One Moment

I’m sitting in one of those hospital wheelchairs that are usually littered about the Emergency Room entrance. I ‘m in my son’s hospital room; an imposing machine takes up a majority of the real estate with tubes of bright blood flowing out and returning to it. A giant dial turns methodically and a man stands guard–his sole purpose to monitor this machine, the machine that is keeping my son alive.

I am not at his bedside, though. I am sitting in my wheelchair, my husband standing behind me as we wait to hear from the doctor what we already know will be bad news–they had warned us over the phone when they requested our presence at the hospital.

The doctor sits across from me. He is seated so we are eye to eye. In the background hovers a woman who I will later learn is a social worker and she smiles reassuringly. There are a lot of people in the room moving here and there, but I can only focus on the immediate. Is it possible that the lights are dimmed? Or is that just my memory softening the moment a little?

The doctor begins talking about brain bleeds and about the grades of bleeds. I’m in a haze of medication, but I know that this is not going to be a conversation with a happy ending. A grade I is the best type of bleed and grade IV is the worst. I say a quick prayer that it’s a III–anything but a worst-case scenario, but my prayer is too little, too late, and the doctor reveals that he has had a Grade IV bleed. And then the discussion turns to  “options for removing support.” This is, of course, a euphemism for “let you baby die,” and it is at this moment that my ears stop working. I am unable to process the words as the doctor lays out these “options” for us. I do know that I now hate the soft-faced man who would like to help me end my child’s life.

The doctor stops speaking and I turn to my husband unsure of what we are supposed to be deciding when all the options lead to a dead baby. My husband, however was unwilling to choose–unwilling to select from the myriad of bad options and says, “we’ll wait until all the tests are done.”

The tests? My mind spins and I look up at him as I try to remember what tests they could be doing. Of course–THE test. Already pronounced “likely brain dead,” they will do an EEG to verify and they are in the process of hooking him up to a million tiny wires as we sit there. The other doctor in the room–a neurologist in blue scrubs–assures us that it is a foregone conclusion. He averts his gaze after making this statement and becomes very busy with the wires.

My husband says we will wait and in that instant I know that is the right decision. We will support our son–a life we waited for with high hopes. We will handle things if they take a turn for the worst, but we won’t speed up the process. We are his parents.

Everything that we are now is a result of that instant, that decision.

And there are no regrets.

baby in hospital

This post was written in response to a link by The Red Dress Club:

pen For this week, we want you to imagine that after you have died and your daughter/son will be given the gift of seeing a single five-minute period of your life through your eyes, feeling and experiencing those moments as you did when they occurred. What five minutes would you have him/her see? Tell us about them in the finest detail. Let’s have a maximum word count of 700 words for this post.

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  1. Wow what a beautiful post. I had tears. If I could vote for you to win a new car or something I would 😉

  2. A really big car with room for three child safety seats and fold downs in the back to make room for Charlie’s chair. Hey, I think I nominated you for a minivan!

  3. Love this post, girl!
    No regrets. That’s FOR SURE.
    I so relate to the line about the moment your ears stopped working. Happens to me all the time. I love having someone come with me to the big doctor visits because my ears stop working and I need someone else to be able to repeat things to me once they are back in the “on” position once again :)


  4. What a way to start the day! Katy, you are such a good writer, and that was such a revealing glimpse into your and Charlie’s and your husband’s lives. Thank you! Beautiful.

    • Thank you Sarah. I find that these days it’s important to get at least some of the story of Charlie’s early days down–even if only for my own sake.

  5. for a moment, I was honestly terrified and choked… I thought it was a current event… I was so relief when I saw a photo of newborn Charlie!

    • I’m sorry I scared you, Pamela. All is well over here. That was one of the first pictures of Charlie where I could actually see his face. Before that, it was completely covered by tubes and sensors.

  6. Beautifully written. I felt like I was in the room with you. I know you don’t need me to tell you that you made the best decision ever – you get to live with that amazing little boy every day and see him defy the odds. Just proves that the “experts” do not always know best!

    • Yes! He wasn’t brain-dead, of course. and he’s defied the odds in so many other ways as well. The experts are guides–not gods.

  7. Yeah for a moment I wasn’t sure if I was in an episode of LOST or something, I was scared something had happened. Once I had accepted you were trying to tell us something I sat back and let it wash over me. It did, and it was exceptional as always.

    Funny how choices like that define lives forever. I wonder if in each of our lives we have several pivot moments like that, where going left or right radically alter the course of who we are and who we will be?

