Our family has faced what I consider to be quite a few significant trials in our lives: divorce, unemployment, low income, loss, and much more.
However, none of these trials seem to compare to our most recent trial. When our son, Ethan, was 21 months old, he was diagnosed with High Risk Acute Lymphoblastic Leukemia. In October 2014, after 3 years of fighting his cancer, including 2 relapses, a bone marrow transplant, and 3 experimental treatments, Ethan passed away.
After Ethan’s first relapse, I remember making a conscious decision that I wasn’t going to let this get me. I had seen families fall apart. I had seen people fall apart. We had always tried to keep a positive outlook on life and Ethan’s illness, but things had just gotten harder. Ethan’s prognosis had just taken a nosedive. My husband, Merrill, and I talked about how we were going to stay positive, and look for the good in things. So little by little, day by day, we worked at finding the good. As we sat in the hospital during our long inpatient stays, I took a good, hard look at the nurses, and saw their sacrifices for Ethan and our family. I saw how hard they worked. I saw how much they cared. We had neighbors bringing meals to our family twice a week for over a year so that Merrill didn’t have to worry about cooking for the kids. We saw our families step up and help watch the other kids or offer support where needed. We saw people running to our aid whenever we even alluded to needing something. Don’t get me wrong, we had never been without support, but I found that as I really took the time to focus on the positives, they seemed to illuminate and stand out even more than they had before. All of a sudden, seeing the positives became a way of life. It strengthened us, and gave us hope.
We were recipients of many kind gestures throughout Ethan’s fight with cancer. One of the most significant was the week before he passed away. On October 15, 2014, we were told that there was nothing more they could do for Ethan. He was given anywhere from 3 days to 8 weeks to live. Ethan had been looking forward to the holidays. Halloween was right around the corner, his 5th Birthday was a month away, and he had been talking about Christmas since the previous Christmas. We decided we would celebrate all of these holidays with him for one last time the following week. As always, as our neighbors found out about our plans, they jumped in to help. Plans were made for us to trick or treat early, decorations and a cake for his Birthday were taken care of, and flyers were passed out for neighbors to put up their Christmas lights and come caroling on our “Christmas Eve”. The media found out about our story, and before we knew it, support and love was pouring in from all over the world. Things were made even bigger with a parade on his birthday including Fantasy con characters, policemen, and a local airsoft company who “knighted” Ethan. On Christmas Eve, we had hundreds of people show up on our front lawn. A local radio station played three hours of Christmas music dedicated to Ethan, Santa Claus and Mrs. Claus arrived in a fire truck, and we went for a hay ride to look at the Christmas lights that our neighbors had put up two months early. We celebrated our Christmas day on October 25th, opening the hundreds of presents people had left for us or mailed to us. Three days later, on October 28th, Ethan passed away. Even in the midst of our trial, hope was abundant.
Another experience that we have had over the last few years that we hold near and dear to our hearts is the Anything Can Be project. I was contacted by Jon while Ethan was in the middle of his stay at the hospital for his bone marrow transplant. Both Ethan and our family were excited to see what would come of this. However, we had far underestimated what it would actually mean to us. As we talked to Ethan, he couldn’t decide whether he wanted to be a doctor or Batman when he grew up. Jon said that he could do both! Ethan was able to do his photography session on October 9th – just six days before he was put on hospice. Batman showed up to cheer him on, and showed Ethan how to pose like Batman for his pictures. Ethan was timid and shy. He was afraid of the lights, and being in the spotlight. Everyone was so patient, and made it such a positive experience for Ethan and our entire family. After the lights were down, this experience was all Ethan could talk about for days. For a brief moment, Ethan was able to forget about the hospital. He was able to forget about the tubes, chemo, pokes, blood transfusions, and everything else associated with his cancer, and just hang out with his hero, Batman. We as parents were able to see him fulfill his dream as he played the part of a superhero doctor. Now our picture of Ethan is on the wall so that everyone can see it when they walk into our home. As I look at it every day, it reminds me that Ethan was able to literally fulfill his dream of helping others as he was a light to the world for that one week of holidays when he was in the media spotlight. It reminds me that there is still good in the world. It helps me see that there is still hope.
Hope is a tricky word. We all hope for many things in our lives. Our children may hope for a new toy or a puppy for Christmas. As adults, we may hope for a nice vacation, or some quiet time alone. Hope could even resonate deeper as we hope for a loved one to be healed, or we hope for a positive outcome with their illness. Webster’s Dictionary defines hope as: “The feeling of wanting something to happen and thinking that it could happen.” The hope that we found through our experiences with Ethan is a different kind of hope. This is hope in something greater than ourselves. This is a hope that even in the depth of our challenges – even when we felt like we couldn’t take another step, or especially when we felt like we couldn’t take another step, continued to persevere.
I have come to realize that there is a difference in hoping for something, and hoping in something. Yes, we hoped for Ethan to be healed. We hoped for him to be a normal little boy, and grow into adulthood. But we found hope in the good things in life: family, neighbors, friends, and others throughout the world. Hope in God’s plan for us. We have seen how Ethan changed lives for the better. We have seen how our lives were changed for the better. We have seen that even though life is hard, there is always good to be had. There is always a silver lining in the clouds, even if sometimes we have to search for it.
One of my favorite quotes is, “Every one of us has times when we need to know things will get better. For emotional health and spiritual stamina, everyone needs to be able to look forward to some respite, to something pleasant and renewing and hopeful, whether that blessing be near at hand or still some distance ahead. It is enough just to know we can get there, that however measured or far away, there is the promise of good things to come.” (Jeffrey R. Holland)
I am here to say that there is always something good to be found. There is always hope. Sometimes it isn’t easy to spot. Sometimes we have to look deep and hard to find it, but there is always good. Even if that good it just learning how to be more compassionate to others or being able to empathize better, there is always good. There are people in this world who are looking to make a difference. There are people who are willing to reach out and lighten our load. As our family has dealt with our trials and challenges, we have learned that it doesn’t take much to make a difference. A kind word or a brief hug can go a long way. We have learned that in general, people are good. They have kind, compassionate hearts, and are waiting to help and change lives for the better. They are willing to sacrifice their own needs and desires to ease someone else’s burden. Yes, there is still good in the world. There is still light and love and joy, and because of this, I have hope.