Tuesday, October 4, 2011

The sisters of my heart

This past weekend, I had the.most.amazing.opportunity. I had a chance 1) to leave my children for the first time ever and 2) to get together with my fellow Sisters by Heart board members. This past weekend was our official "Board retreat." (But let's start this off right by clarifying, right off the bat, that NO Sisters by Heart funds were used to pay for the retreat - partly because it wouldn't have felt right, and partly because, well let's face it, we just don't have that kind of money. I know a lot of our faithful donors read my blog, so rest assured, your kind contributions were not used to finance a weekend getaway!)

But what a getaway it was!!! For one thing, you have to know I'm not the type of person who leaves their kids for a weekend unless it's for a really good reason. I've only left Sierra twice in her 4 years - once, when I was a camp counselor to my sweet 6th grade AWANA girls at winter camp (fun, but given that I was 10 weeks pregnant, and sicker than a dog the whole time, I wouldn't exactly call it a vacation) and the second time, when I was recovering from my c-section delivery of Bodie (which no one in their right mind would call a vacation). And, outside of his hospital stays, I have never left Bodie. So, this weekend was BIG. To have the opportunity to get away from my kids and RELAX and bond with other heart moms was nothing short of incredible!

7 of our 9 board members were able to make it out for the weekend. My parents have a beautiful home out in Palm Springs and graciously agreed to let us crash it for the weekend. A huge shout-out to Bill and Nancy Gerrish for their generosity in allowing us to do that!!! So, the other board members (coming from Virginia, West Virginia, Michigan, Arizona and other parts of California) made their way out here for a weekend of planning, strategizing and bonding. I'm happy to say that all 3 of those things were definitely accomplished!!!

In terms of planning and strategizing, we had a great conference call with the parent arm of the The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) (a collaborative of pediatric cardiology programs nationwide working to improve dramatically the outcomes of care for children with cardiovascular disease) - they were having their conference this past weekend as well, and since we weren't able to send anyone to the conference, they were kind enough to arrange a conference call so that we could meet some of the other parents involved. It's a really exciting initiative!

We also got a lot of packages prepped (let me tell you, the process is SO MUCH easier when there are 7 of us prepping packages instead of just 2 - I couldn't believe how fast it went!)
and A LOT of time spent planning and strategizing where we want to take Sisters by Heart over the next couple of years and in the long run. It was really wonderful to get us all in the same place, both literally and figuratively. I am so excited for everything we have planned and where we're headed! I think we've only scratched the surface of what we can do to help these newly diagnosed moms.

From a purely personal perspective, it's hard to put into words just how meaningful this weekend was. Honestly, if I could have handpicked a group of women I'd want to work with, I don't think I could have dreamed of a group as amazing as these women. It's hard to explain, but we just gel. We just get each other - and work so well together. I have to say it was BY FAR the best Board retreat I've ever been to. We conducted our "official" Board meeting business on rafts in the swimming pool. I don't know that it gets much better than that, does it?

I love these women. I honestly can't remember the last time I laughed that hard. I think I laughed for probably 12 hours straight on Saturday (a touch of it might have been the alcohol ingested during those 12 hours, but truthfully, just as much of it had to do with just who these women are - they are incredibly strong, brilliant, funny and resilient women). I would not wish HLHS on any family, but I am so grateful that Bodie's journey allowed me to meet these women. Something so beautiful and amazing has come of such a tough diagnosis.
I seriously cannot wait for next year's retreat!

I carpooled home with 2 of the other moms (Sara, mom to Townes, who lives 10 minutes away from me, and Laura, mom to sweet angel Gwen (who passed away at 2 months old), who caught a flight out of LAX the morning after the retreat). We dropped Sara off first and it was so fun to watch her homecoming, to see her kids come spilling out of the house with just pure excitement that mama was HOME. :-) My homecoming was no less sweet. My kids did awesome all weekend with daddy, which honestly, surprised us both a little bit! ;-) When I walked in the door, Sierra of course came running to me, screaming "MAMA!", and jumped into my arms for the biggest hug ever. Bodie, on the other hand, was completely different. He came walking as fast as he could behind Sierra, but he did not utter a word. I think he was so stunned he didn't know what to say. His entire body was bursting with excitement - it was like he was lit up like a Christmas tree. I picked him up and he just kept touching my face and looking at me with this wide-eyed wonder and beautiful smile. I think he honestly thought I was gone for good. It was the best welcome home I've ever gotten!!!

I have so many incredible stories I could tell from the weekend - memories made, jokes told, tears shed, bonds deepened. But there is one moment in particular that stands out. On Monday morning, Laura (angel mom to Gwen) watched Bodie for a few minutes while I hopped in the shower. I peaked out the window, to watch her pushing him on the swing and to see him smiling and giggling at her. Just being so silly with her. Although he has gotten better, Bodie still doesn't open up to just anyone, particularly when mommy has been away all weekend. Typically he is much more guarded. But he didn't have any guard up at all with Laura. He just gave her the most radiant smile. It's like all of his barriers were down, like he somehow knew she was safe. I think he connected with Gwen in her and he just knew. She was safe. That's how it is with us Sisters by Heart. These women are my safe place. They are truly the Sisters of my Heart. I feel so abundantly blessed to have these women in my life.



  1. Amy this is amazing!!! i remember you telling me the plans for Sisters of the Heart before it was "born: and i am totally floored by what you guys have created. just so amazing. you guys should be so so proud. (and i'm also glad you got trashed and had fun floating in a pool)! you all deserve it.

  2. Amy, this post is so beautiful and so perfect. I can't express how much it meant to me to be with all of you and finally meet you in person, although I feel as if I have a thousand times over. I know I was "Emotional" all weekend but was so blessed to have you all around me. I love each and every one of you ladies and am lucky to have you as my "Sisters". Thank you doesn't begin to cover it. <3