The morning after our son was born, Rob came in early to be with me. We were anticipating a visit from the Pediatric Cardiologist. There had been no testing done on Michael when he was born; it was a "wait and see if he develops symptoms" scenario, which as I mentioned before, led to months of worry and concern that hadn't been necessary. This time, we were having the cardiologist who had seen Sarah come in to check our new little boy. We had been told that with the knowledge of our family history of Pompe's, now a simple ultrasound of the baby's heart could diagnose him. If he had it, the damage from the disease would have already started prenatally, thickening the walls of his heart ventricles.
Rob continued to try and bring comfort and reassurance to me; my heart would not be comforted. We sat and waited in dreaded anticipation of the doctors arrival, not knowing if the news he brought would bring a wave of relief, or a trainload of despair. We didn't have to wait long. Within a few short, but eternally long minutes, the doctor walked in the room. I examined his face, the one that bore all the lines of sadness and wear from telling people bad news. The lines looked deeper. He slowly walked past the foot of my bed toward the chair where Rob was sitting. He gently stroked my blanketed foot as he walked by, and in that moment, I knew my suspicions were right. He sat on the edge of my bed, his shoulders rounded and bent under yet another weight he carried. He slowly raised his eyes and looked at us. "There's no way to make the news good. We're looking at the same thing again." A slight nod of affirmation was all I could muster; fighting back the flood of tears that were pushing their way forward. Rob looked stunned. I think he really believed our boy would be fine. Since there were no questions, we already had been down this path before, the doctor got up and left, expressing sorrow as he went. I was later told by the nurses who worked in the nursery, that after examining our son, he sat in a chair and wept.
Rob and I spent time consoling each other; crying for yet another baby we wanted to love and get to know for a lifetime, but were keenly aware we would have for only a brief moment in time. The dream was getting shattered again. They brought him into us, and we just stared at him. Reality takes awhile to sink in at times. We both realized we had to pull ourselves together quickly, as Rob's parents were bringing Michael up to see his baby brother for the first time. It would be interesting to see how this rambunctious 2 year old would react to his competition for mommy's attention, but his exuberance would bring a welcome respite from the heaviness that surrounded us. We also had to figure out how and when to tell Rob's parents that this baby was going to die as well.
The door to my room slowly swung open as Grandma came through the doorway with a wrangled Michael in her arms. He looked as if he wasn't at all happy to have been corralled, and Grandma looked like she had just wrestled him down. Michael's eyes fixed on the baby lying asleep in my arms. He scrambled down from Grandma's embrace and came over to Rob, working his way up to the side of the bed by the baby. He looked positively confused by this new little person, and while curious, he seemed not too sure he liked the idea. I had Rob put him up in bed next to me, and I introduced him to his brother. He warmed up to him quickly, pointing at and poking his eyes, mouth, nose...examining him almost as thoroughly as I did. Once he had finished giving him the "once over", he deemed the baby a good thing, life went on, and the activity ensued. Two year old boys need room to run!
We had decided that Rob would tell his parents the news. Actually I think it was more a case of me not wanting to do it, and since they were his parents, he got the job. We knew the news couldn't wait, so I rounded up Michael for a walk in the hall with me, enabling Rob to be alone with his Mom and Dad. I shut the door tight as I went out with Michael. My ears strained to hear anything from that room, but for the first 20-30 feet we walked, I heard nothing. Then suddenly, all the way down the hall through closed doors, I could hear Rob's mom crying, "oh, no! oh, NO!", over and over. Hearing her agony made mine all the worse, and I fought back tears. Hearing her mournful cries ripped at my heart, causing it to bleed sorrow all over again. I focused as hard as I could on the little boy wiggling around next to me, and on the faces of the strangers who passed me in the hall who had no idea of the pain being felt by my family in that moment. I stuffed those emotions as hard as I could; I didn't want people to see me cry. This was a happy place; no one needed to see a crying face.
Our walk ended, and Michael and I made our way back to the room. I do not have a good recollection of what happened after that moment. I'm sure there were hugs all around, and many promises of prayers that would be prayed. It was not a joy-filled room, and I felt the pangs of having been cheated out of the happiness a new birth should bring.
Soon other relatives arrived. Rob's sister and brother-in-law came. Her first question was, "What's his name?" Good question. We still hadn't named this little boy. Before he was born, we had tossed around a few names we liked, but couldn't come up with a definitive choice, and now, with the news that he was dying, it seemed almost fruitless. There were definitely moments of "why bother?", and "what's the point? He's going to die anyway". Bonding was taking much more forced effort, at least on my part. So when we presented the names we had liked, Rob's sister took 2 of them, put them together and said, "How about Matthew Ryan?", and that became his name. How horrible is it that a mother and father cannot even name their own child? At that point, I was too numb to care. He had a name, and the decision was now over. One less thing to have to worry about. Thank God.