Jacob is doing awesome. There’s no question of that. He has amazing doctors, a wonderful nutritionist, and his condition is well managed. But let’s face it… “well-managed” is not the ideal. “Cured” is the ideal. And there may be hope on the horizon!
Yesterday, I ran across this article: “Ex-Pfizer Exec Gutierrez-Ramos to Lead Synlogic’s ‘Smart Bug’ Plan.” It sounds like science fiction. The concept is that scientists can engineer bacteria to find a disease or infection, treat it, and then self-destruct. You would think they would start going after big fish first – breast cancer, heart disease – but instead they are first going to target UCDs!
“Given this is a new, unproven technology, Synlogic’s strategy is to start out going after a few rare diseases, where the ‘benefit-to-risk ratio is extreme,’ and the company can know quickly whether it’s onto something, [CEO Gutierrez-Ramos] says. Its first two candidates will target urea cycle disorders (UCD), the name for a group of genetic diseases that trip up the body’s waste-disposal system; and phenylketonuria (PKU), an inherited disease characterized by the abnormal buildup of an animo acid called phenylaline…”
Can you imagine? It’s like a real-life magic schoolbus filled with citrullinemia-fighting ninjas. What if Jacob could be cured – really cured, not liver-transplant cured – with something as simple as a shot?
I have now been exclusively pumping for a little over four months. That means that I have hooked myself up to my pump about 850 times, and have spent approximately 220 hours or nearly 9 solid days attached to my trusty Medela Symphony. It also means that I have earned this awesome award…
Do I think about quitting? Yes, all the time. I fantasize about
throwing my pump off the Sunshine Skyway Bridge bringing my pump back to Walgreens and being done with it. I am still angry that citrullinemia stole my nursing relationship with my baby. Some days I can’t stand the thought of washing and sanitizing yet another bin full of bottles and pump parts. The reason that I keep attaching myself to the pump day after day is complex. Yes, it’s love, but it’s also pride, determination, and I imagine a healthy dose of biological imperative. At the end of the day, I have this sweet face (and those chubby thighs, nom nom) to show for it. And so I keep marching on.*
*Figuratively, of course. The cord on the pump is only a few feet long so I can’t really march very far 😉
Today’s post is about me. Which of course means it is also tangentially about Jacob.
I woke up this morning into a new decade. That’s right, I turned 30. And for a brief moment I panicked. Where did my 20s go? What have I done? And does any of it matter? Is my circuitous path actually leading anywhere?
As I was having this existential crisis, this picture came up on my timehop:
It’s from three years ago, on my 27th birthday. We were getting ready to move to New York City, where I would earn a masters degree in education leadership. Before leaving Florida (we thought permanently), we decided to finally visit Weeki Wachee state park and see the mermaid show. I remember that I had just gotten my nose pierced (a short-lived piercing, as I had to apply for jobs less than a year later) and I was worried that the little diamond would come out on the water slide. I went anyway. It was nuclear hot outside but the spring water was icy cold. I also remember watching a silly reptile (or bird?) show, and my husband and two wonderful friends unquestioningly indulging my enthusiasm about it.
And then I realized that my 20s were full of beautiful little moments like that, punctuated by a series of big moments. I graduated college. I traveled to at least seven countries. I walked multiple miles to buy almond croissants from my favorite New York bakery. I married the love of my life. I bought and sold a house. I challenged my husband to ping pong tournaments over craft beers. I ran a triathalon. I marched in a parade. I grieved over senseless loss. I visited the Louvre. I made and developed precious friendships. I started a career. I walked through fresh snow in Central Park. I threw a punch. I earned a masters degree. I hunted for seashells on Sarasota beaches. I made mistakes. I learned from them. (mostly). And, pivotally, in the waning moments of the decade, I brought a life into the world.
I am struggling to express the sensation I have, but here, after many false starts, is my best effort: Each person, each relationship, each moment of my thirty years is a tiny, invisible anchor, keeping me from drifting off, giving me a place. I feel connected, like I belong a little bit to each of you, and a lot to some of you. And that is maybe the greatest birthday gift of all.