Our march was today. It was much more difficult than I thought it would be. We got there pretty early because we had access to an area that allowed us to have our picture taken with Kevin and Enza Youkilis. We waited for that in the pouring rain, then headed out to the main area for the festivities.
I think I held it together pretty well until I saw the “NICU Reunion” tent. I wanted to be able to walk into that tent with my own NICU graduate, but obviously that’s not the case. It made me sick to my stomach to stand there watching the people under the tent, but I couldn’t look away. Dave and I both did a lot of crying and I wanted nothing more than to go home and crawl into bed. Things got bad again when I filled out a slip to be part of the paper chain that was being made. I knew ahead of time that I would need a white one, which represents babies who died, but it was the other colors that set me off. One of them had a spot for birthdate and birth weight, and obviously was for babies who survived. I could barely write Jillian’s name on her paper once I saw it out of the corner of my eye. I would sell my soul to be able to write Jillian’s name on any slip other than the white one and I felt heartbreaking jealousy towards the people who got the other colors.
Things got a little better when we found our friends from our support group. We all talked about how we didn’t want to be there and how hard it was. The rain stopped just before the walk was to begin, and we ran into our grief counselor right before it started. We didn’t know she would be there, and she didn’t know we would be there.
It was very nice to see her, and as we started walking, we talked about me visiting the NICU with her. I need to go back there. I know it’s going to be very difficult, but I need to see the place where my daughter lived her entire life. I need to hear the constant beeping and smell the distinct smell that the NICU has. I’d also like to see at least one of the nurses who cared for her while she was there and just hug her. She’s one of the people who knew Jillian best, and I want to thank her for caring so much for our entire family. Shallowly, I’d like her to see what I look like when I’ve taken a shower, gotten some sleep, and changed out of a hospital gown. I’m hoping I’ll be able to go into the room where Jillian died while I’m there. I need to sit in the chair again and remember everything that happened as we were saying goodbye. I’m hoping that being in that room will make me feel some sort of connection with her again. I always feel a connection with her, but there are some moments when it’s stronger than usual, and I’m hoping this visit will be one of them.
We left the walk at the halfway point. It was partially because we were soaked and freezing, partially because we were almost home at that point, and partially because it was too hard to be there. I’m glad we did it, and I am so proud of the money we raised (our team of just Dave and me raised over $5000), but I’m glad it’s over. Thank you to everyone for your amazing support.