WHAT JUST HAPPENED?
I’m still processing the events of the last three weeks. Still trying to find meaning in it all. Still trying to see the beauty in ashes, because I’ve learned it always exists. The short of what happened with Anabelle a few weeks ago is that after a seemingly normal day, I started to notice a few symptoms that weren’t common for her; pale, purplish lips, gagging, lethargic. She didn’t have a fever, but I knew something wasn’t right, so I called Joey to come home from work so we could take her to the ER. By the time he got home, her head was bobbing. Joey called 911, and as we waited for the ambulance, we struggled to keep her awake and responsive. She perked up a little in the ambulance, but the medic knew things weren’t right either, so he called for the helicopter. It was the right call. A half hour after we arrived in Pittsburgh, doctors were rushing the room, her stats were falling, and they were giving her oxygen and pushing fluids directly into her central line as she was in full blown septic shock. That event lead to a week long stay in ICU, which lead to her line being damaged, which lead to surgery for a new line placement. Replacing a line in itself is a major event for her as she has only 6 veins in her body that tolerate TPN, so we have to do everything we can to limit the times lines are pulled and placed in order to protect her veins. I was sickened by the thought that we entered the hospital with a working line and ended up needing a new one for reasons completely unrelated to the line infection that sent her in to septic shock. This all occurred the first week I went back to work after being on leave with her for a year; a very healthy year for that matter. A few days after we brought her home, her respiratory rate was very high and we had to take her back to the ER to be evaluated. That drive down 28 was one of those dark, “Are we ever getting out of this pit” kind of car rides. Thankfully, we were able to go home the same day. The line infection lead to 9 days at home on IV antibiotics which added three IV hookups and disconnects to our already crazy medical care schedule. Joey would do morning hookup, I would rush home after work for her afternoon meds. He would do evening TPN, and we would take turns doing night time IV meds. He took the brunt of it as we both know I go into crazy woman mode without sleep. He can’t go without food and I can’t go without sleep. I’m glad God made us opposites in that sense because one can tag in when the other is at his or her breaking point. I won’t neglect to mention the help we had during this difficult season-sympathetic employers, friends who brought us food to the hospital, parents who mowed our grass and did our laundry, coworkers who picked up our slack, family who took care of Jonah, nurses who went above and beyond, and church family who made us delicious dinners once we got home.
The most alarming part of all of this was what we learned from a meeting with the doctors from the Infectious Disease team. ID doctors specialize in infections and bacteria. We
had never seen them before so of course I had my list of questions ready when they came to meet with us. I wanted to know what clues they could gather from the cultures they had taken. What caused this event that could have very well taken my baby’s life in a matter of hours? There have been events over the last year where Joey and I knew Belle’s line was compromised. A broken cap, a leaky line, one of us making a mistake. But for the life us, we could not think of anything over the last few weeks that would have contaminated her line and caused an infection. It turns out, there wasn’t.
TRANSLOCATION. I truly hope no one reading this ever has to hear a doctor use the word “translocation” when discussing your child. It’s a horrible and terrifying term in the most awful sense of the word.
The ID doctors told us the multiple bacteria in Belle’s line were bacteria they and we (and you!) commonly carry in our guts. The only difference between Belle and us is that we don’t have a permanent piece of plastic in our bodies and unfortunately, bacteria loves plastic. The bacteria that sent Belle into septic shock actually came from within her by translocating from her gut to her line to her bloodstream. They praised us and our line care saying they were shocked that she was a year old and they hadn’t even met her yet. They said we were doing a “great job” and we should be “proud.” And all the while they were talking, I stood there dazed, speechless, horrified, and I began to cry. Because I could read between the line of their praises to the reality of what they were saying: You didn’t cause this. It wasn’t your fault. It could happen again. And again. And again. And there’s nothing you can do about it.
I HAVE A PROBLEM
We brought Belle home the Sunday evening before Labor Day. I was home alone with both kids on Labor Day and the stars aligned enough for them to both nap at the same time after an exhausting week. I decided to take a few moments to myself so I headed out to the deck with my music and Bible. For a long time I just sat. I think it was the most beautiful day of the entire summer with the perfect mix of sun and breeze. I asked God what in the world I was supposed to do now. I would have to stand before a classroom of students the next day, wearing my happy first day of school face, meanwhile we’d come dangerously close to losing our daughter for the second time in a year only a few days earlier. Had I heard him wrong about going back to work? Was this a sign? Was I making a huge mistake? How in the world was I suppose to just get on with it after the trauma we had experienced the last week? I wondered if I’d be able to hold it together long enough to take roll, let alone actually teach an entire lesson.
