A day to be proud

Everyone knows that I'm really passionate about Johns Hopkins Hospital and will be forever grateful for all they did for us. Today was one of those days that made me feel proud, fortunate, blessed and humbled. I was asked to participate in the Hopkins Radiothon. This is a huge annual fundraiser for the hospital. Monies from the Radiothon help support the ECMO program and grants to the Family Advisory Council (among other things). I met another family in the waiting area of Mix 106.5. Their daughter receives monthly transfusions at Hopkins. Their beautiful little girl, who they called Belles, was running around the waiting area. She's 17 months. I was imagining that whatever her condition that necessitates these monthly visits, her parents somehow found the time and felt the passion to come and speak on her behalf to help raise money for the hospital. Then I realized, wow - I'm here too - among these people. It's funny how you never realize you've been through such an extraordinary experience until you see or talk to someone else who's been there. I immediately felt so grateful for the care we received at Hopkins. When the DJs interviewed me they asked lots of questions about Jack and our journey. "How did you feel when you learned of Jack's condition?" "What was it like when he went on ECMO?" "How long did you have to wait until you held him?" "What was it like to see him come out of the operating room?" When I came home I read through some of his CarePage entries from that time. In some respects it doesn't seem like our life. It seems more like I was watching through someone else's eyes. For that, I'm thankful. I feel like I've reached a pivotal point in this journey. One where I don't feel so haunted by the memories, but rather, recall them with just enough detail to keep me reminded of the amazing gift we have been given. I see that every time Jack runs to me and calls "Hiya Mama!"

When I got home tonight I received my Hopkins Children's NewsLink Email. There's a story in there about Pamela Griffin. She's a co-chair for the Family Advisory Council (FAC). I am also one of the family advisors. We meet monthly to discuss aspects of policy and how we can help do more for families and integrate family centered care into Hopkins. Pamela was also just named the first full-time parent advisor at Hopkins. She is there to keep a pulse on the day to day hospital doings and give input on the parents' perspective. They wrote a great story on Pamela and the council. Click here to read it. Again, I feel so fortunate to be able to give back to Hopkins, if even just a little bit.

I hope everyone had a great Turkey Day. James' parents were in town with us and we had a great time. Both kids are now sick again with a head cold. I had to take Jack to the pediatrician and he's on Xopenex breathing treatments. They seem to have made a big difference already. He isn't slowing down, despite the cold. He's also a talking machine! He went from 5 words at 26 months old to repeating everything and constantly chatting. Apparently he was doing a lot of listening because he knows words that we haven't even tried to teach him.

Well, I better head to bed and get rest before I get the cooties from the kids or James!