Today I was at CHB with Brigitte for her psych appointment and for her first infusion of the new drug, Hizentra. She will get Hizentra once a week at home through two subcutaneous needles vs. getting IVIG once every three weeks via a peripheral IV. Her peripheral access is getting really bad, so we have been very lucky to get the go ahead to try this new drug.
Her appointment with Psych was at 10 and then the infusion was scheduled in the CAT/CR at 1pm. We had some time to kill in between and made our way to the cafe to check out the daily special.....lasagna or spareribs (YUCK!!!) So we headed back to Au bon Puke for some overpriced Corn Chowder and a tuna sandwich. How exciting. My mom and sister Alexis were kind enough to come with us today and served as great distractors!!
The moment came while I was standing at the soda fountain filling up my cup with diet pepsi that I swore off weeks ago. Since Sean's diagnosis, it has been my go to drink when I am not overinduldging myself with Kahlua Mudslides on the rocks. Don't Judge!!! I found myself becoming completely overwhelmed right at that very moment. It was high noon, and the place was mobbed with people. Here I am stopped dead in my tracks with tears rolling down my cheeks.
What happened? I guess what happened was that I realized my life has become Children's Hospital Boston. My sister had just made the comment "Shannon, your like famous here. You know everyone." I think it finally had sunk in that I have spent so many days living, breathing that hospital that even the staff at Au bon Pain knew me. We ran into countless nurses, doctors and friends just in our short venture from Fegan 10 to the Main Lobby, all with a ready smile and a big hello for Brigitte!! She is a face you don't forget. She is the one who always has the ability to make someones day. They love her. What made it so real today was that we happened to run into Brigitte's geneticist, Dr. Amy Roberts. We exchanged pleasantries, and then got down to the nitty gritty of Brigitte news when we both realized we were having a very intense conversation about Brigge in the middle of Au bon Pain as if it were nothing. Dr. Roberts was the first to realize "Lets have this conversation somewhere else." Me: "Are you free Friday, we'll be on the 3rd floor Surgical waiting area waiting for Sean." Her: "Perfect, when I get a break, I'll come up and we'll finish."
Seriously???? Sean is going to be laying on an OR table with his head cut open and I am going to be multi-tasking taking care of Brigitte business in the waiting room. This is our reality. I totally lost it.
I quickly composed myself, wiped my eyes with my T-shirt....and headed to the cashier. Proceeded to pay, sat down with Mom, Alexis and Brigge....got on with our day.
I guess what I am trying to get at is that emotion comes at different times. Often, inopportune times. Sometimes you have to just go with it. Let yourself have that moment. Acknowledge it and move on. For as you know, life goes on with you or without you. Whether your home and able to weep privately or standing in the middle of Au bon Pain with a tray full of corn chowder. If you don't have these moments, something is wrong with you. I have decided that these little moments are what continue to remind me that this isn't a dream, nor is it a nightmre. Its reality and we just need to make the best of it. Even if it means multi-tasking in the surgical waiting room.