Giving it all in the moment we are in
We are about a month away from Eli’s one year post op, and although I don’t know if he is where we thought he would be, I do know that he is better than where he would have been without. For the last year, he has given it his all to get where he is today!! We couldn’t make him do it, he had to decide, and thankfully he never wavered on his desire to push himself to where he is today!
Yesterday Mr. Kinch sent me a video along with a picture of some things Eli was doing in school to keep his body in motion. He not only worked in the gym, but he had his community field trip where he got a ton of walking in! When I got him from school, we went straight to CHOP and he continued working hard like he normally does.
His Therapists recently set some more goals, as we are winding down to once a week PT, so yesterday she wanted to see if he could meet one of those. Standing for three minutes was the one we were going to test, so Miss Natalie set up the mirror to do a little tic tac toe and hangman. After six games and thankfully one win at hangman, we checked the timer to see how long he had been standing. Six minutes and thirteen seconds. He didn’t wobble once during that time and although he finds his own ways to balance, he was standing tall, and better than I had hoped. It’s really incredible because he is almost just using one leg to accomplish this.
We then went to the steps with his crutch and Rocky playing in the background. He did 83 steps with his crutch and no holding on, then we practiced one foot at a time with no crutch and holding on, which you can see he crushed! He was tired from a long day at school, he was grumpy about something that bothered him at school, BUT, he came, he saw and he conquered.
He continues to teach me, and I would imagine others, to SHOW UP!!! Show up, and put in the work, no matter what that might look like. He does not live in the past or the future, but he is living in the moment, giving it his all. What else could we ever hope for?
We waste so much time living in the past, or focused on the future, but this moment is all we have and thankfully he is making the most of every one that comes his way! #livelikeeli



~ by Rebecca on March 11, 2023.
Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, day by day, don’t stop, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, enjoy the moment, Enjoythemoment, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, life, live, live in the moment, live like Eli, Love, metachromatic leukodystrophy, MLD, never give up, Rocky, special needs, strength, warriors
Thanks for such a n uplifting update
Such a kid, we should all have a little of his gumption. Prayers always
Thank you so much!!