Loving the Unlovely – How God Taught Me to Love My Abnormal Baby
Loving The Unlovely
How God Taught Me to Love My Abnormal Baby
By Hannah Seow
I praise you because I am fearfully and wonderfully made.”
Psalms 139:13-14a (NIV)
My eyes were filled with tears as I clutched the ultrasound photo of my baby and read this familiar verse. How could an abnormal child be “fearfully and wonderfully made”? How could our Lord take delight in this supposed creation of His?!
I’m Expecting!
I was overjoyed when I found out that I was expecting a third child in June 2019. My hubby and I prepared our two girls for the addition of another sibling to the family.
We found out that we were going to have a boy at my detailed fetal scan at 20 weeks. We named him Caleb Huang Zhu An (黄主安), our strong and courageous fighter, whom we prayed for the Lord’s peace to be upon. However, my gynaecologist noticed some anomalies and referred us to a specialist for a second opinion.
I walked into the ultrasound room that day not knowing that it would be the start of an immensely heartbreaking journey.
“I am so sorry, Mummy. I am looking at some abnormalities at the brain. There is a cleft lip and a cleft palate. Looking at the heart—I am seeing a total of three major cardiac abnormalities. There are usually two cords, but I can see only one. There are also abnormalities at the abdomen. Baby’s head shape is not normal. I recommend an amniocentesis test to find out whether the baby has any underlying condition. We need to know more to help you and baby better.”
I stared at the ultrasound screen. A flood of helplessness, disbelief and overwhelming sadness engulfed me. This cannot be happening.
My hubby and I decided to go for the test. The doctor drew some amniotic fluid to test whether Caleb has any chromosomal abnormalities. The results came back a week later. Caleb was diagnosed with Trisomy 18 or Edward’s Syndrome, which is functionally incompatible with life. Very few of such babies are born alive. Even fewer survive past a month, and only a handful survive beyond a year. These babies have very poor development and growth. We were told that should Caleb survive, he may not be able to progress developmentally beyond that of a one year old.
My world plunged into darkness. I cried for days on end. The nights were filled with sorrow as I struggled to accept how God could allow this to happen. Then the Lord spoke very clearly one evening.
I sobbed. God spoke deep to my spirit, and assured me that He was in full control, even over these painful circumstances. I felt His peace as I decided to keep Caleb, and to have him for as long as the Lord gives.
But there was something I continued to struggle with. I could not bear to look at his ultrasound pictures. As much as I loved him, seeds of rejection subconsciously took root inside my heart. I could not love Caleb wholeheartedly. I was unable to accept Caleb for who he is. How do I love someone who is abnormal? How can I say to Caleb that “you are beautiful” when deep inside I cringe at the physical abnormalities?
In the subsequent months of my pregnancy, I stopped talking to Caleb. I spoke about him as if he was apart from me, not realising that he was growing, kicking and moving inside of me in every moment.
Weeks before I delivered Caleb, God reminded me about His Love. “Hannah, would I look at your imperfections and ugliness and stop loving you?” I broke down as I told Caleb how sorry I was for not loving him with my whole heart. I started talking to Caleb every day. I told him how much God loves him, how much I love him and how much his family loves him.
Welcoming Caleb
Caleb arrived into this world on 19 February 2020 with but a little whimper. All was quiet as the doctors whisked him away to the Neo-Natal Intensive Care Unit (NICU). He was born at 38 weeks, weighing a good 1.99 kg.
Caleb was born with all the abnormalities that were detected in utero. When I came face to face with him, my heart broke. I saw how hard Caleb was trying to breathe, with tubes on his face and body. At the same time, I felt an immense urge to lavish love on this little baby boy. I just wanted to carry him up and hug him.
But still I couldn’t help asking God:
“God, why?! You didn’t heal Caleb. I’m happy that he is alive, but oh that pain in my heart. How am I to live from now onwards?”
More Bad News
When Caleb was one week old, I received a piece of news that shook my world even further. We knew that Caleb had heart abnormalities, namely VSD and PDA, and were looking forward to surgery when Caleb was bigger to give him a better chance at life. But the cardiologists discovered something new in their scans that was a complete game changer.
