Waiting anxiously at the finish line. Another cross country season coming to an end. My middle son, Dylan, completed the first half of the course and trudged up the dreaded Agony Hill. Now I cannot see him. He has not come down the mountain. Is he ok? Is he hurt? I breath to calm these questions racing in my head.
Parenting is not for the faint of heart.
March 4, 2004
Dear Family and Friends,
The first oncologist to diagnose Dylan described his recovery as climbing a mountain with many switchbacks. It might take awhile, but he would ultimately reach the top. We have just experienced a week of switchbacks. Monday morning around 2 am, Dylan woke up very agitated. After about three hours crying, his large incision seemed to rupture and poor out very foul smelling liquid. We took him into the emergency room at Children’s Hospital, and he was eventually admitted for an infection in his incision. They have been draining, monitoring, and giving him antibiotics since Monday.
One side effect of the ACTH injections is that wounds may take longer to heal. This may explain why he ended up with an infection when we were told it was safe to change his bandages at home. As of today, his new drainage tube has been removed, and they are monitoring the healing of his incisions and an elevation in his blood pressure. We hope that he will be released tomorrow. I think his elevated blood pressure is from his irritability about being cooped up in a hospital bed for a week. Both he and I came to our breaking points this afternoon, and I pleaded with the nurse to unplug him from some of his monitors so I could walk with him in the hall. It was amazing how a simple walk down a hospital corridor could change both of our moods. Ah freedom! Kory is now at the hospital with Dylan giving me a much needed break from my marathon stay.
This week also brought some very good news. Dylan’s MIBG test last Thursday came back negative, which means at this time no cancer cells are being detected in his body! His OMS symptoms are also slowly fading. The nurses and doctors at the hospital have all commented on how much better his tremors and eye twitches are compared to when he was there before. He still gets very agitated, which is part of his OMS. Three weeks ago, before his symptoms appeared he was sitting, scooting, standing, holding on to objects, smiling, and laughing like any other happy and healthy ten month old. Now he is doing none of those things. We see small changes everyday, and we know that he will soon be able to accomplish these milestones again.
All of your thoughts and prayers have been deeply felt by our family, and we are humbled by the amount of love that has been directed our way these past few weeks. Thank you.
That was my mountain, or it was supposed to be my mountain, my trial, my hardship in this life. Dylan’s diagnosis of neuroblastoma and opsoclonus myoclonus syndrome thirteen years ago was his mountain and my mountain as his parent that we had to climb.
I marvel at those who strive to climb every major peak on this planet. The courage, strength, and desire to test your physical limit amazes.
Since writing the journal entry above after Dylan’s initial diagnosis, I have discovered that life is full of mountains. It is not just one Everest that we are faced with in our lifetime. With each climb we have the choice to give up or persist with courage and strength, sometimes testing our own physical and psychological limits.
As a parent I must bear witness to my children’s mountains as well. Each one of my children have had their own struggles. I am astonished at the strength and courage it takes for my extremely quiet and introverted daughter to get up on the stage at school and recite a poem she has memorized with a loud clear voice while maintaining eye contact with her audience. My oldest who struggles with the demons of his father’s death can find beauty in the most unexpected places. Through his photography he is conquering the anxiety and depression that threatens to weigh him down.
Every ounce of my Mama Bear being wants to protect and save them from these trials: make life easier, less harsh for my babies. Perhaps I need to let Peter’s words resonate in my soul.
“Be shepherds of God’s flock that is under your care, watching over them – not because you must, but because you are willing, as God wants you to be; not pursuing dishonest gain, but eager to serve; not lording over those entrusted to you, but being examples to the flock.” 1Peter 5:2-3
I have to consciously resist the urge to control and save my children from their life tests. It is through these mountain climbs that the greatest learning takes place, self esteem and self worth are forged, and perseverance paves the foundation of their character.
Everyday my children observe through my example what it looks like to climb the mountain of single parenthood. It is not a perfect example. It is fraught with sink holes and missteps. Yet, I persist. Resiliency will be my legacy.
Back on the cross country course, I continue to wait for Dylan. Looking for that red jersey wearing runner. Most of his teammates have crossed the finish line minutes ago. Trying desperately to keep panic at bay. Suppressing the urge to run to his rescue. I wait. Was it a mistake to let him participate?
I finally get a text message from his uncle who was watching the race from the top of Agony. “All is fine,” he writes. “Dylan started burping and threw up. Gonna finish.”
Finish, he did!
For a kid who lost all mobility at ten months old and had to fight through years of therapy and medical treatments to learn to walk and talk, this was a mountain I never imagined he would be able to climb.
Perhaps this is the same feeling of awe that God has for each one of us as we conquer our own hardships in life. Perhaps He is waiting at the finish line cheering for us, rejoicing in our accomplishments, ready with a thumbs up.
I have always been drawn to the mountains. Physically, the majestic formations of impossibly steep rocks and craggy peaks speckled with snow and fringed by forests, remind me of God’s magnificent creation. His presence here on Earth. Metaphorically, the mountains in which we face in our lives are just as alluring to me, in the same way. It is within those moments of trial that we can see the hand of God working within our lives. Whether it is an answer to a prayer, a timely placed friend, or a stranger offering assistance, we see our Creator watching over His flock.
One thing I am sure of…
I am blessed to be entrusted with this flock of mountain climbers!