Ah, the 21st birthday. It’s a rite of passage, a ‘Marker Moment’ birthday. Or Maker’s Mark birthday, if you’re a whiskey fan.
At 10, you’re double digits, at 13 a teenager (and a bar/bat mitzvah Mazel Tov!), at 16 you can drive, at 18 you can vote, and at 21 have your first drink. As parents, we watch our children celebrate these phases and help them navigate the challenges along the way.
Until you lose a child.
This February 12th would have been my youngest son, Sean’s, 21st birthday. My husband, myself and our older two children, Kyra and Connor, will come together this year. Last year, the first year of having his birthday without Sean, we didn’t know any better and were in different cities. We each remembered, celebrated and mourned Sean in our own way, and found ourselves missing not only Sean, but each other.
This year, we’ll honor Sean by doing what he likely would have done if he was still with us. We’ll go for a hike in Valley Green, maybe bowl a few games, and then head to an Irish pub. Sean had complex medical challenges, was on multiple medications and unable to eat or drink by mouth. But I don’t think that would have stopped him from having a taste of Guinness and a wee bit o’ Jameson’s on his lips.
Sean only lived until 19, but he lived large and over the years spent his fair share of time in Irish Pubs. It wasn’t about the drinking – it was the music, the community and coming together with friends and family that made it special. Sean used a wheelchair, but that rarely was a barrier from finding his way into the pub. We all grew stronger and would carry him up stairs if needed. Some of our favorite memories of Sean’s last year are in places where the music was loud and the craft beer flowing. Visiting Kyra in Memphis, enjoying a sunny Sunday afternoon in a Beer Garden. Visiting Connor in Boston, listening to an Irish fiddler at the Oldest Irish Pub in the city. Slowing down to simply be in conversation and be present for one another.
But 21 is so much more. For young adults with special needs, the 21st birthday means Transition. Yes, Transition with a Capital T, as it’s something families start preparing for when their child turns 14. Time for them to leave their school district program and find their place in an adult living environment. For someone like Sean, with significant and complex needs, it meant either he would live at home and we’d have supportive care brought in, create a small independent living community, or find placement at an established group living community. Each of these options felt challenging for varying reasons.
What we always wanted for Sean was for him to develop to his God-given potential and live as independently as possible. It’s why we chose HMS School, where they specialize in helping children with cerebral palsy and other complex issues gain the communication, mobility and life skills to prepare them for life. This year, we would have seen Sean graduate from HMS and Colonial School District and move onto this next phase of his life. We were in the process of interviewing and being interviewed for group homes. This brought so much anxiety – how would we know we made the right choice? What if we pick a home near us and then Kyra and Connor move far away? Is the waiting list really up to 5 years? How do we help Sean launch as an Adult, when so much of our lives has been wrapped up in his care?
As a parent, we’re there to support, to love, to nourish, to help our children find their way. We do our best and then we let them live their lives. This is the gift, and the challenge, of parenting.
I know I’m lucky to have had Sean for 19 years. I just wish I could have him at my side rather than a photo of him on the 12th when we raise a pint and say “Happy birthday, Sean. Slainte.”