A Joyful, Difficult Journey: A Birthday Tribute To My Son, Gideon

Posted: May 22, 2014 in Christian Living, Doubt

GideonToday is a very special day in the Tong household, as we celebrate our son Gideon’s 2nd birthday. What makes today more special than any other birthday? Well, unknown to us before delivery, Gideon’s body was not forming exactly right in the womb. He had a severe birth defect known as bladder exstrophy, a rare defect that affects 1 in 40,000 babies. His hips were rotated out slightly and therefore his pelvis did not properly close. This allowed his bladder to “pop through” and form on the outside of his body. Along with this condition come an epispadias, bowel issues, bladder problems, and possible neurological problems at the base of the spine. What began as a normal delivery turned into an emergency flight to Louisville and a conversation with a pediatric urologist who had only one failed exstrophy operation on his resume.

They sent us home from Louisville, assuring us that Gideon was in no immediate danger. We were instructed to cover his bladder in saran wrap. A relative did some research for us and uncovered Dr. Gearhart at Johns Hopkins, the top bladder exstrophy surgeon in the world. Over the next year and a half, Gideon would have three major surgeries at Hopkins. His first surgery was an analplasty along with some work on his bladder. The second surgery, lasting about 13 hours and a six-week stay at the hospital, was his closure – getting the bladder in and the hips corrected. The third surgery was to correct his epispadias. Not counting regular check-ups, Gideon should only have one more major surgery and a couple of minor ones over the next 15 years. After all the repairs, he will be pretty much a normal guy with a few “special” variations (like no belly button).

Post-opbladder

 

 

 

 

 

 

 

 

This surgery marked the most trying time in the life of our family. Our marriage was strained, I wrestled with high blood pressure, and our sanity was pushed to its limits. However, we have endured thus far and our family is better for it. Looking back, I’m not sure I would change anything. Having briefly shared the story, let me give you a few things we learned from this experience.

  • God is unchanging, good, and loving. Despite our suffering, God’s character remains unchanged. My wife, Sarah, struggled with being angry at God, but we both learned over time that suffering is not always punishment. God longs for our ultimate good, which is to know him, and often suffering is what drives us there. As C.S. Lewis said, “God whispers in our pleasures, and shouts in our pains.” Despite our suffering, the great truths of the Gospel remain fixed, a firm foundation.
  • Modern medicine is wonderful. I cannot say enough about the staff at Johns Hopkins, and especially Dr. Gearhart and his team. I have learned to love that place and the gift they gave our family. What a great and godly gift of service to mankind is the medical profession.
  • Suffering is for our good. No one volunteers to suffer. Suffering hurts, it is painful, and it weighs down our soul. However, the character forged through the fires of suffering is precious, and obtained in no other place. I know that I am a sinful person in need of growing in godliness, and the suffering our family endured propels us toward that good. I see it as a good gift of God to be shaken from the trivialities of this world to gain a heavenly perspective.
  • We are not our bodies. I have written often of the distinction between body and soul, yet this experience put feet on my belief. You see, if Gideon was nothing more than his physical body, then I have reason to despair, because his body is flawed – it has defects. He will endure pain, trials, and suffering. But I believe Gideon is not his body, but rather a soul. His body is just his garment, to be thrown off at the end of this life. His character and soul are much more important than his body. So while we suffer over the pain of his condition, we suffer with joy and hope. 2 Corinthian 4:16-18 says, “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
  • I love my family. This experience has brought our family together in a special way. My bond with my wife is stronger now than ever. I love all my children more, and I have a special bond with my youngest son, Gideon. This trial has snatched away complacency with a more active love, and for that I am thankful.

Kids

 

Gid eating

 

 

 

 

 

 

 

Jordan

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