Joyfully Grieving

My caregiving journey began when my son was born with heart, lung and kidney failure.

I was twenty years old and he was my third child. Being a young mother already had its challenges, but nothing could have prepared me for what was to come. This journey of compassion taught me and my family a lesson that would change our lives forever. We learned that by focusing on the power of love instead of the fear of loss, that it would heal us every day from within. This became the foundation of my book, Joyfully Grieving. 

My story starts when my son was born without a heartbeat. The doctors told me that he would not live through the day. Against all odds, he survived. This is when I learned the power of faith. I was not in control of my own son’s fate. 

It took five years for a clear diagnosis and another twenty-five to know how to treat his syndrome. The first few years were the roughest, yet the most transformative for all of us. It was a constant battle to maintain hope. Yet, it was the struggle itself that gave us the willpower to search for new meaning and purpose. I kept a jar of mustard seeds on my kitchen counter to remind me to keep holding on. How could I continue to juggle my other two children, my job, my family and my life? 

I was determined for this journey to become much more than just a tragic story for all of us. Little did I know that it would be my son who showed us the way. We focused on what worked and took it one day at a time. 

When my son turned eight, they found a brain tumor. We met with nine specialists all who worked as a team to prioritize what he needed to keep living. Maintaining joy grew more and more challenging. 

As my son’s condition worsened, he became aware on a daily basis that he was closer and closer to dying.

I watched him pray and set his intention to seek his own joy within himself. He began to focus on who he truly was as a person instead of what his diagnosis was. He taught me to do the same. We started living our lives again. It was important to him that we do exactly that, live our best lives.

His strength made us stronger. But no one can ever be fully prepared for the end and what that means. It was an emotional roller coaster, always being at the brink of losing him.

Allowing each other to be wherever we were in our grief was key. It’s not easy to balance even life’s basic needs while in a state of constant crisis. It takes practice, especially when everyone is in so much pain. Grief was an uncomfortable new normal for all of us.

We learned to just surrender to “what is”. While grieving my son, I was also grieving my inability to be the constant rock I thought I should be. However, I trusted the process and allowed it to lead me.

His last days brought healing to our family. As he left us, we laid down the fear and traumatic memories that no longer served us. 

Releasing the pain and suffering of the past has been an ongoing process. But this was not the end. It was just the beginning….

My two oldest grandchildren were then diagnosed with the same syndrome. Now I am looking in the mirror at my own daughter following in my footsteps, chasing this generational disease.

Although Joy and Grief will always be a part of our lives,we endeavor to live our best days every day,

                                       …because we keep choosing love.