Get To Know Me

My husband Kevin and I were a young married couple very much in love. We bought a home and the cutest eight week old yellow lab puppy. After some pretty intense struggles with infertility, we gave birth to four healthy children ~ triplet boys and later, a fourth son. We were a truly blessed family, living a beautiful life. Kevin and I had everything we ever wanted. Life was amazing and we were so excited for what was ahead. Sadly, what was ahead looked nothing like what was.

 

In late 2014, Kevin began complaining of some quirky annoyances. His tongue felt swollen,  slightly slurred speech, and his legs were frequently cramping. I wasn't too concerned. He was a very healthy, strong, athletic man. He was our four sons’ football, basketball, and baseball coach. But these peculiar symptoms bothered Kevin, so over the next 8 months, we saw a handful of doctors to try and get to the bottom of it all.

 

In May of 2015, while Kevin was being examined by a new doctor, he and I were laughing and joking and planning where we were going to have lunch later. And then, the unthinkable happened. The doctor completed the exam, sat us down, and told us that he was pretty sure Kevin was in the beginning stages of Amyotrophic Lateral Sclerosis or ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The doctor explained that it would eventually take away Kevin’s ability to walk, dress, write, speak, swallow, and breathe. He told us there is no cure for this disease and that the average survival time is 3 to 5 years. His words were horrifying. We were in no way prepared for what we had been told. Everything we expected our lives to be and had wanted for our family was taken away in an instant. 

 

I couldn’t eat, sleep or get out of my pajama’s. I was fully consumed with grief, fear and disbelief. After a few weeks of friends and family providing strength and support we learned about Lyme disease and an overlap in symptoms with ALS. We saw a highly sought after Lyme specialist and after examining Kevin, he believed that Kevin was misdiagnosed and had Lyme disease. Unfortunately, Lyme disease testing is unreliable and there is no test for ALS but this doctor seemed pretty certain and provided us with hope. We were taking this as a win - grabbing hope and running for our lives. Over the next year and a half, we hung onto that hope and sought advice from more than 5 doctors, none of whom specialized in ALS. 

 

After almost 2 years of numerous diets, vitamins, antibiotics, IV’s, research, praying and hanging onto hope, Kevin’s health declined. I couldn’t hold on any longer. Denial is a heavy weight and I was tired. It was time to ask if we were searching for answers or running from the truth. So, I made an appointment with an ALS specialist at Columbia Presbyterian Hospital in NY. He confirmed that, although Kevin may or may not have Lyme disease, he most certainly had ALS. We were right back where we started from almost two years ago. My heart was broken and so was my spirit. 

 

After leaving NY, we went straight home. It was time to talk to our four boys and remove the false hope we so innocently and irresponsibly placed in their hearts. We sat them down and shared the certainty of their dads diagnosis. Everyone was quiet. The only words spoken were, “Mom, are you ok?” The question struck me as odd, almost insensitive. Why was I asked if I was ok, and not their father? He’s the one that is going to die. 

 

In the days that followed, I felt regret. Why had we spent almost two years chasing false hope? Maybe Kevin would have been a candidate for ALS trials that may have slowed down the disease. We could have gone on family trips, made memories, used our time to be together and enjoy the time we had left. We did none of that. 

 

I vividly remember the summer of 2017 ~ not for the cloudless blue skies, days at the beach, or a picnic in the backyard, but for loss, sadness, and regret. I also thought a lot about those four words, “Mom, are you ok?” And then I got it. It finally made sense. You see my kids weren’t surprised by the news. By this time they had actually accepted the idea that their dad was declining and they were probably going to lose him. What they needed to be sure of was that they weren’t going to lose their mom. All of a sudden it seemed so clear. I couldn’t save our family by getting Kevin well but I could choose who I was going to be along the way. “Mom, are you ok” became my superpower. The key is to unlock our strength and freedom. I was so busy trying to control my external world that I forgot to go to the very place where power actually exists - within!

 

Circumstances don’t create our destiny, our choices do. We all have the strength and power we need within. Stop the search and start the trust. The foundation of freedom is the power to choose. 

 

 

On April 18th 2018 at 2 am on the hospice floor of St Claire’s hospital, my husband lost his battle with ALS. Upon my return home, I entered into my first son’s bedroom and shared the news that dad had passed. He lifted his head from his pillow, nodded and said: “Mom are you ok?” I said “Yes.”

 

Know that you too have a superpower. A gift of strength that I promise lies within each of us.