“Caleb’s Mummy, during our scan yesterday, we found out that Caleb has an extremely rare cardiac condition called coronary artery fistula. Usually the patient has one fistula. But not for Caleb. He has multiple fistulas, and they are complexly woven around. This is a condition that we cannot treat. Surgery cannot fix it. I am sorry for all of these. Would you like to take Caleb home?”
I could hardly stand as I digested this new development. I told Caleb I would be back and walked out of the NICU weeping. My hubby and I were going to lose Caleb. The doctor could not tell us how long Caleb would survive. It could be days, it could be weeks, but Caleb’s heart was going to fail.
As I made my way home from the hospital, my heart and mind was numbed from the devastating news. I asked God, “Why would You allow Caleb to be born and then to pass on just like that”?
And amidst the traffic, I heard the Lord say this to my aching soul:
“I want you to see my beautiful creation, Hannah. I do not delight in Trisomy 18, it’s a result of the Fall and sin in this world. But Caleb is still lovely and I want you to see him.”
Tears streamed down my face. Yes God, Caleb is beautiful indeed.
Bringing Caleb Home
We made preparations to take Caleb home so he could experience our family’s love. The nurses at the NICU trained me how to be Caleb’s primary caregiver. By His divine grace and strength, I learnt how to tube feed him his milk and medication, to wear his mask, to operate the ventilator, to change the tapes on his face and to remove his mouth secretions.
And a week thereafter, Caleb was home with us at two weeks old.
Caring for Caleb—Loving in the Face of Death
I had the privilege of looking after Caleb, and having him at home with us for a good five weeks. We were blessed to have a team of doctors and nurses come by to monitor Caleb’s condition. But I was exhausted. And every day felt like a roller coaster ride. On some days, Caleb was well and stable. On other days, I feared I would lose him. And as Caleb developed complications, he had hernia and seizures. It was not easy for him but he was peaceful and calm as he fought on bravely.
I was stretched to the limits—physically, emotionally, and mentally. While looking after Caleb, I also wanted to be there for my two girls. It was a hard time for the family as we made multiple adjustments. Honestly, I felt like a complete mess on most days.
One afternoon, I told God that I didn’t know how much longer I could carry on. In my utter helplessness and hopelessness, the Lord spoke gently.
“Hannah, these mundane tasks bring me glory. Whatever that you do for Caleb, you are doing them unto Me (Jesus). With each day that I breathe life into Caleb, as you and your family take care of Caleb, I am healing Your heart. I will give you strength.”
I cried—not tears of sadness but tears of inexplicable relief. I was weary but the Lord came by. Jesus was in my home. Whenever I took up the syringes and tubes to feed Caleb milk and medication, whenever I wiped him down, cleaned his secretions at his lips, changed his diapers, stayed by his side as he had seizures, I could love, even in the face of death, with His strength.
Saying Goodbye
It was about 10 minutes past midnight on 8 April 2020. I went into Caleb’s room, with syringes of milk and medication, a clean diaper, and wet cotton wool, all ready to clean and feed him before going to bed. Caleb had three seizures that day, and I was so relieved to see him sleeping peacefully when I looked at his cute little face.
“Hello Caleb, Mummy is here.” I stroked the side of his face and wiped off some saliva secretions from his lips.
Caleb usually stirs as he doesn’t like to have his lips cleaned. But this time, he did not move at all. I looked at him again, at his chest, his neck, his mouth. He looked like he wasn’t breathing. My hubby came into his room and we both called out to Caleb.
There was no response.
I sobbed as I lifted Caleb up and held his still warm body in my arms. I will always remember that searing pain and ache of carrying my lifeless son, my heart feeling the trauma of death.
I sat next to Caleb even after his doctor came by to certify his death and removed his equipment. I looked at Caleb. I never knew that I could look upon what I thought was ugly, and see that he is so beautiful. I never knew that I would find Caleb so adorable and cute despite his flaws. I gazed at his cleft lip, his slightly deformed thumb, little fingers and odd-shaped toes—Caleb is still lovely. God broke my perception of normalcy and showed me how to see Caleb from His perspective. God may have allowed imperfection in the form of Trisomy 18 in Caleb’s physical body, but Caleb is fearfully and wonderfully made. I said my last goodbyes to Caleb knowing that he is now fully restored and in the arms of our everlasting God.
