It was a cold morning in Japan, and it was colder still because we had to leave our house very early in the morning in order to make the trek from Atsugi to Yokosuka Japan. There is only about thirty miles between the bases, but the traffic in Japan is epic at best. In fact, at one point in our lives Eric and I had been trying to have a third child and one of the reasons we quit the effort was the traffic. I had this incredible fear that I would be naming our baby Yoko as a tribute to the highway that I was afraid I would deliver on. I could see us on the side of the road with curious Japanese stopping to check on us and bringing their cell phone cameras with them. After having delivered two other children my modesty is not as severe as it used to be...but being the sideshow attraction for the Japanese was not my idea of a superb event. So we decided not to have a third child...and then God laughed at us and said: "Here you go!" Apparently a deity that can make it rain for forty days and forty nights doesn't have the time or inclination to acknowledge the existence of Japan traffic. Sure enough, as we rode to our Stress Test appointment to check why I was about a quart low of amniotic fluid, I knew I was in labor, in traffic, and timing the contractions while NOT telling Eric so he wouldn't use his training in Emergency driving to take us down to the hospital by any means necessary. On that day, Bradley was not in a rush to come and had to be coaxed out. In the grand scheme of things it seems silly to have worried...and oddly enough, it never occurred to me what I would call a boy if I had one...I didn't think we knew how to make boys. But, a boy we made, and we made the hospital as well that day. A week later, Eric would break the speed limit again getting us to Yokosuka as I was hemorrhaging...now, a month later...we took a leisurely trip to the hospital and then turned the driving over to the hospital who hired a Japanese driver to take us to meet the Cardiologist that would look at Bradley and tell us the news, good or bad, about the structure of our son's heart.
By then we had received the call from the Pediatrician...the somber quality of his voice still stays with me as he told me over the phone that the Karyotype results were in: Bradley had Trisomy 21 and it was not Mosaic. We had been holding our breath truth be told. We thought that if this was what our son would be diagnosed with, we had hoped it would be Mosaic - that he would have mild developmental delay and only be gently affected. Why did these things stick with us? Not sure really, denial of course is a beautiful thing, insulating you from the truth for however long you need it too. Mosaic could mean less medical intervention necessary and we're a one income family, we might get through this without being buried financially. But no, not Mosaic and not Translocation. Bradley was just Bradley and though he often didn't look to have anything but extra cute and adorable...the truth was it was there.
So we went to Yokosuka, and then they drove us back towards Atsugi. Although I appreciated the effort by the base hospital, we both agreed that our life would have been made simpler with a set of directions either by car or train. You see, I was adept on the trains. Eric was a master in the car. We would have easily found our way there and home and turned a rather long day into a rather short one. The doc squeezed us in during the lunch hour when no one was there. Then I convinced myself to think of this as nothing more than kindness, making room in a busy practice. For it to be anything else was just too much to think about at the time. And when we met the Cardiologist he questioned why we thought our son had Down syndrome. Pardon? He just couldn't see it in Bradley not like in other kids. But alas, we had our diagnosis and we knew...although he had ample experience with kiddos with Down syndrome in the States, here in Japan, the kiddos just looked different.
Bradley slept the majority of his testing...save one poopy diaper in protest. We looked at our son's heart and we felt a surge of adrenaline followed by joy when he told us Bradley's heart was good, was great! No pressure on his lungs suggesting the walls were a good width...no holes, nothing to worry about for Bradley in the world of Cardiology. We were humbled by the news, our prayers that couldn't take away a diagnosis we were afraid of, granted us a little guy with a healthy heart that wouldn't be taken from us before he had begun to live. Suddenly, the extra chromosome seemed doable. Bradley wasn't going to leave us because of his heart.
We hugged in the van home, even slept a little. We had won a victory, we had needed one, and finally we had one. The Baby had a healthy heart. From now on, every doctor we met would ask and we would say with great pride: "Nope, heart is good! No cardiac issues, healthy!" We didn't mean to sound braggy, we just knew that this was SO important. We were proud to share the gift we'd been given in a healthy heart for Bradley. That's the one thing we had, no matter what was going wrong in the rest of his body, we always got to say all was good with his heart.
I was standing in the doorway of Bradley's room in the PICU after his surgery on the 30th. There were six doctors and one Nurse standing around in a semi-circle including me in Rounds. I listened as Bradley's attending went through the information that I knew, the medications he was given during the night. He mentioned the episode of Apnea and the one episode of Unsat for his Oxygen...I nodded as I stood there...I knew all these things. I was in the room for all these things. Then he mentioned the heart murmur....
Um....I'm sorry? What did you say doc? He goes, you know the heart murmur... all I could do was shake my head...this was news to me. Geesh Doc when were you going to tell me? He looked chagrined when he said, "I thought you knew. But it's not bad."
Not bad. The echo in my head seemed loud as I let my logic sort through the ramifications. There's enough bad that not bad means I make a call to let his pediatrician know the result and then I leave it there. Not bad means I can't let this bother me now, I have to leave this one to Bradley's little body to decide where it will go from here. Not bad means that it gets relegated to the same region in my head that has the cyst in his brain - to be brought out when necessary but not before. So now I don't get to say his heart is completely good. Perhaps I was cocky about it when merely I was just desperately grateful. Somehow I got through this litany in my head and was able to rejoin the conversation with the doctors that were ready to send Bradley home. Bradley coming home; now that was something I could refocus on. He may have a murmur, but they're normal enough...and Bradley still gets to come home. With there being no other choice, this is good enough...this is always good enough.
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