Hard Conversations about MLK Jr


Wheeeeew…, deep exhale. Last Wednesday we had our first conversation with Evelyn (age 6) about racism. This is the second of very hard conversations we have had recently, the first being the one I had when my grandfather was nearing death. But this one, seriously, was a difficult topic.

A few days ago I felt convicted that the way in which we were disciplining and communicating with Evelyn was not working. She is now six and enrolled in public school so much of her emotional and social behavior is changing. Our methods and assumptions about her had not matured along with her. My bad. Thankfully, I prayerfully asked God to help us learn more about her and find ways to deepen our relationship with her. And then came Wednesday.

At school lately they have been discussing Martin Luther King, Jr because the holiday was coming up. The school had already told the students that he was killed and that someone had shot him. This was mildly alarming as I wasn’t quite ready for Evelyn to be talking about guns and murder. We are a family with a police officer parent so this was perhaps less dramatic or shocking than it could have been for another family. We did not press the issue at the time either due to our normal, hectic life or simply being unsure about what to say. And then came Wednesday.

On Wednesday, we had one of our favorite nurses with us. Evelyn loves our nurse, a younger guy from Kenya. She often speaks of him as her best friend and jokingly says that she will share her room with him so he can stay forever. We enjoyed sharing our Thanksgiving meal with him at our table and he has also introduced us to African donuts and some amazing meals with lots of curry. (I had no idea they used curry so much and I now know how much I love curry). That evening Evelyn was in her usual playful mood with him and all the kids were creating chaos around his nursing station. We had planned to have a picnic in Charlie’s room so that the entire family, plus the nurse, could be together. As we busily gathered the food, we heard the words slip from Evelyn’s sing-song voice, “You will be dead…just like Martin Luther King!” She skipped around him and our eyes grew to the size of saucers. Cameron quickly rebuked her, “Don’t ever say that! Apologize to him now!” She was silent and terribly confused, unsure about what error she had made. I told her that we do not joke about death to any person.

There was a brief moment that I found to pull her aside into the privacy of her room. As best as I can remember, this is what I said: “Evelyn, what do you know about Martin Luther King?” And as I had assumed, almost nothing. “Evelyn, do you know what skin color he had?” Yes, it was dark, like the nurses. (Our four primary nurses are Kenyan, Nigerian, and black American.) “God created people with different skin colors. Some are dark and many times we call that ‘black’. Some are lighter and many times we call that ‘white’”. A long time ago, there were lots of problems with white people being mean and hateful to black people. And even today, you will still find people who don’t like someone because of the color of their skin. Evelyn, I’m sorry but this is a very heavy topic to talk about. This is not who we are. But sadly, a white man shot and killed Martin Luther King because he hated people with black skin. That man was full of hate and evil. We do not hate black people. We love them. Our nurses are practically our best friends, right?” With this her eyes began to fill with tears at the mention of such a hateful act. I tried to help her understand how jokes can be in poor taste: “Many people love Martin Luther King because he preached that we should love everyone no matter what their skin color is. And to make fun of someone who is a hero to many of us, is not a good joke. In fact, people get their feelings hurt. We are Christians and we love Jesus. He is our hero. If someone made a joke that you were going to be dead like Jesus, doesn’t that hurt your feelings?” Again, more tears and she nodded and I knew she understood. And at this our conversation was over. I told her we would vow to always be nice to others no matter what they look like. I told her that our nurse would not be mad at her because she is a small child and he knows that small children don’t understand these heavy topics.

For the first time after a rebuking of her behavior and actions, she returned to normal quicker than we expected. She and the nurse continued to play and hang out as if nothing had happened. I sat down, exhausted, and prayed to God that this truth will be so deeply ingrained in her heart that she will NEVER be accused of hate, racism, or malice.

