It has been an absolutely crazy, wonderful, inspiring, and emotional week!
I won’t go into detail about what we did because my husband has been doing an awesome job blogging about it. (Definitely recommend reading these).
It was my first time “lobbying” and being able to share Hannah’s story personally with Senator Dean Heller and Congressman Joe Heck was amazing. We also had Senator Harry’s Reid’s staff initiate the conversation that we reach out to their local office here in Nevada because they have rare families in need of support, which was very validating and wonderful.
The most difficult part of this trip was driving by the Children’s Inn and Clinic Center at the NIH. As soon as I saw the playground in their backyard, I could feel my body tensing up and my heart starting to break again. It was all I could do not to break down right there. The memories…
But I have to admit the best part of the week was being able to meet and spend time with some amazing parent and patient advocates. Being around people “like me” who are so passionate about rare disease awareness has been such a therapeutic experience – they “get me!”
Hannah, my sweet Hannah, we shared your pictures, your story, and your spirit with hundreds of people this weekend. I am so proud to be your Mommy, to be the one that got to call you mine. You still continue to inspire people, and your smile continues to capture their hearts. I love you and miss you, baby girl.