Mitchell's Journey

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SO FAR AWAY

Tiny Mitch was seated at our old kitchen table about to celebrate his second birthday. He was a gentle child who had a loving and tender disposition about him. I always felt like Heaven loaned us something special when it came to Mitch. I know that all of our children are special, truly special, but there was something unique about this little boy and I couldn’t put my finger on it.

Natalie made cupcakes which our kids and some cousins decorated. Ethan had cheated and already stuffed a cupcake in his mouth, as evidenced by the crumbs on his face. He was a turkey, but we loved him so. Laura-Ashley stood by her baby brother with her eyes set on the cupcake she wanted. The cousins stood transfixed over the mouth party that was about to take place. Oh, to be a child again …

Mitch curled his tiny fingers as Natalie slowly lit each candle. As I took this photo I received that same impression I had on the day of his birth … that something was wrong with my son. I wondered to myself, “Who are you little Mitch? What is happening with you? What are you meant to do?” I couldn’t see into the future; I only sensed a storm was brooding over the horizon and my soul shuddered. 

After the candles were lit, tiny Mitch attempted to blow the candles. After a few attempts, the candles were out and the kids were enjoying their sugary treats. My memories of this evening are vivid and I can’t help but think how grateful I am that the time spent investing in our children pays dividends for a lifetime. I am glad I wasn’t too busy to be a dad. I know I’ve got a lot to improve on – but I got this day right.

Later that night I rocked tiny Mitch in my arms. As he lay softly in my embrace, he would reach up to touch my face with one hand as he held his sippy cup in the other. I would sing songs to him, tell him fantastical stories, and say him I loved him repeatedly. Soon, my baby drifted off to that place of magic and dreams – and the little boy in me wished I could follow him to Neverland. In that moment, never a child seemed so at peace. Never a father just the same. I held him a little longer, not wanting that heavenly moment to end, grateful for the gift of parenthood. There was nothing in the world I wanted more than what I held in my arms in that moment. As I tucked him in, Natalie, the sweetest mother I have ever known, kissed his face ever so gently. 

I remember kneeling at the edge of my bed that night, long after everyone was asleep, thanking God for the gift of family. I was deeply flawed and felt inadequate as a husband and father, yet I was given the greatest gift in all of humanity: family. 

A year later we would learn Mitch had DMD and that he would likely die in his late teens or early twenties. We were told his muscles would soon atrophy and he would stop walking before he was a teenager. Not long after, he wouldn’t be able to lift his arms or turn over in his bed. His sweet little body would get weaker and weaker until he wouldn’t be able to breathe on his own. Eventually, his heart, also a muscle, would succumb. Death was certain, but when was not.

It was at this same table I wept while reading medical texts that described the horror show I would soon witness. Not only did it detail what DMD does to the body, but what it does to the family. We were told by many that most marriages don’t survive … that this would not only break our hearts but most likely break our family. So, as if one were to brace for a tidal wave, Natalie and I clung to each other and promised to never let each other go.

It was at this table, in the still of night, I knelt in prayer begging my Father for a way out. My son would not be spared. In fact, because of early heart failure, he would die much sooner than anyone imagined. Exactly the opposite of my heart’s desire. Just because I didn’t get want I wanted, doesn’t mean Heaven doesn’t care. In fact, I recognize tender mercies that show me He is here, there and everywhere. Most importantly, I see evidence that He cares.

Mitch had an impression similar to the one I had about him, another tender mercy. When he came home from the hospital, not knowing he was going to die, he said, “Mom, my birthday feels so far away. Can I have an early birthday?” It was unlike him to ask for any such thing – and we knew that he sensed change was happening. Mitch had an early birthday – which was a gift to our son and our family. He was just as tender that day as he was in this photo.

Tomorrow is my son’s birthday; he would have turned 14 years old. It’s been 3 years since he left our family and I wish I could say grief was a thing of the past … but it is not. As long as I’m mortal, deep grief will last. Grief is a struggle; sometimes peace seems so far away. That is until I recognize healing is a process, not a destination, and I can nurture it each day. 

Of grief and healing, I have much to say. Despite the heartache and deep dismay, I've discovered portions of peace aren’t so far away.