Friday, August 15, 2014

The Unimaginable

I have been trying to organize my thoughts for almost a week now. I am not sure how to communicate everything, but here is my attempt.

Last week began somewhat normally, we were busy preparing to send both kids to school (Kindergarten for Juliet and Preschool for Will) and busy preparing for two golf/dinner fundraisers for Will-Cure.  Wednesday morning I was working on some emails to potential sponsors for one of the events. I had some general language describing MTM as a debilitating, life threatening disease. I asked Dan to review the email and we began a discussion that it is more than just "life threatening" it is "life ending" and how to best communicate the seriousness of MTM. We revised my emails to include the statistics:  Only 2 out of 10 live past the first year of life and only 1% survive beyond the age of ten. Later that afternoon I received a call from Dan.  He quickly asked me to step away from the kids and then told me he just found out that Louie Wilhelm had passed away. Louie, like William had MTM.  He was 3 years old. I was heartbroken to hear such devastating news. The MTM community loses too many children and every time it is crushing.

We had gotten to know Louie and his family last year at the MTM-CNM family conference in Minneapolis. The Wilhelm family is from central Illinois. They also have a daughter, Emily, who is the same age as Juliet. The girls were instant friends. I remember thinking how glad I was that Juliet will grow up knowing another big sister of an MTM brother and William will grow up knowing Louie. The Wilhelms then attended the Will-Cure golf outing last fall. I was so excited to have another child affect by MTM at the event. I thought it would be good for our supporters to meet another child and family affected by this disease.  Over the course of the year, Louie's mother, Lindsey, shared photos of the kids on facebook.  I remember thinking that Louie looked great in all the pictures and videos. I could really see some gain in strength. I especially thought he looked handsome in the photos showing off his new glasses. He was doing good.

Last Saturday, I drove to Dallas City, IL to attend Louie's funeral. I walked in to see a small light blue casket and his mother, my friend, hugging friends and relatives. I completely lost all composure. I walked up to her, hugged her and started crying uncontrollably. I had no words, only tears.

In July of 2012 we almost lost William.  He coded, stopped breathing and his heart stopped, shortly after being extubated after a surgery. It is a day that I have not been able to erase from my memory. It was terrifying to watch the PICU staff of doctors and nurses bagging him and performing chest compressions, to see the doctor that I remembered from an ER visit and the chaplain that I had met when William was in the NICU running down the hallway to William's room. I remember saying a small prayer asking God to please not to take him yet, that I was not ready even though I knew I would never be ready. At that moment a nurse grabbed my hand and walked me into the hall and asked if she could help me make some phone calls. Luckily they were able to save William that day. William had just turned one.

I tell this story because I think every MTM family has a story of a terrifying serious medical event. Some families have several. And too many that end more terrifying, devastating and crushing than mine.

Louie's family will forever be in my thoughts and prayers. The loss of a child is unimaginable. Even though MTM families to some degree can imagine the depth of the pain, it is still unimaginable. I only know how to pray for comfort, strength and peace for the families, my friends, that need it most.


  1. Thank you for having the courage to write about how Louie's death has impacted you and your family. I believe, with all my heart, that the fear and love and grief experienced each day by the MTM community will fuel a cure. Never, ever give up.

  2. God Bless all of you special families.