The Other Charlie

Ok, this is really long, but completely theraputic, so if you don’t want to read it then don’t. . . I feel better for writing it.

The day they told us that Charlie had stroked was the most surreal day of my life. I was loaded up on pain killers and still in a wheelchair (you can’t walk right after a c-section) when they rolled me into a little room, introduced me to a social worker, and told me that Charlie was most-likely going to die. They aren’t the best memories, but they’re here to stay. After some time to process what the doctors had said, we headed to the waiting room to find out the ins and outs of staying at the hospital: reserving your pull-out chair/bed in the waiting room, procuring parent badges, and getting directions to the cafeteria. The brisk efficiency of the waiting room attendant sharply contrasted with the dull, swirly feeling in my head.

Charlotte’s parents showed up a few days later. They had that dazed look about them and you knew that their universe had just engaged in some break-dancing. One glance and you knew exactly what they were feeling because you had been them two days before. This couple, however, had a strength about them that I know I never had. They showed up at that hospital and they wouldn’t leave. I remember that Charlotte’s father didn’t have any socks for two days because he’d arrived up in sandals. They kept our floor ice cold, as well, because heart babies need to be kept cool. One night my husband and I bought him a ten-pack of socks at Walgreens because we knew he’d been freezing without them. Despite this, he hadn’t left his little girl’s side.

The day Charlotte arrived, Charlie got a little dot next to his name on the hospital boards. We asked why and were told that with two patients in the same unit with names that similar, the dot was a reminder to double check everything. Charlotte was place on ECMO just like Charlie. I felt as if they were kindred spirits: the two Charlies. Charlotte had different complications than Charlie–her brain didn’t bleed, but her kidneys took a beating. The doctors couldn’t figure out what was wrong with her and she had a litany of tests. She was placed on the transplant list and then removed when her heart began to regain strength. I would not be exaggerating if I said that about a hundred people traipsed through that waiting room to visit her family. Charlotte’s christening looked like a formal church function except that most of the visitors wouldn’t get to see the guest of honor. At times, it felt like the entire state of Arkansas was praying for the tiny girl with the long lashes. One night Charlotte’s parents posted a prayer request for the two Charlies on their Carepage–I felt a surge of gratitude. With all the prayer-power behind that family, I knew Charlie was in good hands.

Even though my child was in the hospital, even though I knew that his heart had failed and his brain had bled, I was still naive about the place I was in. I never believed that a little girl so loved, so prayed for, wouldn’t make it. I’m wiser now, but truthfully, I’d rather if I wasn’t. It was just one of those things that can happen in a medical environment: an infection. One day we were smiling and laughing with her parents in the halls on the way to the cafeteria, and the next day she was gone.

News of Charlotte’s rapid decline spread quickly on the floor and I was sick with the news. If she didn’t make it, then what hope was there for my son? He was physically there, but was that enough? My faith, which had been rock-solid until that time, wavered a bit that night. Later in the evening, we had to call an on-call doc to give Charlie a check-up because he seemed out of sorts. This man, who I will never forget, took one look at Charlie’s chart and then marched in full of gloom and doom prophecies about babies who had brain bleeds. He didn’t even look at Charlie as he talked about children who “seized all the time” and who were in bad mood because “they had brain damage.” At this point I hit rock bottom. I packed my things and left my mother-in-law in charge. I’d been living at the hospital for about two weeks and if I spent one more second in that building I would have had to check myself in as a patient. I felt as if no one would ever look at my Charlie as a human–just a diagnosis.

In the elevator I saw Charlotte’s mom with her family. Her blue eyes were bright with tears and I knew instinctively that they’d been in the chapel on the second floor. I also knew that if she’d left Charlotte’s side at this critical time then things were probably at their worst. Charlotte’s mom looked at my own red eyes, and asked me, “what’s wrong?” As I type this, I am in awe of her strength. Her own daughter was dying and she asked me about my selfish tears. I also feel like a complete ass for having the nerve to cry when my child was still living, but you can’t change the past.

Charlotte’s mom still posts occasionally on her Carepage. Recently she left a message talking about Charlotte’s birthday. I believe she was born at the end of May. She talked about how hard it was. It’s hard for me too. Of course, not in the same way, but still. . .

Why do some children live and some children don’t? I wish I knew the answer. Hell, I wish I had a clue. Charlotte is gone and my Charlie lives. He took so many hits. His odds of making it were so small that I’m glad I didn’t know them at the time. He’s got issues: physical, verbal, visual.

