A special contribution by guest blogger Gwyn Spearman
It starts with one SMALL step...
That sums up our approach to dealing with our "new normal." We have taken small steps, toward big dreams, goals, hopes, and expectations for Ellie. First, we navigated the diagnosis. We researched. We connected with other families. We became involved with the Foundation for Prader-Willi Research. We learned to advocate and educate. We hosted our first event called One SMALL Step. And, we haven't looked back.
This picture reminds me of so many things. I love it for how strong Ellie looks sitting up all by herself. Sitting took lots of hard work and determination on her part. She looks so confident in this picture, and proud of herself.
I also love the fact that I look at this picture, and it takes me back to the decision to host our first One SMALL Step event. I remember being able to breathe after we decided to host an event, because for the first time since Ellie's diagnosis, I felt like I got a little control of life back. I needed to be able to "do" something to feel like I was helping Ellie, and this was absolutely perfect. These events help me feel like I have a little piece in changing the future for Ellie and her friends. Mentally, I set lofty goals to fund-raise major dollars, and I lose sleep at night thinking of ways to bring in just a little more. I drive my husband crazy! But, I truly believe it is my momma bear coming out, and I just want the absolute best for my little girl. What parent doesn't want that, right?
David and I are in a unique situation because in some ways we have almost been told the future of our child.
And it scares me. I have been told it will be hard, challenging, uncertain, limited, painful.
Wouldn't you want to change that? That is what keeps me up at night. That is why I host events. That is why I raise awareness. That is why I shamelessly ask for donations. That is what I pray every day for. I want to be a part of changing the course of my daughter's future for the better. I want to help eliminate her challenges. I want to take away her pain. I want her and her friends to be FULL.
So, as I look at this picture, it fills me with hope. By taking One SMALL Step, David and I can help make a difference in Ellie's life. Our 2016 event was our BEST to date, and I swelled with gratitude and pride. Events like this change lives, change hearts, and change the world, and we will be part of that for Ellie and all her friends fighting PWS every. single. day.
Do you have a story of hope to share with others about your experiences with PWS? Send it to us!