August 7, 2015


Maintenance Day 121: One Year Ago…

One year ago today was the phone call that changed our lives. One year ago today, I rushed home from work and walked into a house full of chaos. I pulled Brock into our bedroom and told him that we had to bring Scarlett to the ER at Children’s. I told him that I was scared and that I loved him and was grateful for him. We stood in the middle of our room and hugged for about five minutes because we knew that as soon as we let go and walked back out the door, we had to face reality.

One year ago today, I called my sister. I had no words to tell her what was happening. She listened to me sob and hyperventilate and took control. She dropped everything to help as much as she could.

One year ago today, I called my parents. I couldn’t tell my mom so I asked for my dad. I had to wait for a while because he was cutting the grass and I remember trying to come up with what to say. I told my dad that Scarlett was sick and we needed them. My parents and sister left their houses with the lawnmower still in the yard. No questions. For the next week, they did what I needed the most. They took care of the most precious and wonderful babies. They made them feel safe when they were scared and loved when they were alone. My aunts all came and cleaned and disinfected everything in our house. My aunt even flew home from Florida to support my mom. I saw a new vulnerability in my parents, especially my dad who has always been so close to Scarlett.

One year ago today, Brock called his mom. She came to Milwaukee in the middle of the night and to the hospital at 6am. She and her friend sat in the care team meetings with us and took extensive notes. They listened when we needed them to listen, hugged when we needed hugs, and stood back when we needed space.

One year ago today, we walked through the doors of Children’s Hospital of Wisconsin and opened our eyes and hearts to a whole new world. We sat in an isolation room in the ER for about eight hours. Doctors and nurses came in. Students assessed her. I took mental notes. An IV was started with a lot of complications. The wrong medication was given. She was poked and prodded, never went to sleep, referred to as “the patient”. Despite all of that, we were so grateful to be there because we would have an answer. It had been six long weeks of knowing that something was wrong but not knowing what it was. We were confident that that would come to an end.

While in the ER, I tried to absorb as much information as I could. I stood by the glass door quite a bit trying to hear the students discussing Scarlett with the doctors. Every time one of them came in, they seemed to focus on her liver. They collected a lot of blood and I requested printed results for everything. But no matter how hard I tried to focus, I couldn’t be a pharmacist that night. It was my job that night to be a mom.

One year ago tomorrow, we were brought upstairs to the pediatric oncology unit. I cradled my tiny baby in my arms and couldn’t stop hugging her. For the next hour Brock and Scarlett and I all laid in the hospital bed. The doctor came in and spoke the words that we had been expecting. “Scarlett has cancer.” Although it was expected, it hit us hard. She had just turned two. What would her life be like?

One year ago tomorrow we met with the oncology team. We were so naïve. We were naive as to the toll it would take on this tiny baby and how it would change our lives. Scarlett has proven to us that it is not size that makes you strong but your will. And we have learned to slow down. Each day is a gift, each moment precious and memories are just as meaningful in the most ordinary circumstances as they are in the extraordinary.

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