I praise God for helping me explain, as best as I could, such a harsh concept. I owe a lot to the reading of Corrie Ten Boom’s book, The Hiding Place, which had so many examples of her father explaining hard truths to her and also for how she handled others who respond with hate towards other humans.

There will be more hard conversations with our children. I think I can predict a few but some will be these terrifying “Wednesday episodes” so I hope my heart and mind is ready to respond with truth and grace. And hopefully my jaw doesn’t become completely unhinged with the words that fall from her mouth.

For those of who are white families with small children, how have you explained racism to preschool aged children? Have your children been able to create close friendships with people of differing ethnicities? I feel privileged and grateful that our nurses are mostly all African with different skin color and also different languages. Our house is better for it every day.

Empty Resolutions

Copy of DSC_6914Is anyone absolutely exhausted from Christmas? Or is that just me? Seriously, I am so glad it’s over. Then I feel terribly guilty that I wish it all away. I did this year because it was constant chaos: the never ending of socializing, small talk, opening gifts, constructing toys, and cleaning up the mess. I tend to welcome New Years with joy and a sigh of relief.

New Years is known as the time to reorganize your life, take stock of how you spent last year and what you might change for the next, make goals, write down resolutions, and try your darnedest not to forget any. I love reorganizing. I like to make everything tidy and neat and in it’s place. I throw lots of things away because (despite the look of my craft area) I hate clutter.

I sit down now to think of 2018 and I’m struck with a sense of lostness. That weird feeling like you’re just floating through the days without any major goals beside feed and don’t kill the kids. It’s not the first time I feel this way and I can bet that you experience it also. You start to think questions like: “What’s the point?” “I’m bored. What can I do next?” “Is what I’m doing the right thing or do I need to be looking for something that fits me better?” I tend to start blaming it on not being content or not “knowing myself better”. I want to believe that it’s either a bad attitude and not being grateful or that I’m dabbling in hobbies or things that really aren’t my “gifting”. I think these are true to an extent. But I also think if I constantly run with these ideas, I will always come back to the feeling of being lost. So, what is to be done?

I prayed over this and began writing down my feelings and saying exactly what I was feeling because the paper I write on doesn’t judge me. All my questions were so “me oriented”. My heart knew that I was looking for purpose and that He has already told me what my purpose is. And it’s the same exact purpose as you despite differing personalities and interests. Jesus says in Matthew 22 that the greatest commandment is to love God and the second is to love your neighbor. The common saying is our purpose is to “know God and make Him known”. These two commandments are summarized in that catchy phrase.

Knowing this doesn’t take away the feeling like I should have a goal and resolution I should be making to improve  my life. Aren’t we always looking to improve our lives? Most of us are really looking to improve our circumstances. Today, the circumstance I find myself in is this: I am the mother of a medically complex child who requires constant care. My husband and I both have a parent battling aggressive cancer. Our social life has been interrupted. Our family dynamic has been altered. Our ability to serve in our church is practically eliminated. Our emotions are spent before the coffee is warmed each day. Inwardly, I want to write down resolutions for next year to make all these things go away. I desperately want the circumstances to turn out better than they are.

This New Year, I am foregoing the list. I will not make any resolutions about my physical body, my financial outlook, my free time activities, my gluten-heavy intake, etc. I’m sure those things will get done at some point maybe this year or the next. Instead, I will take a note from Charles Spurgeon about my purpose and overall “goal for life”:

“God has set apart His people from before the foundation of the world to be His chosen and peculiar inheritance. We are sanctified in Christ Jesus by the Holy Spirit when he subdues our corruptions, imparts to us grace, and leads us onward in the divine walk and life of faith. Christian men are not to be used for anything but God. They are a set-apart people; they are vessels of mercy, they are not for the devil’s use, not for their own use, not for the world’s use, but for their Master’s use. He has made them on purpose to be used entirely, solely and wholly for Him. O Christian people, be holy, for Christ is holy. Do not pollute that holy Name wherewith you are named. Let your family life, your personal life, your business life, be as holy as Christ your Lord would have it to be. Shall saints be shams when sinners are so real?”

