When your children are small, you are the one they cry out to in the dark. It is easy to be brave in the light, but in the dark, fears are often amplified . . . bigger . . . more real. In the light, it is easier to face the demons and fears when you can see them coming. When my son, MacKale, was diagnosed with osteosarcoma in early October 2015, I became like a child and it was in the darkness that I would call out to my Father. For me, it was in the dark that I could let the reality of what was happening around me during the light of the day come in and consume me.It was then that I would finally let the fear take over. It was then that I would cry out to my Father in desperation and despair and panic . . . and I would pray.
But not in the light of day . . . In the daylight, I needed to be strong. I needed to be not only ‘cancer mom,’ but also playmate, teacher, physical therapist, nurse, pharmacist, drill sergeant and ‘Food Nazi.’ I had to do whatever it was to keep my child alive and fighting.
But when the night came, I would curl up in in the dark of MacKale’s hospital room on the undersized couch and there, under blankets carrying familiar smells of the home and the rest of my family that I desperately missed, I would allow myself the luxury of falling apart. And it was there and then that I would let myself so vulnerably wonder, ‘will all this be enough?’
Will all the sacrifices that our family and MacKale have had to make be enough to save and sustain him? Will the effort to kill the disease, kill his spirit and the soul of the child who I have raised these last 11 years?
How will the sacrifice of a year away from school, his friends, his brothers, his home, his dog and the ability to have both of his parents with him affect him? And what about his broken heart over the lost love of playing sports, his lost mobility, his lost independence? What about the loss of a leg that moved so easily and skillfully his whole life and now . . . does not? Forget the hair! He could care less about the hair, but his leg . . . It will never be the same. Will the 100 plus nights in the hospital, the countless rounds of chemo, the 14 hour surgery to rebuild his leg, the hours and hours of PT, endless scans, transfusions, the miles and miles he crutched around the oncology floor, the blood draws and medication save the child, only to destroy the soul and spirit of my loving, funny, wise, silly and compassionate little boy?
When the chemo took over his body, MacKale would withdraw into himself. He would be quiet. He could only fight nausea and pain by shutting out the rest of the world. When that time would come, I would pull down the shades, turn off the lights and in the darkness again, I would allow myself to cry out to my Father, ‘please don’t let me lose ‘him.’
When MacKale would finally wake up hours later, despite being exhausted and weak, he would tell me it was time to visit the other patients, say hello to the nurses, play some music and ‘check in on the little ones’ fighting his same fight on our hospital’s 9th floor. As he carried his damaged leg for laps around the oncology floor, he would stop and wave, make faces, play music, dance on his one good leg and often, pull up a chair and play through the window with the other patients who were quarantined and just too ill to come out. And when I would see this, my faith would be renewed, and I knew that the prayers I uttered in the dark had been heard. MacKale, the MacKale I knew, was still in there! Despite exhaustion, frustration, sickness and being beyond weary, he was still ‘him.’
Yes, osteosarcoma is a vicious beast of a cancer. It can steal the most important parts of your life and leave you in a wake of despair, never knowing if or when it will return with a vengeance. And perhaps, because of this unrelenting beast, none of us – not me, not MacKale’s dad, not his brothers – none of us may ever be exactly ‘us’ again, and MacKale may never be exactly the ‘Mac’ he used to be. But I have faith that the best parts of him are still intact, and perhaps, all that sacrifice and hard work has been God’s plan to make a better, a stronger ‘us’ and to make Mac a stronger, wiser and more amazing ‘MacKale’; strong enough to face any darkness and wise enough to know he never has to face it alone.
Written by Marsha McGuire
Marsha McGuire is a kindergarten teacher from Cadillac, Michigan where she lives with her husband Michael and their three sons, MacKale, McCoy and MaGill. In the October of 2015, MacKale was diagnosed with osteosarcoma when a tumor was found in his left tibia. MacKale spent the rest of his school year fighting this horrendous disease at Helen DeVos Children’s Hospital in Grand Rapids, Michigan. He underwent limb salvage surgery in January of 2016 and completed his chemo regiment in June. Today, after missing the majority of his 6th grade school year, MacKale is a junior high school 7th grader still working at rehabilitating his ‘new’ leg, finding new ways to enjoy his beloved sports and spending lost time with his little brothers, and Marsha has happily returned to her classroom. If you’d like to learn more about MacKale’s fight, you can read more at www.mackalesjourney.blogspot.com