Other than seeing Sam have fun, the best part of these events for Chris and I is to meet/reunite with other families who are on this 'heart' journey with us. We saw little Matthew and his family, and met Emery and her family (photo below). Both kids are very close to Sam's age. All three have very different and yet similar conditions, and all three have had/will have very different and yet similar medical/surgical journeys. It's hard to explain. But it is comforting to us to see their smiling faces and to compare stories and experiences with them. I can't wait to see them at these events through the years, and watch them grow and thrive despite their broken hearts.
We also met a family today with a 14 year old girl. While she looked healthy, her mother told us they will soon be going on the organ list, awaiting a heart and lung transplant. What a sobering thought. When you are healthy, and all is right with the world, you tend to unintentionally ignore the fact that terrible things are happening. Even worse, you tend to believe that these terrible things can't happen to you. Chris and I did everything right in our lives. We both went to college, waited to live together until we were married, went to grad school/co-oped to give ourselves the best start in our careers..I could go on and on. If you do everything 'right', doesn't that mean these terrible things skip over you and your family? Despite everything we did right, our child will suffer. It's hard not to feel like it is a punishment at times. Punishment for what, I don't know. But I guess that is the challenge. OUR challenge is to thrive joyfully for the glory of God inspite of our lot in life, and to teach Sam to do the same.
But there is another challenge. It is to do what you can for those in need, the way that you would hope others would do for you. We have always had our needs taken care of, without ever having to ask. I have recently been searching for ways to do the same for others, particularly others suffering from congenital heart defects. I came across a wonderful family in the CHD community. Stefenie and her family have started a campaign called Cuddles from the Heart. This is a blanket donation program, where new homemade/store bought blankets are distributed to children and their families during their hospital stay to give them a sense of comfort and support. Originally, Cuddles from the Heart benefited the University of Iowa's Children's Hospital, where Stefenie's son was treated for his CHD. Cuddles has since spread, and I have volunteered to start a Cuddles branch in Georgia to benefit patients at Children's Healthcare of Atlanta. I have not set a donation or distribution date yet, but when I do, I will be sure to post on how you can assist me in answering this challenge!
~Kathy
4 comments:
Because you did everything right, and grew up strong and full of faith, God blessed you with an angel who would need a little more help in life....because he knew you and Chris would be the best possible parents for this angel, and would treasure him for as long as God plan provides. We are all blessed because of this gift.
Nana
I know we never had the opportunity to meet, but I follow your blog and Sam's progress often. I wish we had been able to attend the Kids at Heart Christmas party so that I could finally introduce myself to you in person. I am so glad to hear that Sam is doing so well and his pictures are precious! I just wanted to let you guys know that I have continued to keep you and Sam in my thoughts and prayers, and hopefully we will be able to make it up to a Kids at Heart function one of these days and say hello!
Helen Moore
(My daughter, Grace, was born with HRHS with Coronary Sinusoids and was transplanted in March of 07. We spoke on the phone just before Thanksgiving last year.)
I can totally relate to what are saying about thinking that this was all some sort of punishment for something you did or didn't do. I think we all go through that in the beginning but once we really take a hard look at it we are thankful that it did happen to us and not someone else who wouldn't love our child the way we do. God doesn't make mistakes and we certainly have come to understand that better.
Glad you were able to get out and meet some other families. It is so important to make those connections.
Stef, Ryan, Wyatt and Logan
http://www.whenlifehandsyouabrokenheart.blogspot.com
Living life by what we perceive as good and bad can never come close to what God sees. In your lives God saw only good! His gift to you was perfection...Sam! There is no defect in Sams little heart through Gods eyes he is perfect. He will bring love and joy to all because he is...Gods messenger of Hope and Love.
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