This boy. His MRI is coming up on May 23rd. If the results are good, he moves to yearly MRIs. I never thought we’d reach this point. It seemed so far away. One major brain surgery, vision loss, a stroke, seizures, 16 months of chemotherapy, several leg and arm braces, 4 different hormone replacement medications, botox injections, way too many Physical, Occupational, Speech Therapies, and doctor/specialist appointments to count, and 5 ½ years later, here we are. In fact, four years ago this month, he had his last chemotherapy treatment.
He’s come such a long way and continues to do amazing things! It’s not always easy. At all. Some days are just plain hard, and it’s so easy to become frustrated. In our life group, we’ve been talking about expectations. In life, there’s usually a gap between our expectations and our reality. I never expected our parenting journey to look like it does today. But honestly, I can’t say that I’d change it either. A quote from our study that really stuck out to me is this:
“If you focus on what should have been, you might miss the miracle of God being with you through it.” – Steven Furtick
I wholeheartedly agree. I see God’s fingerprints all over the last 5 ½ years more than I ever saw them in my 30 years prior. God’s doing amazing things through this little boy! Even through the hard. No. ESPECIALLY through the hard. I love his snuggles and his “I love you’s” and I really love that he’s sleeping in his bed all night now. 🙂 I love how he shares God with others, how he prays for his classmates, how he worships at church, and his boldness and love for God.
We left the house around 7 for occupational therapy, then went to have his arm/leg braces adjusted. He’s growing so fast! They made his leg brace wider and put some holes in them so his foot wouldn’t be so sweaty. They also fixed the insert in his other shoe. His elbow brace needed to be wider and the wrist/hand splint was actually a little big. They also put some holes in it so his hand would not get as hot (and hopefully not as smelly, because, whew!) Fixing all of those took some time, and we barely made it back to school in time for his IEP meeting this afternoon. That meeting lasted almost two hours.
Thankfully, the meeting went well and everything is in place for next year as he transitions to a new school. He’ll still be in Kindergarten and is excited about going to a new school, even though he’ll miss the friends he’s made this year and his teachers. It’s always hard to transition to a new place, especially when you like where you’re at. But we’re all excited about what this year will bring. He loves school and has really enjoyed learning his letters, both in print and braille.
We ended the day by going to the park and getting some ice cream. I mean, what better way to end the day?