A few days after Mitchell passed away we received a very personal letter from Representative John Knotwell expressing his sincere condolences. I remember reading his heart-felt letter and being moved to tears because he, a stranger to us, cared so much. He wasn't looking for recognition. But he, being a father, recognized our hurt and felt after us … and he served us by mourning with us.
Once again I was on the receiving end of that magnificent doctrine of mourning with those that mourn. So many of you have done the same for us – and we are deeply grateful.
Fast-forward a year (today) and Rep. Knotwell, who still cared, visited our home with two memorials in honor of our fallen son: a state flag that had been flown in memory of Mitch near the day of his passing and an official citation from the state recognizing our son, his journey and legacy. As I read the words of the citation I was so moved by its thoughtfulness – I fought back tears. There was nothing perfunctory about it. That state document was heart-felt and very much in touch.
We visited a while and I could tell by the questions he asked and the comments he made that he cared. After he left my home I went to my office and quietly shut my door and had a deep moment … a moment of grief and gratitude.
My wife and I want to thank Speaker Rebecca Lockhart and Rep. John Knotwell for recognizing our son and family. Though we wish with all our heart we were living out our lives under the canopy of anonymity, we are so grateful for the empathy, service, and goodness of others. For all of you who reach out in love, know that you make heavy hearts a little lighter.
Today I was reminded that people are good. Very good.
It was late August and we somehow managed to survive our first summer without our son. Saturday morning had come and it was a beautiful, almost dream-like day when we went to visit out son’s place of rest. A few moments prior to this photo I captured Marlie sitting at the foot of Mitchell’s headstone staring at it. After a few moments Natalie quietly sat by Marlie. This little girl, this furry friend to our son and family, looked up at this broken-hearted mommy.
I know dogs are intuitive for I have seen their intuition with my own eyes. This same puppy, much smaller at the time, never left Mitchell’s side while he was sick. And the night Mitch passed she curled around his head as if to comfort him – like a mother would cradle her baby. Now there was another person that needed comfort – a mother who was dying on the inside. I wondered at this moment what Marlie was thinking – did she know that Natalie was in pain? Sometimes I think so.
I sensed Marlie missed Mitch because I would often find her laying on his bed as if to wait for him to come home. She would lay on his pillow in the same way she did when Mitch passed away. I was always saddened to see that.
A few weeks after Mitch passed away a dear friend of our family and mother to one of Mitchell’s best friends, Carter (who I will write about soon), approached us and asked if she could start a 5K run in honor of Mitch called “Miles for Mitchell”.
We were so touched by her thoughtfulness. Natalie loves to run - it is her way of coping. Before Mitchell passed away he said in a soft, almost breathless voice, “Hey mom, you can take Marlie running with you every day. I think she would like that.” Mitch wished he could run like other kids but his muscles were too weak. Natalie kissed Mitch softly and said, “I sure will. I will run with Marlie.”
Natalie has kept her promise and runs every day with this sweet little dog.
We were overwhelmed by the love and support from our local community, neighbors and friends last year. They rallied to help us in a time of crisis and great need – and we were deeply humbled and taken to our knees. That run, Miles for Mitchell, did so much for Natalie’s heart on her path to healing. For she was surrounded by people who cared, who loved her and felt after her broken heart. I suspect this year's run will do the same for her. And that makes my heart glad - for she hurts, too.
For those who want to attend our second annual Miles for Mitchell, the run will be held May 3rd. You can find more details on www.facebook.com/MilesForMitchell or you can register here: http://tinyurl.com/ka5qu89.
Last year the run was aimed at helping our family pay off medical bills and cover funeral expenses – for which we were deeply grateful.
This year, and every year hereafter, we will run to raise awareness for DMD and its catastrophic outcomes, to support Mitchell’s Journey, and help others who hurt.
Yesterday I was with the people I love, honoring a little boy I love.
My in-laws and extended family met at the cemetery to honor and remember little Mitch. I was glad to see everyone – and it was nice to see them go out of their way to show they cared – but my heart was tender. I think it will always be tender for as long as I live. It always seems that tears are just a thought away. I guess that’s part of grief and I’m learning to accept it.
We gathered around Mitchell’s headstone and my father-in-law passed around a bag of salt & vinegar chips (Mitchell’s favorite). To each was given a chip and then shared something they remembered about our son. We all laughed and cried as we reminisced about this neat little boy that had found his way into everyone’s heart. I quietly put my sunglasses on to hide my eyes that had become red and filled with tears. I didn't want anyone to stop sharing for fear they were upsetting me. I wanted to hear what people remembered.
