How much pain can we bear?
Have you ever received the worst news possible—news that would change your life forever? We did.
We are parents to four children—three boys and one girl. In 2007 our daughter, Gabrielle, was born with the lower part of her spine undeveloped. It’s a birth defect that we previously knew nothing about called spina bifida. When Gabrielle was born, the lesion on her back by her tailbone was open and exposed. I was staring at something that was about to change our lives forever.
Spina bifida is a neural tube birth defect in which the spinal column fails to develop properly, resulting in varying degrees of permanent damage to the spinal cord and nervous system. One week after she was born, Gabrielle developed hydrocephalus. Hydrocephalus is a medical condition in which an abnormal accumulation of cerebrospinal fluid (CSF) is collected in the ventricles, or cavities, of the brain.
This neural tube defect occurs within the first four weeks of pregnancy, before most women even know they’re pregnant. Throughout my pregnancy all my tests came back normal, and we found out only at birth about our daughter’s condition. You can imagine the shock we felt that day. Gabrielle was born with the most serve form of spina bifida called myelomeningocele.
Preparing for Surgery
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made” (Ps. 139:13, 14).*
Gabrielle needed to have surgery immediately to reduce the risk of infection and to protect the spinal cord from greater damage. As a result of this opening, the nerves in her spinal column could be damaged and not work properly. To treat the hydrocephalus, a shunt had to be permanently inserted into her brain to drain the CSF. It was heartbreaking to watch our tiny and helpless baby undergo two surgeries in the first week of her life, then have to listen to her doctors talk about the many deficiencies that she would have to live with. I felt as though I was in an awful dream. I desperately wanted to wake up to a whole new world that never spoke the words “spina bifida.”
The nerves that were damaged affected various parts of Gabrielle’s body. She has bladder atony with incontinence and requires intermittent bladder catherization. There also are issues with her legs and feet. Gabrielle has had various surgeries to correct her curved feet. In those early moments I began to let fear creep in, wondering what kind of future my daughter would have. A piece of me really wanted to hold on to the hope that my little girl was going to be OK, but somehow many negative thoughts took over. Why was it so hard to hold on to hope?
Adjusting to the Reality
“I cried like a swift or thrush, I moaned like a mourning dove. My eyes grew weak as I looked to the heavens. I am being threatened; Lord come to my aid!” (Isa. 38:14).
Once we were allowed to take Gabrielle home and begin taking care of her, I became paralyzed with incredible fears and horrible doubts. I kept asking God, Why me? I had so many questions for God to answer. At that time in my life I was on a crazy, emotional rollercoaster ride with endless cycles of high and low moments. One moment I felt as though I couldn’t breathe and would burst into hiccupping tears. Then the next moment I was playing peekaboo with Gabrielle’s feet, trying to make her smile back at me. I knew that something in me was broken, and I needed my Lord and Saviour to fix it somehow.
A Gentle, Divine Reminder
“The Lord is close to the brokenhearted and saves those who are crushed in spirit” (Ps. 34:18).
Then one day after much prayer, something like a lightbulb turned on in my head. I was gently reminded that God wasn’t finished with Gabrielle yet. I had to ask myself, Isn’t God the one who formed the earth in the beginning and spoke life into everything and everyone? Yes, He is the same God who fashioned Gabrielle in my womb, blessing us with a precious girl. I needed to stop complaining and feeling sorry for myself and start asking a new question: Why not me, Lord?
We will all encounter challenges that initially seem insurmountable. While we wait for a solution, faith may be all we have to hold on to, and sometimes simply trusting that there will be an answer will get us through those darkest moments. The key to moving forward, even in hard times, is to let our vision for life be guided not by what we can see, but by what we can imagine. That’s called having faith. God is more powerful than any struggle, and I had no other choice but to believe and trust His wonderful plan for our family.
Trusting in God’s Love
“We live by faith, not by sight” (2 Cor. 5:7).
Gabrielle is now 12 years old. She loves playing sports, swimming, and traveling. So many miracles along the way have developed our daughter into a beautiful and strong young person. She never once tells herself that she can’t do anything, because she knows that God takes special care of her. I have learned that for every disability Gabrielle has, she is blessed with more than enough abilities to cover her challenges. I initially made the mistake of allowing negative thoughts about our daughter’s disabilities block the wonderful future God had in store for her. But I thank God that He did not give up on me. The Lord showed me everything I needed to know through Gabrielle’s life. Every year was a milestone in Gabrielle’s learning and development. She is indeed a miracle child.
God is surely not finished with Gabrielle yet. God will never forget us because He loves us that much. The worst things always come together for good in the end. Hope appears even in the worst of times to give us proof of God’s presence and abundant love. As a family we have put our complete trust in God. We don’t know what tomorrow holds for Gabrielle, but because we believe in Him, we know who holds tomorrow.
“‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future’” (Jer. 29:11).
* All Bible texts are taken from the New International Version.