7 weeks of life. 7 weeks of heartache with pain, joy, challenges, beauty and love all meshed together. 7 weeks (and more) of teaching his Mummy how to see God’s creation through His eyes of love.
Caleb was a calm, meek and gentle boy. Despite his flaws and sufferings, he bore it all so well. Never did I hear him cry out loud to complain. He was easily pacified, strong and brave. I will always remember that immense look of peace and joy on his little face when he passed away in his sleep. No signs of struggle, no gasping for breath—Caleb left in the most victorious way to go Home to our Maker. And for this, I am eternally comforted.
Till we meet again, Caleb, you will always be the most beautiful boy I know. And you will always be in our hearts.
Are you struggling to love or to be loved? God loves the unlovely and the rejected. He showed me how much He loves me as His child through my journey with Caleb. I am imperfect and I have flaws. But Jesus sees me as His beautiful creation. And today He sees you too—you are lovely to Jesus.
Our Memories with Caleb
Thank you for sharing your journey of faith, Hannah and family. Indeed it is a real life illustration of unconditional love of Heavenly Father through wonderful earthly parents like you. God will be glorified with your testimonies and precious memories of the days of baby Caleb’s presence with you. May the peace and strength from the Lord comfort you as you draw close to Him. It is a wonderful hope that the believers in Jesus Christ can have to be united again with Him and our loved ones at God’s appointed day for us. May your days be filled with love, peace and joy under God’s protection and provision.
Thank you so much for dropping in with this message. God’s peace has truly transcended all understanding and guarded my heart and mind. I could not have come this far if not for that divine grace and peace.
And yes thank you for the reminder that we have a greater Hope in Jesus, and the gift of eternal life. As much as it brings us a lot of grief and pain, we take comfort that at the end of this life’s journey, we will meet Caleb in his restored form. And I am very excited to see how he’ll look like then!
Amen!
Thank you for sharing this special love message with us.
YHWH bless you and keep you,
YHWH makes HIS face shine on you and be gracious to you,
YHWH turns HIS face towards you and give you peace.
❤️ Amen. Thank you for the blessings and encouragement.
May our Good Lord pour forth His blessings upon you and your family too as we enter the Advent season.
I can’t wait to see Caleb in his new body in glory. Till then, we sojourn through this mortal coil. Thank you for sharing Caleb with the world, Hannah and Yi Peng. Your journey will bring strength to thousands upon thousands. His life was meaningful and will fulfil its purpose. Love u guys.
Thank you Tim!! I cannot wait to see Caleb in His restored form too! I am very heartened to hear how Caleb’s short life has touched many hearts, and I am so proud of my little boy. You have been an encouragement to Yipeng and me in our journey with Caleb. So thank you dear friend. Sending our love to you too. ❤️
May the Lord’s peace and comfort be your portion. Thank you for sharing your story. Indeed, God’s love is sufficient.
Thank you for dropping in. ❤️ May His love fill your heart and mind ever more so as we approach Christmas. God’s blessings be upon you and your family!
I know it’s been some months after Caleb, but I still want to share with your family in your sorrow from your great loss.
Praise God for every blessing and every thought of love that He gives to us in spite our imperfections; it was clearly shown in your family. Thank you so much Hannah for sharing your story!
Thank you Kevin! We appreciate it very much. We lost Caleb in the midst of a pandemic, and we were unable to share our memories and love for our son with our family and friends in person. And so I appreciate you sharing in our sorrow. It may have been months since Caleb’s passing, but the grief can still be rather raw at times.
God has been with us, and His peace has sustained us. Thank you for the generous encouragement, and I pray for our Lord’s blessings upon you and your family!
Thank you for sharing your story. I felt God speaking to me through what you’ve shared as I struggle with loving myself and accepting love from others due to my physical flaws.
Thank you for reminding us to see through His eyes and not of the world’s.
God bless you and your family.
Thank you for the lovely encouragement.