In frustration, I turned on some praise music and the first song that played was “Oh My Soul” by Casting Crowns. It has been a go to song for me over the last year. I knew the passage it was based upon was a familiar one, but I decided to turn to it.
“Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.”Psalm 43:5 (NIV)
The bridge part of the song based on that passage repeats the phrase:
“You can lay it down.”
As I meditated on that for awhile, it became very clear to me that I had (have?) a serious problem. See, we can make an idol out of anything, and for the past year, I’ve let control rule over my life specifically in our situation with our daughter. I may have said (and even thought) I was putting my trust in God, but all it really took was one horrible word-translocation– to show me I’ve actually been putting my trust in someone else-MYSELF. If I just micromanage every aspect of her care, every minute of every day, she will be okay. If we just do every step perfectly for every hook up, and use THREE alcohol wipes for 15 seconds instead of ONE for thirty, she won’t get an infection. If I do all the research, and ask all the right questions, and train all the nurses, and write all the letters, and make all the calls, and DO EVERYTHING RIGHT, she will be okay. And it only took one world shaking event to rock everything I had come to believe about caring for Belle over the last year. I can momsohard until I’m blue in the face, but at the end of the day, I’M.NOT.IN.CONTROL. of my daughter’s destiny. God is.
Your child might not be in the same fragile situation as Belle, but do you let your kid get on a bus and go to school everyday? Sleep in his or her own bed at night? Eat hard candy? Ride in a car? Get a bath or swim in a pool? If so, then guess what. YOU aren’t in control of your child’s destiny either.
FREEDOM IN SURRENDER
For so long I didn’t think I had any other option. I had to be in control. The only other option is losing control and whatever happens. I CAN NOT lose control of my child, or so I thought. But in that moment, as the words in Psalm 43:5 sank into my heart, for the first time in all of this, I finally realized, I do have another choice, one that doesn’t involve losing control, but rather laying it down voluntarily. Lay it down. Lay her down. Put my hope in God. Praise Him. I asked God how I was going to do this. People literally say to me everyday (and I can assure you pretty much every other sick kid mom), “I don’t know how you’re doing it.” Going back to work after Belle’s sepsis was the first time I literally said to God, “I REALLY don’t know how I’m going to do it.” But he showed up and he showed me how. “Lay it down. Lay her down. Put your hope in ME. Praise ME. and I will do it for you.”
Now I’m not suggesting that us sick kid mamas should just raise the white flag when it comes to caring for our children. Joey and I will continue to do every best practice care we know, advocate for Anabelle, and keep strict tabs on all of her care. However, I truly have found freedom in making a conscious decision to apply this verse daily. In the two situations where Belle’s life has been on the line over the last year, myself along with hundreds of others were on their knees praying to GOD to save her. While people may have prayed FOR Joey and I, no one was praying TO Joey and I because we all know, Joey and I were helpless to save her. I have learned that I need to be mindful of that reality on a daily basis, in both sickness AND in health, and not just when her situation becomes dire. So here’s what I’ve begun to do. Each day before I leave her, I stand beside her crib (or outside her door) and pray three things over her (and my healthy son by the way) in accordance with Psalm 43:5:
Lord, I lay her life down before you. I acknowledge that even in my best efforts, I am not the one in control of her life and her destiny.
Lord, I put my hope in you, knowing that you are truly the only one who has control over what will or will not happen to my baby today.
Lord, I praise you for…(insert whatever I can think of to give Him praise for that day)
And then I go to work. And I teach. I write lesson plans and enter grades and copy papers. And occasionally, I log in to our cameras to see how she is doing. I smile at my coworkers and enjoy their friendships and the constant love they show me. I laugh with my students and set them straight when they need it, and show them compassion when they don’t deserve it. And I taught a few dang good lessons on plot structure and conflict this week if I do say so myself. And occasionally I have to spend my lunch talking to doctors or ordering medical supplies. But mostly, I just teach. And I love it. After school, I pick up my son and snuggle him and we talk about his day. In the evenings, we often rush to doctor’s appointments. write notes to our nurses, and hook up TPN, while we pack lunches and fill out daycare forms, and eat dinner. It is a lot to balance, but it’s our life and with God’s help and the help of our family and community, we’re doing it.
I mess up a lot. I created an idol out of thinking I could control what happened with Belle based upon how I cared for her, and I put my trust in myself and Joey rather than in God. But beauty always comes from ashes and I’ve learned there is freedom in surrendering to what was always true from the beginning, whether I wanted to acknowledge it or not. Even in my best efforts to care for Anabelle, I’m not in control. And the best news is that the God who created her IS in control, and He wants me to be intentional about recognizing that reality daily.
Because it’s when I do, that HE shines the brightest.
“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9