The Hardest Goodbyes

One of the things that I never really did after Catie died was to share much about that last day. Parts of it are a complete blur and parts of it I remember every detail. I've decided to share it here, more for me than anything else. That day, while the hardest of our lives, was a day I never want to forget. The worst part of the day, for me at least, was not letting her go that night, it was the realization earlier in the day of all we were about to lose.

I don't remember how much I slept the night before. I know I got a good 3-4 hour chunk in the sleep room. I came into Catie room, room 10 in PICU and my eyes went to the monitor in her room almost before they went to her. When someone you love is sick like that you wake up with a panicky feeling wondering if they're the same as you left them a couple of hours before. You know if something had gone badly, you would have been roused, but still... you can't help but wake worried. As I came in, Tre' stirred on the pullot chair. I don't even remember how her night was, but I think it was fairly uneventful. I then took my seat at the end of Catie's bed and begin rubbing her feet and her legs. We could not sit at the top of the bed next to her sweet head as she had so many tubes and wires going everywhere. Tre' got up and needed a break from the room, so he headed out of the unit for a bit. Everyone else in town was at the Ronald McDonald House or hotels as it was still early. It was so quiet except for the banging of the vent (she was on the osscilator -- I know I spelled that wrong -- and it is a very loud machine).

Not much later, the intensivist came in. Hands down, the worst conversation of my life. For me, I think it's when I knew we were done. I didn't know how long Catie had, but I knew... that mommy gut just knew. He told me that he just wasn't seeing much of a light at the end of the tunnel. He said that he certainly wasn't giving up, we were going to continue to do all that we could, but that it just wasn't looking good. I began to cry at that point and I do not think I stopped until much later that afternoon. Tre' came back and brought me some breakfast, but I couldn't eat. I pushed tubes away as much as I could and found the way that I could lay closest to her without messing any lines up. And I just laid there and cried. I truly believe that I began letting her go as soon as that conversation ended. I knew he was right... I knew the options were mostly gone... I knew she had had to fight far too long and too hard. I remember asking Claire early on that if it ever came to it, how would I know when it was time to stop. I remember her simply saying, "you will know." That was the moment that I knew... not because I didn't believe in miracles, not because I didn't believe in the healing power of God... not because I didn't desperately want to see her grow up and be a big sister and a bride and a mother... The momma in me just knew that it was time to set her free. I didn't say it aloud... I don't know that I even thought of it that clearly... but I knew... Nikki and John (my brother and sister) have both told me that I spoke about her in past tense from that point on. I didn't even realize that I was. I do remember John saying to me, "Jenny, we're not there yet." But I knew that we were.

Much of the morning and afternoon are a blur. There were conversations with nurses back home (Catie's and mine -- remember I was 8 1/2 months pregnant). Family was around. I probably should have done a better job making sure everyone knew how bad things were... there were a few people who I wish I had talked with so they could have been there that night. But my mind wasn't there... it was just trying to absorb the magnitude of all that was happening... it was trying to soak up every bit of Catie that I could. At some point Dr. Hudgins and Lynn came by. They operated on Catie seven times over the course of her treatment and they came to say goodbye... Lynn was crying. It means so much when your child's doctors and nurses care so much. Sometime, early that afternoon, Lisa and Dennis arrived. I was still curled up around Catie as best I could when they walked through the door. I don't know that I've ever been so glad to see anybody in all my life. I think that was when I quit crying... at least for a while. Dennis last saw her Christmas day and Lisa had seen her a week or two earlier. We switched Catie back to the conventional vent, just to see if it would make a difference. It didn't make a dramatic difference, but things didn't change a lot so we left her on that one. I'm so thankful for that... Her body was still again (on the other vent it shook with each puff of the machine) and she seemed much more peaceful.