God loves you for who you are and how you look Alexis! ❤️ No matter how difficult this life’s journey may be, hold on tight to our Father’s hand. May He provide all your needs to sustain your every step.
Sending our love to you!
Thank you for your story, for the reminder of the fullness of Father God’s love for us through your season of loving and learning to love Caleb. God bless and be with you all
Thank you. ❤️ God’s blessings be upon you and your family too.
Thank you Hannah and family for sharing the strength of the Lord and your life story. Thank you for sharing your courage with me. Thankful we have new hope, new life and new body in Christ.
God bless your family. Thank you for sharing your story and for validating how God truly works His way in the hearts of people who trust in Him. Continue to receive His favors and grace. Sending virtual hugs!
This is the best love story i have ever read! Thank you Hannah for your unconditional love for Caleb. It reminds us of God’s unconditional love for us, that despite our imperfections and sinful nature, He is the Great God who still loves and forgives us. The joy and love of our Lord be your potion and your strength as you and your familycontinue to delight in His ways. To God be the glory forever.
Thank you for sharing this painful yet beautiful story. I read and cried while reading. But at the end at which you said, that God loves you and me, and sees us as beautiful despite our flaws, weaknesses and ugliness, He loves us and sees us as beautiful. This has helped me tremendously. I have been struggling with anxiety attack recently and sometimes I wonder if I can ever be fully delivered. This assurance came very timely. May I be fearless and strong in this life for Christ.
Thank you for sharing your story. I cried and cried as I read it, feeling only a fraction of your pain and love for this precious child that you’ve lost. Caleb is a beautiful beautiful child and I’m so happy we all got to meet him through your sharing.
Thank you for bravely putting into words and beautiful illustrations your story, and sharing the comforting words God gave to you. Revisiting the memories must have been so difficult, yet here you are faithfully sharing your family’s story to the world! I know that many will, like me, be blessed by your vulnerability and honesty in writing about this heartbreaking moment in your life.
I too am coming to terms with having a baby with a condition. While God has been speaking to my family too, seeing how brave and faithful you and your family have been gives us new hope in our God. Truly, each child is fearfully and wonderfully made and deserves to be cherished in their own way! I am being humbled each day by how God continues to undo all the flawed perceptions that society has taught me and transform them into godly perspectives. Praise God that He is faithful through it all.
Lots of love to you and your family <3
What a beautiful story! Oh just brought me to tears, knowing that God can really transform those very imperfect moments into a very beautiful one, especially during times like these!! Thank you so much for being so open and sharing your beautiful story!
Thank you for pointing me to Jesus through your sharing of the trials you faced. Praying that the Truth we know revealed to us through God’s word will ever comfort and grant you peace, as we look forward to Jesus’ return!
Thanks for sharing your story. Indeed beautifully and wonderfully made. Safe in Jesus’ arms. May our Lord bless you and your beautiful family Hannah.
Thank you Hannah for doing this inspiring blog – such a lovely testament to the tremendous love that little Caleb enjoyed for his time on earth. Love your beautiful family pictures! Caleb is safe and well now in heaven. We will all see him one day 🙂
Rest in peace little caleb… run free from your illness…
Thank you, Hannah, for sharing your story about beautiful Caleb, even whilst the pain is so fresh and so close. Psalm 139:13-14 too spoke deeply to me, over 20 years ago, and even now, I find it still moves me. My daughter suffered brain injury at 14 months old from a common virus infecting her brain, putting her into months of coma, and resulting in global development delay. Like you, I have learnt to understand this psalm from our Father’s perspective and to praise Him for His wondrous creation. Take courage, dear sister, because our Father God is SO GOOD! You will grow from strength to strength and as you continue to lean deeply into Him, you will find comfort over and over. Blessings!
We are born into eternity. Am certain will meet Caleb “in person” one day. Pray for us, Caleb + Jesus, we trust in You ❤️
Thank you Hannah for sharing so vulnerably and openly how God worked in your heart to show you what love and beauty looks like. I was deeply convicted and challenged by your story. I pray God gives you and your family healing and peace through grieving the loss of Caleb. It was clear he was so very well loved during his time on earth.
