Over the last six years of my life, I have experienced my greatest joy and my most devastating challenge.
The biggest joy was welcoming my son, Thomas, into the world upon his birth.
The biggest challenge that I have ever faced in life is my son being born with congenital heart disease. Congenital heart disease affects 1 out of every 100 babies born today. It is the most common birth defect, and more children die from congenital heart disease than cancer or any other cause of childhood death.
The challenges parents face when doctors inform them that their child’s heart is not forming correctly in utero are significant.
Entrepreneurs and first-time parents often have a higher tolerance for uncertainty and ambiguity in life.
Having a child born with congenital heart disease increases the uncertainties in life exponentially.
Uncertainties such as spending 8 months of the first year of my son’s life in a hospital over an hour away from my home as he fought for his life each day.
Uncertainties such as watching my son go through 4 heart surgeries and two other major life-saving operations within the first 3 years of his life.
Ambiguities after spending another 3 months in hospital after my son’s second heart surgery, doctors telling me that they are not sure if he would ever walk, or how he would develop cognitively.
Upon bringing Thomas home, my wife and I both invested every ounce of energy, all our knowledge, skills, and resources in regards to helping our son reach his developmental milestones and achieve them.
Ambiguities such as having the unanticipated feelings of overwhelming joy and accomplishment while at an appointment with his developmental pediatrician, when the doctor announced “Six months ago, Thomas was scooting on his butt and saying “Mom.” Today, he has over a 200-word vocabulary, knows his ABC’s, can count to 20, and he’s throwing a spiral football. His “receptive skills are age appropriate.” “Receptive skills age appropriate” means mentally and cognitively Thomas had caught up with other children his age. This was one of the happiest days of my life because of all the hard work, time, effort, and energy that my wife and I invested in Thomas gave him the best opportunity and chance at life.
These are just some of the challenges that my wife and I experienced and overcame to help our son.
But as significant as these challenges were at the time, they pale in comparison to our most significant and devastating challenge.
Experiencing Life’s Most Stressful and Devastating Event.
If you look at many of the lists about life’s most stressful events divorce, the death of a parent, financial duress, and death of a spouse are some events listed as life’s most stressful. Often these are listed within the top 5. But many of the lists that have child loss as one of the events, often rate the death of a child as the #1 most stressful event in life.
Watching my son die, when he was 3 years old is the most stressful, devastating, and traumatic event that I have personally endured. It’s an event that I still struggle with to this day.
The emotions, internal turmoil, and tumultuous feelings upon losing a child are paramount. The emotional lows are so unbelievably low! Some days just getting up and trying to be present in that moment was a significant accomplishment.
Often, people ask me if losing a child gets easier with time. My response is “Easy is not a word I associate with any aspect of losing a child. Over time the grief, the emotions, and learning to live without your child does change, but I don’t believe losing a child ever gets easier. However, things do become different.”
Life’s Most Challenging Events Often Reveal Much About A Person
Honestly, I believe that you learn more about yourself during the most challenging times in life than at any other point in your life.
Throughout my life, I have always thought that how a person responds during their life’s most challenging times reveals more about their character and who they are than during the good times of life.
What have I learned over the last 6 years, since my son’s birth and death?
1) Often life’s greatest challenge is also the greatest reward. – The best three years of my life were the years I had with my son. Other than the 3 years since Thomas died, the 3 years he was alive were the most challenging, but I have never had more fun, felt more love, or felt more responsibility than being Thomas’ dad. I enjoyed every second of the time we shared. Today, this is what I miss and crave the most.
2) Be Present In Every Way – You can’t change the past, you plan for the future, but live in the moment.
3) Healing – One of the keys to healing from a significant and devastating loss can be to help others going through similar circumstances.
4) Measuring Success– Often, the best measurement of success is how much time you share and invest in a person.
5) Defining What Is Important– After experiencing 3 years with my son and then losing him, it changed my perspectives in many ways and clarified what is most important in life.
6) Pain & Happiness Are Intertwined– When the lows of life overwhelm you, it’s okay to feel that way. We are human, and many of life’s thoughts and emotions associated with pain are as significant and impact us as much as the thoughts and emotions related to happiness.
7) Perceptions of Control– As parents and entrepreneurs as much as we try to minimize risk, we are not in control of all the events that happen in our lives as much as we think we are. Our attitudes, actions, and perspectives influence our lives greatly, but not everything, good or bad, is within our control.
8) Persistence Matters– I understand improvise, adapt, and overcome in more profound ways today, than before the time I shared with my son.
9) God’s Grace Is Real.
10) Perspective Counts– Your perspective and how you relate and adjust to the events that happen in life has more to do with the outcome of your life, than the actual events.
Adapting to life’s most difficult challenges can be significant and test your internal fortitude in more ways than you can ever imagine. But as challenging as some events are in life, it is important to be present in each moment during life’s journey.
Every skill that I have learned and acquired in over twenty years of being self-employed and an entrepreneur, I used to help my son and family with his challenges. Plus, I even learned new skills along the way.
The time, I shared with Thomas, was the best 3 years of my life.
At one point, I was told by a friend that the most significant thing that I will ever accomplish in life is being Thomas’ dad. I know I did everything I could and used every resource available to give my son the best chance at life. I did the very best I could at being the best dad I could be to him. I will always be grateful that my wife and I gave Thomas the best life we possibly could.
Most importantly, every moment Thomas and I were together he knew how much I loved him. It is a love that he reciprocated back to his mom and me. Knowing and experiencing that type of unconditional love is life’s greatest gift and reward!