We have arrived at my least favorite part of the story.
We had spent five days in the hospital with what could be described as a very angry five-year old because all she wanted was to go home. Five days trying to keep track of doctors and medications. Five days managing all the family members and refereeing a few squabbles. Five days of rotating who was home with Dawson and who stayed with Teagan and who had Dawson when both of us were at the hospital. I was exhausted. I’m sure Dave was exhausted.
The day started very early because Dr Young wanted her in surgery by 8am and he wanted a new MRI done before surgery so he could detect any changes in the tumor. He met us down at MRI and had us sign forms. Forms that probably said things like “….cause death, dismember and permanent injury…” but because he’s a rock star he told us it was best just to sign it and not read it. And we watched Teagan try to fight the anesthesia before she finally fell asleep. We were then escorted upstairs to the waiting room.
All the family had already started taking over one whole wing of the waiting area. Someone basically force-fed me a bagel or else I wouldn’t have eaten anything. EIGHT HOURS…. we had to wait EIGHT HOURS while someone was fishing inside our daughters brain. A lot of people stopped by and several people wished us well on text messages and voice mails. All I did was watch the clock. At one point Dave & I excused ourselves and went to the gift shop to walk around. I was missing my hiding place. On Day 3 at the hospital I located a hiding place. Somewhere where I could go and sit and no one could find me. Dave found me once — I think he liked the hiding place too. The hiding place was a quiet hall where the floor residents had their office/living area and was supposed to be “off-limits” to patients. It had a bench next to a window where I would go and sit for 10 or 15 minutes when everything just got too overwhelming – and I only got caught once but by then Teagan was a bit of superstar at the hospital and nobody really wanted to tell a “Cancer Mom” she couldn’t sit on a bench.
At five hours a nurse came and told us that Dr Young was closing up. Was that good? Was that bad? A rising amount of anxiety was building. About 45 minutes later Dr Young came and talked to us and told us he had removed “most” of the tumor, she would have an MRI the next morning to see if it was completely removed or not. He told us that she had done well during surgery and there would be some swelling. I guess I expected him to tell us that everything was going to be OK now. But there are certain doctors who won’t ever say those words, one is a neurosurgeon and the other is an oncologist.
When we were taken back to the recovery room I was noticing it was hard to breathe but I tried to ignore it. When I first saw Teagan I wanted to cry but I fought back tears. Her head was wrapped up in gauze with some strands of hair sticking out here and there. Her face was swollen including her right eye which looked like she might have been in a prize-fight. She was crying and uncomfortable and in pain despite the morphine. My breath at this point was coming in gasps and I was starting to have chest pain. My brain kept telling me I was having a heart attack and I kept trying to ignore it.
Dave was trying to make Teagan more comfortable and basically arguing (politely-ish) with the nurses that a) she needed her head raised because they had her laying float b) she was in pain and she told him the bandages were too tight and c) quite possibly she was allergic to the morphine because her cheeks were turning bright red. One of the nurses called Dr. Young who came in with an irritated look towards the nurses, propped her head up and made a few cuts into the bandages to loosen them. He asked Teagan if that felt better and she said yes so he left.
By this time I was dangerously close to passing out. I couldn’t breathe, it felt like there was a boulder sitting on my chest and I was now starting to panic that I really was having a heart attack. I asked one of the nurses for a chair – she saw that I was about to pass out and grabbed a chair and a wet wash cloth and sat me down. Once I realized I was panicking I remembered this had happened once before when I was about 25. I was in a full-blown panic attack. Then I wanted to cry because I wasn’t being a good mom for Teagan. Dave gave me a look that basically said What in the hell is WRONG with you? And I mouthed to him “I’m sorry.”
Before we went back upstairs to the PICU I was able to breathe again and walked up with her. For the rest of the day I sat in her room by her side feeling like I was the absolute worst mother in the world. I wasn’t ready to see her in that much pain and with all the bandages wrapped around her head and all the swelling. I knew it was coming but I wasn’t ready for it. Up until then we had just been in the hospital with the same Teagan we brought in on Friday afternoon. That moment, in the recovery room, was the realization that now we had a Teagan whose life was forever altered. Our whole family life had been forever altered. And it came with pain and swelling and crying.
I still feel bad about nearly passing out in the recovery room. Luckily Teagan doesn’t remember it. Unfortunately I do. And Dave does. We were supposed to stand strong together for each other and instead I became one more thing he had to take care of that day.
Probably the worst day of my entire life.