I was sitting in one of my mom's groups on Wednesday when I realized that I would be missing the next two Wednesdays because of big appointments for Drew. The first one is Dec 5 and is with the cleft and craniofacial panel. Yes a panel. It's a four-hour long appointment and a parade of doctors will be coming in, probably not with a lot of good news. Drew saw the panel when he was three months old, so technically this is a follow up appointment. Last time he saw an otolaryngologist, a geneticist, a pediatrician, a clinical nurse specialist, an oromaxillofacial surgeon, pedodontist, two audiologists, a social worker and a speech pathologist. I am dreading this appointment because most of the time I can convince myself that Drew is doing great and we only have to worry about his heart issues, but this panel of doctors will be looking for things that are wrong and it feels like being diagnosed all over again every time they tell me what I should look for. I am trying to remember that Drew is the same today as he was yesterday and just hearing the information does not change who he is.
The following Wednesday is his heart cath at UCSF. I am not too worried about this appointment, but I think my anxiety will increase as it gets closer. Which is why I am keeping myself busy with holiday parties, shopping, painting, etc. I am also nervous because I had a total breakdown after the last cath and I am hoping to avoid that this time. But I do have a friend lined up to take care of our family the day after so I can "decompress" if I need to.
Last night was another Hearts of Hope meeting. At first I was sad hearing everyone's stories, but by the end of the night I was inspired. I was sitting in a room full of women (and a few men) who have been through A LOT. And each person was encouraging someone else. They were there not just for support for themselves, but to reach out to someone on the same path. These people are amazing and I am honored to be among them.