Of all the things I loved about parenthood, one of the things I loved most was to watch my young children sleep. I remember vividly this hot August night as little Mitch dozed off. My heart melted as I saw him with his ice-cold sippy cup, Spiderman Jammies and his two favorite blankets. Softly he slept after getting a bundle of hugs and kisses from his mom and dad. He knew he was loved.
Though we were exhausted at the end of the day, parenthood never felt so rewarding. And though we were poor as church mice, life never seemed so abundant. A testament that people, not things, bring us some of life's greatest joys.
As I stared at my son, the humanist in me would marvel and say, “Wow, I helped make that little person.” The young parent in me said, “I have no idea what I’m doing. I’m afraid.” Yet the deepest part of me said, “I have never known a love such as this.”
Though my pockets were empty, my cup was overflowing.
A few years ago we took our kids to feed some ducks at a local pond. At one point, as the sun was setting, Mitch pulled his iPod out of his little pocket and took this photo. Later that night, after he was tucked in bed, he sent it to me because Mitch wanted me to have a copy of the beautiful image he captured. The moment I received this photo I ran to his room to tell him I was so proud of him and that I loved his photo very much. Mitch smiled as if he were being tucked in a second time. I’ve learned from my children that tucking in has less to do with positioning blankets and more to do with letting them know they’re safe and loved. So, I kissed Mitch goodnight a second time and told him I loved him.
I treasured this photo then, but I treasure it even more today. I loved seeing the world through his eyes. What Mitch didn’t know was I took a photo of him taking this photo – which to me, is even more beautiful than any sunset. I don’t think he had any idea what a light to my heart and soul he was, and continues to be.
I haven’t mustered the courage to go through Mitchell’s iPod yet. I know it will be a tender and emotional experience because locked within that little device are movies he made with his friends, photos he took, elaborate Minecraft creations, playlists, audio recordings and much more. One day I will. One day.
This image from my sweet boy reminds me that as grief subsides the sun will rise, but it will also set. As assuredly as the sun will rise tomorrow, I will experience peace and joy. But grief will return, too.
I just received a private message from someone who just discovered Mitchell’s Journey and began to describe her own grief journey. She lost her father to ALS (which, when it comes to symptoms and fatality, is fairly similar DMD) and shared how heartbroken she was to see him go. After his passing she was strong for her family but never had an opportunity to truly grieve. She said that when she read my essay, “OKAY, BUT NOT OKAY … AND THAT’S OKAY” the floodgates opened and said she “never cried so hard in [her] life” and that it felt good to release her sadness. I had tears of gratitude for her healing.
At least for me, I have discovered some of the purging and cleansing effects of deep grief. Any more, I’m beginning to see grief as a sweet release. Though it is painful and hard to bear, it is also necessary. The irony of grief is that when we allow ourselves to hurt we also allow ourselves to heal. I don’t know much … but one thing I do know is healing hurts and hurting heals.
To lose a child is like being an emotional amputee. Yes, there can be healing around the site of the wound … but you will always want, reach and long for that which was lost. Like an amputee, you will never be the same … ever adapting to your new, compromised reality.
I was reminded of my emotional amputation yesterday. I was in a public setting when I saw some sweet children about the age of Mitch when he passed away. Suddenly I felt the waves of grief overcome me. I kept my head down so as to not draw attention … but I let the tears flow. Like a summer storm, it was strong but it passed quickly and I was on my way.
There isn’t a day that goes by that I don’t think of my son a thousand times. I’m grateful that my heart only breaks 500 times … the other 500 times are warm and peaceful. That’s progress and I can live with that.
As assuredly as the sun will rise ... with feelings of hope and peace, it will also set ... where grief will visit and my heart reset.
Last September I received a message from someone out of San Diego who was following Mitchell’s Journey. She gave me permission to share an excerpt from her message. She wrote:
“I discovered Mitchell's Journey just a few weeks before Mitchell passed away and I have been following closely ever since. I think initially I followed in awe, moved so deeply by the bravery of one small boy and the power of a family's love. I thought to myself over and over again that your family must be woven of a fabric much stronger than my own constitution for I couldn't imagine walking a moment, much less a day, in your shoes. And yet, your family presses on and continues the journey with such grace. A true example for us all.
Overtime my following of Mitchell's Journey changed from being that of a passive spectator to that of someone who became inspired to take a journey of my own. To live life differently. To love more deeply and to be more present in every moment. To reach out to those in need and to allow myself to accept help when I need it and when it is offered to me.”
Caryn Glass, this kind, compassionate woman was teaching an intensive for a ballet studio and was to choreograph a piece for their end-of-summer showcase. As she worked with these young dancers, she did what all true artists do … dig deep. She inspired conversation among these teenagers to talk about ways they could be more present each day, find gratitude for the gifts of life and to share some of their favorite moments. They discussed moments they wished they could experience again and others they wish they could do over. At some point during this exploration with her students, this kind dance instructor shared a little about Mitchell’s Journey and what it meant to her and how it has affected her life.
The following video is her choreography dedicated to little Mitchell and anyone who (in Caryn’s words) “inspires us to be the best versions of ourselves, to be grateful for our gifts, to be kind to one another and to simply be glad we're alive. For nothing else matters.”
I still cry every time I read her beautiful letter.
Her dance company, [the] movement initiative, wanted to help raise awareness for DMD by producing this video of their dance: vimeo.com/118058086
I’m not sure which was more beautiful; Caryn’s gesture of love and remembrance, the choreography … or the fact she took the time to inspire her students to find purpose and meaning in their own lives. Each was beautiful, but the combination of what she did even more so. Though I am touched by Caryn’s remembrance of my fallen son, I am even more touched how she inspired tomorrow’s generation to connect to things that matter most to them. Each of these young dancers walked away with something different – a meaning unique to them and their own life experience. At the end of the day, that is all I hope for Mitchell’s Journey.
Caryn Glass, you are simply remarkable. These young dancers were not only taught how move but how to be moved. You inspired them. You encouraged them to discover ways they might truly live. This world is blessed with you in it.
This is a link to her page: www.facebook.com/pages/the-movement-initiative/113639455358007?sk=timeline
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instagram.com/mitchells_journey
As Natalie lifted Mitch from the floor, she looked intensely at the Milrinone pump to ensure it was still giving him the life-lengthening drug. Mitch, having lost his balance, leaned back only to find his loving mother's arm to keep him safe.
Unaware the mortal trouble he faced, Mitch looked down at his furry friends and wished he could roll around with them like they did with each other. This sweet little boy had attached a small stuffed animal to a string of yarn so he could dangle it from a chair. His back muscles were too weak to bend over, were he to try to pick the toy up from the ground. Little Mitch discovered other ways to squeeze a little more life out of life.
If children only knew what they do for parents ... sometimes I wonder who really raises who. Though we teach our kids how to walk and talk, they teach us about what really matters in life. It is something of a paradox that it takes a child to show us how to grow up.