Most people think of grief as an emotion, like the feeling they have when someone dies. In reality, grief can occur very much occur without any kind of death involved, and it can be as real and raw as if it were because of death.
In May of 2020, my Husband died from an Aortic Aneurysm. His death was sudden, unexpected, and life changing for my family. That was cause for grief. However, it didn’t end there for my family.
In June of 2021, my youngest son Lucas was diagnosed with a connective tissue disease. The doctor explained that he had several things wrong with his heart. As I sat there is the hospital room listening to the doctor, I felt like I was in a Peanuts movie with the teacher talking “Waaa Wa WAAA Wa WAAA WAAAAAA.” The doctor was talking, I could see his mouth moving…but my brain was catching very little of what he was saying. I felt frustrated with myself for not being able to concentrate. I mean, come on, I’m an intelligent woman and usually catch things even others do not. I have always had a keen ability to listen to and read people. Yet finally, I had to say, “OK, I know I look calm, and I’m looking at you. But I need you to repeat everything you just said to me.” I had to snap myself out of my fog to be present to my son’s condition.
After the appointment, we headed to the parking garage. I got to the garage, got the kids in the car, and started to cry. I was holding back as much as I could knowing that seeing me cry was upsetting to my kids. The kids were starting to panic as they didn’t hear everything said between the doctor and I and didn’t understand much of it. They did catch some of it, and what they caught was scary to all of us. Hearing words such as “fatal, pain, never going to be able to have life insurance or private insurance, he will never be able to play sports and have a limited activity in life with lots of restrictions, and many surgeries….” Our emotions we warranted for sure.
Now, as I’m trying to process for myself what I just heard, I also needed to help my children process and calm their fears. And when you’re scared as hell, that’s a tall order. You see, I don’t lie to my kids, ever, and I wasn’t about to start. I wasn’t going to tell them that everything was ok when it absolutely was not. So, I said the only thing I could think of. “Kids, he is ok right now. Today he is healthy. We will figure everything else out in time. Let’s stop and take some deep breaths.” Then, I took us all into a breathing meditation (which I can teach you if you want to work with me). Once we were calm, we went home.
In the days following, I went through so many emotions. At first, the more prominent one was anger. It would come in waves. I was thinking thought like, “Why do we have to lose my husband, their father… and now my baby has to experience this? His life is never going to be the same. It’s not fair. Why does my family have to have so much pain?”
After the anger subsided, the grief hit. It was like I was grieving the loss of my son’s “normal life”. I had a story in my mind of how our lives were supposed to be. That was already shook when my husband passed away. I then created a new story of how our lives would be and how I was going to build us a happy new life. Getting the news about my son seemed like it took away this new life story I had made up. The doctor had painted a bleak narrative. It caused great not knowing what our future was going to look like.
Fast forward to September of 2021. I received the call from a genetic counselor to inform me that my son’s condition is called Marfan Syndrome. I had from June to September to process his condition, and I was not glad to find a name to call it. However, when the genetic counselor called, she had a much gentler way of speaking to me. She also painted a picture of a more hopeful future for my son. I felt like I took the news well, all things considered. But I still had a lot to process with this new knowledge of what my son was going to live with for the rest of his life. However, I felt like I kept myself in a good head space. I didn’t want to feel “blessed” for knowing what he has. Nor did I want to go exude doom and gloom and be projecting, “This is horrible…why is this happening to us.”
So, I ended up somewhere in between.
What felt helpful for me to stay in a calm, centered space where I could make decisions for Lucas and to separate him and who he is from his diagnosis. “This is my son is Lucas, and he has a condition called Marfan.” Not “My son and his condition…” as a defining concept. Let’s face is, we have all noticed how people will speak of their medical condition as “their” condition. I've heard people say, “my fibromyalgia” or “my autoimmune disease.” I didn’t want Lucas growing up thinking of himself as his Marfan. He is Lucas, he has his own spirit, his own soul his own life, and he has also happened to have a genetic condition called Marfan Syndrome. It is a fact. We then worked to discover what we needed to do next and how we could plan for the future. If I stayed in facts about his condition, then I was better able to serve him and his needs.
At the end of November of 2021, I had yet another hospital visit for Lucas. While his numbers remained the same (good news), the doctor explained that his Aortic Valve was not working fully enough to support Lucas’ body long term. He would grow out of it by puberty, maybe earlier depending on his growth. We should expect his first heart surgery to replace the valve between the ages of 10 and 12 years old.
A week later, I had an appointment for Lucas to see the ophthalmologist. The doctor explained that Lucas cannot see well and needs glasses. Then he explained that the lenses of his eyes are not correctly attached (with Marfan Syndrome, the connective tissue disintegrates each day). Even though he will receive surgery in the future to intervene, it is inevitable Lucas will lose partial to full sight at some point in his life.
I was warned of all the complications, but reality was setting in. I went home and cried. I did not stop crying for 5 days. I drove my kids around crying, went to the store, cooked, cleaned, did all the things necessary to support my family…but the tears did not end. I went to sleep crying and woke up crying. At night, when the kids went to bed, I would gutturally cry. It was a mournful cry that felt so raw and untampered. All the grief, all the loss finally swept over me. And I had to completely let go of the story I had told myself of how life was supposed to be.
I know that life is 50/50. Life is full of love, gratitude, joy, fun, celebration, and much more. It is also full of grief, loss, heartache, pain, hard decisions, and so much more. If I didn’t love my husband and son so fiercely, I wouldn’t be able to feel this intense grief. I don’t want it to go away. Pushing away the emotions traps them in my body creating more negative emotion and disease. Rather than resisting those emotions, I choose to be with them. There is no easy way to feel intense grief, no outside thing can help it go away or dull it. It just is. Being with it opens more space in your being for undiluted love, a raw love and deep understanding of yourself and others.