I took this photo at a stop light as we were on our way to meet with Mitchell’s cardiologist. We were just told over the phone (at our request) he was at risk of sudden death. Frightened by the dark path that lay before our feet, we arranged to have Mitch spend the afternoon with his aunt (Sonya) so we could speak candidly about our son, his fate, and explore anything we could do to help him.
By the look on my dear wife’s face I could tell she was worried in ways only a mommy can know. I also tried to keep my broken heart from falling apart and I was fumbling, all over the place. Our precious baby was mortally wounded by DMD. This little boy we saw grow in our arms had also grown deep roots in our hearts and it pained us to see his life cut down by an invisible enemy that knows no mercy. None at all.
Seeing the look of deep worry on my wife’s face I grabbed her hand and said, “Honey, I don’t know what the future holds but I’m with you, no matter what.” We both cried softly on the way to the hospital. There we were … two adults who, in our children’s eyes, were supposed to know all the answers. We were supposed to keep our children safe. Yet we were frightened children ourselves. We were afraid of the dark … and that’s all we saw at the time … nothing … just darkness; for everything was unknowable.
A few years ago I had a conversation with an old friend just after we learned Mitchell’s heart was not doing well. With love and empathy in his voice he said “Life sure has a way of tenderizing us, doesn't it?” I turned to him and responded firmly but kindly, “Oh, and sometimes it pulverizes us.” At the time I had no idea how pulverized my heart would become.
So as we sat in the car, anxious to learn what was happening with our dying son, I remembered that years ago I made a promise to my wife that I would be the best husband I knew how to be; that I would never leave her. I was certainly no knight in shining armor and what I brought to our marriage was a great deal of imperfection … but I had a sincere desire to love and honor my wife. I still do. I’m not always the best at it, but I sure try. I’m pretty sure there’s a special place in heaven for people like Natalie who put up with people like me.
Despite my youthful fantasies that marriage would be easy, I have discovered marriage is hard. And a good marriage is even harder because it takes effort to rise above the routines that quietly erode relationships. I realized if I was not careful, the little things that used to make my heart skip a beat would suddenly have no heartbeat … and one day I might wake up and realize all I ever loved is lost. I never wanted that to happen to my family so I always tried to defend against that. Though we have had ups and downs and struggled, like every couple, we have always tried to be there for each other, no matter what.
And when death came violently clawing at our door and darkness settled in, we had a candle in the wilderness. We could see, under the dim light of faith, the path beneath our feet. That candle of love and light came from my beautiful wife and our Father’s heavenly sight.
The path is still dark, and sometimes grief makes the path darker, still. Though I wish to see where our journey will end, a step or two before me is all that I can see … and that is good enough for me. I won’t give up. No matter what.
Today we remembered some of our favorite memories with Mitch while making new ones. Although my heart yearns to reach back in time and hold my son, I am so grateful for today. I have today ... and that's awesome.
With all that I am, I love my family.
I wonder what would happen if everyone had a chance to read the warning label before we made life decisions.
The day of my wedding my warning label might have read: “Congratulations. You are young and in love. Enjoy the calm before the storm, for the years ahead won’t always be kind to you. In fact, they will be brutal. Yes, you’ll experience triumphs but you’ll also come to know the darkest tragedies. Though you won’t mean to, you will make choices that hurt each other and yourselves. You will fail at a business before you succeed and while you've failed you’ll find yourselves searching the couch to find enough quarters to pay for diapers. You will struggle and you will be afraid. At some point, you’ll wonder if you're capable of anything at all. You will come to know the darkest storm clouds and your wilderness will be vast and deep. Your heart strings will be wrenched and pulled until you can no longer stand. You will have a child that will die and you will fall to your knees and weep until your knees are broken and worn. Pain and struggle will be your teacher. And that’s just the beginning.”
Yet, next to the warning, I would have also read a benefits label: “Take heart. Though you may feel alone, you will not be, not ever. Your Father will be with you – for He is your tutor and all that will happen will be for your good. You will have a family and come to know a love you scarcely comprehend on your own. That love you will come to feel for your children will be but a speck compared to the love your Father has for you. At one point you’ll finally understand that to know the love of family is to know a little more about God, for we are all His children. Your tears of joy and sorrow will become a lens to your eyes and you will begin to see things you didn't before. Your heart will grow and feel more love and joy than you can imagine. Like a heavenly constellation, you will begin to see the tender mercies poured out upon your lives by a loving Father - however, you will only see those stars in the pitch of night. You will make connections between them and eventually see the hand of God through everything. And that’s just the beginning.”