I don’t know why some children make it and some don’t. After a year of thinking about it, I’m no closer to the answer. I know this, though: her parent’s strength was a gift to all of us in CVICU. They were models of faith and courage and empathy. They never stopped asking other people how they were doing. I never saw them give in to self-pity. Their belief was something that we should all strive for. We can’t ever know God’s ways–he’s working on a thousand year plan and we can only see the smallest slice. What I do know is this: Charlotte’s family is my role model. I want to be that strong. I want my faith to be that pure. I know that I am not alone. Charlotte’s life, however short, blessed those of us on the very outskirts of it. In just a few weeks she touched many lives. How many of us can say the same? Was that her life’s purpose? I wouldn’t even dare suggest it, but I for one am glad that she was here for even the briefest moments.

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  1. This was beautiful! Thanks for sharing this experience and your thoughts. Realistically, we may never know the answer to some of those “why” questions yet there is peace to be found in all of this.

  2. Stacey says:

    I wonder if all parents like us have this survivor’s guilt geared specifically toward one child. The one I talked about on my blog the other day – Luke – was 24 weeks to Ace’s 29 and had a much lower chance for survival, but I still felt five kinds of awful when he passed away, and not just for the general circumstances.

    About a year ago, a mom joined a preemie parent support group I was in who’d had a baby at 29 weeks 5 days. Her kidneys and lungs stopped working and she passed away. Boom, it all happened again, because this baby was born after Ace’s gestational age.

    Survivor’s guilt blows, for real. This is a GREAT post.

  3. Shannon says:

    We had a similar experience when we found out about D’s brain bleed. They very much expected her to be seriously compromised and/or die. It was horrible. Just horrible.

    I agree, I think a lot of us parents have survivor’s guilt.

  4. Leucantha` says:

    Ahh Bird.
    I understand the need to get that out. I posted about my nephew once too. He was just six weeks younger than Zachary and had a congenital diaphragmatic hernia and only lived a month. There are times like last night at Zach’s ball game siting with my sister-in-law I can’t help but think, Sterling should be here too. I think we just have to thank God and go on, and take the example of their strength with us.

  5. I cried reading this. It’s so hard for me to believe in a benevolent higher power when things like this happen. I haven’t ever known someone whose baby has died, it must be horrible.

  6. luckeyfrog says:

    I hope you’ve sent this to her parents… I think they would really like to know that they- and little Charlotte- had such an impact on you.

  7. I thought about that. I would love for her parents to see this entry as an honor, but I wouldn’t want to make them sad. So. . . I’ve left it where it is for now.

  8. desperate housewife says:

    I believe it is so important to honor life, no matter how fragile and brief it was. Charlotte was here, with us, and you have honored her life by telling us her story. Thank you.

  9. Haz Bien says:

    That is one of the sweetest things I have ever heard. It’s right up there with the dancing with Charlie in the kitchen story!
    What a blessing and strength their family must have been (and still be!) to you all. God certainly has things figured out, that’s for sure.

  10. Wow, what a story, so sad about little Charlotte. I cannot imagine going thru what you did – just like Charlotte’s parents handled it all so well, you have too.

  11. This is a beautiful post, Katy. What a special way to honor Charlotte and her mom and daddy.

    My brother and his wife, who lost a little girl several years ago, demonstrated to me what it means to ‘live your faith’. They were amazing and I will never forget how they walked through that time, with strength and uwavering faith. It spoke volumes to me.

    As to the question “why”…I guess we will never really know. And maybe we aren’t supposed to know…if that makes sense?

    You said, “We can’t ever know God’s ways–he’s working on a thousand year plan and we can only see the smallest slice.” WOW. How right you are. I couldn’t think of a better way to say it if I tried.

  12. It’s not often I shed tears over anything other than cheesy cartoon movies about dying dogs or little lost mice named Fievel, but you really packed a punch with this one. I don’t pretend to understand and I don’t expect I ever will, no matter how close I get to God–but I too, hope that no matter what life throws at me that I would be able to handle it with that kind of strength and grace…this was an absolutely beautiful entry.

  13. You explained and expressed this very clearly. Your pain and all your feelings are so clear in this account–good for you for getting it all out.

  14. That was moving…perhaps they were your blessing in disguise.

  15. Billie says:

    That is such a moving story!

  16. Kara Melissa says:

    Absolutely heartbreaking and inspiring all in one moment.