Thank you so much Hannah for sharing this story of love and courage. I work in the Special Needs sector and there are many thriving children of God, just like your cherished boy Caleb, in the school I am at. Your story, shared so truthfully and faithfully, will no doubt touch the hearts of parents everywhere who struggle similarly. May little angel Caleb watch over his beautiful earthly family who loved him dearly, and may the Infant Jesus bring His Peace and Joy into your heart and home this Christmas. God bless you.
Thanks for sharing your story Hannah God is using Caleb and you to for His glorious purpose, bringing light, hope and comfort to those around you and to the ends of the world, especially more meaningful as we are going to celebrate the birth of Jesus! We will reunite in heaven 🙂 “But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself.
”
Philippians 3:20-21
Thank you for sharing such a beautiful and moving story, Hannah. You are a strong, amazing and beautiful woman and Caleb is a lovely baby to behold. Thank God for sharing something so precious and beautiful. May God bless you and your family for bearing such a powerful testimonial for God.
Thank you for sharing your story. My boy has been home for 7 weeks after 152 days in the nicu on a cpap and ngt. I am finding myself 24/7 in a room suctioning, tube feeding/bottle & breastfeeding etc. and was so weary of how long this journey will take. Yet, your story has shown how God is always sovereign and in control, and how beautiful it is to be shaped by the potter despite the pain. Praying for you and your family.
Thank you Hannah for sharing a beautiful & powerful story of agape love – the love that God is. Thank you for inspiring us to see beyond the natural into the supernatural. God is good always! Blessings
Thank you for sharing your story with us. Caleb is now with Jesus and be liberated from illnesses! You will be doubly blessed for bringing Caleb to this world and for loving him ❤️
My dearest Hannah,
I may not know you personally as I had left Singapore to work in a mission hospital in Penang as a Paediatrician 31 years ago .
I have taken care of a few babies with Edward’s Trisomy when I was in the old Kandang Kerbau and SGH NICUS.
I cried as I read your very detailed journey with Caleb ,tears shed because of love and victory and faith and dependence on our most Holy God .
We will all meet again , soon , at the last trump , the mighty victorious shout of God , at this much awaited reunion . No more tears , no more nights , never crying again . I will go hiking with Caleb ( I hike Penang Hill everyday , nearly ) . Let me see this brave boy , so loved by his family and of course , loved by his Saviour and Lord .
Hannah , come and stay with me with your family when you visit Penang . I own a small beach hotel , called Lost Paradise Resort . We have a church and a small school
for children with special needs ( my second son has autism ) .
I will love to host your family when the Covid situation is down .
Much much love to you
Dear Hannah, it is a courageous story filled with so much love and pain, although there are reasons that man cannot fathom this reminds us to continue with our lives despite the sorrow and challenges. Thank you for sharing and may God bless you and your family!
God bless your beautiful family. Thank you for sharing your story.
Dear Hannah, thank you for sharing your story. Sometimes it feels so difficult to understand God’s goodness in the midst of pain. Thank you for reminding us about God’s love and grace in all situations. God bless.
Hanna – Thank you.
Most of us can only imagine what that journey was like but the Bible says that there’s a friend who sticks closer than a brother, who walks with us through deep waters and when we pass through fires. As if the pandemic effects weren’t hard enough and to go through this and come out with your faith in Christ intact, I praise God. May the Lord continue to heal and restore you and the family. He is a faithful God. I personally struggle with accepting any imperfections in me or in others and I believe I didn’t bump into this story by chance. I have a changed perspective after reading your story. You are an amazing person and a true follower of Jesus. Surely Caleb’s death wasn’t in vain as I pray that others will experience the same conviction as they read this powerful testimony. Love you Hanna with the love of Christ.
Dear Hannah, thank you for your testimony of faith. For sharing all your honest and raw thoughts. For showing God’s infinite goodness and ways that may be so hard to understand at times but also for the grace that He gives to you and your family through the birth and death of Caleb. May the peace, joy, hope and love of Christ be with you and everyone at home this Christmas. May Caleb, safe in our heavenly Father’s arms, watch over you always.
