Newsworthy: Everyday acts of kindness. (4)
A new blog series highlighting the art of caregiving.
Photo narrative by: Meredith Wright
My brother, Billy, has a beautiful smile. He also happens to have Down syndrome, epilepsy, hypothyroidism, and mild autism spectrum symptoms. It’s refreshing to have an outlet where I can share all the best things about Billy, as so often on forms and in meetings, caregivers are forced to focus on all the things that their loved one can’t do.Billy loves listening to music in the car with the windows down. He also loves to swim with our Dad, and he’ll give you his cheek if you ask for a kiss. When Billy hugs you, it often feels like he’s going to knock you over from how tightly he pulls you close. Billy loves eating at our Grandma’s house. He likes eating anywhere, really.
Since my Mom’s passing in 2015, my Dad and I have been Billy’s co-guardians. Stepping into this role has changed my relationship with Billy significantly. I have always loved him and have been inspired to work in science/healthcare because of his influence on my life. But now that love is fiercer, as an adult sibling relationship involves not only love but also advocacy and caregiving.A few months after my Mom passed away, my Dad and I made the difficult decision to move Billy into a group home. We were fortunate to find a group home near our hometown run by the Arc of Essex County, which also ran his preschool and current day program. I often wish I could clone myself, and have one Meredith go to graduate school while the other Meredith cares for Billy. But since this isn’t possible, I’ve learned to work with the group home managers and staff to make sure Billy’s needs are met. Between Billy’s day program, group home, family, and friends, we work as a team to try to create the best possible “Plan B” in my Mom’s absence.
Billy has always liked sticking to a routine, and so the new routine we have is that roughly every two weeks my fiancé and I travel from NYC to NJ and pick up Billy from his group home. We drive to our Grandma’s house, playing music for Billy on the way.When we get there, Grandma always has something delicious waiting for us to eat.
We then have time to hang out, or take care of random little things like cutting Billy’s nails, trying on new clothes for him, or running some errands together. Then we usually meet our Dad later on for dinner, before heading back to Billy’s group home in time for his evening dose of seizure medications. When we’re together, I try to give Billy as many hugs and kisses as possible, so that he’ll know how loved he is even when I’m not there in person. Since Billy’s verbal skills are not at a level where he can have a conversation, it’s hard to know how much he understands. But when we’re together, he always leans in for huge hugs and kisses. He communicates his love for us this way, and I truly believe he understands how much we love him too.
If you are a sibling of someone with special needs in NYC, visit sibsNY for resources and support.