    • I think I would have cried BS at the idea of “pivotal moments” a few years ago, but as I wrote this I realized that our lives would be completely different if we’d decided differently. So now I if there have been others that I just didn’t notice.

  8. I felt like I was there… or maybe it was the flashbacks, of “the dark days” We never faced “the choice” but had the crushing news part. (and the room was dim) I reassured by many NICU nurses that doctors always tell you the worst and they had seen many many miracles. The swells of pride and the things I have learned about life… and I know you live them too. Charlie is an amazing kid! May you continue to be blessed!

    • They wouldn’t even reassure as at that point–only weeks later when he’d shown his strength. I still treasure those positive voices, though.

  9. You’re the kind of person who teaches and inspires those around you without doing anything except being yourself.

    I loved this, Katy. It was beautiful and touching.

  10. What a great piece of writing! You and your husband most definitely made the right decision and thank God for A to be that sure in that moment. It’s so easy in those life-or-death moments to be guided by the people we are supposed to trust, the doctors. Charlie will be forever grateful to the two of you for having your own voice.

    • Yes, I’ve learned since then that the right decision is almost always the one in your heart–even if it’s not what the experts are recommending.

  11. I cried when I read this. I heard the same news standing next to my daughters incubator more than 11 years ago. They told me that she would be a vegetable and that I should let her go for the sake of her quality of life. She’ll be 12 in July, and went to her first middle school dance last weekend. Kids beat the odds all the time, and keeping your baby alive was the right choice. Sometimes as parents you just know. I remember looking at her, seeing past all the tubes and wires, and I just knew. Doctors just have to give you the worst case scenario, but I’m glad that you knew.

    • Jenn: I am so happy to hear about your daughter and I do so HATE that quality of life argument. Charlie is an undeniably happy kid–his quality of life is pretty darn good if you ask me.

  12. I can only imagine what those minutes were like for you Katy, as a new mother and your husband as a new father. I’m so glad that you were led to make the right decision for you all! He looks really good in that picture that you posted. You are all blessed to have each other… xoxo

    • Yes, I think I’m missing a lot of that new mother experience. I’m hoping maybe this go-round will be a little more “classic.”

  13. This made me cry. I cannot imagine what this is really like, but you have described it so well. As I habe said since before he was born, Charlie is one very loved child, and for that he is very, very lucky. You all are amazing parents. And I wish all parents had your strength.

  14. Amazing story. So glad the experts were so wrong. So glad you waited and believed and continue to fill that role and so much more for Charlie and his siblings-to-be. Blessings.

  15. Thank you for sharing this. I know it’s hard for me to revisit Sophie’s early days, so I can only imagine how hard it was for you to sit down to write this and relive such a difficult time. Very inspiring.

    • I cried the entire time I was writing this, but I feel good about getting it out there. It’s harder for my family–my Dad refused to even look at that picture even though I was ooooh and ahhhh over how cute Charlie looks.

  16. Beauuuuuutiful, Katy! I was instantly transported to the NICU, seven year ago. What miracles we witness…because we chose to do the “hard” thing, the right thing. I sued to think what did we do wrong…now I think, what did God see in me to give me this child. I will remember this story forever, Katy.

    • Oh, Candace, you have such a lovely perspective–witnessing a miracle. I’m not sure I’m *quite* there yet–maybe one day.

  17. Katy – oh wow, as a new visitor you had me teary for sure. So relieved to discover the “rest of the story” in the comments. What a beautiful photograph, what a gorgeous angel. Can’t wait to get to know you, and of course precious Charlie, better. With two sweet ones myself, I’m a sucker for little boys.

  18. Wow. One of the most powerful things you’ve ever written Katy. There really are no other words.

  19. I’m crying like it was me sitting in the wheel chair. If these words transported me there, I can only imagine how difficult this was to write. It was truly from the heart. Powerfully written, Katy….

    So, um, yeah. I think I fell in love with your husband when with steady determination he tells the doctor you’ll wait for all the tests. I’m not really in love with him but his actions were so quietly heroic and I do love a hero;) Seriously, though, there have been a few times in my marriage when tragedy has stuck and I’ve been paralyzed by grief or hurt. It’s then that my sweet husband, who is content to let me flit around doing my own thing, and who prefers to observe from the perimeters, rises up and with quiet, dignified resolution steers our family. He’s been my knight in shining when I’ve been totally defenseless, (how ever rare an occasion that may be.) I know it wasn’t necessarily the intent of this writing but it quite clearly showed the immense character you and your husband possess.