Some people call my life stressful. Some call it crazy. Some call it blessed (getting closer). I call it mine.
Once upon a time, I was a corporate lawyer. Then I was a mom sitting at the park, wondering whether to say "I used to be a corporate lawyer" when another mom asked me what I did for a living. I couldn't yet own the label "stay-at-home mom," but eventually I would.
I even became a semi-crunchy SAHM. I birthed three boys in three years. I made my own baby food. I grew a garden. I made homemade almond milk. And somewhere in there I was a part-time law professor and a strategy consultant.
Then came a horrible, no good rare disease diagnosis for our youngest son. Hunter Syndrome causes progressive loss of skills and an average life span in the early teens. There are only an estimated 2,000 cases worldwide. So at that point, I took every skill I'd ever learned and turned it toward the task of saving my son.
Because our disease community is so very small, we are widespread and connect mostly through social media. But even so, these other families, wholly unknown before diagnosis, become our family. Many disease communities find that to be true.
A collection of totally different people were all put into a room together. At some point, we look at this crappy hand we've been dealt and focus on turning it into something.
So here are 10 reasons why The Breakfast Club has become my anthem:
1. A higher power put us here. I choose to believe that it was not an accident that a tiny piece of my son's DNA went awry. It's worse than detention and oh so much longer, but in the end, I will certainly be changed by it and learn from it. We all come to the room with different perceptions. Some believe it's for punishment. Some believe it's for restoration. But choosing to connect with the others sitting in the same room and allowing ourselves to be changed is an amazing path.
2. We're all very different people. A brain. An athlete. A basket case. A princess. A criminal. I've seen them all. You might even wonder how many of those apply just to me. But just because we have a child with a rare disease or special needs doesn't make us alike, or even necessarily better people than anyone else.
3. There's a lot of swearing. There's that, but it happens mostly in my head. I do have six ears listening and three kids copying.
4. "What's gonna happen with us on Monday, when we're all together again? I mean, I consider you guys my friends." When people come together over a shared experience, especially a challenging one like having a family member with a life threatening condition, what happens when that experience fades... or dies? Many who have lost a loved one to a terminal illness have had to navigate that question. When our loved one has passed away, when we return on Monday, are we still friends? When that fire that burned us together has been quenched, do we remain?
5. Sometimes we feel the need to crawl through the ceiling and end up in a closet just to get away from our life. Running away from reality is at times both freeing and confining. And eventually we have to come back.
6. We learned the reality of "When you grow up, your heart dies." When someone you love is diagnosed with a terminal illness, you realize all the things you were chasing, all the things that consumed your energy, irritated you, were so much less important than you thought they were. Your love for someone whose life is in mortal and daily jeopardy, is like the sun burning off this cold, rigid, protective layer that had formed around your heart to let it burn in all its glory. It's painful to sit exposed, but ever so freeing. I never want to live a day with a dead heart again.
7. From basket case to beauty is a real possibility. I've watched parents reel in the days and months after diagnosis, uncontrolled, waking up day after day in a state of mess. Over time, many become experts in one area or another, and go on to advocate or help the "next generation" of families facing the same diagnosis. It takes time, but we never look the same as when we entered the room.
8. "Screws fall out all the time, the world's an imperfect place." After the initial shock and grieving period, I realized that we don't have a corner on suffering. Rare disease, chronic illness, cancer, divorce, death, terrorism. The world is imperfect. Having a child in whom a tiny little piece of genetic code went awry doesn't allow me to blame anyone, including myself.
9. Suicidal thoughts are real. We didn't fail wood shop. We failed at having a healthy child. Or so we tell ourselves in our darkest moments. It doesn't matter if it's not true, we just see all these happy and healthy children around us and wonder whether it was the McDonald's we ate while pregnant or getting pregnant too old, or too young, or too anything. Getting through the first year after diagnosis, which is overwhelming and often very dark, is easier when we hold tight to the others in the room -- especially those who failed wood shop too.
10. "It's sort of social. Demented and sad, but social." And then there's that. We swing from conversations about curtains to fears about death in the next breath. It is a unique, terrible, beautiful, hard life. But it's mine.
So the next time you pass that mom in the mall, with sloppy makeup and a glazed look in her eyes, pushing a stroller and dragging along two more kids, remember that there may not be an easy answer. She might just be me.
Sincerely yours,
A Breakfast Clubber
Melissa Hogan writes candidly about her personal experience as a rare disease mom at My unPlanned Son. She is passionate about supporting families facing Hunter Syndrome and other rare diseases through campaigns like Project Alive and books like Calmer: Medical Events with Cognitively Impaired Children. To stay updated on her latest, follow Melissa on Facebook, Instagram, and Twitter.
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If you -- or someone you know -- need help, please call 1-800-273-8255 for the National Suicide Prevention Lifeline. If you are outside of the U.S., please visit the International Association for Suicide Prevention for a database of international resources.