The Hardest Time of the Year

This is long. And it’s painful.

Just this past Monday, we marked 11 months without Kate. The next four weeks will bring our first Christmas without her. Our first New Years without her. And then, the 1 year anniversary of that horrific day. The worst 15 hours I will ever live. In just a short time, people will start saying “Kate died last year.” LAST YEAR. A year away from my little girl. A year since I saw her. Then it will be a year + 1 day. Then a year + 2 days. And so on it goes. It’s not as if one year is some magic number. It doesn’t end there. It’s not like “ok, I’ve made it a year, I’m good. She can come home now.”

No. She’s never coming home. She is never, ever coming home. And I’ve read THREE articles this week about how the second year is even harder than the first.

To be honest, as hard as it is to imagine how hard these huge milestones will be, what’s worse are all of the red flag memories that no one can help me work through. No amount of reasoning, no amount of reminding…no amount of trying to talk me out of them can help my guilt. Any work I’ve done at forgiving myself is gone. Last December & early January play over and over in my mind. Every waking minute that’s not spent busying myself with something else….every time I try to shut my eyes to sleep, my mind is invaded by thoughts. You’d probably never know it. My mind can go to very, very dark places anywhere. “Why didn’t I intervene here…why didn’t I trust my gut there?” I want so badly jump back into myself. Go back in time and wave a flag in front of my own eyes and scream “TRUST YOURSELF! GO NOW! DO WHAT YOU SAID YOU WANT TO DO AND TAKE HER TO THE DOCTOR! Something is very, very wrong and you were right!!! Nobody knows your girl like you do!!”

I posted just yesterday that one year ago, she was “perfect.” Yet, by Christmas night, I spent an uncomfortable amount of time noticing how full her tummy had become. I tried to explain it away to an increased post-chemo appetite that didn’t actually exist. She rolled over onto her tummy Christmas night and cried out in pain. There was a part of me that knew it wasn’t a Lego that she’d rolled over on and there had to be a reason her tummy was so full. But then on New Year’s Eve, she spent the day swimming and playing with Daddy and I thought for sure everything was okay. We went to dinner and she had a better appetite than I’d seen in a long time. I have pictures of her grinning from ear to ear – sprinkled ice cream in hand. By January 2nd, I was on the phone with doctors daily, but this time, with her pediatrician because just weeks before, she was “clinically perfect” from an oncology standpoint. We took her to the doctor because the cough that arrived at Thanksgiving was unrelenting and no one seemed to know what to do. We started the breathing treatments and the steroids. We started the antibiotics. She became heavier and heavier and her tummy more and more bloated. And then I Googled. I knew then that she had relapsed. She went back to school and the teachers tell me they remember her on that Friday. She didn’t necessarily seem to feel well but she were there. Participating and playing with friends. I look back at pictures from that day and she was positively gray in color and I didn’t even notice. Her own mother…trained by experience to NOTICE, didn’t. Her hemoglobin must have been so low and she must have felt so sick. That weekend she did nothing but spend it on my lap. She asked to sit down when I dried her hair after bath. She asked me if she still had leukemia. Petichia showed up under her eye. She ran a low fever. She cried in the middle of the night two nights in a row. Something she’d never done. She came in bed and slept with me. I knew. And I did nothing. “Wait until her January 11th appointment” they said. But I’m her mom. Every symptom. Every sign. Everything SCREAMED relapse to me. And I listened. I did NOTHING. I waited.

I would give anything to go back and these memories and just act. I always said I’d do anything for her. THEN WHY DIDN’T I WHEN IT MATTERED MOST?

Did I know she was dying? No. It never entered my mind. Even while they resuscitated her…twice…in front of my very own eyes, I did not think she would die. Not once. It was Kate. THIS wasn’t how Kate’s story ended. Kate was KATE! Kate was doing GREAT! She was thriving! She was happy! She was my one and only. My little girl. My sidekick. She doesn’t DIE from this! Arrogance at its best. Perhaps I thought I could wish it away. Ignore it away. Is that what caused my inaction?

I have no idea how to survive this guilt…I feel so strongly that I could have prevented this. Not her relapse (although that’s a whole other conversation all together)…but her death. I could have prevented her death. My husband says she’d have been so, so miserable had she survived to relapse protocol and eventually BMT. He’s right. She would have been. Kate was not the kid who “got used to” treatment. She was very brave, yes. And she rebounded quickly each time she got knocked down. But she HATED treatment. Just flushing her port with saline made her throw up. Do you know how many times a day that would’ve occurred in this new world? Relapse and BMT protocol would’ve given her TWO ports. We’d have lived in the hospital for months and months on end. She’d have moved away to another hospital to await BMT. Away from HER nurses. HER doctor. HER people. She’d have not been allowed to see friends. Or family. Or have her precious stuffie collection. She would have hated every minute of it. Definitely. But she’d have had a chance to live. So when I tell her I’m sorry…when I say “I’m sorry” to the world over the loss of Kate, that is why. It will always be my fault for not protecting her. And believe me, we lost EVERYTHING when we lost her, but so did the world.

I am her mother. And she is my precious child. And I failed her. And THAT is what weighs on my mind this holiday season. While the world rejoices and spends time with their families and children, my arms are empty. Because I failed her. Yes, I will miss her at Christmas. I will miss her on New Year’s Eve. But I miss her LIFE. I miss her EVERY DAY. It’s not just Christmas. It’s not just any one day. It’s every single day for the rest of this life I have to live without her.

Kate, I know you hear me when I ask for forgiveness. I know God does, too. I just wish I could know that you hear me, that you are okay. That you’ve forgiven me and that you love me as I love you. I miss you. I am so sorry that I let you down. You are and always will be my best friend forever. I promise.

(This post is dedicated to every other bereaved parent who listened to me about this very subject all this week. For each one of you who nodded in agreement and understanding, thank you.)