congenital heart defect, chdawareness, Charles George

by Charles George

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.

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 eight 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 four heart surgeries and two other major life-saving operations within the first three years of his life.

Ambiguities after spending another three months in the hospital after my son’s second heart surgery, doctors telling me that they were 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 regard to helping our son reach his developmental milestones.

We experienced unanticipated feelings of overwhelming joy and accomplishment while at an appointment with the 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 ABCs, 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

For most people, divorce, the death of a parent, financial duress and death of a spouse are viewed as life’s most stressful events, but the loss of a child is often at the top of the list, the number one most stressful event in life.

Watching my son die when he was three years old is the most devastating and traumatic event I have 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 unparalleled. 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 Moments Often Reveal Much About A Person

I believe you learn more about yourself during the most challenging times than at any other point in your life.

Throughout my life I have always thought that how a person responds during 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 six 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 three years since Thomas died, the three 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. Losing my son changed my perspectives in many ways and clarified what is most important in life.
  6. Pain and 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 as and impact us as much as the thoughts and emotions related to happiness.
  7. Perceptions of control. 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, respond 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 tested my internal fortitude in more ways than I could ever imagine. But as challenging as some events are in life, it is important to be present in each moment during the journey.

Every skill 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 three years I shared with Thomas were the best three years of my life.

At one point a friend told me that the most significant thing I will ever accomplish in life is being Thomas’s dad. I did the very best I could at being the best dad I could be to him, and I know I used every resource available to give my son the best chance at life. 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.

 


 

About Charles George

charles GeorgeCharles George advocates for children with congenital heart disease. Charles’s three-year-old son, Thomas, stayed in the hospital for about eight months out of his first year of life. Thomas lived until he was three years old. He endured three heart surgeries and passed away after complications from his last heart surgery.

Moreover, Charles is passionate about helping purpose-driven entrepreneurs create a lifestyle business by combining publishing with direct marketing. Publishing provides one of the fastest ways to create authority, build influence, and make an impact onpeople’s lives.

Connect with Charles at CharlesGeorge.com, where he discusses topics that involve publishing, direct marketing, growing an audience and building a lifestyle brand. Listen to the podcast Charles created that provides hope and inspiration to parents with critically-ill children at WalkingWithFamilies.com.

 

This page's content was last updated on Feb 11, 2019 @ 9:26 am