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

Birth Day and following

During my time at the hospital for magnesium treatments, a young nurse tended to me. When we were sent to the hospital to deliver the twins a few days later, she was on duty and assigned to my surgery. She was with me when I sat on the metal table being prepped for anesthesia. They told me to lean over my belly and she wrapped her arms around me to keep me still. I began to sob into her shoulder. I was terrified.

My obstetrician came into the room and said, “You’ve done a fantastic job keeping these boys in for so long. Now it’s my turn to help them.” It was the only encouraging comment that had been made to me that day. The surgery began, Cameron was brought into the room, a new face appeared at my side, it was the neonatologist, Dr. Sidebottom. We had met Debbie, the neonatal nurse practitioner, in my room a couple hours before. They wanted to know every detail about the twins and what to expect. The NICU teams were being assembled. Each twin would have their own respiratory therapist and set of nurses. We did not know this at the time but the doctor had prepared the team with the instructions that Charlie was highly unlikely to survive and perhaps was too small for the equipment needed to keep him alive.

The time came for the delivery portion of the c-section and I could hear my doctor telling the nurses to be ready for Twin A. A tiny squeak. I could barely hear it. It was Jack crying. The team rushed to tend to him. Everything was in motion now. Cameron was next to me saying that Jack had been born and reassured me that the tiny sound was him. A minute later we heard the same tiny squeak. Charlie was alive, and in the most shocking turn of events, he was crying. Only God could have performed this miracle of life. The twins were assessed, hooked up to their equipment, stopped for a moment’s glance at my side and off to the NICU. The next part of the surgery was very uncomfortable.

We went to post-op recovery where the effects of the medications made me shiver violently. The weight of the situation sunk in again and I wept over and over. Many times during the pregnancy we had prepared ourselves to mourn the loss of one or both twins. Even now, there was a sense of grief about the loss of a normal pregnancy and birth. Cameron was allowed to go to the NICU and see the boys. I was not stable enough to visit and settled for looking at pictures when he came back. They were tiny. Charlie was just over 1 pound (650 grams) and Jack was just over 2 pounds (950 grams). Their skin was transparent and they had zero body fat. Their heads were the size of a clementines and I couldn’t help but feel disconnected from them. They did not look like the typical newborn baby.

The next morning they used a wheelchair to help me go to the NICU and it was happy and terrifying at the same time. We could only put a soft hand on their bodies or let them grip our fingers. Patting and stroking their skin would be painful to them. And so began our NICU journey. Over the next weeks, we would have doctors come and assess them each morning and call us with a daily report. Jack was doing well and on a mild form of oxygen support (CPAP). Charlie was intubated and on a ventilator. Premature babies have a “honeymoon” period for the first couple of days and we saw this as miraculous strength by Charlie to overcome his lung problems. Unfortunately on day 3, the topic of transferring Charlie to Cook Children’s in Fort Worth was first discussed. His ventilator settings were maxed out and he needed to improve within the day to stay. By the hand of God, he did improve. We were so thankful. I went home on day 4 and left the twins for the first time. There is a deep pain that happens when you arrive at the hospital, give birth to a baby, but do not take him home.

We visited the boys twice a day for hours at a time. It was a vigorous schedule and difficult to keep up. We exhausted all the friendships and family relationships we could manage. We needed babysitters for Evelyn and Otto every day in order to see the boys. During this time, Charlie would be cradled in the hand of God as his health would worsen and improve. Back and forth. We held the twins for the first time a couple weeks after they were born. When I put him back into his bed, he stopped breathing and turned blue. CPR was done and I, again, wept.  At this early stage, we had no idea how many times we would see CPR performed on him and how painful each time would be. They warned us that NICU was a roller coaster and it truly was. Some days we enjoyed some improvements like gaining weight, tolerating feeds, lower bilirubin counts, less oxygen support. Other days we would face the results of brain ultrasounds, echocardiograms, increased ventilator settings, need for blood transfusions, and the “clamping down” which is what we called the moments he would stop breathing.

