The other day I was reading a book. It was a reflective book, one that I turn to when I need a little inspiration. I’ve read it many times before when suddenly I came across a passage that blew my socks off. It was so striking, I couldn’t believe that it had been sitting there in that book the whole time. How could I have missed this amazing passage? I’ve read this book so many times! It made me wonder if I had just skimmed over that part before and not really read it or if I had read it the whole time and was just now ready to begin to grasp that concept.
When I first learned about Thea’s diagnosis, I remember the feeling of not being ready, of not being able to really hear the diagnosis. That part of me thought that after we got out of the hospital, things could just go back to the way they were before. Our daughter would be perfectly fine. The diagnosis lingered in the back of my mind, mysterious and hard to understand. The research article blurred in front of my eyes, full of medical jargon that I didn’t completely understand.
One of my colleagues asked me why I had returned to work so soon after such a devastating diagnosis. I struggled for a moment to answer her. Part of the reason was logic. Thea was recovered and ready to return to her normal life so I should save my days off for when I really needed them. This was the reason I shared with her, but another part of me was back because it was easier to be in my old, normal routine where everything was fine and back to normal. I didn’t want to sit at home digesting any emotions right now.
Another colleague stopped me after I returned to work after our long hospital stay. She also had a friend with a child who had a rare disease diagnosis. “I’ll give you her number,” she said. “She’s amazing.” Then she rattled off the list of things this mother had accomplished since her child’s diagnosis. I wanted to listen, to take the hope that she was offering me in this woman’s journey with her daughter, but I just wasn’t ready. I was still on the floor, having hit by a hammer that I hadn’t really believed would be coming. I couldn’t imagine myself being this amazing mother who had risen above a devastating diagnosis and done something to make the world better. In fact, I didn’t want to hear about this mother at all. I guiltily exited out of the conversation as soon as possible. I wrapped myself back in the blanket of “This isn’t happening to me.”
In the months that followed, when I told people about Thea’s diagnosis, I only cried once at work- right after I got out of the hospital as I explained things the best I could to my boss. After that, I just went back to work. I explained the part of Thea’s diagnosis that I understood and then I moved on.
I think it took me a month to really start opening up a little. It took another month before I approached my colleague who worked across the hall from me and also had a child with a rare disease and asked her about some resources she had. It took several months before I picked up the phone to call another T2 family, the Lopez family, that was willing to be contacted. Maybe it was three months before I was able to touch some of the grief that I wasn’t ready to feel. There are still times at the doctor’s office, hearing a news story, or doing a fundraiser where I don’t feel ready. When I’m sure that a big part of me is in denial about this whole rare disease thing.
When I welcome new families to our Tango2 group, I feel for them. I remember the shock of being newly diagnosed. Some of them are further along in processing the information than I was when I made the Facebook group, not really believing that it would help but still wanting to feel like I did everything that I could. Each time a new family joins, I can feel the care and understanding from the other families as we welcome them with love because we know the depth of what they are going through like no one else can. Sometimes the families are willing to talk and share and sometimes they are not. When they don’t respond, I get it. Sometimes you want to know there are others out there, but you just aren’t ready. When I was ready, I was grateful to meet other families who understood. Other families doing the work needed to stand up and keep moving after their hearts had been broken. It’s nice to know that when you are ready, someone is there.
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