What a fun, inspiring few days we’ve had!
Yesterday, the Mito clinic where Grayson receives his care hosted the author of this precious book The Gift of the Ladybug for a “Ladybug Party” complete with ladybug crafts, snacks, and book reading and signing.
Ideally, I would have loved to bring Grayson to the party, but let’s be real here. Taking him out of school just to have him sit for an hour and listen to his Veggie Tales while tuning everything and everyone out (and probably throwing up a few times too) is not my idea of fun, for him or me.
So I brought this little lady(bug) instead! I was thinking about it today, and it makes me so happy that Charlotte is a part of this wonderful community- a community that THANK GOD she is one step removed from, but one that will most certainly shape and influence her entire life. I love that the people we have met because of horrible circumstances are some of the most honest, loving, funny, and just fun-to-be-around people in my world.
The author of The Gift of the Ladybug is Carole Amber, and she has the sweetest, spunkiest personality- I instantly fell in love with her. Carole’s son TJ passed away five years ago to Leigh’s Syndrome, and she wrote the book to him and for him. Her reality is my future, and the way she is living her life- full of JOY and kindness, is nothing short of inspiring.
Carole said several times that TJ “taught me how to live.” YES. Grayson has taught and is teaching me how to live. Slow down. Sing. Connect with people. Cuddle. Give. Laugh.
And speaking of people who know how to LIVE, this is our friend K. K has Mitochondrial Disease, but that doesn’t stop her from making every day the “Best Day Ever!” She was chosen to go on a special adventure with Carole after the party yesterday, and ohmyword I had to watch the video her mom posted of her reaction to that surprise more than a few times. Priceless. Carole and K were also interviewed on the news this morning, and tell me- does K not have the best explanation of Mito ever?! Love her.
We left with signed copies of the book for both Grayson and Charlotte- Grayson’s copy is definitely going in a special place in his room!
Today was the UMDF Energy for Life Walk. We joined the Mito clinic’s team and enjoyed the relatively warm weather and visiting with friends. Carole was at the walk again signing books, and I was so happy to introduce her to Grayson. While we were waiting to talk to her, I looked down and saw something crawling on Charlotte’s arm- a LADYBUG. Seriously, gives me chills to think about it.
There was a family at the walk with a service dog- a beautiful Golden Retriever. Charlotte was smitten. Anytime she saw that dog she was frantically wave her arms and squeal. We had to go “pet the pretty doggy” about 20 times- ha! Notice what she has in her hands? She held onto those two syringes from the time we left our house until we got back in the car to go home. It’s a strange world we live in, what can I say…
Grayson gives the walk a high five! I’m so glad we got to participate in both events this weekend- good times had by all!
To read more about the book and all things ladybugs, visit http://www.giftoftheladybug.org/. And buy the book! It’s a precious story with a wonderful message.
Hi! I didn't see you at the walk or I would have definitely said hi!! Actually, I didn't speak to a single person that wasn't on our team (except for my former boss who was working there…his daughter has mito))! Too bad, I was hoping to see some moms from the mito moms group! Miss you guys, but definitely feeling out of touch and less like a Houstonian!
What fun events! The book looks adorable, and C is precious in her ladybug wings. I am glad that y'all had a great weekend and fun family time together!
That looks amazing! Charlotte is seriously adorable as a lady bug. 🙂 I went to look at the book on amazon, and I starting crying my eyes out just reading about it. lol. High 5 to Grayson. Love that little boy!