A sad realization

I think it’s safe to say this has been one of the most stressful weeks of my life.

I know my son so innately. This trip, including today, has proved that. I couldn’t know him more if he were still being formed inside my body.

I have spent all week, in Hawaii no less, on eggshells. I’ve been waiting for the other shoe to drop every second. Every time my Mom called my name, “Wendi!” (which she did plenty), my heart dropped inside of my chest. And she didn’t even need to call my name, I’ve never watched a human being so much in my life. Every single day, I know Dave was moments from another seizure. These ‘miracle drops,’ so far, are truly a miracle. I KNOW when he is going to have a seizure, and it’s been non-stop on this trip. And today alone, we have been DANGEROUSLY close to one two different times. At one point we got in the car and Dave turned off the radio. And if you know Dave, you know that is so unlike him.

I have been on the verge of tears since we landed in the states. Everything I have been holding in wants to explode out of me. But I’ve held it together to keep everything calm for Dave. I just left Dave upstairs with Ronnie to come down and try to get some housework done. Ronnie came running down calling my name and I just exploded in tears. I think I’m living a life of PTSD, and let me tell you, it isn’t fun. Anytime anyone calls my name with any kind of urgency, I am triggered.

I am also incredibly sad. I LOVE traveling with my boy. I have been planning the trips to the Caribbean with him in my head for years. Now seeing what this trip has done to him, I know I can’t have him travel on planes. I didn’t realize how much toxicity/radiation comes from airplanes. And if I didn’t believe it, I have my son showing me LOUD and clear that this is true.

I have always known, my whole life, that I was the 1%. Whenever I exhibited any type of side effect, doctors always said to me, “Wow, that only happens in like 1% of the population.” And now my child, is not only the 1%, he is the 1% to the millionth degree. He is more sensitive to toxins than anyone I could have ever dreamt. And because of that, now another dream has died …. the dream of traveling the world with my boy by my side. Sadly in fact, I now know that I will need to travel without him; not only for his safety, but for my sanity and respite.

This life with my beautiful and sensitive boy has taught me so much. I could have only learned the things I now know from living this life, with a sensitive child. And if someone reading this doesn’t believe a word of what I’m saying, then why does every measure and step, every supplement and every avenue to have ‘clean’ living, that we’ve taken to help him, worked. Because it’s true, that’s why. And I’m just so thankful to have amazingly brilliant doctors and friends that have helped guide me along this journey and taught me all I know to be true. My son has MCAS, like me. Mine presents with anaphylaxis and his presents with seizures. That means that anything that is toxic, or things he is sensitive/allergic to, can trigger seizures.

I still won’t let my guard down. And I am thankful at least that I have this knowledge and these tools. I can only take it day by day and stop and smell the roses as often as I can.

Today, I have done everything I can do today to postpone this seizure that wants to come out (the miracle drops, the EE system, salt/clay bath). I’m just praying I can keep it at bay and get him detoxified, to resume his ‘clean’ life, now that we are back home.