Thank you for sharing this with us.. what a powerful testimony.
The seven weeks speaks to me. “Seven” is a number of perfection and completeness in the Bible. Seven weeks that Caleb lived in this world is really no mistake. He taught you and through your sharing, he taught all of us, that God loves us perfectly despite our imperfections.
Seven weeks also reminds me the seven days of creation in Genesis. Each day after He finished his work, He saw that it was good. But on the 6th day after he created human, He saw that it was VERY good.
As Christmas approaching, I’m reminded again that He came coz He loves us so. And He wants to teach us how to love too. This story reminds me to rely on His grace alone when I feel beaten by my struggles.
Thank you and God bless you and your whole family..
Thanks for sharing your story so courageously!
Thank you Hannah and family, for sharing this very beautiful story. I was moved to tears and when I saw the photos of Caleb, I was amazed that he represented so much strength, courage and bravery, despite the fact that he is so young and unaware of the world. Perhaps, this could be one of God’s reason for bringing him to this world – to embolden the weak-hearted and those who think they are lacking in life. Thank you also for being an advocate of life, and bringing him to this world as long and as far as God would allow. Your faith in God is really inspiring and I’m sure Caleb would have felt that in his heart. Those 7 weeks must have been the hardest but also wonderful days of his life, as he got to meet his wonderful parents and sisters here on earth 🙂 Have a blessed Christmas!
Hi Hannah thanks for your courage to share this experience that touched my heart so deeply. I was crying as I read it. You look so radiant and positivr in all your pictures despite the forbidable challenges you faced. I can truly see now God has sustained you and your family and given you so much my strength and courage. Thanks for helping me and alot of of us out there see God’s grace and his love in all this. May Caleb rest in peace with Jesus and God continue to bless you and your precious family.
Hannah, you are an inspiration to countless people. Thank you for sharing your touching story. God is indeed awesome and your faith has been tested. I admire you for facing the truth, life challenges and your unconditional love. You have a loving husband who has supported you in this difficult journey.
God bless, wishing you and your love ones a holy and blessed Christmas
Dear Hannah
Your journey with Caleb and God’s strength has brought tears and encouragement to me when I read through your sharing and testimony
I could feel how God’s so love you and Caleb that till today the year 2021..your testimonial still bring peace, joy and encouragement to believer who find strength in His word and work through you Hannah.
I wish to thank ymi.today in providing this platform to all who can hear God’s real work on humanity that so real and so true..to Hannah’s family and Hannah, may God’s love and strength continue to be with you as we lean on our imperfection each day on our sovereign God.
Thank you Hannah….Love! Gerald
Sobbing throughout this testimony. It’s amazing how God used this little baby Caleb to teach us and bring out so many of His wonderful truths. Thanks for sharing with us Hannah. God bless you and your family.
Thank you so much for sharing your story Hannah. It gave me so much peace knowing that someone is also going through the same healing journey as I am. I am also a mom to a baby girl born with trisomy 18 and holoprosencephaly (w/heart problems and no nasal passage), we weren’t able to take her home as she only lived for two days.
Those days we couldn’t sleep in the hospital as she would have as much as 8 seizures a night. Me and my husband were so exhausted, and honestly I really wanted to give up. I was asking for the Lord to at least help us get home so that other family members in the province can at least see her alive, but alas, God took away her pains at day 2, and very peacefully at that. She looked like she was just about to fall asleep at her last moments. I am very thankful to the Lord that she didn’t have a painful death.
We stayed with her ashes for about a month (we were stranded due to covid restrictions) and we’ve been able to give her a proper burial eventually.
I am praying that we both find peace and healing soon, it is very difficult to go on with life after such a devastating experience. I am now pregnant with my 2nd child and am very much afraid that the same thing might happen again. But God willing, everything will be okay for us moving forward.
Please always keep safe and know that I will also be praying for you and baby Caleb. I know somewhere up there, he might be friends with my little Maureen and playing with other angels. God bless you and thanks again for the wonderful piece.
Our grandson was born with many anomalies not as many as Caleb but fatal nonetheless. He lived eight weeks. The family is still hurting but trusting the Lord. Blessings on your head.