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.

 

 

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41 thoughts on “Beauty in the Unexpected

  1. Esther, it has been a blessing to watch you as a mother! You always seem to have such joy and a beaming smile! What a testimony you and your family are to hope and not despair!!! Thank you for sharing your journey with us! Much love x Becky x

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  2. Esther,
    Thank you so much for sharing your story! It’s such a testament to how good God is, and that He can work out all things for the good of those who love Him.

    May Caleb grow knowing how his heavenly Father has blessed him, and may he learnt to trust His provision and goodness all his life.

    Love to you all.

    James

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  3. thanks so much for sharing your journey so beautifully written.You are such a beautiful family.How so exciting about the breast feeding He definitely has an amazing smile and know he will continue to bring much joy to you both
    Jenny rudge

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  4. My dear Esther, thank you so much for sharing your heart. You guys are such a beautiful family! Caleb is beautiful and so sweet.
    Reading this has been an encouragement and I praise God for all that he has done and yet I do! We serve a faithful, loving and powerful father and creator.
    Love you so much and praying for you all daily.
    Neshikot,
    Liah

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  5. Esther! Loved your post! It gave me the goose bumps! I’m so proud of you! The three of you are so full of love and make such a beautiful family!
    We three, love you three so much!
    Please come visit us again! And we hope to visit you guys again too! 🙂
    Much love!
    Deanna

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  6. Wow, what a journey you’ve been on. I look forward to meeting him and being taken in by his smile and beautiful eyes! And what a prophetic name for what he’s already been through and what is still to come. Truly amazing! God bless you all!

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  7. Powerful! Poignant! Precious! May all families who have been blessed with a gift like yours be encouraged by your story to see their child as a very special gift from God.

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  8. We also have a gorgeous son named Caleb, who is one of a twin and he has also been diagnosed down syndrome and our journey has been similar in so many ways and yet so very different. Our guys turn 6 at the end if this month. We have been believing for Caleb’s miracle since he was born (we only found out at birth) and it is so very encouraging to find another family trusting God for his Suddenly for their child.

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    • Hi Siobhan, thanks so much for writing – what are the odds that our stories would be so similar, even down to the name! It is possible, there are many stories of it happening – no matter what happens though they are so beautiful and perfect as they are. We have been very blessed:) wish you and your family and your Caleb all the best in the future!

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  9. Hi! I’m Anne, and a friend of Maj Jensby, who sent me a link to your blog. What a beautiful testimony, and I am so happy that Caleb was given to you guys 🙂 I don’t know, if you have heard about L’Arche and the founder Jean Vanier. I worked in one of their communities and I will recommend you to check out his writings. He has really transformed my view on people with dissabilties. Also Henri Nouwen, who lived in a L’Arche community has written some quite interesting things about dissabilties from God’s perspective. At last, you should totally look up the blog noahsdad.com – he’s a christian father to a kid with Down’s, and his blog is SO good. Anyways. I really wish you all the best and God’s grace and power over your family!

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    • Hi Anne,

      Thank you for writing! I’ve heard of L’Arche in passing but didn’t realise it was for people with disabilities. I’ll look that up – I’ve read some of Henri Nouwen’s writings and they are amazing. I’ll look up those ones that he’s written as well. I have read a lot on Noah’s Dad’s blog – very inspiring! I’ve loved reading it. Thanks so much for your recommendations, all the best!

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  10. Esther, this is so beautiful just like your son. I like your style, his identity is just as you say and what a blessed little boy he is, its a real testimony of God’s love and Caleb has got wonderful parents.

    Love to all 3 of you, Emma xxx

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  11. Your family is a testimony to the goodness and faithfulness of God
    .we are sooo proud of you and loved meeting Caleb…we will live watching all of you grow and follow the great plan God has for each one of us

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  12. You guys are amazing. What hero’s you are but mostly Caleb ;). I honestly couldn’t imagine a couple that ooze peace and patience and love and gentleness more than you two and its amazing that those are the exact qualities that you 3 would need in order to transition in to this journey of parenthood and learning what your individual journey as a family looks like. I LOVE that you don’t give off any sense of disappointment in having Caleb but just sheer joy and delight …so refreshing. What a gift your little family is. 🙂 what champions of faith you are to believe in God’s goodness over Caleb and to see him come through time and time again.

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  13. Esther, you won’t know me but I wanted to say how moved I was by reading your blog. We know a delightful girl called Lisa who we first met when she was about 14 and who has Down. Like Caleb she was born into a loving Christian family, and with an older sister, and was always the one to greet you warmly when you visited and make you feel at home. A real star! She’s now in her 30s, married with a little girl of her own. The God of miracles!

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    • Wow, thank you for sharing this Fran, so encouraging to hear! It’s helped us so much seeing other children with DS and what fulfilled, happy lives they lead. Thank you for sending this, we appreciate it. All the best:)

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  14. What a lovely blog. I was sent this link by a friend and it is such a heart warming read.

    Our baby boy finley was diagnosed with Downs Syndrome an hour after he was born. It hadn’t been picked up on during pregnancy.

    He is now 14 weeks old and the most perfect little boy. We love him more each day and like Caleb, he keeps surprising us and the ‘proffessionals’.

    Caleb is a beautiful boy and I wish you the very best for the future
    X

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    • Hi Jemma, thank you for writing – congratulations on the birth of your baby boy! It is hard at first – but I honestly think now if the world knew what joy these babies bring, we would be counted among the luckiest mothers in the world. Wish you and your little boy all the best, please keep in touch – would love to hear how Finley gets on in the future. All the best x

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  15. Dear Esther, What lovely photos of a very happy looking Caleb! We have a baby daughter who is now 6 months, who isn’t hitting her milestones and for some will never be able to. However, God is the same faithful God who has proved his faithfulness time and time again – isn’t He just so good! So whatever lies before Caleb (and I hope he surpasses those milestones!) we know like the old hymnwriter the following….. “When peace like a river, attends all my way, when sorrows like sea billows roll, whatever my lot you have taught me to say “it IS WELL with my soul!”

