Not that I have put a lot of thought into how people react to bad news, but I didn't expect my reaction to be quite what it was. I didn't have one huge breakdown right when the doctor told us. I really did work to hold it together while he was in the room so that I could try to listen to what he was saying. I had breakdown number 1 when he left the room to write the orders for the bloodwork that Roo needed. Breakdown number 2 occurred when we got to the lab, which was just on a different floor of the same building. Breakdown number 3 happened while the nurses were trying to draw blood from our now 8 ½ pound child. Breakdown number 4 was outside the lab, while I was trying to feed him before putting him back into the car seat. I think you get the idea. I would sob and cry and mourn… and then get it together… and then a few minutes later I'd be back to square one.
Through it all, I remember that I kept thinking over and over and over, "This isn't happening only to me." My wonderful husband had been such a rock for me through everything with Roo, from all the ups and downs of the pregnancy to the week we spent at Children's to the overall adjustment to life with three kids, and I think at times I took for granted that all of those hard times were just as hard for him as they were for me. So as broken as I was, I kept trying to be very conscientious about listening to him and supporting him. Not that either of us had much to say at that particular point.
We got in the van to head home and I said, "Well, our lives just changed." It was such a dumb thing to say, but it pretty much summed it up.
Children's Hospital is only a few minutes from our church, and at that point church seemed like the best place to be. We drove straight there, and we didn't really see or talk to anyone—we just wanted to sit there and pray, and that's exactly what we did. I don't even know anymore what we prayed, but we were lost and just needed God to hear us.
When we left there, we really didn't know what to do. We weren't hungry but needed to eat. We didn't want to have to tell anyone but needed our families to know. Really we just wanted to go back to 9 AM that morning when we didn't have a care in the world. But since that wasn't an option… we went to Arby's. We didn't want to get home and have to worry about getting lunch ready while we were trying to explain to our parents what was happening, so we thought we'd just get that step out of the way.
On the ride home, we tried to figure out how we were going to break the news to our parents. Jon's mom was at work (She works for him, and their office is only about 5 minutes from our house.), my dad was at our house, and my mom was either still in her meeting or at our house with my dad (or somewhere in between). We drove past the office and his mom's car wasn't there, so we decided that the "ideal" situation (as ideal as it could be at that point) would be if his mom and both of my parents were already at our house waiting for us.
Unfortunately, when we got home, neither of our moms were there yet. We sat in the van and tried to figure out what to do. Jon called his mom and asked her to come to the house—she was still in her car on her way back from a meeting, so she came straight there. And while we were sitting there trying to plan the next step, my mom pulled in. Whew—we finally had everyone under one roof. Unfortunately, that was the easy part.
Our moms and I got lunch for the big kids, and then we sat down to break the news. It was, of course, a shock to them as well. I think we had all expected that we wouldn't really have any news until after the bloodwork came back, and even then we all thought it was just going to be fine. Coming home with a diagnosis, and a life-changing one at that, was not on anyone's radar.
They stayed and talked for a while, although I can't tell you much of anything about the conversation. When they left, Jon said, "It didn't seem like they cried that much. I expected them to take it harder." I told him that I suspected they were just trying to be strong so that they could support us. I later found out that they left our house, drove straight to McDonald's (about a mile away) and sat and cried together there.
After that we began the process of telling people. Jon called his dad, I called my brothers and a couple of close friends. We just made a few phone calls that first day, because we weren't really sure how to handle it. The idea of saying it over and over and over again was almost sickening, but doing something like sending a mass e-mail seemed tacky. And we struggled with how many people to actually "notify" instead of just letting them find out from others or whenever we saw them next.
Later that afternoon, we took the kids and bought the vegetables for our 2nd annual garden. It was a strange juxtaposition of doing something fun when it seemed like nothing would ever be fun again. I think, though, that Jon really needed to just do something "normal" as a family, so that's what we did. As we got in the van to go home, Jon said, "I'm tired and hungry and sad." And Lamb said, "Why are you sad?" So far we hadn't said anything to the kids about Roo's diagnosis. We stumbled through an explanation, and unfortunately in our stumbling, we told the kids that Roo would be "a little bit sick" throughout his life. Wrong choice of words. Although she seemed to accept it at the time, at bedtime that night, Lamb sobbed and sobbed because she didn't want Roo to be sick. We backpedaled the best we could and explained that he would just be a little bit different from her and Monkey, that it would take him longer to learn to do things, etc, etc. And even as we tried to reassure and comfort our daughter, our words sounded hollow. I didn't want it either.