When we have children, our lives are forever changed. For some parents the changes are minor. The family grows, but the flow, friends, and routines are only slightly altered. When Justin was born, we were in this category. He was so easy. I could take him anywhere, and he just adapted. My routines, friends, and schedules were not disrupted. Emily was born, and she really shook things up. She turned our lives upside down. We were suddenly parents of a disabled child, and our world looked different. We became part of a club we never wanted to be in (or even knew existed). The club is full of people facing challenges, pain, grief, and sadness, but also joy, resilience, compassion, pride, and unconditional love.
A friend and I were talking last week. She mentioned that she has experienced very little loss in her lifetime. I thought she was fortunate, and I began to think of the journey I have traveled. I lost my dad and grandparents when I was a child. These losses were difficult to process, but they were predictable to my young mind. We are born, we grow old, and then we die. Death is the goal. The reality is that growing old is not always the journey for many of Emily’s peers.
Emily’s disability has shown us a life of loss. It is not rare but rather a regular occurrence in our community. Many of her peers have passed away over her lifetime. I grew up hearing that no one should outlive their children, yet we experience this regularly in our community. The community of chronic illness, disability, and rare diseases and disorders are one where many parents lose their child. Parents outlive their children and must figure out a way to go on. They are not brave and survivors by choice but because they have to be.
I have attended many services for children. The parents and family share the beauty, joy, and goodness their child, grandchild, sibling, or friend has contributed to the world in a short time. I have personally experienced it myself. They have taught others to slow down and appreciate the joy in small accomplishments. They have brought out the best in others and softened even the hardest of hearts. They have shown me and others what unconditional love looks like. These children do not care about your nationality, skin color, or how much money is in your bank account. They possess the best qualities of humans. These young lives have made a difference. Anyone who was blessed to meet and interact with them has been forever changed. They teach us to love unconditionally. They show those around them that there is joy in even the hardest journey. I have watched these children laugh and smile through physical pain and discomfort.
It is said that in death, it is not the day you are born or the day you die that matters but what you did in the dash. The dash is everything. These young superheroes have done more with the dash than some people that live to be 100. They have loved fiercely, fought valiantly, and embraced the life they were given. They have taught the adults around them to continue to fight for others in their name after they are gone. Many of their parents have become some of the most impactful advocates for change. They raise money to find cures and start foundations to increase awareness. They preserve the memory of their child and use it as a catalyst for change.They fight for cures and change so that other parents may never have to worry about losing their children.
I remember speaking to one parent a few months after her son passed. I was curious how she was able to move forward after such a tremendous loss. Her response is something I have always remembered and fully embraced. She said, “All life is a gift from God. It is not a given. We do not know how long we will have the gift. Each day we must remember to cherish the gift because one day it will be gone.”
Conversation for Change 