Many times, as I would sit at Mott's Hospital with Carly going through one of her many hospital stays. I often times would see families who were going through so much more than we were. Even though, many times, Carly was teetering on the edge of being sent to ICU.
As I sit here today and recall those families that I encountered back then. The families who were just told that their child had 3 weeks to live. Yep,,,witnessed that. That their child had relapsed and would have to begin chemo again. Yep,,, witnessed that too, more times than I can count. Or the families who had children being sent to ICU with very grim outlooks. Course, from a heart mom stand point, I saw kids in ICU one night, but the next morning they were gone. Which I quickly found out was NEVER a good sign. I've been chased out of the Cardiothoracic ICU more times than I can count, due to a child coding. All I could think was, "thank God it's not my kid". Even though she did have her share of close calls. Way too close. I must admit I would think, "glad they are the one's having to go thru this HELL, I couldn't do it".
I would often sit in our room, thinking just how bad we had it. Pretty much feeling sorry for myself. Even though, someone else was getting ten times worse than we were. I was just so relieved that it them and not us.
One night, Carly's oncologist came in to our room. Carly was inpatient with a fever. All you cancer moms know, a fever over 100.5 bought you a sure fire ticket as "inpatient". I was a wreck. We were waiting for blood cultures to come back to see if in fact Carly was positive for a blood infection. While heading to the bathroom, which at Mott's is down the hall and could be quite a hike, depending on what room you were in. Anyway, I overheard a mother, a very young mother, being told by the "team" of doctors, that her daughter had only 3 weeks to live. The daughter, I'll call "E", was well aware of what was going on. "E" was 6 or 7 and had a brain tumor. Chemo wasn't working on her any longer. I got to the bathroom and was just about ready to throw up, when someone knocked---in need of using the bathroom too. I quickly washed my hands and practically ran back to our room. I wanted to forget that I had just heard those words about "E". I must have looked like a ghost, because the Oncologist and nurse asked me if I was okay. Once the nurse left, I told Carly's Oncologist what I had heard. She apologized to me for having to hear that. She said, and she was right, "the door should have been closed". The words that our Oncologist said to me that night, I will never forget. She said, " just when you think you're walking thru the gates of Hell...there is always someone else who can top your pain and suffering".
Later that night, I made a candy bar and coke run down to the floor below. You might know, I got to the elevators and there sat "E's" mom. On her cell phone. She was crying and talking to her mom. I kept hoping those doors would open. But they took forever. I didn't want to hear about her HELL. I had my own HELL at the moment. But, I heard everything she was saying to her mother. "the doctor gave "E" 3 weeks tops mom. the tumor took out her brain stem". At that point, I almost fainted. Finally the doors opened. I was on the elevator bawling my eyes out. Realizing, that poor mother was about to walk straight thru the gates of HELL. Losing her child. Being all alone while being told. And, as I later found out, she was a single mom.
Those families, all with different stories pop into my head every so often in the past 8 years. I would look at Carly and just know that we were truly blessed to be given this little girl. Blessed that her life had been spared 5 different times. Thankful that I didn't have to know the HELL those other families knew.
After 8 years, I never dreamed I would be sitting here today. Having to face life without Carly. I thought that she made it through all of her health issues with flying colors. So did her doctors. And then, in just a blink of an eye, she is gone. No warning. Nothing. Gone.
We are finding out just how a person goes on while walking thru the gates of HELL. It's not easy. It sucks. It gets harder and harder every day. None of us are sleeping very well. Some of us aren't eating well. Brad just told me he hasn't slept in 2 days. He is full of anger. Thanks to our new found HELL. Paul is barely holding on. Me...sometimes I'm full of rage and other times I just feel numb. Ashleigh is very pissed off. We are all finding out that we don't have much happiness anymore and are very much doubtful we will ever find happiness again.
Now we know just what it feels like to be walking thru the gates of HELL!
1 day ago