When Mitch called out to me at the hospital and asked if I would cuddle with him my heart melted. As father and son, we cuddled all the time, but this time was different because I knew his heart was failing and I didn’t know if it would be our last. My sweet wife took a photo of us with her iPhone as I handed Mitch a teddy bear she gave him. My little boy smiled as I kissed his forehead and softly hugged him. I wouldn't have traded that moment with Mitch for all the money in the world.
At this moment Mitch wasn't aware his life was at its end. That was a burden we would quietly carry for a few more weeks so Mitch could live as normal a life as possible. To our dismay, we couldn't protect him from the inevitable, but we could protect him from worry and fear – and in this instance, my wife and I felt that was best for Mitch. We eventually told him, but we wanted him to be happy for just a little while longer. That was our gift to him.
In the coming weeks we began to witness the miracle of the afterlife – that our son was being spiritually prepared for his own transition. I will write of those experiences another time – but there is no doubt there is more to mortality than we can see with our mortal eyes. So much more.
Even still, I find myself wrestling with grief in the most unexpected ways. Just this morning I awoke at 4:30 in a sheer panic, wanting to save my son. When I realized he was gone and I couldn't save him, I wept. I used to wake up every morning in a heart-pounding panic … thankfully those mornings are less frequent. But they still happen, and when they do, they are soul crushing. I dislike those mornings because I have to relive the shock and horror of my son’s death as if it just happened.
Just a few days ago Herriman City experienced some flooding and I was told it affected part of the cemetery. That evening, as I left work, I drove to the cemetery as quickly as I could, worried about how the flood affected Mitch. I couldn't get there fast enough and wanted to help my boy. I knew he wasn't there – but in my heart I wanted him to be. I was grateful his spot wasn't affected, but my heart went out to others who were. Even in death, I yearn to protect my son and am pained that I cannot.
Although I want so badly to protect my son, sometimes, when my soul is quiet and I’m listening with my heart, I realize the opposite is true … that now Mitch is protecting me.
One day, in what feels an eternity from now, I will see my little boy again. And I will weep. I will also realize that he is no longer a child – that, in fact, the opposite is true: the soul of my little boy is much older than I ever knew.
It is with the heaviest of hearts we share the passing of Trevor Nielsen earlier this morning from complications arising from Duchenne Muscular Dystrophy (DMD). We were blessed to visit with Trevor yesterday afternoon at the hospital and our prayers went out to him and his family after we left.
Today our hearts our heavy with grief and deep love for this family who loved their son so very much and wanted only for his happiness and health.
We were honored to meet this remarkable young man and family last year shortly after Mitch passed away. In this photo Trevor was getting some enthusiastic kisses from Marlie, Mitchell’s little puppy, while visiting our home. Because he had limited use of his arms due to muscle wasting Marlie had free access to give him a barrage of puppy kisses and she made no apologies for giving him all kinds of love. Trevor laughed and laughed and my heart sang with joy to see this young boy, whom I had just recently met, giggle and smile.
Tonight our family will have a moment of silence and a heart-felt prayer for the Nielsen family. For Jupiter is their home now and the gravity of grief will be heavier than ever.
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.
Marlie, who once brought great comfort to Mitch, now brings a measure of comfort to us.
Only a small measure, but a measure nonetheless.
For that I am grateful.