IMG_2612I held tightly to the prayer that God would keep them both in our hometown so that we could visit them each day. I didn’t think traveling to Fort Worth would be doable. On November 29th, we arrived at the NICU as usual but were stopped at the desk to receive a call from the neonatologist. We knew it was bad news. Charlie was not improving enough and it was beyond the ability for the local NICU to handle. They were out of options here. We were too upset to visit the boys and we left. We sat in the parking lot and discussed what needed to happen. He must to be moved to another NICU. We had a meeting scheduled with the hospital staff in the morning. I felt disheartened that my prayer for the twins to stay nearby was now being answered with a “No” by God. I see, 11 months down the road, that His hand was guiding us to the perfect place for Charlie and Jack. Each piece of this complicated puzzle was being laid down perfectly even if we couldn’t understand.

On November 30, 2016, we met with the local hospital staff. This included our primary nurses, the nurse practitioner, the neonatologist on call that week (Dr. Paley), and some of the administration of the hospital. We sat in a private conference room on a restricted floor of the hospital. The diagnosis was discussed further: Charlie had pulmonary hypertension but for an unknown reason. At any rate, they suspected he would need to be in the NICU for at least 6-8 more months. Jack was doing well and would not need to be transferred. The twins would have to be split for the next few months and they assured us that if we must make a choice, that visiting Charlie would be highest priority. “Jack will understand in the end.” How does someone make a choice of one child over another? We cried and asked how much the ambulance would be if we could pay out of pocket. It was more complicated than that. All I could do is place my hope and trust in God who knew the deepest longing of my heart. Then across the table one of the administrators spoke up, “Your family has touched our hearts. The hospital will pay for Jack to go with his brother.” And here, our doctor began to cry.

IMG_3235It took from 10am to 9pm for the transfers to be completed. Using a specialized pediatric transport team from Cook, the twins were moved to Fort Worth, an hour away. We mazed through the back hallways of the hospital, it felt ridiculously complicated. In the months to come, we would become so accustomed to these halls that we learned multiple routes and nearly hidden passages to get anywhere we wanted. I was consumed with the fear and anxiety of this change. God was with us, but I couldn’t feel it. The NICU room was private and suited for twins so they could have a single nurse and quietness. I began talking to the new NICU team and the walls and ceiling where slowly crowding in around me. Why would they build such low ceilings? Doesn’t anyone else feel it moving in? This room is tiny! We can’t stay in here! I can’t breathe…. PTSD had set in for the long haul.

Charlie had an echo done immediately and among the twenty people in our room working with Jack and Charlie, a peaceful face found mine in the crowd. The woman walked over to me and introduced herself as Dr. Nesslein. She was the neonatologist on-call and would be permanently taking charge of our twins. An echo was done immediately and she quickly diagnosed the source of Charlie’s pulmonary hypertension. Everything was simple, routine, and normal for their staff. God was revealing to my heart that though He said “no” to my prayer that day, what He had in store was beyond my ability to comprehend.IMG_3247

Evelyn’s birthday, Cameron’s birthday, and Thanksgiving had all slipped by without much acknowledgement in November. Here, the children’s hospital was magnificently decorated for Christmas. The kids were thrilled to be coming to such a magical place. Praise God for the mindset of children. We went down to the hospital cafeteria, let Otto eat green Jello, and decided not to tell him it was his birthday.

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.”

The Future

Today, I answer the most oft asked question, “How long will Charlie have to be like that?” It’s a pause from our posts about the background story. Also, I kept the crying baby out but you can hear my phone ding with text messages. You win some, you lose some. And I need to get my bangs trimmed. I could have brushed my hair a bit. Well, this is life y’all.