love and loss

Before we became a part of the “special needs world”, I had no idea just how many families actually lost their child from a particular disability. Beforehand, I would read stories in the paper, or see something on the news from time to time. Yet now, it seems common place… being linked into many Facebook support groups of special needs associated with Chiara, it saddens me when a mother or father shares a post that their child has passed away. This is too common in the world of Polymicrogyria… I read this post (see below) from “Mitchell’s Journey”, different condition yet this moved me to my core – a father writing so eloquently with such depth, honesty and love… so many profound insights.. thank you for sharing…

It’s been said the only bad photo is the one you didn’t take. Although this image is out of focus and not properly exposed, I am glad I took it. To me this is a beautiful moment in time I will never get back and I would rather have a blurry image than no image. 

It was May 2003 and baby Mitch was a chubby little toddler. Our kids were so young back then; it feels like yesterday, but a lifetime away. I knew something was wrong with my little boy but I couldn’t put my finger on it, I just sensed he would have a short life. But I didn’t live my life in fear of the future, I lived each moment the best I knew how. I wasn’t always good at it, but I always tried. 

Natalie wanted to take our kids on a walk to a pond near our old home in Draper, Utah. We fed ducks, chased squirrels and enjoyed the spring air. As we began to walk home I remember getting ahead of Natalie with my oldest son, Ethan. He and I were talking about frogs and snakes and the circle of life. Ethan was a funny little squirt and always had a pocket full of conversation. I can still hear his little voice in my mind. I have so many wonderful memories of Ethan, and all my children. My cup runneth over. 

At some point I turned my head to see my sweet wife who held our baby in her arms. Laura-Ashley had a serious look on her face and was clearly talking about something important. Wee Mitch was turning his body away from his mom because he wanted to get down and grab wood chips on the trail. I’m pretty sure baby Mitch thought they were little unwrapped candy bars. While Mitch tried to break free, Natalie lovingly held our baby while she gave our daughter her undivided attention. 

I think mothers are awesome. How easy it would have been to say, “It’s been a long day. I stayed up late the night before rocking baby in my arms. I woke up early, changed a pile of diapers throughout the day, fed you, washed and folded your clothes, cleaned the house and fed you again … I’m tired. Go watch TV.” Although my sweet wife could have said all that and so much more, she didn’t. Once again she traded inconvenience for love and I honor her for that. I have so much to learn from my wife.

Having children is a heavenly paradox of sorts. It seems the only mortal relationship where we give endlessly to these little people who have no practical means to repay us, at least in the conventional sense … yet we get so much more in return. They consume our time, money, and patience. They make nights short and days long. They break things and leave messes. Not unlike what you might read on a warning label to a new drug, the potential side effects might seem overwhelming and give us pause. Despite everything these little ones take, and the emotional toll they exact, they give back more than we have the capacity to imagine. Ask any parent how much they love their child and they might stumble to find words. Even if they find words, they are woefully inadequate. Were you to ask me how I feel about my children my eyes will simply fill with tears. There are simply no words to describe the love we feel for our children. Therein lies is the heavenly paradox; we love whom we serve. Service is the great multiplier of love. 

I hope when the time comes and I am laid to rest that my shoes are found worn out, hanging by threads, and my hands are weathered and calloused from service to my family and fellow man. I hope my knees are found worn and bruised from talking to my own Father and praying for guidance. And, with any luck, a broken heart that is swollen and overflowing with love. 

My son’s journey through life and death has changed the trajectory of mine. Though broken and deeply flawed, I am changed. I am on a different path now and as I journey to that place beyond the hills I know there is work to do, service to perform and people to love. Should I ever find myself lacking in love, I will know I’m not serving enough and will double my efforts. For love is the language of heaven, and I want more of that.


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