My sweet wife smiled and was gracious to everyone, but I could see beneath her smile a broken heart that missed her baby boy. My heart broke for her, too. But we kept our chins up and we remembered the sweet times.
At some point two of Mitchell’s aunts, Sonya and Mindy, reminded me of our last Thanksgiving with Mitch. We had all gathered at the grandparents’ home and sat around their living room, each sharing what we were thankful for. When it was Mitchell’s turn he said in his quiet and humble voice, “I’m thankful for life.” The moment they reminded me what my son said, everything came back to me and I remembered it, too … and my heart fell to the grass.
I think somewhere deep down Mitch knew his life would be shorter than most. Actually, I know Mitch knew it, but he didn't realize what he knew. Perhaps that is why he valued life so much. If my son valued life, I will value it, too.
I wish I could have learned some of life’s lessons a different way … I wish my broken son didn't have to teach me what it means to be whole. Although I miss my son, I have so much to be thankful for and I will not waste another moment of my life. I will live for my family. I will live for my son.
Yesterday I spoke of being a weary traveler stumbling down a broken road. This morning I awoke contemplating how life is a journey of many roads. I never imagined that Mitchell’s Journey would become woven into the journey of so many others. There was no way to know this journey of grief and sorrow would touch hearts and inspire people to choose different paths for their betterment. Or that people would rediscover love, family and faith. We are deeply humbled by all that has happened and still trying to put our heads around everything.
In truth, we would rather be an invisible family living out our lives with Mitch and our other kids. Mitch never wanted to be a catalyst for awareness or a source of inspiration … he just wanted to be 10. With all that I am, I wish I could have given that to him. But such was not our lot. To my great heartache, my son is gone and I can’t change that. But I can choose the steps before me – and I hope I can be like the Good Samaritan who stops to love and lift another.
It wasn't long after Mitchell’s passing I received a message from Melissa Dewitt of Colorado. Sometime prior she started following Mitchell’s Journey and was touched by our sons fight to survive. A stranger to us at the time she sent us a message that she might be in Salt Lake City soon and wanted to meet my family and visit Mitchell’s place of rest. With thousands of messages a month, it isn't possible to respond to everyone; though we try … we really try. Somehow the stars aligned and we connected. We were so touched by her kindness.
Within a few months Melissa and her family came to Salt Lake City and met us at the cemetery. It was both sobering and wonderful. They are such a loving, sincere family and we were blessed by the chance to know them. Since that meeting we have considered them dear friends of our family and our lives are richer because of them.
Just recently Melissa, having been moved by Mitchell’s Journey, decided to support PPMD – an organization that is leading the DMD & medical communities to find a solution to this fatal disease.
On May 18th Melissa will be running for “Run for Our Sons” … a PPMD fundraiser. For those who followed our story earlier last year, you’ll remember Pat Furlong of PPMD was the one that reached out to us and rallied the national medical community to try and save our son. Pat Furlong moved heaven and earth to try and save Mitch. We love and honor Pat and PPMD. They are making a difference. Every single day PPMD makes a difference. Every day they are driving solutions one step closer to a cure. But alas, a cure remains miles away.
For those who are able, please support our friend Melissa in her efforts to honor Mitch and run for our sons. http://www.parentprojectmd.org/site/TR?px=1550221&fr_id=3210&pg=personal
I am inspired by the many Good Samaritans we have met along our own journey. Melissa is one of them. She, like all of us, has a life and/or family to love and care for. She has a journey and road to travel that is uniquely hers – yet she decided to spend time and energy to help others who are afflicted with DMD. Other boys like Mitch. I love and honor her for that.
And then there’s Pat Furlong … a remarkable mother who lost two boys to DMD. Two. My eyes well with tears as I contemplate the enormity of her loss; two wonderfully, precious sons just like Mitch. She didn't shrink under the profound sorrow of losing her boys – rather she rose like a lion in defense of our sons and started PPMD two decades ago. Her road was also broken, yet she carried her broken heart while leading and lifting others. I am in awe of her.
So on this journey of many roads, I salute the Good Samaritans who take time while traveling their own journey, often at the expense of comfort or convenience, to help another. Melissa & Pat, and so many of you who reach out to lift and love, to lead and change … you inspire me. Every single day, you inspire me.