On Monday, April 15th, 2013, my husband and I ran the 117th Boston Marathon while I was 14 weeks pregnant. Six months later, we welcomed to the world a beautiful baby girl that we named Emerson. She joined her two year-old brother, Bennett, making us a family of 4. Andrew and I know how lucky we are that both of our children were born healthy, and that we can plan for and envision their future. Not all parents have that luxury. I think of this often lately, as I am back running again, training for my 5th marathon on April 21, 2014.
Any distance runner knows that during those long runs (and even during the shorter ones) you are left alone with your thoughts. Hopefully they are good ones that motivate you and keep you smiling. For me, these are the times that I often think (worry) about my kids. How will I get Emmie’s sensitive stomach under control? Will Bennett ever be willing to eat vegetables? Will they be happy? Will they be kind? But I never worry about whether they will live long enough to graduate high school, much less kindergarten. The week before Christmas, my house was hit with the stomach flu that seemed so ubiquitous this holiday season. Despite being sick myself, watching Ben deal with it was the hardest thing. I would have gladly taken it off his hands if given the option. I think that’s a sentiment shared by most parents when their child becomes ill. “I wish it could be me that’s sick instead.” But what do you do when your child is born sick, and there is no cure for what she has? What if the disease that your daughter has – the one causing her to live on borrowed time – is so rare that there are only a handful of other children in the country living with it? And what if, on top of that, you have two healthy little boys that need you? If you are Eileen O’Gara Linzer, you make every single day of that little girl’s life count.
Without question, the best thing about being a member of the Running for Rare Diseases Boston Marathon team is getting to meet all of our patient partners, and to be a part of a community full of love and support for people with a multitude of rare diseases. I’ve come to cherish these relationships immensely – not only with my own patient partners, but with those partnered with my teammates as well. Last year, right before the marathon, I posted something on my Facebook page about Wylder James Laffoon, a little boy who suffered from Niemann-Pick A, and whose parents Shannon and Steven chose to honor his memory and celebrate his life by creating the NPA advocacy group Wylder Nation (www.wyldernation.org). Shortly after I posted it, a friend of mine from Providence College texted me to say that he saw my post, and wanted to know if I was aware that our friend, Eileen’s daughter also had NPA. Honestly, I had no idea. He also sent me a link to Eileen’s blog (www.teamlinzer.com), which I immediately began reading. In no time, I was hooked.
It’s a funny thing, Facebook. It has a way of making you feel like you are still so intimately connected with people that you haven’t seen in years. It keeps you up to date on the goings-on of your high school, college, even grade school friends. And I love it for that reason. But it also reminds you how small this world is, and that we truly are all connected. I can’t tell you how often I find that, for example, my work friend might know my running buddy, or that my college roommate used to work with one of the moms from daycare. It happens all the time. So that night, after having read through a year’s worth of blog posts from my old college friend, Eileen, I took to Facebook to find her. And what I found, besides the fact that she looked exactly the same as she had 14 (seriously??) years ago, is that she was already a member of our “team.” She was a part of Wylder Nation, she had met Shannon and Steven Laffoon, and had been keeping tabs on Running for Rare Diseases. She knew us. She just didn’t know that I was a part of that “us.” Anyway, I reached out to her, and I’m so glad I did. Her story is just remarkable. Shortly after her daughter, Quinn’s diagnosis with NPA, Eileen made a couple of decisions. The first was that she would share her story in the form of her blog, and the second was that she would make Quinn’s life a celebration, a series of experiences that every child – every little girl – should have in her life. And so goes her blog. From getting her ears pierced to being a flower girl, to having a sleepover party and going apple picking, Quinn packed years of life into a very short 15 months. And yes, that included graduating kindergarten. And it was all chronicled with grace, humor and humbling honesty. Eileen shared with her readers the highs of each new milestone and the lows of each new hurdle that Quinn faced. This beautiful little thing, with such soulful eyes and her knowing looks, seemed to somehow be aware that she was special. I find it hard to look at pictures of Quinn without getting emotional – and I never even met her…
Eileen and her husband, Brett, were dealt an impossible situation, and they made the most of it. And in doing so, they introduced the world to their beautiful daughter, her two amazing big brothers, and to the idea that you can either suffer in silence, or celebrate what you have with everything you’ve got. There is a quote at the end of Eileen’s first blog post that I think sums up their story, and the plight of many parents of children with rare diseases.
There is a brochure put out by the National Niemann-Pick Foundation (NNPDF) that puts it very succinctly: “They only have their childhood to live a lifetime.”
And that’s what we’re going to do. Give Quinn a lifetime, as best we can.
Party of Five we will forever remain, even if only in spirit.