Baby Braden Petska

Sunday, March 07, 2010

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 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 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 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.


Anonymous Pam said...

Keep writing Steph. You are a beautiful composer of the written word. If it helps you for 1 second of the day then it works. That garden sounds like a wonderful place at the hospital, what a wonderful idea. It is unfortunate that ideas like that stem from a families tradgey. Just remember that you are not on the other side of the road alone, we are all there with you to carry you when you cannot take another step forward. All my love to you, Rich and "O"!

11:45 AM  
Anonymous Jennifer said...

Oh my gosh.... I am just streaming in tears tonight. Your posts are so hard to read. It just does not seem fair. I have 2 little boys, one that is 17 months and one just turned 3. I cringe to think "what if" something happened to one of them. I hate it! I hate that feeling hanging over my head. Just the other day, I held the little teddy bear that my son received in the hospital from your charity and I cried. I thought of you and your family and your Dear little Braden.

Meeting you at Nevaeh's party a couple weekends ago was bittersweet. I just wanted to give you a big hug and cry for you.

I pray tonight for peace in your heart for the rest of March, and every day. You are Strong and Braden was Lucky to have you as his parents.

From one Heart family to another~

Jennifer Repp

10:10 PM  
Blogger Jer, Kari, Alayna-Maria said...

Looking ahead in March...thinking of leaving March behind... it is another in a long line of bittersweets.... we are all here with you, reading and crying and wishing for a way to make sense of it all...
I am so sorry for your hurting hearts!

7:24 PM  
Blogger Pat said...

Thank you for sharing your innermost thoughts and sorrows. You give so much, and I wish your pain would be relieved in relation to what you give. You allow us insight, which helps us be more empathetic. Keeping you always in my thoughts and prayers and sending you the light to surround and help you in your journey of healing. xoxoxo

8:16 PM  

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