Clincial drug trials are hard.
Blood draws
Changing plans
Off schedules
Late nights
Early mornings
Fasting bloodwork
Delayed flights
Unexpected tears
And clincial drug trials are beautiful.
Airplane rides
New cities to explore
Hotel adventures
Professionals caring for your family
Hope for a better future for your child & those w/PWS
Extra one on one time with your child
Unexpected blessings
Reflection
Gratitude
Friendship
Silver linings
Nashville has been our home away from home for the past several months, because Ellie has been participating in a clincal drug trial for PWS. Our last visit, I was hit so hard with beautiful perspective and shown such gracious silver linings.
For the past 7 years of Ellie's life, I've prayed for her to follow Him, make friends, be happy, and be fulfilled in this life. It's the epitome of the saying many of us PWS parents want for our children...Live Life Full.
Well, this past visit to Nashville we arrived and dear PWS friends picked us up from the airport. We laughed, talked, shopped, explored, and had the best time. The next day Ellie and I got to meet and spend time with another dear PWS family. The kids got to find their beat, and tore it up dancing to live music...us moms just sat back and enjoyed the happiness...no thoughts of PWS and its challenges. And I realized, once we were home...Ellie and I have gotten to have these special experiences with PWS friends every.single.time. we've come to Nashville. Such perspective and gratitude for this.
But, this past trip was one I will never forget for as long as I live. I've truly never seen Ellie happier than I have on Monday night. Our hotel we've stayed at everytime, Holiday Inn Nashville-Vanderbilt (Dtwn), is truly something special...and it's the staff. Every single one of them is professional, personable, and friendly. But, Ellie has connected and formed a unique and hilarious friendship with two of them. It's hard to put into words how special they are...Morgan and Dylan.
This week we came to Nashville knowing that Morgan had accepted another job and was no longer at the hotel, but she reached out to me and said she would love to get dinner with us when we were in town. How sweet is that?! Ellie was ALL about that and could not stop talking about our dinner with Morgan. We had dinner scheduled for Monday night, and Ellie knew as soon as we got back from our morning trial appointment that Dylan would absolutely be at the hotel and she was so excited to see him. Except he wasn't. Dylan was off this past Monday. I was so proud of Ellie finding out this news and holding it together in the lobby, but when we got up to our room, she definitely had some tears. I contacted Dylan and told him we missed him, hated he was off and invited him to dinner...not thinking or expecting him to come on his day off. But this is where I look at all this, and I'm blown away by God's provision and intricate precious details. We went to dinner and Ellie had the best time visiting and talking with Morgan. She is such a precious soul and beautiful person. She made points to talk directly to Ellie, asked about her, got to know her, and saw Ellie for Ellie. Everything I've prayed for in a friendship for Ellie. But then, I got a text. Dylan was almost to the restaurant to surprise Ellie...on his day off. He walked in that restaurant with a rose to give to Ellie. He picked the rose, because Ellie had been educating him on the fact that candy is not good for her or others with PWS. And y'all she absolutely adored the rose. Her reaction to his surprise visit was everything. Emotion and feelings are difficult for Ellie and most of those with PWS. Daily we work on showing emotion, understanding feelings, and all the appropriate social stuff. Well, when Ellie turned around and saw Dylan...it was the sweetest thing. She was so utterly surprised, truly surprised. And so, so happy. It was the best night, and I've never seen Ellie happier. The three of them had the best time together and with everyone at the table. Ellie left that restaurant rose held high, and she practically stopped everyone to tell them about her amazing night along the way. I just wanted to bottle up this night, and her happiness and hold it close. But that's the beauty, I'll be able to cherish it forever and hold it close on especially challenging days or times. What a gift.
Who would've thought that a 7 year old going to Nashville for a clincial drug trial could be so deeply impacted by two young 20 year olds working at a hotel?
God, prayer, friendship and silver linings.
I encourage you to look for and find yours ❤
