted us with, different to how we imagined our child would be yet a blessing unlike any we have known. Time for others to get to know him for who he is, a gorgeous, happy boy full of life and wonder, instead of seeing him through the lens of preconceptions and stigmas our society has placed on people different to us. Time to rest and become rooted in a place of deep peace. And time to grow in thankfulness for this gift from God that has brought a richness and joy to our lives we couldn’t have imagined.

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Caleb, first and foremost, is our son. His diagnosis is a side point, not who he is. His identity is and always will be not as a ‘Down’s child’ but as a child of God. We have come through this storm knowing all shall be well and the closeness of God as Abba Father in an entirely new way. And we are confident that our son will grow to change the world for a better place. He has already changed ours.