Defective Heart

IMG_6604“Well it is called a defect because it is a hole and it is not supposed to be like that.” And so began just another typical conversation with one of Charlie’s doctors. This time the doctor was telling us more about a hole in Charlie’s heart called an atrial septum defect. As he began to explain and draw diagrams to explain congenital heart disease, my heart began to sink. Another ounce of bad news. But then the conversation took a sudden change, “kids with a hole actually do better than kids who do not.” What? We like the defect?! The explanation began about how beneficial this problem is in light of a bigger issue (Charlie’s pulmonary hypertension).

It reminds me of the end of Genesis and the story of Joseph reconciling with the brothers that betrayed him. “What you meant for evil, God has meant for good.” It has been preached a million times about how to thank God for the hardships of life. It’s almost an easy concept to accept. We cling to that hopeful note when any hardship comes. Once the suffering is over, we begin to cling to our comforts and ease. There is never the asking for hardship and suffering. But should there be?

Suffering produces character. We know that character is good. We want to develop character with books and reading and listening to sermons and painting pretty pictures. But it just doesn’t happen that way. The pearl is developed with the irritating grain of sand. The gold is refined by the blazing heat of fire. The tomato plant brings forth fruit after it is beaten. Our lives produce godly character when we suffer.

Joseph was left for dead and thrown into slavery because of the actions of his brother. Charlie’s heart did not develop correctly because of the malnutrition from his inadequate share of the placenta. Each day our lives are weighed down with medical needs and decisions, we are emotionally drained, and constantly tired because Charlie has more needs than a person can manage. But what is one of my greatest fears? That life will be easy when he outgrows his trach and vent.

I want Charlie’s body to be healed but I also want more of these opportunities to be forced to develop character. Christ is better glorified in me when I look a lot less like myself. So what keeps us from asking God to develop character in us…by any means necessary? Maybe fear. I am often afraid I will not be able to tolerate the next wave of suffering. Maybe it is pride. I’d rather be comfortable and not have to rely on God. Maybe it’s laziness. Before Charlie, we didn’t have many major health issues that interrupted our day and I certainly didn’t want to go looking for any inconveniences from other people’s lives.

But deep down, when my thinking is clear, God lets me know that this present suffering is the answer “YES” to my prayer years ago. “Lord, don’t let me have an easy life.”

We

I typically do not eat breakfast. Most of the time it is because I am not hungry for the first few hours of the days. More often it is because I forgot while tending to the kids or dogs or other living beings in our house. Cameron wakes up starving and immediately cooks a large, calorie packed meal. Life is too constant for me to deal with something as trivial as eating.

Thankfully, many friends bring donuts to our house during the week. They check in on us and most questions to us revolve around Charlie and his health and his needs. He’s definitely the “neediest” so we aren’t bothered by this focused attention. I have a handful of friends that are gifted in asking questions and they venture to ask how we are doing. We? Well, I haven’t had much time to think about it. We, we are surviving. Continue Reading ›

The Second but Last Trimester

After learning that we were having identical twins which were not sharing the same amniotic sac, we nearly skipped out of the doctor’s office with glee. Morning sickness was tolerable and overall I felt pretty good. This continued for the next 4 weeks or so.

Despite dodging the “monoamniotic twin” scenario, identical twins get an extra dose of precaution with a second OBGYN to monitor the pregnancy. Around the 14th week, we began seeing a high-risk pregnancy doctor, also known as a maternal fetal medicine doctor (MFM). At one of the first appointments, we had a blood test done to detect genetic disorders and from those results we learned our twins were boys. We were so excited and almost immediately decided Twin A would be Jack and Twin B would be Charles or “Charlie”. Continue Reading ›

Get a Grip…or not?

Cameron and I have reached the point in our marriage that we skip over the niceties where one person tries to accommodate the other when it comes to picking out a restaurant or movie. If the permission is given, “You pick”, then the other person just does whatever they want. Years ago (ok, sometimes even now), we would say that and pretend like we were completely open to the other person’s choice. In the end, it was clear we were not happy and a fight would ensue. Giving over the reigns to food and entertainment is a huge sacrifice.

Years ago, I read this quote from Corrie Ten Boom: “Hold everything in your hands lightly, otherwise it hurts when God pries your fingers open.” It has stuck with me very much during this entire ordeal with the twins. Continue Reading ›

Strangely Persistent I

Recently, I spoke with another parent in the transitional care unit. In one week our kids had bonded. We knew of the reason the little girl was at the hospital: she had a brain tumor. Her mom took the time to explain to me more of her diagnosis and future outlook. I could hear her voice falter a little as she bravely told me of the aggressive nature of this “one of a kind” type of cancer.

There are these moments when the gravity of life breaks through the frivolity of our typical American lifestyle. The kids are running down the halls screaming of laughter. All the while two moms are leaning against the wall swapping stories of the moments their children almost died and quietly speak of an unknown future. The kids are oblivious. The weight, the pulling down, the heaviness of life falls on us. And it’s too heavy.  Continue Reading ›