Early evening, Dr. Claire came by. Dennis was in the room. He had never met her, and I'm glad he got the chance to. We talked for a long time (Tre', Claire, Dennis, and I). We talked a lot about how to know when to turn the vent off... I guess Claire sensed my mind because she said, "I really don't think we're there yet." She paused and I remember exactly how we were sitting.. side by side against each other on the bed at Catie's feet... she paused and then she said, "but maybe I'm just in denial." She was crying with us. We talked some more and I don't remember all that she said, but I do remember her saying, "You don't have to decide this tonight... but it may be you already have..." The x-ray folks came in and wanted to do another x-ray. I didn't want to do it... I just wanted to let her be... x-rays required me to leave the room and they had to move her and position her, and I just wanted her to be... to not be bothered anymore... But Claire or a nurse or someone said that this could give us a more definitive picture of where we were. I didn't understand how b/c they had just done one 4 hours earlier... Nothing had been changing on the x-rays, why would it now? But I agreed and I prayed that Catie would let us know the right thing to do. I knew, but I didn't know how to know when... I think Tre' and I both needed something definitive to go on. The intensivist got us when the x-ray came through, and I remember Claire standing behind me with her hand on my shoulder or back. Clear as day, there was a hole in her lung.... her lungs were so stiff that the hole didn't cause her lung to deflate as it should have... Holes in lungs can be fixed, but her lungs were so very, very damaged that it would have done no good. There was our answer... Catie couldn't speak, but I felt like it was her way and God's way of telling us that it was ok, that it was time... Almost immediately, I felt relief. I know that sounds strange, but I knew that she would have to suffer no more... I knew that we wouldn't have to worry about her and the tumor anymore... There would be plenty of time for sadness.... at that moment I was so relieved, that it was going to be over and her new journey was going to begin. The missing would be so hard, but that was for us. For Catie things were going to be so good.

Claire told our family for us and we went in to be with Catie. They unhooked everything that she didn't need. No more antibiotics... just sedation and pain meds to keep her comfortable and peaceful.... Just the vent tube and a pulse ox (but with no sound)... I could take my spot, curled around her with sweet Izzy in my tummy between us. Tre' sat on the other side in a chair with his hands on her and his head on the bed next to her. We both longed to hear her voice one last time... that's the only thing about letting her go that I wish could have been different. So many were there to tell her goodbye. The ICU staff was amazing... they let everyone come and go as the needed and wanted. Sometimes there were 20 people in her room, sometimes it was just Tre' and I. Nurses and techs came from the 1st and 3rd floors to say goodbye... Folks made phone calls to get the word out. At some point, her sats began to fall a bit and then stayed in the seventies... she was letting go too... it probably would have happened that night or the next day no matter what. Claire went home to tuck her kids in, but told us she's be back and for us to call her before it was time. Several of my dear cancer mom buddies came to stay with us until it was over. It was so good to see their faces when they walked through the door. It meant so much that they were there. We all told stories and we laughed and we cried. Everyone kissed that bald head. Tre' and I took turns snuggling with her. I hurt so for him.... there was nothing I could do to make it any easier... There's just something about daddies and their little girls. At some point, it was late, we decided it was time for last goodbyes. Tre' and I both were ready to let her go. All through treatment, there was nothing we could do to make it better, but that night... that night we could do something. We could let her go... We listened as everyone said goodbye... what a treasure for us to be there for that. Many, tears from many people... family, friends, friends who are family, cancer moms, nurses... I've said many times that I'm so glad that so many were there. They can remind me on hard days how sure we were that night. They can remind us of the peace that filled the room. They can remind us on days when it's hard for us to remember that we really did know it was the right thing.

And it was time. They were so gentle as they unhooked her. Claire was at my back rubbing my arm and Tre' and I both clung to our sweet girl one last time. I whispered in her ear to run to Jesus... and RUN I know she did... without a single, solitary wobble... Whole and healthy and full of joy... just like she will be when I see her again.

I am unable to find the words to describe what it was like in the room that night. Maybe it's because it's the closest we've ever been to Heaven... not in how we felt, our hearts were absolutely breaking... but as Jesus reached down to pull our sweet girl for her battered body, Heaven was right there, opening for her. In the ICU you hear lots of stories of kids being comforted by angels. Those who wake up often describe them and the peace that they brought. I believe that and I believe that they were in that room that night, comforting not only Catie, but us. I'm grateful for her peaceful passing... I'm grateful for the assurance that we will see her again... I'm grateful we had the chance to hold her even if her 4 years and 4 months were far too short.