The Dreadful Holidays

I turned to Cameron today as we made our way down to Fort Worth and asked, “Do you remember the first time we came down here?” He said he couldn’t remember. But I could see it vividly. The highway was still in the same constant state of construction, skies were the same typical winter gray, and the trees were nearly bare along the side of the road. Last year, I  looked up on the new large city with the new large hospital and dreaded every bit of it. I knew it was December and that the hospital would be decorated extensively for Christmas. Nothing about Christmas last year felt exciting. I just sat wishing every day to slip by unnoticed.

For many of us, we look toward the holidays with dread, fear, anxiety, sadness, or depression. We know that something will be “off” or “not usual” this year: the empty seat, the foreign food, the missing companion, or like us, the strange location and uncertain prognosis. We spent a quick time at our usual family Christmas and then hurried down to the children’s hospital to spend a few hours holding our twins. Charlie ended up “clamping down” or having a “code blue” moment on Christmas, a trend he continued on every holiday in the hospital. So I completely understand dreading holidays. I understand wishing everyone would not make such a big deal about it and let it pass by quickly.

I also understand the feeling of guilt related to the holidays. I felt guilty for not caring about Christmas. We didn’t feel happy enough to shop in stores. We didn’t take the kids to go see Christmas lights. I asked Evelyn last week if she remembered if we put Christmas lights up, we didn’t. There can be such guilt for being unhappy during the holidays. Our culture demands this to be “hap-happiest season of all”! For the world, it is because this is the season of thankfulness and giving (but being happy seems to rely a lot of receiving). The Bible will tell us the truth that this season is the greatest because it is the remembrance of the birth of Jesus, the savior of the world.

I was aware of this truth but it didn’t change my constant apathy about the “festivities”. During this time last year, we have had to remind ourselves of what is true. These truths were the grounding forces for my mind when it was so easily going adrift. And so if you dread these coming holidays or are already singing Christmas carols in the shower, I give you four truths and tips that I found helpful.

1. God loves me, even if I missed 20 of the 25 days in the advent calendar. It ok to forget about traditions, skip the work holiday party, shop for all your gifts online, or forego sending family cards. You’ll hear about everyone else doing all their merry, cheery activities and perhaps feel guilty that you aren’t and really don’t want to. God’s love for you is based on Jesus, and absolutely nothing you do (or don’t do) and certainly not based on your emotions (for the most part). But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. Romans 5:8

2. God often provides ways you can show love despite feeling dreadful. Eating cafeteria food on Christmas was far from glamorous but spending hours of Thanksgiving and hours of Christmas with the staff in the hospital was surprisingly delightful. They dreaded going to work on that day, we dreaded having children there but with that “misery loves company” idea, we had a great time. Therefore, as we have opportunity, let us do good to all people… Galatians 6:10

3. That leads me to this key point, perhaps it’s time to change your expectations. What you see your friends do with their family and friends for the holiday can create a sense of false expectation for your life. Pictures with Santa! They are so cute, can we take Charlie to Santa this year? Um no, germs, gross. Even the amount of gifts one gives another or one receives can make you have false expectations of your loved ones. Just ditch it. You do you (in this sense, because that little motto is terrible advice in almost all other areas of life). For we brought nothing into the world, and we can take nothing out of it. But if we have food and clothing, we will be content with that. 1 Timothy 6:7-8

4. For those who are joyfully looking forward to the holidays, don’t forget those who are not. The hospital is still full of children and adults in which that day will be dreadful. There are homes with empty seats. There are remorseful people behind bars unable to get home. There are homesick students unable to pay the fare to go home. Do what you can. Do what you are lead to do. Don’t worry if it might be “cheesy” or strange. It’s not. We were on the receiving end of what people thought would be odd. But we smiled on Christmas, because even if we didn’t have everyone around us, we knew we were not alone. And to the anonymous person who left us a year’s worth of “loose change collection” (with a book about the Christmas Jar), we tearfully thank the unknown giver. Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 2 Corinthians 1:3-4

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.”

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 ›

Lie to me

“When is Charlie coming home?” It’s a question we hear multiple times a day and always by well meaning people. But honestly, this question adds stress to my life. A better question would be: “How is Charlie doing today?” Continue Reading ›

Permanent Circumstance

IMG_5769.JPGWhen you’re on a diet, the leaner body is the light at the end of the tunnel. Exam week and summer is the light at the end of the tunnel for students and teachers. Having a newborn baby is the light at the end of the long pregnancy tunnel. In our circumstance with Charlie, I’ve heard about the tunnel over and over again. Some days when the nurse is driving me nuts I wonder what part of the tunnel we are really in. Are we at the beginning of the tunnel where the light of better days still gives illumination from behind us? On hard days it feels like we are in the middle of the tunnel where no before light or light to come is visible. I can say for sure we are not at the end of the tunnel. 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 ›