Earlier I was rushing to write everything down so that I would remember it. I had so much flying around in my head I had to get some of it out. Although in doing so, I forgot a few things.
First, it has officially been one month since the diagnosis! It seems like forever ago that we stood in the office, crying, holding Logan tightly telling him it was going to be ok, no matter what happened. I’m fairly sure we were convinced he would pass that week. However, here we are one month later and he is still strong.
We know we are part of the more fortunate bunch of those diagnosed. About once a week I get the strength to read other stories in the magazines I have. Many of those passed have been younger than Logan. I read on FSMA’s facebook page of a little boy who passed that was born a month and a half after Logan. It was such a jolt to read about him. It also made me that much more grateful for the time we have and will have with him.
Second, I forgot to mention my run in with a family (mom, dad, baby) at the doctors office Tuesday. As we got off the elevator we heard the cutest giggle then hiccups. They were standing outside the door. The mom got the door for me but I told her we couldn’t go in. One of the main nurses we know came out and asked if we were waiting to be let in. I let her know it was for a flu shot. I asked the family how old their little girl was and they said she was 4 months old. Immediately I realized they were standing outside so their little girl wouldn’t get sick from the waiting room; she just needed her vaccinations. When we came back out they were still waiting. They were saying bye to Logan and I decided to tell them briefly about Logan’s disease. The mom was immediately brought to tears and the dad held his daughter a bit closer. I wished them a merry Christmas and asked them to give their little girl an extra hug today.
As I walked away back into the elevator with Logan, I didn’t feel angry. I didn’t feel sad. I felt happy for this couple that they had a beautiful baby girl who sat up straight and tall, with a giggle of an angel. The feeling surprised me. Although to be honest, I’m not sure what I expected. I deliberately try to have a positive outlook, otherwise the depression would eat me alive. But even so, I don’t expect to maintain that every day (even though I try). So to automatically have that response made me smile a bit more in that moment.
Tonight was the third night to do the cough assist and suction machine. Our baby boy is so freaking smart lol. He cries during the cough assist (heartbreaking :() but tonight, as soon as I turned on the suction machine he stopped and closed his mouth. He figured if his mouth is closed I can’t suction it. Well…he is wrong lol as I have to suction him to make sure I get anything that comes up in his throat . When I turned the suction machine off, he started crying again. Goodness…three days into this and he thinks he has figured it out. We have a bright little boy 🙂