Remembering Ashton

By Melody Arabo

Ashton was a very happy, healthy, and vibrant 6-year-old boy. He loved to dance and sing and make everyone laugh. His favorite thing to do was be silly with his twin brother, Adam, and he idolized his older sister, Emily. He gave the BEST hugs and kisses and his smile would instantly light up a room. We should have known he was too special to stay on earth for too long.

In January of 2016, Ashton passed away after having complications from the flu, specifically, influenza induced encephalopathy. Influenza induced encephalopathy, according to the U.S. National Library of Medicine, “is an acute non-inflammatory encephalopathy that presents with seizures and coma after influenza symptoms start. It is a severe disorder with a fatality of around 30 percent.”

There is no explanation of why this occurs and it happens so rarely in the United States. While both of our twins got the flu at the same time (within the same hour), it impacted them very differently. Adam made a full recovery after one week and Ashton’s condition continued to worsen. All the doctors and specialists at Children’s Hospital were baffled as to how a simple flu virus would impact identical twins in such drastically different ways. No one ever could have imagined it would end the way it did.

Every single part of his death has been difficult, but holidays are really hard on me and my husband, Elliott. It is difficult to feel the joy I used to feel, even to the point where I don’t like to say happy Mother’s Day or merry Christmas. Those days are not “happy” or “merry” anymore, and it takes all my energy to put on a smile and make them good experiences for our other kids. As you can imagine, birthdays for grieving parents are almost unbearable. In our case, we lost one half of a perfect pair, so on every birthday, we have to navigate the delicate balance of celebrating one twin and mourning the other. Watching Adam play and learn and grow up without Ashton is especially heartbreaking. It is also a blessing, though, that we are fortunate to see Ashton through Adam’s wonderful life and know what he may have looked like and been like as he got older.

The most comforting aspect of this experience has been the love and support of our family, friends, and even thousands of strangers. Our community really came together while Ashton was in the hospital and has continued to rally behind us long after he passed. We have been so overwhelmed and touched by all the prayers and messages and kind gestures, which have helped us stay strong in our faith. We received letters from people saying that Ashton’s journey and our unwavering faith throughout everything we endured brought them back to God. We have learned to focus on the positive and that so much good can come even from tragedy.

As a way to give back to the community, we created Ashton’s Miracle Foundation, a non-profit organization dedicated to doing acts of kindness in his memory. This has been a big piece of our healing process because it truly helps us to be able to help others, and it keeps Ashton’s spirit alive each time someone pays it forward. The year he passed, Keith Elementary school’s PTA and 5th grade class donated a Buddy Bench for the playground as their graduation gift to our school. A Buddy Bench is a place where kids can sit if they feel lonely and other students can extend an invitation to join their recess activities. Ashton’s charm and kind, loving spirit had a magical way of bringing people together, and we know he must be so proud that bringing joy to others is the legacy he left behind.

If someone you know has experienced a loss, it is important to recognize that their grief is inconsistent and unpredictable. There are days where I feel strong and “normal” and then something will trigger painful emotions that are hard to recover from. Sometimes I feel like talking or going to an event or socializing, and other times, the thought of those things cause so much anxiety. Make sure they feel included in plans, but don’t be offended if they don’t attend. Offer advice, but acknowledge that you might not fully understand the depth of their heartache. Don’t let your relationship deteriorate because you are not sure how to approach things. People are always afraid to say or do the wrong things, but I try to keep in mind that everyone has good intentions and would never want to add to our pain. Most importantly, be patient. Your loved ones will eventually adjust to the new normal that their lives will have to be.

My family was not the first to experience tragedy, and sadly, I know we will not be the last. Those who came before us helped me through my grief and I will always be there for anyone that comes after us. I am so grateful for the friendships and bonds I have developed with the other moms in our community that have lost children. No one else could ever understand what this journey is like, and we are there for each other every step of the way. It is certainly a club no one would ever want to be a part of, but one that you greatly appreciate if you are.

I want others to know that there is nothing easy about grief, but you cannot allow it to consume you. And although time does not heal all wounds, loss certainly gives you a new perspective on life.

I am no longer afraid of death. I don’t stress nearly as much about little things. I have an even deeper love and respect for my husband, who is my biggest source of strength - aside from God and Ashton. I appreciate every minute with my kids, even when they drive me crazy. My relationships with close family and friends are stronger than ever. I value every blessing and will never take anything in life for granted.

Mostly, I want others to have hope that they will find joy again. While life will never be the same, it can be good, if you let it.