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Thursday, February 3, 2011


I am completely and acutely aware how incredibly lucky we are to have Miss Charlotte around. I am reminded of our luck each and every day.

I see it each time I look into her eyes and see her pupils dilate differently. I'm reminded each time I change her clothes and touch the scars that cover her body. I'm reminded by the fact that CHOP has a special ringer on my cell phone so that I can make sure I don't ignore a doctor's phone call. I'm reminded by the massive oxygen tanks that are delivered weekly. I'm reminded by the therapists and nurses who spend time in our home each and every day. I'm reminded by the friends Caleb can't have over. I'm reminded by the Purell dispensers on the wall.

I'm reminded by the size of the diapers she first wore. I carry one in my purse to remind me. To remind me of how far she has come, how much she has beaten. So on those days that I wonder how we will get through one more phone call, one more appointment, one more set back, I reach into my purse and pull it out and think about the days when we had to cut them in half because they were too large. I think about the day we took a picture of one next to a Bic pen. I remember how I was trying to find something--anything--to distract me. The doctors had just told us that Charlotte was experiencing heart failure and there weren't many options for us. I sat there that day wondering if she would live long enough to wear the next size diaper. {She did. And the next larger size. And the next larger size. And the next three larger sizes after that.}

So yes, I live with reminders. Reminders of how close we came. I've watched friends bury their children and while I will never, ever, ever claim to understand or even imagine their loss, I am acutely and vividly aware that we have escaped it.

And despite that awareness, despite all the reminders of how blessed we truly are, this month has been hard.

Last year at this time, I was struggling to maintain a pregnancy. We had no idea what was about to happen. I had a PICC line placed shortly after Christmas 2009 and was taking many, many doses of anti-nausea medications each day, as well as two liters of fluids, vitamins and nutrients while I slept.

I feel like the past year has been an effort to stay afloat, to just make it one more day. Most days, we do really well. We pull ourselves together and we accomplish what we need to accomplish. And we do it without all that much effort. {Yet another way we've been blessed.} But other days, I feel like I'm right back there in the first few days of Charlotte's life when we had to decide how far we would push this. At what point do we stop trying to save her life, and instead make her comfortable? At what point do we stop intervening?

As Charlotte Amalie's birthday approaches, I wonder that about myself sometimes, too. How long do I keep trying to work out the pain and anguish and guilt and yadda yadda yadda surrounding it all? When do I say, "Heck.with.it. Make me comfortable."

Because, believe you me, I have those "make me comfortable" days. I wallow. I just want to be comfortable. I wonder how we'll ever get past the medicine and finally see the daughter. 

And then, on those nights that I need it the most, she falls asleep in my arms. Suddenly, instead of tending to a patient, I place my baby in her crib, and I kiss my girl goodnight.

In yet another way, perhaps in the best possible way, I am reminded.

Reminded of her.


  1. We are almost a whole year ahead of you in this journey... D will be 2 in a month. I wonder when we will peel the last layer of the patient and move on with the child. We're not there yet, but we're so much closer than a year ago. In a way, I don't ever want to be normal and take for granted all the little things that remind me that for us, too, it was a very close call.

  2. Wow, the thing that really struck me about this post is however many months later I immediately knew exactly where you stood in the NICU to take this picture and saw the whole place as if I'd seen it yesterday. Going back next week for developmental clinic!

  3. I put so much weight on things changing and being better in 2011 that the first sign of things being the same threw me into a tailspin. Most days Eloise is a baby but on the days when she is a patient, I about lose my mind. I think it is hard to have someone medically trained at home. Having the stethescope out on the kitchen table is a constant reminder that all is not perfectly normal. What kills me is when Turner says things like "Can you read me a book or is it time for Eloise's treatment?" I'm not sure when (or if) I'll ever be comfortable but I have to believe it will happen someday in order to get through today.