This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Saturday, March 13, 2010

A Father's Thoughts

Hi, I'm Steve, Karen's husband.

I asked Karen a few weeks ago if I could do a guest entry on her blog and she was, at first, very reluctant. If fact, she pretty much refused. Since then, however, she's been asking me when I am going to do it. So here it is.

Joel has been both an extreme blessing and a gut-wrenching heartache for me. Karen's blog title, "Rainbows and Earthquakes", actually says a lot in those three words.

Let me talk about the earthquakes first.

Everything went so well with my first son, Caeden. I was there for his birth. I cut the cord. He was always healthy and way ahead of all his milestones. After him, I wanted more kids. Being a parent was so easy and such a joy.

Things with Joel did not go well right from the start. I was there for his birth. It came fast. There was maconium in the amniotic fluid. Doctors took him before I could cut the cord. I was not allowed to hold him until the doctors finished checking him. I never did get to cut his cord.

His fontenell was incredibly large. Two weeks into his life he had episodes in which he stopped breathing and was rushed by ambulance to the hospital for the first of his many stays in the hospital. He stopped seeing at three months. He was diagnosed with an incurable disease that will slowly kill him.

At about the same time as Joel's PBD diagnosis, my wife's sister, herself a mother of two, was diagnosed with lymphnoma cancer and a few months later her father was found to have leukemia. The world seemed to be collapsing for our extended, but very close, family. I had a stressful job teaching inner-city kids and now my homelife was even more stressful.

I had never been a grateful man before. I always looked to what I wanted and didn't have rather than to what I was blessed to have. I had always felt that God picked on me. I was the ant and God was the mean kid with the magnifying glass torturing me.

If I stepped out my front door, looked up, and saw a meteor hurtling down to land, out of all the infinite places of the vast universe, on top of me, I think I would have said as my last words, "Yeah, that's about right."

Now for the rainbows.

Karen's sister and father are cancer-free now. My job isn't as stressful.

I have never led a cursed life as I once thought. I grew up in a loving Christian family with a wonderful father, mother, sister, and brother. I married a good Christian woman who has shown more love and less selfishness than any woman I have ever met. Things have not always worked out the way I wanted them to but I have been very lucky they didn't.

My journey with Joel has opened my eyes and changed my life and world outlook more than anything in my life before. I went to a leukadystrophy conference in Chicago last year and saw so many other parents who have suffered so much more than myself.

My concerns before Joel revolved around the car I drove, the electronics I possessed, the size of television I watched, the possessions I could afford, what others thought of me, the places I could travel. Now it is hard to believe such childish concerns once could upset me.

Joel has taught me how fragile and how precious life is and how unconditional love can be. Many times after work when others went home or out on the town I went to the hospital to stay with Joel. We spend hundreds of dollars at the drug store. We have held Joel for many hours of the day. He has kept us housebound and cost us many nights of sleep.

Yet we love him so much. I love him so much. Piddly concerns about entertainment and material possessions seem so distant now. I am actually much happier and more content than I have ever been in my life. I look at Joel lying in my arms and I'm just so happy when he is happy and not suffering pain or having a seizure or sick.

I used to act in theatre and dinner theatre on Prince Edward Island to raise money for the Children's Wish Foundation but I never fully could comprehend being a parent of a terminally ill child. Now I can.

To accept that you cannot provide your child with all the life experiences that she or he should enjoy causes parts of yourself to die. Not just as a parent but as a human being. I have taught cistic-fibrosis kids who know they are going to die before their 25th birthday yet never fully understood that pain as I do now. I am grateful for the deeper understanding.

I love Joel. I love what he has brought to my life. He can cost me time, money, sleep, and rip my heart out of my chest but I love him no matter what. I love holding him. I love the sounds he makes. I wish I could do more for him but I am content doing what I can for him.

Harder times are ahead. I know that he will die and that I will bury my son. I will always love him and I will never regret having Joel in my life.

Joel is my son. He is a human being. He laughs. He cries. He gets annoyed. He has likes and dislikes. He gets scared when he chokes and is happy when he is comforted. He will always be loved and always be remembered.

I have a poem in my head called "Cute little guy, Doomed to die". It's a bit morbid but when I finish it I would like to share it.

1 comment:

  1. This is touching....soo nice to hear a husbands point of view....I know mine feels the same way however he is just unsure how to let his feelings out.Good Job Steve!

    Sarah Danielson