As the mother of a 16 year old, my mom was understandably concerned when I fell hard in love and forbade me from dating the man who is now my husband. We were too young. Not enough money. Life was hard and complicated. I would end up pregnant and alone. She let me talk to him on the phone, 10 minutes a day. And write letters. Fast forward 8 years and my mom’s tune had changed. All of the parents, really. We up and got married (eloped….but that’s another story), had great jobs and everything was fantastic. By their count, though, we were completely falling down in the grandkid department. It got to the point where every conversation ended with, “So….when are you going to let me fill up my wallet with photos of grandbabies? All my friends are grandparenting…why can’t we?”
Turns out, I’m good at lots of things, but baby making…not so much. We had a few miscarriages and when I finally got pregnant with Eli, it was seven months of tense waiting around. Wondering if we were going to end up with a baby after all. We almost didn’t. That kid has always been on his own schedule and when it came to picking birthdays, he decided April Fool’s day was the way to go. Never mind that it was two months earlier than his projected due date. We nearly lost him in the delivery, had to wait a month to bring him home from the hospital and that was just the beginning. Achondroplastic dwarfism has huge variability. No two kids are the same and each has their own constellation of complications.
We got lucky. Eli’s complications put him in a very small subset of Achons. Kids who were unexpectedly dying in the middle of routine tonsillectomies. It was only within the year prior to his being born that the docs figured out they needed to trach kids like Eli. Wait for them to get big enough in the upper airway to withstand surgery. So they trached him right before he turned two. It came out a few months before kindergarten. His next big hurdle was even trickier. This same group of kids, who were only now surviving, had a tendency to go to sleep at night and just never wake up. No one knew why. In the spring and summer before fourth grade, Eli was obviously in trouble. Couldn’t regulate his breathing at night. Started having a hard time controlling his arms and legs. He was one month late starting fourth grade. The doctors cut half of his first vertebrae off and took what I imagine was a Dremel tool to the opening at the base of his skull, making it wider. Wide enough that pressure no longer built up and crushed his brain stem down into the base of his skull. He is the first one to be diagnosed with that kind of positional hydrocephalus issue and when they looked at all the other kids in the same subset as Eli, they found the same problems. Kids stopped dying.
When Eli finally got stable…I’m gonna say it was around 6th grade, all his doctors, who had been our main cheerleaders throughout this journey, individually came to us and said, “We never thought he’d be one of the kids to make it. Always hoped and prayed, but in all honesty him surviving was a miracle.”
And here we are. Kid’s grown to adulthood and I don’t know where the time went or quite how it happened. We’re just really grateful we get to be his parents. He turned out so…freaking level headed and awesome. And again, with us as parents, how the heck did that happen? Happy Birthday, Kiddo. We love you so much.
18. Still trying to wrap my head around 18.
Seems like only yesterday he was making jokes about how you check someone’s heart rate.
Climbing up on all the counters.
Steve teaching Eli how to drive Uncle Mikey’s tractor.
Every time Steve wore this sweater, Eli wanted to be carried like this.
Since it took him longer to sit up and crawl, Eli explored the world upside down. He’d inchworm all over the place….on his back.
Smiling at Daddy on our first boat (39′ Cross Trimaran).
Making faces at Grandma Nina’s house.
Checking out Paul Irving’s cornet. We love you Zongo All-Stars!
Sitting in our friend Donald’s racecar.
A fish just jumped in the pond. He’s gonna catch it.
Doofing around in speech class.
Bathtime in the sink.
Every year, around his birthday, San Luis Obispo put on I Madonnari, a street painting festival. For Eli’s first birthday party, our friend Jessica Irving decided to make an Eli Madonnari festival on the patio :-) It was awesome.
All the kids had so much fun. Grownups, too.
