Category: Dying

I Hope there are Art Classes in Heaven

Today my oldest son, Christian, would have turned 31. He passed away almost 2 weeks after his 21st birthday. We are going to the cemetery to clean the headstone and set some gifts out for him. I am also going to take a pottery class, which starts tonight, in his memory.

Even though he had physical limitations, Christian enjoyed making homemade greeting cards, drawing, and working with all sorts of media in art class. When he was in high school, his art teacher nominated him for an award in honor of a Zach Culliton who also overcame his disability to create a beautiful painting of a fish. Christian’s name remains listed to this day.

Christian took a lot of time and effort in making the picture which earned him the award. It was a very exciting evening and so many of our friends and family showed up to celebrate. I even met Zach’s mother and she was very kind. Zach passed away not too long before I met her. I hope to see her again.

Christian was always focused on his abilities instead of his limitations. He made numerous Star Wars lego models, enjoyed doing puzzles, and put his best effort into everything he did. On one particular project when he was in high school, he had to draw a creature made from three different real animals or insects. He then did a ceramic rendering of it. I have it sitting on the table today to remind me of his beautiful art and to give me strength to step outside of my comfort zone for 6 weeks on Saturdays for a couple of hours. I really hope I enjoy it and that pottery will be one of my gifts.

Like many of the hand made greeting cards Christian made for me over the years, I want to make some beautiful pottery for him. I want to picture him smiling down from Heaven. My heart is heavy and I would rather have Christian here to bake his favorite chocolate cake and order him pizza for dinner. I imagine he is doing something far better than anything this earth could ever provide. Happy Birthday my dear son. I know you are having the best time building unlimited lego models and making beautiful pottery because in Heaven, you are not sick. I love you and miss you with all of my heart and soul.

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This was drawn by my dad shortly after Christian passed away.

The Beauty of the Lord

On the evening before Christian passed away he told me that all he wanted was to be able to look at things without being in pain.  He wanted to watch his finch, Kiwi, hop around or relax in his cage.  He wanted to gaze at birds at the feeder, beautiful sunsets, and stars in the night sky.  Little did I know these were some of the last words he would say to me.

Tomorrow marks three years since Christian left this world to be with the Lord.  Many think that with time it gets easier, but in some ways that is not so.  It adds on another year since I have heard his voice and seen his sweet face.  The ache in my heart feels stronger at moments and I remember things I would rather forget.

A few days ago I came across Psalm 27:4  “One thing have I asked of the Lord, that will I seek, inquire for, and require:  that I may dwell in the house of the Lord all the days of my life, to behold and gaze upon the beauty of the Lord and to meditate, consider, and inquire in His temple.”  Even though I have read and meditated on this verse before, it moved me to tears.  I remembered what Christian said and I wondered if he knew he was going to die.

This scripture, among others, moved me to make more of an effort to gaze at the beauty of God’s creation and capture it in photographs.  I find beauty in seeing the dark outline of tree branches against an autumn sunset, a patch of light on the tract books at work, a house finch resting on the shepherd’s hook, flowers on my table, squirrels playing around a tree at the park and Canadian geese lying down in the grass.  In honor of my son I encourage you to take a photo of something beautiful and post it on social media.  Noticing God’s abundant blessings and sharing them encourages others to focus on the goodness of God and also spreads more joy.

A Necessary Truth


There are mornings when I am doing my regular Bible study when I come across something so profound that I will always remember it.  I read a quote by Bronnie Ware from her book The Top Five Regrets of the Dying:  “I wish I’d had the courage to live a life true to myself, not the life others expected of me.”

Ware worked as a palliative caregiver.  Palliative care involves the care and support of a patient faced with a life threatening or terminal illess.  It also involves improving the quality of life for the patient as well as the patient’s family and friends.  I had no idea such a word even existed until after my son passed away.  I knew what hospice was but in my son’s final year of life we had no support and no one to even tell us what support was available to us.  It was a fearful, traumatic time in our life and has led me on a mission.  I have started to write a book about my experiences with raising two sons with Duchenne Muscular Dystrophy and losing my oldest son, Christian, to the disease.  No one should have to deal with end of life issues on their own.  So many physicians are in the dark about Duchenne Muscular Dystrophy and it is not uncommon for them to feel discomfort about discussing end of life issues.

A physician came to the house to examine Christian about a year before he passed away.  He had nothing to say to me and later I received a copy of his notes from the visit – notes that did not even make sense.  The closest thing ever said to us during Christian’s life that even came close to the reality of his prognosis was “you need to talk to the nurse about signing a living will.”

Christian’s passing came swiftly and without much warning.  We were alone and had no idea he would be leaving us that dark Monday morning.  Looking back over 2 years later, it hurts, but I know that harboring bitterness and resentment towards the medical community will not bring him back or ease my pain.  I can only use this experience as a driving force to inform others that they do not have to face the eventual passing of a loved one alone and without the truth.

After reading Bronnie Ware’s blog post I realized that I am not waiting until it is too late to reach for my dreams and set goals consistent with my values.  It is never too late to use my pain to ease the pain of others. That, ultimately, is my goal: to prevent others from having to go through the avoidable hardships that I’ve suffered.