Walking Away and Gaining Everything
By Laura Spiegel
One month after my daughter’s diagnosis
“Life is not measured by the number of breaths we take, but the moments that take our breath away.”
When I first heard this quote, spoken by the priest who officiated my wedding years ago, it spoke to me. So much so that I purchased a plaque with its inscription and placed it in my living room for maximum viewing pleasure. Every now and again, I’d pause and remind myself to make every moment count. But over time, as with many good intentions, the plaque blended into the background and became little more than an attractive – albeit dusty - piece of room décor. I rarely found myself acknowledging it, let alone pausing and reflecting upon its meaning. Until recently.
This past August marked the two year anniversary of my daughter’s CF diagnosis. (Yes, the above quote is now a little ironic, isn’t it?) I acutely recall the moment I heard this surprising news and the feeling of “Everything has changed.” I remember our first day in the CF clinic like it was yesterday. I cried in the parking garage and did my best to nurse my daughter in the waiting room. And then it happened. That moment that is forever etched in my mind. Our pediatric pulmonologist took my shaking hands, looked me squarely in the eye, and said “Your daughter is going to live a long and full life.” She went on to say that it was her job as a physician and our role as parents to help enable this.
I’d be lying if I said that just like that, all the fear and the unknown that I’d been harboring melted away. It didn’t. But it lessened considerably, and by the time my husband and I left the clinic many hours later, we felt like we could this. Yes, we were overwhelmed. Yes, there was a heck of a lot of information that we still needed to digest. Yes, we would no doubt face ups and downs as a family. But with a strong drug pipeline and an aggressive yet compassionate doctor on our side, we could do it.
Fast forward to this past summer. Our daughter was doing very well. She was thriving on a diet rich with avocados, butter-engulfed veggies, berries, eggs, peanut butter, and the never-failing mealtime closer – a Drumstick ice cream cone. She rarely resisted her vest therapy courtesy 30-minute bribes of Mickey Mouse Clubhouse. She was a champion hand washer and had kicked the occasional cold to the curb with a one-two punch of antibiotics. I knew we were fortunate and said a prayer of thanks each night that she was healthy and happy. Yes, in August of last year, my daughter was rockin’ it.
And then there was me.
If you’d asked me, I would have said that by all counts, I was just fine. I had accepted our daughter’s diagnosis and was proud of how well she was doing. I knew that her CF, while a part of who she was, did not define her. As the months passed, when people asked how she was doing, my replies were increasingly more about her life overall (“You wouldn’t believe what she said / did the other day…”) instead of her health. It’s not that I ever took the foot off the gas in terms of her care. In any given moment, it was always somewhere on my mind. But now thoughts about her care were also intertwined with all the other thoughts that go with having a precocious toddler.
So yes, I was doing just fine. Until one day, I was asked a perfectly benign question by my boss at work. “Have you thought about what you’re going to do next, career-wise?” And just like that, with zero preamble or advance notice, I broke down. I was astonished as I sat there blubbering through an answer to her question. I told her how at the end of the day, it was really important that the work I do be meaningful. That anything that was going to take me away from my kids – especially with my daughter’s CF – really had to be worth it. In my 13 years as a working professional, I had never once cried at work, let alone downright blubbered. My boss handled it well, but the exchange left me jarred.
Over the next several weeks, I found myself revisiting that conversation over and over in my mind. What had caused that visceral reaction to such a benign question? Now, I don’t believe in horoscopes, and I’ve had dozens of fortune cookies that have made me roll with laughter. But I will share this. As the weeks went on, I found myself reflecting over one particular fortune that I’d folded up and kept in my wallet for months. “This year, your highest priority will be your family.” I found myself pausing at another message received in an English party cracker on our 10-year wedding anniversary that read, “And it’s not the years in your life that count. It’s the life in your years.” And I found myself increasingly stopping in my living room and really seeing the plaque that had for so many years merely blended into background. “Life is not measured by the number of breaths we take, but by the moments that take our breath away.”
I began to search for evidence of life in my years, and frankly, I fell short. I worked too much. I had no time – or had convinced myself that I had no time – to exercise or stay well-connected with close friends. I love to cook but more often than not found myself resorting to instant dinners at the end of a harried day. I sat in my daughter’s room in the evenings and watched her sleep, all the while thinking “I wish I could stay in this moment forever.” And then, I’d head downstairs to do more work or go to bed early so that I could put in a few hours before the kids got up and I left for another long day. The go-getter in me - the person who graduated at the top of her class and meticulously planned an ascent of the corporate ladder - would have been proud. But the real me – the one who loved nothing more than the smell of her kids’ hair and ached to spend more time with them – realized that my typical day no longer energized and fulfilled me. And I increasingly wondered, “Would I one day look back at how I spent this time with regret?”
That’s when I knew I had to make a change. After many discussions with my incredibly supportive husband and lots of serious budgeting, I shared with my boss and colleagues that I would be taking a few years off to be home with the kids. They were terrific and even imparted me with a personalized piece of art to commemorate this new leg of my journey. This art has now joined the others as a constant reminder of the choice that I made to bring positive change to my life. I’m still pretty early on, but I’m proud to share that I’m exercising more and more; I’ve become a bit of an addict to my Crockpot cookbook; and I’m again making time for those friends, family, and loved ones who I hold so dear.
More importantly, I can honestly say that I am experiencing moments each day that take my breath away. I dance in the kitchen with my kids to such greats as “It Had to Be You” and “Uptown Funk.” We run laps around the house and pretend to be either characters from the Wizard of Oz or Thomas the Tank Engine. The other night, my son said that his favorite part of the day was spending time with his sissy, and that he is so thankful for her. These are the moments – some mundane some miraculous – that have again infused my life with, well, life.
Don’t get me wrong. There are times that I think I might need an IV of coffee pre-7 AM just to deal with the shrieking of my new direct reports, and I do sometimes wonder how this detour will fit into a longer-term career path. But at the end of the day, I would not change these days and how we are spending them for the world.
As my daughter grows, she will inevitably encounter ups and downs in both her health and her life overall. While I will never be able to truly understand what it’s like to have CF, I do know what it’s like to love someone with all my heart. And so, in the midst of deciphering enzyme doses (is this a meal or a snack or something in between?) and searching for the next “it” show to motivate my toddler toward vest time, I hope that the choices that I’ve made this year will one day serve as a role model for my daughter.
For one day, I want her to recognize that she alone holds the key to her own happiness. I want her to have the courage to make a change when needed, no matter how scary or unplanned it might be. And most important, I want her to have the grace to accept that sometimes life – with all its many moments - doesn’t always turn out as planned. Sometimes, it’s even better.