Life in our days

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Today, our new daughter is 25 days old. Now, normally people mark the life of a newborn in months. But in our house, 25 days was a lifetime for her brother. This means that when we wake up tomorrow, she will have lived longer than he did. When I think about those 25 days last fall, they seem so much larger than that small amount of time. Because we knew that we had to try to fit as much life as we could into them. This taught us many things, but mostly that living in the moment was as important as breathing. To focus on what was happening that minute, that hour, that day. It changed the way we thought about how we had been living. That was a challenging transition, because we naturally had plans…for him, for his future, for our lives together. It was hard to give those up, to let those go and realize they would never be fulfilled. It made our loss full of many layers…loss of life, loss of hope, loss of possibility. It made the building of memories most important because time was short. Our days, our hours, our minutes with him were a gift. Every one of them. Even more so once we found out what was happening with his little body. In those last days, we realized what a miracle it was that he was still with us. The struggle he faced was big- 4 chest tubes, 2 ventilators, IVs, heart monitors, blood pressure cuffs, feeding tubes. And yet, there he was, bright eyed, alert, a precious little baby that didn’t know any different so he adapted to this life he had been given. Over time, the machines couldn’t keep that life moving forward. It was too hard. The limitless potential that we had dreamed for him was, in fact, limited by a pair of lungs.

Now, our Zoey has had a set of her own challenges. At 7 days old, she was admitted to the NICU because of breathing problems. We were there for many days without a diagnosis. She had unending tests. She had to be on a ventilator. It was traumatic as an independent incident. It was heartrending combined with her brother’s experience. Or really, combined with our experience of her brother’s life. There were moments when I could not separate the two. When I said ‘he’ instead of ‘she’. When I said his name instead of hers. When I asked, without thinking, what was being done for our son. It was too close. And the guilt of those mistakes, the guilt of those misspoken words…that was enormous on its own. How had we gotten here, again? How had we been given 3 perfect days at home, growing comfortable with eachother, getting to know eachother, learning how to live with eachother…only to have it taken away in the rush of ambulances and emergency rooms and transfers…to be sitting, once again, in an uncomfortable, sterile room full of monitors and noise and breast pumps and measured feedings? I knew, in my head, that this was different. That she was ok. That they just needed to figure out what was wrong. The ventilator went away quickly. The test began. There was the need to remove a provider who was not working in Zoey’s best interest. There was a change in plan of care. It was simple. And solvable. And would mean going home sooner than later. In my head, I understood all of this. But in my heart, I kept thinking that the other shoe would drop. That some terrible diagnosis would surface, just as we were gathering hope. Because THAT is what I understood about parenting. That overwhelming fear. That helplessness. That need to find the good in a mind numbing situation because that is my job as the mom. Interestingly, this time, living in the moment was easy. Thinking about the future was not. It was a shift that had been happening over the last year but made me stop in my tracks when I realized it. A reminder from a son who couldn’t stay with us to his parents and his sister. To remember that this life is a gift. Every bit of it. Every moment. And no matter what happened, we’d be ok. We’d figure it out. Because he was there helping us. Within a few days of this revelation, we were going home. And it seemed that we were back on track. And I remembered how long a few short days can be…both in a good and a bad way. But mostly good.

So, 25 days. A lifetime on one hand. A beginning on another. We must decide how to put those two stories together. Those two lives together. And tomorrow, one life will be longer than another. Another reminder that each day is precious. That my job, as the mom, is to live. And breathe. And be grateful, for 25 days. And for 26.

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2 responses »

  1. Thanks for sharing your precious thoughts on your angel baby Bennie and little earthly angel, Zoey. After Bennie was born I checked FB all day long hoping for good news. I felt so helpless waiting for answers thinking of you and Sean and beautiful little Bennie. Today it was good to read your musings about your children. You have weathered the storm but not without some scars. Memories can be so vivid but I can assure you they will soften with time. You and Sean are wonderful parents…Zoey is a very lucky little girl.

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