Since finding out Daniel’s diagnosis, I have joined a few groups on Facebook for families of children with heart defects. One of the groups is specifically for families of children with HLHS.
This morning, one new mom posted a familiar message. She had just come from her 20 week ultrasound in which her baby was diagnosed with HLHS. All of us who have children with a congenital heart defect understand her feelings all too well– instead of finding out the gender of the baby, your entire world feels like it is crashing down all around you. Your precious baby whom you already love is given a devastating diagnosis for which there is no cure.
Many new moms post in the group when they receive their baby’s diagnosis. There is so much confusion and uncertainty, and at first HLHS can seem like an automatic death sentence. Most new moms are looking for information and support, but this new mom’s message contained one difference from the usual. She said her doctor recommended termination of the pregnancy.
Her post immediately garnered dozens of responses. All of us with babies with HLHS posted pictures of our heart warriors. For those of us who are home with happy babies free of wires and tubes, the idea of termination is unfathomable. Just like new moms forget the pain and agony of childbirth once they hold their baby, all of us with hope for the future for our children remember our time in the hospital as a vague nightmare we are trying to forget.
But there are moms who didn’t get to bring their babies home. There are plenty of sad stories of babies coding on the operating table, of ones who have to remain on life support for weeks before they pass away, of those who never leave the hospital. One such mom replied to the new mother with her story. Her baby died on the operating table after 11 hours of surgery. She said she would have had an abortion had she known the pain and suffering her baby would go through in this life. “Siblings, finances, marriages, everything is affected,” she wrote.
She is absolutely right. Siblings have to go without parents and may lose a baby brother or sister before they really understand what that means. Financial security goes out the window as you have to live hours away from home, pay a whole new set of bills, not to mention all the medical costs. One parent has to quit her job to become a permanent caregiver to the baby. Marriages fall apart under the stress. Everything is affected.
The loss isn’t the whole story, however. Apart from the fear, something incredible happens.
This post is for those who are struggling and wondering if the pain is worth it.
I am writing blog posts to be published in the future dealing with siblings, finances, and other ways God blesses us in our suffering. This post attempts to explain the thing that happened within my soul.
Through Daniel’s broken left ventricle, God has healed my heart. When I wrote my blog post “Spiritual Preparation,” I wrote about the need to spiritually prepare for future suffering from a cerebral, logical point of view. I understood reading the Bible was something I should do. Now, after everything we have been through, it is something I need and want to do.
Before Daniel’s diagnosis, I never had time for Bible study. I was teaching multiple subjects which includes planning, reading, and grading; trying to raise two toddlers; attempting to manage my household in cleaning and cooking. I got the Word when I went to church, and I rarely made time to pray.
When you get the news that your baby has a devastating heart defect, when you have to see his open chest and beating heart, when you are scared your precious son may not make it to tomorrow, all you have is the Word.
For months I was exiled to Houston, and I was angry. I was away from home, away from my beautiful children, away from my family and my church. I was missing precious moments watching David and Hannah grow while grappling with the fact that my baby may be born, suffer greatly, and die without every really tasting life. I wrestled with God day in and day out. I knew then and still know now that it might be in God’s plan for Daniel to die at a young age. Even though Daniel still lives, I know that incredible pain is in his immediate future. He will have to go through operation after operation. How can any of that be good?
At some point before Daniel was born, I was sitting in the RV alone, ruminating over all of that and feeling sorry for myself. In that moment, I began to read my Chronological Life Application Study Bible. It is hard to argue with God, if you are the only one doing the talking, so I decided to listen to Him through His Word.
I shouldn’t be surprised at what happened. It shouldn’t be a miracle that I am only just now understanding. I have been a believer all my life. I am a lifelong Christian. Somehow I didn’t realize the power of God’s Word. It is living, transformative, healing, and enduring.
The writer of the book of Hebrews says that “the word of God is living and active, sharper than any two-edged sword, piercing to the division of soul and of spirit, of joints and of marrow, and discerning the thoughts and intentions of the heart” (Hebrews 4:12). Peter describes the Word as “imperishable,” “living and abiding” (1 Peter 1:22-23).
Why is the Word so powerful? Timothy Keller explains it best. In his book Prayer, he writes, “God’s words, however, cannot fail their purposes because, for God, speaking and acting are the same thing….To understand Scripture is not simply to get informaiton about God. If attended to with trust and faith, the Bible is the way to actually hear God speaking and also to meet God himself.” If that isn’t clear enough, let’s not forget John’s words, “In the beginning was the Word, and the Word was with God, and the Word was God” (John 1:1-5). Jesus himself said,“It is the Spirit who gives life; the flesh is no help at all. The words that I have spoken to you are spirit and life” (John 6:63).
When I started reading my Bible, I was expecting to find answers. In reality, I found something much more precious. When I immersed myself in the Word, I fell in love. Jesus is no longer someone I believe in; He is someone I love, someone I need in my life, and someone I miss when I don’t spend time with Him.
I was recently reading John 10 (NLT) when Jesus says, “I am the good shepherd; I know my own sheep, and they know me, just as my father knows me and I know the Father. So I sacrifice my life for the sheep.” When I read that now, it almost moves me to tears. I know that guy! When Jesus told the parable of the lost sheep, he said, “If a man has a hundred sheep and one of them gets lost, what will he do? Won’t he leave the ninety-nine others in the wilderness and go to search for the one that is lost until he finds it? And when he found it, he will joyfully carry it home on his shoulders” (Luke 15: 2-5 NLT). What a joy to be the lost sheep!
I didn’t receive an answer to my questions: How can Daniel’s suffering be good? How can Daniel’s broken heart serve a purpose? This isn’t fair; why him? Can you please take this away from him, Lord?
What I did receive was absolute peace. I remember the day it happened. It was on the day of Daniel’s pulmonary bands surgery, July 20th. In the grand scheme of things, the PA bands surgery wasn’t a big deal. The procedure isn’t technically difficult, and it doesn’t carry the same risks as an open heart surgery that requires cardio-pulmonary bypass. But when Daniel was wheeled away from me that morning when he was 6 days old, I lost it. I emotionally broke down. I think it was the recognition that this begins Daniel’s lifelong struggle with CHD. He will endure many procedures and surgeries. His life will be filled with hospitalizations, needle sticks, IVs, picc lines, ventilators, etc. The PA bands surgery is what started it all, and I was an emotional wreck.
After they took him away, I was in the elevator when a profound peace came over me. I don’t know how all of this can be good, but if God wills it, then it must be. That understanding and that realization is the best thing that has ever happened to me. Throughout my experience since March 31st, I have seen God provide physically, emotionally, and spiritually, again and again and again. I absolutely trust His will, I absolutely trust His plan, and I absolutely trust His love. Without Daniel’s HLHS, would I have ever understood the true peace that passes understanding? Without Daniel’s HLHS, would I have ever understood true intimacy with God?
Because of Daniel’s HLHS diagnosis, I now understand in my heart what my brain always knew.
To the new mom who has recently discovered her baby’s diagnosis, “Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened” (Matthew 7:7-11 NLT). You may never understand why this has happened to your child, but if you keep asking, seeking, and knocking through prayer and immersing yourself in the Word, you may find something much more profound.
To the person going through a challenging time, “Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths” (Proverbs 3:5-6 ESV). Never doubt that “after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you” (1 Peter 5:10 ESV).
So, yes. The pain is worth it. Daniel is worth it. The toughest times have helped me see the miracles in every moment.