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.