Dancing in the rain

In the weeks since Ryan’s surgery it has become more real to me than ever that my son may not have a very long life. When he was first diagnosed, I was forced to release the idea that he would be mine forever, or at least my forever, which meant until the day I was to die. Most of us assume, I think, that we will outlive our children.

The further along we went in the pregnancy and the more consultations we had, I came to realize that no matter the amount of intervention from doctors, Ryan’s health will always be compromised.

My neighbor’s cousin collapsed a few weeks ago from an arrhythmia of the heart, something he may have struggled with from birth. He was 20. Young and vibrant and gone too soon. This tragedy struck close to home. Another reminder that life is fragile.

These thoughts have nagged at the back of my mind as this summer once again reminded me that our life is complicated by illness.

It’s easy to allow fear to creep in and overwhelm the soul.

In times like these it takes energy to remind myself of the truth that we are not in control. Henri Nouwen wrote, “Inviting God into our grief means we will never walk alone.” I have found this to be true and can’t comprehend finding peace without believing that God loves me and will be with me no matter the circumstances.

People ask if we regret bringing Ryan to full term, regret putting him through incidences where he suffers – unfairly it seems – and suffers hard. Do we feel regret when we see him hooked up to machines, sedated to his surroundings, or awake and miserable. Sad yes, regret no.

The majority of Ryan’s days are spent outside the hospital, at home with a family who adores him. He is loved completely by three sisters and parents who try their best to raise him in an atmosphere where there are accommodations, but not excuses.

Ryan truly loves life. He displays very little fear or insecurity. His life in many ways is very good. It’s hard to regret that. It’s hard to regret bringing him into a world of pain and suffering when he lights up a room with his effervescent smile. We choose to focus on the joy he experiences.

Ryan’s life reaffirms for me that life isn’t about avoiding pain. We convince ourselves as humans that if we take the “right” road, we’ll be free of all aspects of discomfort.

The reality is all roads have bouts of pain, brushes with suffering, and acquaintance with grief. The secret isn’t knowing which path to take. The secret is knowing the One who walks the path with you and allowing Him to mold you through it.

Life isn’t about avoiding the storm, but learning to dance in spite of it. I believe it’s possible, because I know a little boy who does it often.