An Undesired but Welcome Journey

guest blog by Kirk Kraft

2 Corinthians 4: 7:9 (NIV)
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.

There are roads you want to travel down and ones you would prefer to avoid. This seems pretty universal for human beings, but especially true for parents. We all desire to see our children grow up to be wise, strong, grounded in Christ…and healthy. Health is where our journey begins.

My wife, Patty, and I have been blessed with four wonderful children – three girls and one boy. The two oldest both had outstanding health when small except for the usual ear infections and colds. Our third child, Katarina, experienced an ailment that causes organs to shift internally. In her case, they actually exited her body. The shock was tremendous to my wife and I both and it happened a total of three times before things normalized. We never imagined this would be preparing us for something far more dangerous.

Our 4th child, Sarah Ann, was born on September 10, 2008. She was very jaundiced but also a happy baby. She ate well and wasn’t lethargic. But the jaundice wouldn’t go away. Our pediatrician wasn’t concerned so neither were we. Our other children doted on Sarah and she reveled in the attention as most tiny ones do. We noticed over the weeks that Sarah’s stomach was distended but expected that to be a result of her breastfeeding so well.

November 13, 2008 – The day our world exploded

I came home at the end of my work week, just like any other Friday. Patty had taken Sarah for her two month appointment. I clearly remember my wife’s face when I walked in the door that Friday. There was something wrong. “We have to go to Children’s emergency room now.” Not the words one likes to hear, ever. Our pediatrician had been disturbed by the ongoing jaundice and some other signs and ordered full labs for Sarah. The tests had shown alarmingly high numbers in regard to her liver. So we loaded Sarah and our three other kids – Patty had planned a movie night for them, so they were fully garbed in pajamas and ready to partake of some popcorn – and headed off to my parents. We deposited our other children there not really knowing how long we would be gone. Oh, if we could have foreseen the impact this would have on every member of our family. But hindsight, as they say, is twenty-twenty.

That night and the three days following it were some of the longest of our lives. Not only were we separated from our three oldest kids but Sarah was diagnosed with a life-threatening liver disease, biliary atresia, which affects about 1 in every 20,000 children. The liver either has no bile ducts or they are very small, allowing bile to build up inside the liver, causing irreparable damage. Sarah’s first surgery, called the Kasai, was the following Monday.

This is the beginning of another story, the story where the Body of Christ clearly demonstrated its love for one another. We were never alone for any moment from Monday morning through the end of Sarah’s surgery that evening. I can’t even begin to relate how important that was to Patty’s well-being. Yes, our friends love us and we are grateful for that but the kind of love that was displayed during this trial and beyond, to an eventual liver transplant, transcends just “friendship”. This was, plain and simple, Jesus loving two of the hurting members of his Body with overwhelming grace and mercy.

With a young liver transplant recipient in our home, our lives will clearly never be the same. It’s not just the trauma that change us but the face of Christ.

Kirk is a pre-published fantasy writer also working on picture books, one of which details the story of his daughter’s liver transplant from the viewpoint of a four-year-old. Kirk blogs about liver disease, the transplant community, parenting and other topics at http://livingwithbiliaryatresia.blogspot.com. He’s the father of four wonderful children, aged 2-8, and husband to an incredible wife, Patty. He resides in the beautiful Pacific Northwest.