Today marks 10 years since diagnosis day. The day a neurologist told us that Shannon had an inoperable, incurable brain tumor. The day Dan and I tried to make sense of the fact our first baby was going to die before going to high school, and there was nothing we could do about it.
A friend asked me if it seems longer or shorter than 10 years… I think it’s a little bit of both. Time is flying by, and yet, it’s been so long since I saw her.
As I write this, I am sitting at O’Hare airport, listening to our blog playlist and waiting for a plane to Philadelphia. I am fully vaccinated and ready to see Erin for the first time since Christmas.
I did an interview this week with an expert about brain tumors. 10 years ago, when we sat in that neurologist’s office, could I have imagined that I’d work for the Mayo Clinic? No. Through my work, I’ve had the privilege to cross paths with many people who were a part of Shannon’s care. My job at Mayo Clinic is a gift that came from Shannon. Writing about our journey here on this blog led to opportunities to write for Mayo Clinic. I don’t ever forget that.
I am so excited to see Erin. Last week for the first time in her life, I wasn’t with her on her birthday. She seemed fine with it… I’m the one who felt bad . 10 years ago, did I imagine that Erin would go to school 1,000 miles away, make a new life with new friends, and be on a path to a career in medicine? No. Erin charting her own course and choosing health care as a career is a result of Shannon’s journey, too. Erin learned at age 10 that time is short and you should live life out loud while you are able.
Dan is home taking care of pets this weekend, so we are apart on this diagnosis day, although he did get out of bed to take me to the airport at 5am this morning. Our marriage has not only survived the loss of a child, but we’ve grown closer and we’re ready to grow old together. (Some might say that’s well underway…)
We reflect on the people that have come in and out of our lives. We lost some connections – those who just didn’t know what to say to us or couldn’t look us in the eye, afraid of who we now were.
But we gained so much more. Those people who stood up those 10 years ago and said, “We are here” and then never left. And those who joined us on this journey at various points along the way, drawn in by Shannon, or Erin, or the story we shared. We are grateful for all these people who allow us to say Shannon’s name and listen to our stories.
If you ever know someone who loses a child, please say their name.
So, 10 years on from the day everything changed, we’re OK. We’re even happy. We get to watch Erin grow up which is fun and amazing. And yet, we can’t help but wonder, what would Shannon be like now? We see her friends graduating from college, starting careers, getting married. It will always hurt that Shannon didn’t get to grow up and we didn’t get to experience those things with her.
I mourn the things I thought would be that never will, but I am still grateful for the things that are.
So, today, I will hug my daughter for the first time in 4 months and I will hear about her busy life and her goals and dreams and that will be enough. It is what we have, and it is more than enough.
All At Once from Jack Johnson just shuffled up on my playlist…
There’s a world we’ve never seen
There’s still hope between the dreams
The weight of it all could blow away with a breeze
If you’re waiting on the wind, don’t forget to breathe
Cause as the darkness gets deeper, we’ll sink and so we reach for love
At least something we could hold
But I’ll reach to you from where time just can’t go…
