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“Mom, are you ok?” Four words that gave me my power back

Raise your hand if you have ever tried so hard to maintain control? Me too. You see I had four beautiful boys (three of whom are triplets) It’s so funny, whenever I share that part people’s expressions go from interested to totally frightened. You should have seen my husbands face when we found out!!

Anyway, I also had a husband that I adored, and who adored me. Life was pretty darn perfect. And I was going to make sure it stayed that way and ran a home filled with organization and order. I controlled the chaos of four busy boys, a husband who worked full time and coached all their teams as well as running my own small business. I had it all figured out and I had it ALL under control. So I thought....

I am here to share with you today, three important lessons that I learned about control:

  1. What is it and do we ever REALLY have it?

  2. My story of tragedy and zero control

  3. How my powerlessness turned into my superpower

So first, what exactly is control anyway -

The definition (according to Google, so it must be true) says; verb means: to order, limit, or rule something or someone's actions or behavior. The noun means: the act of controlling someone or something or the power to do this.

You see what I know now is that I was NEVER in control. I wasn’t even in charge. This worry driven approach was doing more harm than good. My need to control was rooted in complete fear. Fear ran the show, in full command. Fear led my need to control the outcome, have complete authority over all future events and demand certainty. But control is an illusion. An illusion that we feverishly chase endlessly, and with little success. A temporary attempt to keep any anxiety in check and the assurance that life will run smoothly. My attempt at keeping rock solid security. This brings me to my second topic…tragedy and loss of control.

I can remember it like it happened yesterday, the triplets were 15 and my youngest son was 12 when my healthy, athletic husband began to experience some odd symptoms that no one could explain. It was probably after about the 3rd or 4th doctor that we found ourselves in a neurologist specialist office. I remember that day so vividly. We were going to go out to lunch right after the appointment and I couldn’t wait. The doctor examined Kevin and did an Electromyogram (EMG—a test of the muscles and nerves). Kevin was getting a lot of leg cramps so this seemed appropriate. We had no idea what was coming next. I can still feel the the doctors words wrap around my neck as I gasped for air. 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. I couldn’t sleep, eat or get out of my pajama’s. I was fully consumed with grief, fear and disbelief. Our beautiful world was shattered and I could do nothing about it. After a few weeks of friends and family providing strength and support we learned about Lyme disease and an overlap in symptoms with ALS. A friend shared a LLMD ( Lyme literate medical doctor ) who had saved someone she knew from a misdiagnosis of MS. This particular doctor treated her for Lyme disease and in the end she was fine. This was the answer. I felt it in my bones. Kevin was misdiagnosed. I could feel myself gaining ground. Taking back control. Sure enough, we visit the specialist and he believes Kevin has been misdiagnosed and has Lyme disease. Of course Lyme disease testing is unreliable and there is no test for ALS but this doctor seems pretty certain and I’m taking this as a win. Wow!! This was super exciting. Control was back and my grip tightened. I read every article about Lyme disease, found a man online that had experienced the same misdiagnosis and was now living a healthy life. Moments when Kevin felt less than hopeful I read him articles, cheered him on and convinced him that he was going to be fine. After all, don’t forget, I was back in control! After almost a year and a half of articles, specialists, diets, treatments, therapies and IV antibiotics, Kevin wasn’t getting better. He was actually declining. I couldn’t hold on any longer. Denial is a heavy weight and I was feeling exhausted and weak. I needed to have a very difficult conversation with my myself and my husband when I asked if we were searching for answers or running from the truth. It was time to get back in touch with the ALS community and see another specialist. We went to Columbia Presbyterian Hospital in NY. The doctor examined Kevin and shared his findings. His exact words to us were “I don’t know if you have Lyme disease or not. What I do know is that you have ALS.” Another smack in the face. Another reminder that I had zero control. This time I surrendered. I had no strength and I had no choice. I was forced to replace control with acceptance. 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 the news. Dad does in fact of ALS. 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? After all, he’s the sick one. He’s the one that is going to die. I thought about those four words for days. And then I got it. I finally got it. 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 didn’t have control over Kevin’s illness. I didn’t have control over losing my husband or my kids losing their father. But I did have control over something - ME! I could control me. So my third and final point is “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 control and power actually existed - within.

Circumstances don’t create our destiny, our choices do. You have all the control you 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.


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