Hoping a Little More

When I first found out about you I quickly put all of my hopes in check. I decided that I would only allow myself to hope for the small things.

  • Like your first breath, wondering if you would ever take it.
  • Like your first sip of milk, wondering if you would swallow it or if it would have to be medically dripped into your belly.
  • Like that you would somehow come back to me after I watched them roll you into the operating room at five days old.
  • I never let myself get very far ahead….

    So next I hoped for your first steps. Your first words. A mother’s morning out.

    And still next I hoped that by some miraculous chance your birth heart would last a little longer. That your puffy eyes and swollen stomach could be something viral instead of a new disease. I never let myself dream of Kindergarten.

    But somehow today hope by hope, little by little, chance by chance, provision by provision you bravely walked into Kindergarten. You were dressed in plaid, the same one your sister wore last year. You picked out a bow from Audrey’s outgrown pile. And you had sparkly new size 13 shoes on your feet. How did they ever grow so big?

    You smiled the whole way. Knowing that you made it. And I smiled too giving myself permission to hope for the next set of things.

    What if it Works

    “I know you’re scared, Tracy.” The cardiologist’s words from the day before echoed in my ears. “I know there’s not agreement among the three of us doctors advising you about Annie. But what if the surgery works?! Tracy, what if it works?”

    Two years ago today as Annie lay near lifeless, slowly waking up from her third open heart surgery I hoped he had been right. Her pink toes and pink lips made me try to believe it. Plus Dr. Spray’s smile that accompanied his surgical report was pretty convincing.

    But seeing Annie covered again in wires. Her coming to whimpers drowned out by monitor beeps. The long bandage that covered her sewn together chest. It was all too much.

    “It better have worked for this to be worth it,” I repeated to Matt as we watched our toddler vomit up sips of water over and over again only to beg for another drop. The nurse told us that was normal. Classic post Fontan day 1 recovery. But tomorrow she’d be out of bed walking.

    She was. But she wasn’t happy about it.

    With every step and every day of recovery I became more and more convinced that maybe it had worked. We were home in 9 days. Back to dance classes and regular messy-faced fun.

    Until Annie got sick again in December. There are only a few small ways that mean the Fontan didn’t work. Annie exhibited significant, terrifying symptoms of one of them. I knew it’d never work. Every night I wrestled with a mother’s fault for what I’d agreed to.

    Two years later I’m still wondering if it medically worked. The decision we made that day for Annie to undergo a Fontan procedure has changed the trajectory of our lives.

    Her heart function that was failing for so many years before is normal now. And we rejoice! We moved to another state to be certain she has the best care. But her protein levels fluctuate. We can’t decide if she has PLE or if at times she has viral flares that seem like PLE. We received good clinic reports, only to be disheartened by follow up lab results a few days later.

    So I’m still not really sure it worked!

    But then as I watch the light emitted from Annie’s strong little life, I see that it worked in a thousand incalculable ways. When she bravely faces another doctor visit she’d rather not go to.

    When she sings every word to her VBS song in the back seat.

    When she gives us more glimpses of heaven. Like her new announcement about the food options we’ll have: “Bread and wine because Jesus is all we need.”

    When the four of us know the value of every single second. When we have changed our life to cherish each other. When we live fuller in light of eternity. When we aren’t so scared for tomorrow because we’ve long silenced the what if fears. And traded them for the enjoyment of today.

    “Tracy, what if it works?” his voice echoes in my mind. At our July visit we all agreed that for reasons outside of medical and human logic, what we allowed the doctors to do two years ago today has most certainly worked in all the ways that matter.

    Happy “Fontaniversary” to Annie. That day will forever work to keep changing our worlds.