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.
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.