The Week We Celebrated Halloween, Christmas and My Son’s Birthday

Three and a half years ago, my son, Ethan, was diagnosed at the age of 21 months with high risk acute lymphoblastic leukemia (ALL). As you can imagine, our world stopped. We had just found out three days earlier that I was pregnant with our sixth baby. Life as we knew it was to become one of hospitals, pokes, spinal taps, chemo, blood transfusions and on and on and on.

Related: What the ICU Doctor Told Me That Changed My Life Forever

Our sweet little boy had to go through more than I could ever imagine, but he did so with a smile on his face. He endured two relapses, a bone marrow transplant and three experimental treatments when “normal” protocol ran out. Through all of this, Ethan and our family were on the receiving end of hundreds of acts of kindness. We benefited from meals (people brought over at least 100), financial donations, yard work, house work, cards, phone calls, gifts, visitors and many other things. We felt truly blessed. However, we had yet to see how generous people could be. After three months of trying experimental treatments in Seattle (our family lives in Utah), we found out our Ethan had run out of options. He was put on hospice and given only a few weeks to live.

Related: When Your Medically Complex Child Is Never Really ‘Out of the Woods’

It was October, and Ethan was looking forward to the holidays and his birthday in November. My husband and I decided to give those to him and to our family one last time — all in the same week.

On October 21st, we set out for trick-or-treating. A dear friend took flyers around to our neighbors asking them to be prepared for our family. A local news station found out and came to cover our supportive neighbors. A local charity made up of professional mascots came to make the rounds with us. It was an amazing night.

image
image

Related: The 3 Words I Want Every Single Hospital Employee to Hear

On October 22nd, we stripped our house of Halloween decorations and put up our Christmas tree along with the rest of our Christmas decorations.

On October 23rd, we were to celebrate his birthday. By this point, news of our week-long celebrations had hit the media and spread its way across the world. We began receiving packages and cards from across the United States and from other countries. People throughout our community banned together for our sweet boy. We had a parade with many participating — local police, Fantasy Con characters, a local Airsoft company and so many others. He was knighted, got to sit on a police motorcycle and met some of his favorite superheroes! The day also included custom-made cake and many presents and cards.

Related: To the Stranger Who Cried When He Held My Infant Daughter

image

October 24th was our “Christmas Eve.” We were greeted that evening by hundreds of carolers on our front lawn, complete with a live nativity scene. Santa Claus and Mrs Claus arrived in a fire truck and took our family for a ride. After a private moment with Santa Claus, we went on a wagon ride around our neighborhood to see Christmas lights that our neighbors had put up early. We came home to literally hundreds of presents scattered throughout our home.

image

Related: To the Typical Siblings of a Brother or Sister With a Disability

On October 25th, we celebrated a private Christmas as a family. Soon after gifts were opened, Ethan got very sick. He passed away three days later.

Some would say that this was an incredible act of kindness for an incredible little boy, which it was. However, it was more than that. Those are memories that will never be replaced. Memories that I cling to six months later.

That week restored my faith in humanity. It helped me see how many good people there are throughout the world.

For one week, the world stopped (at least it seemed like it did to us) to honor one special boy in his last moments on earth. That is incredible. That is love.

Related: 31 Truths Parents of Children With Special Needs Wish Others Understood

image
image

By Jennifer VanLeuven for The Mighty