I’ll never forget the glow of the evening sun reflecting warmly from my snow-covered windowsill. By this time, we knew our son was at risk of sudden death and that each moment was more precious than the one before. Time was running short and we were very much afraid. So very afraid.
Natalie reached down and grabbed Mitchell's face, looked him in the eye, and told him how much she loved him. I don't know what Mitchell thought or felt at that moment, all I know is my heart grew a foot or two that day. However cold it was outside, I know he felt the warmth of his mother’s love – and Mitchell’s soft smile always set my soul on fire. A testament that gentleness can wield great power.
We knew death was circling our home and would soon thrash and claw at our door – so we just clung to each other and braced for death. Doctors at the time told us there was nothing left to do – that they had done their best. In a few short months from this photo, my little boy’s heart would stop and we would experience the deepest form of human grief. A place so dark, not even the light of noon day would light the way. And eventually, when we began to see … the broken road of grief would stretch out to infinity.
Like all who grieve, I wish I could go back in time to this very moment so that I could also grab Mitchell’s face, look him in the eyes and tell him that I loved him and how special he was to my heart. I would beg for him to play with me … to build Legos, draw pictures, cuddle and watch movies. I would have set aside everything I was doing to drink in one more moment. I did all that I knew to do … but I wish I did more. That is a burden of grief, too. Those moments of opportunity have long come and gone … and I’m reminded all we ever really keep are the things that we have done.
I was in a leadership meeting a few months ago where we were trying to deal with some challenges. A peer observed, speaking of someone who wasn’t stepping up to their responsibilities, “Well, he is really busy you know …” he paused a moment then gestured with his hand, “… busy with et cetera.”
I began to think deeply on that simple phrase … “busy with et cetera.” I thought back on my own life and began to take stock of my own life decisions: was I caught up in the froth of frilly things, or was I doing that mattered most? I’d like to think I always made the right choice – but when I’m honest, I know where I could have done things differently … done things better.
I’m not suggesting that everything in life be deep and heavy … I’m talking about the conversations I could have had with Mitch or my other kids, yet I was lost in my smartphone. Or that thing for work I chose to do on a Friday night, instead of spending time with my family. I’m talking about being anywhere, but nowhere.
It is so easy to get caught up in et cetera; the kinds of things that keep us from living in the moment and thriving … suddenly we find our souls shrinking … on the inside we’re dying. Et cetera: always pretending to be of substance, yet in truth is the thinnest of things … a deception of the heart that is, in the end, really quite mean. Et cetera has us drowning in information, yet ever thirsty for direction, meaning and truth. We get married to material things and lesser pursuits … unaware our once treasured relationships have become the caboose.
Now, I know I wasn’t that bad, you see … but seeing et cetera for what it is, I know what I don’t want to be.
When I sit at the foot of my son’s place of rest, I want so badly hug and love little Mitch as his daddy knows best. I would trade every et cetera that swept me away … I would give it all back for just one more day.
Last weekend I was invited to give a keynote to a remarkable organization whose mission is to support families after a child dies. The non-profit is called The Compassionate Friends (TCF) and they just had their 38th annual national conference in Dallas. People from all over North America were in attendance and I was struck by TCF’s leadership, organization, workshops and tools they provided attendees to help bereaved parents and siblings navigate their way through grief.
Until Saturday night, I had never spoken to an audience with such a concentration of personal grief. Virtually everyone in attendance, with perhaps the exception of the sound and light technicians, had lost a child or sibling. Every person was carrying the heaviest of burdens – yet carried with them the hope of a better tomorrow. As I shared the story of my own loss and our family’s journey through life, hospice, death and grief, I realized each of them had their own story. I found myself wishing the roles were reversed and that I could learn from them.
Here are 4 things I shared at the end of my presentation … my personal observations on grief, hope and healing:
GRIEF IS LIKE FIRE
Grief is like a flame that cannot be extinguished. As long as I love, there will be fire. What the flame means to me … what it does to me or for me is found in how I carry it. The flame of grief can either burn me or help me see.
THE LANGUAGE OF GRIEF
Like love languages, grief has its unique language, too. Our grief language can be as different as our fingerprints or personalities – we may share similarities, but we also have differences. If we allow our loves ones to grieve in their own way, we may find beauty in the ashes.
HEALING HURTS
At least for me, I’ve observed that healing hurts. And hurting is a necessary path to healing. The less I resist the hurt, the more I allow my grief and sorrow to run through my body and soul, the sooner the storm passes. Though I am only 2 years into my grief journey, I can promise you that the storm will eventually break. However much the sky may be pitch as night, the sun will rise again. I promise. But the sun will also set. Grief will come and go for the rest of our lives.
GATHER GRATITUDE
One of the more healing aspects of my personal grief recovery has been in finding gratitude for everything. Alan Pedersen, the Executive director of TCF wisely observed at the beginning of the conference, “We aren’t here because our children died, but because they lived.” Alan’s observation was empowering and altered the way we see things.
