Maybe it was the confidence Ellie had today
Maybe it was the warm, receptive nature of the class
Maybe it was Ellie owning the fact that she knows what is good for her belly and what is not
Maybe it was because Dr. Labanick always make us feel so welcome
Maybe it was because a beautiful student made me cry by touching my momma soul and lifted me up
Maybe it was the student that offered a piece of advice about anxiety because they know firsthand
Maybe it was the thoughtful and sincere questions the students asked
Maybe it was because I didn't run out of time presenting
Maybe it was Ellie cracking me and all the students up on multiple occasions
Maybe it was hearing that a previous student told others all about PWS when the opportunity arose
Maybe it was all of this
You see, today was our sixth visit to the University of South Carolina Upstate to share our journey of PWS. We've talked to students taking Genetics & Society and students taking Developmental Biology. Every time Ellie and I go, I leave feeling so thankful for the opportunity. Our first visit, Ellie was in a stroller, and just shy of turning 1. Today, my 5 year old walked in like she owned the place. Obviously she had many questions...she needed to know where the mascot, Sparty was, and why the students weren't in the classroom right when we arrived? We were early, can you believe that?! Go us.
We had brought FPWR wristbands for the students, so they could remember our visit, and that was Ellie's job to pass them out. She had carried them in, packed in her Trolls valentine bucket and was super, duper proud of it. Once everyone arrived and Dr. Labanick introduced us, I tried to begin the presentation...but Ellie had other plans. She looked out at the class, and so confidently and clearly said, "Class, raise your hand if you love Princess Poppy?" I repeated the question, and almost everyone in the class raised their hand and rolled with laughter. We then went on to educate them on the greatest movie of all times, Trolls. Just when I thought she was done, she looked out again and said, "Ok class, raise your hand if you know my name." Laughter erupted again, and Dr. Labanick informed the class that her question would make an excellent test question.
I always feel so comfortable talking about PWS and sharing our story. Maybe it's because it's something I feel in control over, maybe it's because I look at Ellie and feel the drive to share her beautiful story, or maybe it's because it's become my purpose. The presentation flowed so well today, except for when Ellie decided to use the Trolls bucket as a mega phone, or when she felt the need to interject tidbits of randomness. For a 75 minute class though, I thought she did amazingly well.
But, nothing could have prepared me for the end of the class. A beautiful young woman came up and shared her precious journey with me of challenge, She affirmed that Ellie's diagnosis does not define who she is, doctors can't predict her future, and looked me straight in the eyes and said, "You are doing a wonderful job. She feels your strength, and all that you are doing for her. My mom did the same thing...she was with me through countless surgeries, hours upon hours of therapy, and I am better for it." Tears were flowing. She will never know magnitude of her encouraging words and just how deeply she touched my soul.
So, on this Rare Disease Day 2017...I'm feeling completely and utterly emotional, yet deeply and profoundly grateful for the opportunity to share our story; and blessed to have these rare, beautiful moments where I know it's God's way of showing me He taking care of our family, and is using this for good and for His glory.