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    • Hi Jay, thank you for writing! I love that hymn. Congratulations on your baby daughter, Caleb is also almost 6 months. The milestones are difficult – he’s done amazingly on some and isn’t quite there yet with others. It can be hard to find the balance between letting them be who they are, not putting pressure on them or ourselves and being relaxed about when or if they happen, but also wanting to challenge them to stretch their capabilities. We are learning through it all and thanking God for the grace he gives every day! Wishing you and your family all the best with your future:)

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  16. Will & Esther,
    Your story is so beautiful and full of God’s love and goodness. It was so awesome being able to meet your precious little bundle and hold him in my arms! You are both amazing parents and I know God hand picked the two of you for such a special blessing! If it’s ok with you, I’m going to forward your blog to the director of “Human Life Services” here in York. It’s a pro-life agency that I’m sure will be inspired by your story. I’m so proud of you both and the stand you are making that every child is a treasure and a gift from God! Love you! ❤

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  17. Hello, I saw your post via a friend’s Facebook feed. I am very happy for you and your family and completely respect your firm choice and beliefs.

    However, I hope you realise you are speaking from the privileged position of having the resources and support to be able to raise a disabled child. There is an undercurrent of judgement in your post against anyone who would choose to abort a baby if they were to find out it were disabled. Whilst I understand that your position and beliefs would for you make the decision a relatively easy one (although I in no way mean to imply that your experience has been an easy one) this is not the case for a mother who might face the prospect of raising a disabled baby with limited means, limited capability and limited support. Your story is wonderful, and your child is incredibly lucky to have parents like you, but perhaps reserve your judgement and do not attempt to apply your situation to everyone’s.

    If you care about the prevalence or availability of abortion then perhaps focus your ire at government policy and legislation which regards the limited provision of welfare for new and prospective parents of disabled children or the difficulty of getting support for care or disability benefit. Maybe consider adopting or advocating for the adoption of disabled children that were born into families which unfortunately did not have the capability to raise them that you do.

    I would not for one second begrudge your family the right to tell your story proudly. However, criticism of abortion legislation and by implication, those who choose to abort, is narrow minded considering your relatively privileged position and failure to acknowledge the social context which means that for some, currently, the choice is not so clear cut.

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    • Hi JN,

      Thank you for reading this post and for raising this issue. I hope you will believe me when I say that it was never my intention to come across as judgmental or condemning in any way. I had written out a long reply to this as I appreciate the points you raise and think it’s a very important issue to address, one that I am passionate about – however I got a bit too passionate and it became so long that it became more like another blog post! So, I am planning on writing another blog post where I can address all of your points in more detail. Thank you for writing, I appreciate it and will be replying via another blog post very shortly.

      Take care, thanks again for posting. All the best. Esther

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      • Hi again,

        Thanks for your polite reply! As I said, you have a wonderful family and a wonderful story to tell. I apologise for misreading the attitude with which you told it, but I agree that the points I raised are important ones and my hope is that future dialogue on abortion will focus on how best to support those who find themselves in difficult circumstances in a non judgmental way. I will look out for future blog posts!

        Liked by 1 person

      • Hi JN, not to worry! I’m glad those points were raised – it needs to be something that is openly talked about in non-confrontional, non-judgmental ways much more often. I’ve now written another blog post as a response – I plan on updating it with some links soon but you can read it as it is here: https://findingperspective.net/2014/10/24/the-abortion-issue/

        Hope that explains my views on this topic more clearly. Thanks again or reading this post and replying, all the best!

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  18. Wow. Well written. Me and my wife have a 6 months old little one called Imogen. We love her loads.
    We always agreed to not have the DS tests they offer during her pregnancy as it didn’t matter to us.
    I hope to emulate your attitude if any of my future children happen to have a disability. I wish all children were thought of first as children of God, not having their opportunity at life taken away by a disability.
    If in the future we can predict personality it begs the question to we begin aborting babies who will be predicted to be “bad” people?!

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  19. Thank you for sharing. This is quite encouraging. We’ve just received a horrible diagnosis on our baby – they will only live for a few hours after birth. Praying for a miracle and encouraged by yours, but will love our baby no matter what.

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    • Oh Sarah – I am so, so sorry to hear that. That is the hardest news you could ever hear, I can’t imagine what it would feel like to be given a diagnosis like that. But a miracle can happen for sure – we’ll be praying for the life of your little one, we’ve seen that with God nothing is impossible. Your baby will be a treasure no matter what happens. Praying for grace for you and your family for this time, wish you both all the very best X

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  20. Caleb will continue to astound the medical professionals every single day of his life! I am late to this blog (thanks to my own babies who do NOT sleep through the night!) but I will be following Caleb’s miraculous life journey. I know he will continue to be a sign and a wonder!

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  26. I was given the link to your blog by my brother… My husband and I have a 20 week old son, Nathaniel. He was diagnosed with downs syndrome at birth. We had our moments of grieving when we were told, but mainly an overwhelming sense of peace, which I know was God. Thank you for writing this, it is such an encouragement. Nathaniel has also surprised doctors with how well he is doing, and our prayer is that he continues to astound and amaze. His name means ‘gift from God’, and he truly is.

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    • Hi Gemma, good to hear from you! I’m glad you found the blog. Congratulations on your baby boy, he is a gift. So glad you found this encouraging. Wishing you and your family all the best on this new adventure you find yourself on💙💛

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