So I told the audience, in like manner, if we focus on the positive things we may find that our cup, though cracked and tattered by grief and sorrow may still be overflowing. Gratitude for the time we had, the lessons we learned and the things that remain … gratitude is a gift we can give to ourselves. Gratitude is a supernal gift because it heals and mends.
As I ended my address I did what any thoughtful person might do … I wondered if I hit the mark and began to contemplate what I could have done better. By the time I found my seat I had already thought of 15 things I could have done differently to offer a little more help and hope. I thought to myself, “Okay little Mitch, next time … I’ll say those things next time.”
Yet, when I stop and think about that experience with TCF, I realize that there is no single book, no keynote presentation, no music, no piece of art … no single thing fixes the sorrow. Yet, compassionate friends … those people who empathize and care … people who lift one another’s burdens and love each other for just being them … that has the power to heal broken hearts and broken souls to mend.
There are few things as powerful and healing as the compassion of friends. As TCF wisely says, “you need not walk alone.”
www.compassionatefriends.org
Last summer Ethan got a little motorcycle to tool around on. He loved the sport and his thoughtful mother arranged to surprise Ethan for his birthday. We did a great job selling Ethan that he’d never get one because it was too dangerous, etc. He had given up asking for one – which made the surprise all the sweeter. With the help of some amazing neighbors who helped source and assemble the motorcycle (thank you Seth Lloyd), Ethan had the surprise of his life.
Little Wyatt, who is now fast approaching the age of Mitch when he passed away, was so excited for his brother. Though he was anxious to enjoy a gift he never thought he’d get, Ethan looked at Wyatt’s big eyes and said, “Do you want a ride?” Wyatt smiled with delight as his older brother handed him his helmet. Carefully they drove down our cul-de-sac and as Wyatt carried with him an enormous grin. These are the kind of days parents live for. To see your child find joy is one thing, but to see your child give joy to another is altogether different. That is a satisfaction of a deeper sort. If I find deep joy in watching my own children love and lift another, how might our Father feel about us doing the same to each other?
Ethan has told me on several occasions that he wants to use the lessons he’s learned from his fallen brother to help others. At 14 years of age, he reads Mitchell’s Journey all the time and comes back to me with ideas, insights and self-discoveries. Sometimes I cry when I reflect on the things he says – for tender mercies abound.
Ethan has learned to put his arm around Wyatt like he did Mitch. Every day he is shaping his little brother through kindness and brotherly mentorship. Oh, they’re not perfect. They’re just like any young brothers who tease and fight – they take things too far and their arguments sometimes seem to go on too long. They both have their strengths and growth opportunities, like all of us do. But the point isn’t that they stumble, but rather how they get back up again. Their forgiveness isn’t conditional. I love that.
To young Wyatt, on this warm summer afternoon, his older brother was a super brother-turned superhero. He inspired me just as much as his little brother.
It is interesting how grief is made easier when you set aside your own sorrows to help another. Somehow, some way, it hurts a little less. Oh, don't get me wrong; grief is the heaviest burden I know ... it wrenches soul, springs the deepest of tears and makes for the blackest of nights - but I have found service is a candle in all that darkness. Though I weep for Mitch, my heart is full to think that others may be helped a little. Though grief isn't gone, it is a little easier to bear.
We're learning as we go. Though, early on, just after my son's passing, I had high hopes to do more and raise money for this cause faster. What I had hoped to happen didn't. I think my Father is teaching me something ... and I'm trying to listen. In the meantime, we won't stop trying to find our path and help others along the way.
Natalie's heart was so full this morning. She cries quietly every day for Mitch - so I was glad to see her find joy in serving others. Seen also in this photo [on the right] are two of Natalie's dearest friends who have been an integral part of our charity run. We owe them, and our other committee members, a debt of gratitude.
We're excited to make our first announcement that we will be supporting MDA of Utah's Summer Camp this year. Because of your generous donations and involvement with Miles for Mitchell, we were able to donate $2,000 to MDA of Utah this year so young children can go swimming and fishing (two of Mitchie's favorite things to do).
While it may not sound like much, these boys don't have much time to be children. Before they know it, these young boys (and some girls) will find themselves unable to walk, use their arms or neck and will find their world of possibilities rapidly shrinking.
While others organizations are racing to find a cure (which we fully support), we are racing to give these children a life before it gets taken away.
We hope that the children who attend this year's activity will have warm memories to lift their hearts when life gets difficult for them.
We'll be announcing more of what we're doing this year with the proceeds of the run to help Parent Project MD and other DMD families in the coming weeks.
Because your involvement has empowered us to help others, you have helped in our own grieving process - because as we serve, we heal. So, from the bottom of my heart, thank you. Thank you for loving. Thank you for caring.
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