What I Learned From Leukemia: Round 1

The week William was diagnosed with leukemia I received three journals. I was strongly urged to record all the emotions and lessons for reflection. These blog entries bear many pieces of my heart and mind, but most is sealed up because I am not sure what to do with all of it yet.

To start off this reflection, here are a few laughs and real pieces of advice I learned from the heroes who deal with childhood illness daily: the nurses and doctors.

THINGS DOCTORS AND NURSES WANT YOU TO KNOW:

1. When living in a hospital, wear appropriate clothing. I second this with ALL I have in me. I’ve seen more sagging cleavage, rear ends, cellulite and towel turbans than any Mississippi Wal-Mart can boast. It’s a tricky situation; to patients and parents, our whole home is a tiny room that is entered at all hours. HOWEVER, our quick walk down the hall for water or to buzz a nurse is still in a working environment. I too have stumbled to the door at 2:00am to beg for help with a demon-possessed pump, but as one nurse said, “Make sure the cow is not coming out of the barn door, gentlemen.”

2. Please don’t have sex in the hospital room 6 feet from your ill child. Yes, really. When I was a resident advisor, the most common complaint I had after morning/night respect issues were about roommates having sex in the room while the other seemed to be sleeping. This carries over into hospital rooms. MANY nurses have walked in while having to give meds or take blood. Yes, it’s complicated to live in a place without privacy, but there are other options. Life lesson: Assume the person is NOT asleep. If there is the slightest chance someone can enter and there isn’t a lock on the door, or say a terminally ill child is in the room… don’t.

3.. Hospital floors are GROSS; bare feet are NOT okay!  This one gave me the personal heebie-jeebies. Along with the Bathrobe Brigade are those who are comfortable walking around barefoot or in only socks in the hospital. This goes beyond personal preference; the floor has every nasty germ in each room- C Diff, RSV, chemo-vomit, allergy boogers, exploding diaper shrapnel… and it all gets tracked room to room on shoes. This is why I washed every ball that William threw to the ground EVERY time it landed on the floor; it went directly into his mouth. Three serious infections he caught were given by another hospital resident. Wear shoes– without fungus on your shower shoes. Until you get 20 in “the Show”, it means you’re a slob. (Name that movie!)

4. Nurses and doctors are real people too. They have great days and bad days; their kids teethe and have teenage angst. They connect with patients and are crushed when one dies, but must maintain a professional front for the cheerful people in the next room. The benefit of this is that they bring their unique talents and personalities into the care. One poor male was not great with babies or nursing mothers, God Bless him, but he could get any teenage boy to open up. Julia mastered animal noises and helped Will’s speech burst forward; Jocelyn brought out his excitement, Kathy taught him to love Scooby-Doo and Lisa knew to start antibiotics 24 hours before symptoms because she knew his body so well. Caroline made him smile, Erin got the biggest wet kisses, Jen gave great snuggles,Kelley got his biggest smiles, Danielle could actually put him to sleep and Tonia mastered 4am blood draws during chemo week and the list goes on and on. These people became my battle buddies, my friends and my family. The talk of nasty, lazy healthcare workers or doctors who are out for money and in pharmacy pockets make me ENRAGED. It’s a red-head fury kind of upset.

5.Parents NEED to leave the hospital rooms. We all struggle to leave our sick children, but more than any other time, parents need to sleep, eat, and refresh. We live in a small room with toddlers, surly teens, and hysterical newborns 24/7, often feeling guilty for taking a 15 minute walk to do laundry. It is very much like the newborn stage all over again and the patients lash out. One doctor wisely insisted a mother of a teen leave for 24 hours. “Remember when you had a teenage crisis? You wanted to be alone in your room to sort it out or talk to friends. Imagine having your mom there at all times.” I was SO grateful for the family members and friends who took shifts to let me regroup.

6. Ask for help.  A growing trend with cancer and illness survivors is the need for help after treatment. The support, meals and babysitting was essential; we couldn’t do it without help. However, many adults suffer to integrate after treatment. I am like a new mom escaping the house for the first time; I have no idea how to have a real conversation anymore. I have little common ground with non-illness-club folks and it is hard to ease in. Asking what treatment was like is, in a small scale, much like asking a veteran for a war story. It was awful and we are thankful to have survived. We saw the best of the human condition and we cherish life. We bonded with battle buddies and can speak volumes with sighs and facial expressions. We know how to sob and make cancer jokes in the same breath.

Many kids struggle with facing death, survivor’s guilt, being labeled as the ‘cancer kid’, and with reintegrating. Some use childhood cancer as an excuse for decades; others thrive in spite of it. Sadly, many adults who survive cancer are suicidal, severely depressed and isolated. Now that more people are surviving, this issue is receiving additional attention.

As for us, it all seems a bit surreal.  15 days ago we were in a hospital getting surgeries. Now we live in a different state and have only a few remaining boxes to unpack. We have new struggles and new joys– but it will take time to heal.

I feel badly that I haven’t blogged or been in tough during these chaotic weeks, but also very thankful for a media-hiatus. Instead of snapping pictures I am chasing boys, watching them play and memorizing the smell of boy- dirt, sunscreen and sweat. There will be more to come, but for now, hospital advice is excellent for life:  Wear appropriate clothing. Wear appropriate footwear, especially around gross floors. Remember that all people are PEOPLE. not just a service provider. Give yourself some space and let your kids grow without your shadow. Help one another.

It turns out the most important lessons are sometimes pretty simple.