Tomorrow will mark our 17th anniversary. On that cool September day I married my wife, I had no idea the journey that lay before our feet. I’ll never forget crying as the officiator spoke, not out of sorrow but out of a deep sense something was being put in motion – more than I knew. All I knew was that I loved my wife and it was good. I knew I would be imperfect, but I would do my best. My love for this good woman has only grown stronger and deeper. I consider myself blessed beyond measure.
Today, as I look back upon the 17 years we've had together, knowing the depths of horror and the heights of happiness – I wouldn't trade my life for anything. Between the hurt and the happiness I have come to know a different kind of love – and I am grateful. I would do it all over again. To infinity and beyond, I would do it all over again.
And to think that today I can no more read the warning and benefits labels for tomorrow.
Today is just the beginning.
A few years ago our extended family had a reunion in Mexico. Our generous step-father and grandfather sponsored the trip as a means to spend time together and create memories.
On this occasion, we were at the Cenote in Chichén Itzá, Mexico. Imagine a giant underground pool of water several hundred feet beneath the surface and surrounded in the hardest stone. Were you to look upward you would see the sky, jungle trees and vines draping downward to the water. The water below was exceedingly deep and dark, but it was fresh water and a nice break from the intense heat.
We helped Mitch descend a stair path until we reached a stone platform about 10 feet from the waterline. Natalie, wanting Mitch to have a life full of experience asked if he wanted to jump into the water, she said, “I’ll go with you.” Mitch gladly accepted the invitation. Mitch was afraid of nothing, save dying. I think he only feared death, not because of what would happen over there, but because he didn't want to miss out on everything happening here. Mitch loved life. He often commented how glad he was to be alive. And to think how oft I have lived and never really been alive. Because of my sweet son, I am changed.
I'll never forget the look on Mitchie’s face after he came out of the water. He had the biggest smile because he conquered another one of life’s challenges. Fellow swimmers helped Mitch and Natalie climb the rope ladder so he could jump in once more. Mitch loved this experience. He was so happy to have dove into the water with his mom and he talked about it for a long time.
I love this image because it is symbolic of how my wife and son lived. Mitch loved life and was always up for an adventure. My dear wife postponed any convenience, if necessary, to teach our children discipline, a sound work ethic and to enjoy everything life has to offer. This image exactly depicts my noble, loving wife seeking ways to help our disabled son drink life in; always by his side, always holding his hand.
The night Mitch passed away I remember my wife holding his hand in a similar manner – it was firm and loving, tender and assuring. Only that time she couldn't jump with Mitch. She stood beside our little boy on the edge of a different dark water … a place wherein one cannot see, at least with mortal eyes. Natalie loved our little boy and let him know he would be okay – for soon he would jump to that other place.
It wasn't but a few days earlier Natalie wept at the side of his bed, thinking Mitch was asleep when he awoke and said, “It’s okay Mommy.” I will forever be in awe of the strength and nobility of this little boy … who set aside his own fears to comfort his mother. I am quite certain that was a jump he did not want to make – but he loved his mommy enough to help her feel better.
Mitch lives. He doesn't live because I write of him and that his memory is in the hearts and minds of people. He is not an idea or a memory. He lives as an actual being, a person of consciousness: a child of God who lives on – as will all of us after we leave this mortal state. I know this. I only wish such knowledge took the pain of separation and loss away – but it doesn't. It gives context to loss and sorrow, but it doesn't give us immunity from pain. I miss my 10-year-old son. I want him back and I cannot have him and my heart is greatly pained therewith.
Yet, to look upon this image gives me fresh courage to live a full life and drink the moments in the best I can. I want to live a life like Mitch lived – fearlessly facing life’s adventures and doing it with those I love. If my little son could face all manner of unknowns with such bravery, so can I. And then there’s my sweet wife … a woman I will always love and honor because of the way she lives and loves.
I am grateful for these two beautiful examples in my life: my wife for endlessly severing and loving and my son for his bravery and selflessness – which selflessness at the end of his life was a bravery of a much nobler sort.