Wings of Angels Endowment

Well, missing a day isn't what I had intended. I was going to write something before midnight struck, but we didn't arrive home until after the midnight hour last night. While Gramma Patsy was able to get her quality time with Owen, Rich, Marci, and myself drove to Milwaukee for a benefit (Wings of Angels Endowment) for another heart family. The benefit was in honor and memory of Carsyn Buchmann, a baby girl who too had HLHS and earned her angel wings this past September. We followed her story as she fought for almost 4 months to overcome the many obstacles in her little life and for her parents to be able to bring her home - something they were sadly never able to do. Now her parents' fight begins - to spread awareness of CHD and help build a healing garden at Children's. The garden will offer a private location for families to "get away." It will be a place for patients to escape hospital life when they are feeling better....it will be a place to provide hope for patients and families. It was a beautiful event and it was amazing to see the amount of support this family has received along their journey. We were able to attend this event with our special friends, the Slagers and the Wallaces. Among the attendees were doctors, nurses, therapists, and other heart families we knew or just met for the first time. Seeing and speaking with Kathryn (B's speech path), Dr. Ghanayem, the nurses, and many of the heart families we knew, brought on emotions I didn't expect to feel as the night wore on. The Buchmann's made a video highlighting the children who are survivors of CHD and those who have sadly lost their battle. Braden was among those they highlighted in the video. The music, the words, the pictures...wow....there wasn't a dry eye in the place. Dr. Ghanayem spoke about how much they have learned from every CHD child, including Braden, Nevaeh, and Carsyn. It felt good to hear this, although I would've given every bone in my body to be on the "other side." As I've stated in past posts, you grieve so much more than the child you've lost....you grieve their presence, their future, and everything about your life that involved your child. For us, one part of our life we grieve is everything that is encompassed in the "heart world" - the doctors, nurses, clinic visits, and the ability to place your child as one of the "poster children" for HLHS. At one point in the night, I said to Jamie, "Wow, this really sucks to be on this side of the road." I guess I can express myself better in writing than when I speak :) I actually said this last night as I was trying to speak with another heart mom about our own journey. I felt like I was talking in circles, trying so hard to get to the point, but felt like I just couldn't "nail it." It's so difficult to put these emotions into words at times. Writing actually helps me to cleanse what I harbor so deeply inside. I might not always make sense as I tend to ramble at times, but for me, allowing the darkness to escape has allowed more light to pour in. Thank you for continuing to read, for expressing your kind, encouraging words, and extending your continuous support through thought, prayer, and written encouragement.