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The Unpreached Mother’s Day Sermon

I don’t envy preachers who deliver Mother’s Day sermons. Armed with only the Bible, second-hand knowledge and personal experience, preachers must address women whose experiences with motherhood are as diverse as each woman. Imagine looking out and trying to bring an encouraging and inspired message to these women.

I am not a pastor, but I beg you to listen. I’ve learned that MANY women avoid church on Mother’s Day and I want you to know why and what the Bible says about it. Women cry out to the Lord on behalf of their children throughout the Bible and we would be wise to listen. The joy of the gospel is the rescue from sin– the true pain of suffering and hopelessness yields an indescribable triumph. Seeing things that were broken and destroyed fully restored is the story of Christ, but also of motherhood.

Perhaps we should begin with the famous Barren Mothers, Hannah, Rachel, Elizabeth… in each account only a few verses capture the searing pain and grief of these women. 1 Samuel’s account is that faithful Hannah, harassed and belittled in her barrenness, was so distressed that she cried aloud at the temple before the Lord. The priest, so unfamiliar with her expression of grief before the Lord, mistook her for a drunk. Thankfully, her pain lasts for several verses, only to show that her faith is rewarded by God who gives her Samuel, the son she prayed for. What a relief that her pain and weeping can be met with an answer of God’s purpose– except for the women who remain barren, of course. There aren’t many verses to address that directly. I always treasure the verse that says she made him an outfit when she visited him yearly. What an emotion-packed verse.

God CARES about the pain he is allowing. It seems counter-intuitive and leaves women who love and serve Jesus asking why God is silent. 15 verses in Psalm, Isaiah, Jeremiah, and Micah all describe the terror of overthrown cities and suffering as “the pangs of a woman in labor”. We all smile and joke about Eve’s curse of increased pain during childbirth, but a God who created the womb and feels a mother’s anguish gave these words to us. I especially enjoy Isaiah 45:10– the verse for all parents weary of answering ‘boy or girl’? “Woe to him who says to a father, ‘What are you begetting?’or to a woman, ‘With what are you in labor?’” Whip that response out in the supermarket, Ladies.

Mentions of barrenness, a baby smothered during sleep, children suddenly dead from fevers or illness, women left destitute from the loss of sons– the Bible is full of mothers who are grieving. Scores of women brought their sick, dying and even dead children to Christ, desperate for healing. Jesus’ own mother was often in distress in the Biblical account, and she was mothering a literally perfect child. Consider also that Mary’s other sons did not believe in Jesus– James is not a follower of Christ until after the resurrection! The mother of rebellious children may connect with that. The women you are preaching to are in or have felt searing pain and indescribably joy. There is nothing like it. Christ even recognizes the difficulty of mothers who are nursing or pregnant when the Last Days come.

This Mother’s Day Sunday, these women need to know their righteousness is not reflected by their wombs. I too have sat in a pew holding a child that was nothing like my expectations. Grateful and frustrated, it is difficult to believe that Jesus would work it out for my good when I felt abandoned and alone– and guilty for it because of the beautiful, struggling child who needed me. I’ve had to grapple with knowing God especially ordained William’s Trisomy 21 for a great purpose and that Jesus was near to me– it didn’t feel that way. It was hard to pray sometimes. I sobbed in the shower for days. I grew weary of trying to help him breathe or forcing food into his mouth with syringes, unaware of the leukemia riddling his body. Before my glimpses of God’s hand on my motherhood, there was great pain mixed with the expectation. I discovered that I truly believe what I believed because of the trials and pain I endured– which is a great treasure of faith. What demonstrated Christ to me was the hundreds of people who bore the burden and loved us with the gospel every day. People in pain need to know they are not alone.

Each Mother’s Day I call Kristen. I text her before the sermon to remind her that she is loved and that it is okay if she leaves the sanctuary. After the sermon I call her to listen and love her with my silence.

Kristen and Michael have 8 children. 5 of then are not longer living. For five years she has gone to church of Mother’s Day and silently let her heart break while listening to scripture about the Proverbs 31 “Ruby Standard”, Jesus’ mother Mary, Eve or maybe even Hannah. One Mother’s Day, only weeks after giving birth to another dead child, she ran out of the pew crying. She was desperate to genuinely cry out before the Lord in her pain without receiving stares or unwise comments, like Hannah. Worse, she now must hold her beautiful 2 year old son and try to explain that a ‘Miracle Baby’ doesn’t replace the flooding pain of those lives lost. Interestingly, someone else in the Bible was not granted the joy of children because of the unique calling from God– Jesus. His entire brood is adopted; through the giving of himself He claimed his children. The very sacrificing of self is what mothering and sanctification is about. We are His children instead- and what a mess we are.

Mothers read the Bible differently. We consider how it would feel to be unable to feed our children, like Elijah’s widow, or to put Moses in a basket, hoping he would live. It’s hard not to be enraged when Lot offers his daughters to be raped or when David didn’t react to the rape of Tamar. Every mother knows the meaning of “Mary pondered these things in her heart.” I submit to you that the women around Jesus were some of his earliest followers to comprehend His word meaning and to serve him well. As He died, Jesus made sure His grieving mother would be cared for by a follower. The Church would do well to follow His example. May we all share in the joy of rebirth, new beginnings, great victories, and triumph over death.

May Sunday be a joyful and triumphant Mother’s Day, for he will wipe our tears and redeem our losses. Lost lives will be restored. Jesus will reign and all of it will make perfect sense. Until then, we love you, Ladies. May we all mother well in our own way.

To Kristen, with Love.