Sep 16, 2009

Little Hearts, Big Hearts, and Angel Hearts

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A while back (Yes, estoy muy behind) we met up with fellow CHD kiddos for a picnic. Jesse and I ventured out with our heart babies, and despite all of the forces of the universe working against us- We made it! I was excited to see all the the heart families we have grown to love over the past year.

I was so happy to see many familiar faces- many of these faces only remember me from one exposure during Mia's wait. It was a few months into our stay at the hospital and I decided to go meet some other CHD families that met at the hospital once a month. I had no intention of falling apart in front of people I didn't know- but I knew they knew how I felt. Mia's line had come out-- AGAIN-- and it had been a terrible day. That day came rushing back to me as I saw their smiling faces. I felt silly knowing they saw me at such an emotional state, but was glad for them to meet Mia, and see that I was O.K. She was worth all of the tears!

Oh- and I this is what you get when you have a fixed lens and a group shot...not a good combination! Sorry to everyone who is cut off...if you read my blog :-) If you've been waiting for the reunion pics- get ready for many a photography mishap!

The pic on the right was our heart transplant picnic. It was neat to meet these families- the transplant kids are incredible! I loved hearing that some kids are taking swimming lessons, participating in sports, and giving THEMSELVES their medicine. So encouraging, and refreshing! I might have been a little over the top with asking people how they do things and why they use the drugs they do etc. I just cant get enough of finding out what my future might look like. I'm still a rookie!

The pic on the left- my heart home-girls. I stole this pic from Katie.

John and I attended a organ donation advocate appreciate dinner ( no pic). It was neat for me to meet the range of people that attended. I met organ recipients, family members of people waiting, donor families, and families of those who passed waiting. The evening was inspiring- and there is so much to be done to educate about organ donation. The most amazing part of the night for me was to meet a woman who lost her husband who then became a donor for many people. He saved so many. She now works for living legacy and is responsible for many registrations this year. She is amazing! One thing is for sure- there are young and old in need of organs- and it's humbling to see the look in the eyes of loved ones who are waiting for that call for someone they love. It's the look I'm sure my eyes could not hide. I am so grateful to our donor family- I love them!! I have a letter from our donor mom and if I get permission I will post a picture of Mia's darling heart angel!

This little sweet heart baby returned to Heaven. My heart is broken for their little family. His mother is amazing. She writes:
I prayed he would no longer have to suffer. . . and the Lord answered the prayer. I wish I could say that my peace outweighed my pain. It doesn't, but there is no bitterness. Just blessed to have had the MANY tender mercies that we had. We live and we learn. . . and quite truthfully, where else would you have your child be (if not with you) but in heaven awaiting celestial glory! He is now whole!

After learning of his passing I decided to team up with a local heart foundation to send out a care package for heart families that are faced with such heartache. I know nothing I can do will take away the pain, but I need to do something. It is still in the beginning stages, but will be up and running soon. If you have any suggestions as to what to include I would love some. email me. If you want to read about this sweet little baby click HERE

The best news of my month hands down was learning that this daddy and fellow CHD patient received a heart transplant. Paul grew up with the same doctors and nurses and I did, and he is one amazing musician. His story is inspiring and his blog will captivate you- it does me. This is for the few that don't read his blog already :-) Paul, I am so excited for your family! I am so grateful to your donor family- and ecstatic that you and Lynette get to raise that little girly together! It looks like you won't be the tin man for Halloween after all!

This about does it for heart news... for now.


Katie said...

I love this's one of my favorites of yours. Because of your special heart and your baby's special heart, you've touched all of ours! We are lucky in a way to be in this "club" I guess. There sure are some amazing people in it. Love you guys!!!

Analisa-creator of hairblingzcutethings said...

loved all the heart updates. I was just wondering about Paul. All you heart families are so special and have changed so many people's lives! You are amazing!

Erin said...

It's so great you have such a wonderful support group and so many people who know exactly what you've been through. I loved reading about all the heart updates, and hearing how you are becoming an advocate for organ donation... it makes me want to be involved in a good cause!

And yay for Paul's new heart! What an amazing man, I'm so happy for him and his family!

Greg and Heidi said...

Beautiful tribute to EVERYTHING you mentioned in your post. Thank you for sharing about Ethan. I would love to help in any little way I can with your project. Keep me posted.
Much love-

The Pifer's said...

I found your blog through my friend Crystal...I just wanted you to know I will be praying for your family.

Love, Hugs and prayers-

likeschocolate said...

what an adorable family you have! There is nothing wrong with being vulnerable or even emotional when you are with the other heart families because we all understand. It is 2 years after our son's repair and I still get emotional. I am so glad they were able to find a heart for your little girl and our family will keep you in our prayers that they will be able to fix your heart.

Natalia said...

Yes! you still make me cry every time I read your blog!

Erin said...

I love the heart updates. I am so glad that you share them with all of us. It reminds me of how blessed I am and I wish that I could do more to help all of those sweet children