When someone you love dies, you change. Your perspective shifts. You try to re-order life, re-think what you thought before. A profound shift occurs and you are never the same. Perhaps this is true in any huge, catastrophic, earth shattering experience. You are cracked apart and you spend lots of time trying to put the pieces back together.
Holidays are usually precarious times for me. Everyone around me is humming the advertised message of the said holiday. And it never sits right with me. Christmas has always been my favorite time of year (just ask my husband about the amount of decorations in our basement:-). Since Ethan died, it feels different. Life has shifted and so have I. I’m not a scrooge, still love the time of year, it’s just different. I just look at life from a whole new vantage point.
As Easter drew closer I heard people talking about Jesus, his death, them being saved and on and on. As I look on this event now, I wonder if people are so in love with the idea that they are “saved” that they forget the suffering of Jesus. They don't see the message in his suffering. You see I’ve never been able to get passed the suffering of Ethan. I still feel guilt over it. I still cry over it. Tears well up in my eyes as I type these words. I cannot make sense of it. I have watched many, many families and many children suffer. It bewilders me every time. Watching your child suffer goes against every instinct we have as parents. We are hardwired to love, nurture and heal. So suffering we can’t control never makes sense.
In the last several months I’ve started to follow a little boy named Joey. Joey is the grandson of my parents’ dear friends. Joey is two years old and he has GM1, a degenerative illness that progressively destroys nerve cells in the brain and spinal cord. Joey will make his way to Heaven way too soon. I think of this little boy quite often. I think of his parents. Though I deal with families with sick children in my work, there are some situations that just confound me. This is one of them. When we decided to travel to Cleveland for Easter, I knew I had to meet Joey. Though I had never met his mom, I messaged her and asked her if we might meet up, giving her a total out in case my request felt intrusive. She kindly and openly said “yes”.
And so Erik and I got in the car to go and meet Joey, his big brother David, his mom Sara, and his dad Sam. They were so welcoming and just the most lovely people. It felt like a Divine appointment. I so strongly trust my intuition now and I just felt this meeting was meant to be. Holding Joey, a sweet boy adorned with beautiful blonde hair and gentle clear blue eyes was an honor. Joey is no longer able to hold up his head or his body. He is sick, his time is limited. When it came time to leave, it was hard to say good bye to him. I knew it would likely be the first and last time I’d see him. As I stroked his arm and spoke to him, he let out a little smile. Something his mom says she rarely sees any more. This expression was a beautiful gift. I felt like our souls communicated with each other. Like he knew I had a Heaven boy too. As we put on our coats, his 4 year old brother David said “Joey and I are brothers”. It was a profound statement. It was beautiful and it made my heart sink.
I got in the car and I cried. Because it’s unfair and it’s just not right. Because I know the pain this family will experience, the pain they are experiencing watching their precious son die. I cried for David who, like my Blake, will know what its like to have a brother that dies. Something Sara said lingered with me for days…she said something like “I can’t make sense of the suffering”. Perhaps it lingered because I too have struggled with my son’s suffering. I have struggled to make sense of it.
Sitting with Joey felt comfortable. Talking about his illness, his death, questions about God and life all felt like home to me. I realized that I could sit with Joey and his parents in their suffering, because I learned to sit with Ethan in his. This is a gift of Ethan. This day, Ethan's difficult course made a bit of sense to me. Ethan’s suffering, his death, facing the hard questions allowed me to sit with and embrace Joey.
The cross is a message of solidarity with the suffering. It's a message from Jesus that we are not alone in our suffering. That we are seen, and held. Even when it makes no earthly sense. This cross is a call to us to stand with the broken hearted. To come alongside them and just be with them. To just show up.
Jesus is always on the side of suffering. He always heads right for the pain. It’s the place he chose to sit time and again. His suffering is a message, a reminder to us that we are not alone in ours. For a very, very long time after Ethan died I questioned how a loving God could allow Ethan to endure what he did. I didn’t know if I could believe in a God that allowed for the suffering I witnessed.
Sitting with Joey and his family was a soul shifting experience. In that moment some of Ethan's suffering had some purpose. This profound experience brought healing and clarity that I had yet to experience. Suffering is all around us. This world is a totally broken place. And yet, we are called to dig in, to burrow into the hurting places and spread love. If we can canvas the deep hurt and question with the salve of love, of understanding, of solidarity, we can bring some kind of healing to ourselves and others. I know now that we were held, that Ethan was held, the entire time. That actually, God never left. Never left.
Experiencing suffering allows us to love others better. I don’t have answers. I can’t say there is some reason for Joey’s suffering or his pain. I can’t say I’m okay with any of it. Because honestly, I’m not. I love Ethan and I would sit with him again and again through all those hard days if I could. The love I have for him allows me to see and love others as they face life’s hard. Not only does it allow me to see other’s pain, I feel called to get right in the middle of it with them. And that, my friends, IS a gift. It’s a humbling, hard and beautiful gift. And guess what? You are called too. To sit with and to love those who are suffering.
Thank you dear Joey, for profoundly touching me. Your life is a gift. YOU are a gift. You are a teacher. I know that your spirit, your soul will live. For all of eternity your soul will be interconnected with that of your mom’s, dad’s and David’s. When you no longer need your bodysuit and you are free of your illness, we will love your parents your brother, and your grandparents. You are and always will be a very important, irreplaceable member of your family, of your community. Because of you, your family will love others better, and bigger and wider. Love will win, it always does.