It's been a year(s) - Living The Good News between Shrove Tuesday and Ash Wednesday

January 5, 2021, was the first day of a very long road. To be honest, it is the most memorable day of a road that began several months before as we left the familiarity of Holland, Michigan, and moved to South Carolina. 

Madeline received her first of three brain surgeries at Greenville’s children’s hospital on that day. What was a relatively minor brain surgery (if there is ever anything minor related to the brain), turned into a nine day stay with a feeding tube, and a young girl was now worse off than when she first arrived. The pain of the first surgery turned into a second a few months later. The second was better than the first, but headaches, stomach aches, and intense pain clouded any signs of success. 

 

One year ago, today (February 13, 2023), Madeline entered the incredible children’s hospital in Salt Lake City, Utah. We walked the unfamiliar territory of the new hospital in a new city with fear and trepidation. The neurosurgeon is one of the best in the world, as our Michigan-based neurosurgeon reminded us today. But the cliche, “third times a charm” felt less hopeful than “three strikes and you are out.” Cliches rarely help the situation.

 

When she left us for the surgical unit, Lindsay and I could barely talk, let alone breathe. As I write the story, even now, my heart is suffocating into my throat, and the sensations of that day feel all too close. But she did it, and she emerged from the PACU (pediatric recovery) feisty, playful, and mostly coherent. The doctor was pleased but also noted the severity of the surgery. Lindsay and I still have difficulty talking about those days.

But today is the one-year anniversary, and yesterday we met with Dr. Casey Madura, our Michigan-based neurosurgeon for a check-up and MRI update. Dr. Madura never seems in a rush, he deals in facts, and he manages to keep his emotional radar geared toward the patient. We cannot say enough about him and his presence with Madeline; this has helped in the relocation back to Michigan.

There is good news (I probably should have started with that line), but not all is resolved. The good news is that her central sleep apnea has all but disappeared; her swallow study resulted in freedom to drink whatever liquids she desires - no thickener needed; and she doesn’t need additional surgeries. He cleared us for one year and celebrated that the diagnostic tests demonstrate that the surgery is successful.

 

The difficult news is that she still has headaches, except when she’s playing tennis. Dr. Madura made it clear; “headaches are part of being human.” He said something like, “Just because you went through all of this - and you have

been through too much - you don’t get to bypass headaches; you deserve to bypass them, but you won’t.” He encouraged her and offered her multiple ways to maintain health, positivity, and healing, but he also said, “I’ve said a lot to you today, and I’ve put the work back on you.” He used big words and accessible words, and he wanted her to know that she is empowered to live her life. 

 

Amidst explaining and encouraging, we (doc and mom and dad) could sense that she wanted a quick fix, possibly with another surgery. But Dr. Madura made it clear that further surgeries have more risks than rewards, and he (and her parents) are not willing to take that risk. He cleared her for all activities (including chasing boys and bull riding - see earlier posts). We (Lindsay and I) breathed a sigh of relief that the surgery is proving positive, but we also lament that she experiences chronic pain. 

Today

is Shrove Tuesday, or Fat Tuesday, as some say. It is the day before Lent. We won’t repent; we will celebrate. We will celebrate that her tests came back hopeful. We will celebrate all the friends we made along the way. We will celebrate that Madeline is social and engaged with wonderful friends. We will celebrate that she is playing tennis and recently went downhill skiing. We will celebrate that she is mouthy, feisty, playful, kind, grateful, and so many things. We will eat Swedish Semlor and stuff our faces with almond paste and whip cream. We will delight for her life, for the life of Micah and Maggie, and for our marriage. We left the familiar in 2021, and we have been on a ride ever since. We will celebrate that we made it; that we have returned to The Mitten and regained good friendships and good work.

Then it is Ash Wednesday. And we will lament. From dust we came and to dust we will return. These clay pots are beautifully and wonderfully made, but they are fragile. We will receive the ashes at our wonderful church, and we will remember our mortality and grieve that our bodies and hearts and minds do not always work the way we might like. We will remember our fragile state and hold the grief of our trials and our pain and our sadness. We will trust that God holds us the same.