Going through the high school graduation thing with my second daughter has made me think about milestones. I vest a lot of important in milestones. When my first daughter turned 18 and was eligible to vote, I embarrassed the hell out of her by picking her and her friends up from school, driving them to the polling place and taking a buttload of pictures. I was the parent jumping up and down like a fool when my youngest daughter actually got a (fluke) hit in her last softball game of the season. My middle child had to pretend she didn’t know me at her first competitive choir competition in Middle School, because I was standing on the top row of the bleachers, holding up a sign written on a pizza box the whole time that said  “Sing it Girl!” I love to celebrate milestones. We have prom/Sadie Hawkins/Homecoming dance pictures of my oldest daughters plastered all over every square inch of the hall. Every sport they’ve played, every school performance, every first date…I just can’t get over it. My grandson is on the verge of potty training success, and I’ve got biiig plans in the works.

I’ve also been thinking about milestones that will not get celebrated. I’ve been thinking about them because Andrea came in for a gas voucher today. Calvin had an emergency appointment with his geneticist. I’ve recounted some of my connection with this incredible family here, here, and here.

According to Calvin’s geneticist, he is baffling and amazing because he shouldn’t be alive. Yet, here he is-lurching through the halls of the high school in his leg braces, wringing every possible joy out of his freshman year. Andrea’s family celebrate a milestone with every day Calvin can get up and go to school. And for all of their struggles, which never end and which still visibly wear Andrea down, she knows joy every time he gets lifted into the school bus. And Calvin has experienced some milestones no one ever thought he would.

For instance, he made it to high school. He is almost 17 and a freshman. He has a special education plan, accommodation for his learning disabilities and his physical issues, and a special adult mentor who tutors him. And he has Jeff. Jeff is his peer mentor. Jeff is a Senior-a handsome, popular, high achieving type of guy-who spends his study hall periods hanging out with Calvin. He encourages him, nags him to get his homework done, talks about football with him, and (this is a new thing) answers questions about dating. Andrea about fell out her chair when she heard about that last one.

Jeff played football. Calvin has always wanted to play football, but of course, it was out of the question. But Jeff went to the athletic coordinator with Calvin and supported him when he asked if he could help manage. The athletic coordinator looked Calvin up and down, all six foot 2 inches, 230 lbs of him, and asked if he’d like to be on the Freshman TEAM. Andrea took some convincing, but she agreed. Calvin practiced with the team, tossing the ball around, doing what he could, and on game days, put on the uniform and sat on the bench, looking as menacing an intimidating as possible. It made opposing teams nervous. Calvin got to play a few downs on special teams last season, and you never saw a more proud, happy, ginormous boy riding the bench. That was a milestone no one could have anticipated. Andrea, his sisters, his grandma, and all his extended family attended every Freshman home game. The district waived the entry fee for them.

This would have been enough for him. At the athletic awards banquet, when he was given a special award for his courage and his commitment, he looked like he could die happy, right then and there. Unfortunately, he almost did. Two days later, he wound up in the hospital with horrible pains in his stomach. Apparently, his liver and spleen are extremely enlarged, but it didn’t seem to have any connection to his MD. After two weeks of tests and countless consultations, he was diagnosed with acromegaly to go along with his rare form of MD. This explained his never ending growth spurt.

Slowly, he recovered, but it was a rough journey for them all. Repeated hospitalization made Calvin depressed. The only time he perked up was when Jeff or his teachers came to visit. Jeff suggested that they both grow moody beards. Calvin took him up on it. Andrea is fit to be tied, but Calvin now sports better than average facial shrubbery. Jeff had to shave his off for basketball season, but Calvin kept his in spite of pleading and threats from his mom and grandmother. However, in anticipation of another milestone, he has promised to shave it this weekend.

Calvin is going to prom. Jeff has invited him to attend stag with a group of senior boys who find themselves partnerless this spring. Calvin refers to them as “The Posse.” Andrea was hesitant at first, wondering if her sensitive, socially awkward boy would be alright surrounded by this frenetic ritual of courtship and sexuality. She trusts Jeff, or she wouldn’t even consider it. But really, she is simply stunned that her son, who should be long dead according to the doctors, is going to have this experience. She will have a photo on her wall of her son, wearing a black tux with a periwinkle blue tie and vest, taking part in this timeless rite of passage, this milestone. And she wept with joy when she told me about it.

The teachers, staff, and most of the students at the school have done something the rest of the town and all of his social workers have failed at. They have given Calvin hope, a reason to get out of bed, and a sense of self worth and value as a person. They have given him a life to call his own and encouragement to hold his head high. His family is poor and struggles, he is disabled and dying, he is a case number or a notation in an article in a medical journal, but Calvin has abundant life. And I am more thankful for that than you can imagine.

For all that we could do better by Calvin, Andrea, and his family-and we could be doing a LOT better-I am so very proud of the grace and love that surrounds him where he is right now. He’s off to visit his geneticist and pick up his tux. The black one with the periwinkle blue tie and vest. Extra large.

Originally posted to left rev on Wed Apr 24, 2013 at 12:26 PM PDT.

Also republished by Epilepsy & Seizure Awareness Group and Community Spotlight.

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