The moment a baby takes its first steps is such a beautiful thing: the stumble, the arms reaching out, mom and dad smiling across the room, the “you can do it” and “just one more step.”
I don’t remember my first steps, but I remember Joseph’s.
My brother Joseph took his first steps like any other child. It was probably as normal as you can imagine. It included all the stumbling and hope and excitement that first steps normally do.
Little did I know Joseph would only walk for 12 more years.
When he was five, our world turned upside down. He’d been walking for four and a half.
When he was six, I Googled the words “Duchenne Muscular Dystrophy” and finally understood the gravity of what was happening. I felt hopeless.
When he was seven, the limping and slowness were evident when he couldn’t keep up with his friends.
Eight, nine and ten: He struggled more and more.
11: He was using his scooter to keep up.
12: He couldn’t stand for more than one minute. He held on to the bathroom counter when he brushed his teeth.
13: He lost his ability to walk.
Today: I’m sitting on a dining room chair pretending to work on an assignment. I’m home for the weekend, visiting my family. While it might seem like I’m typing the Spanish paper due Monday, in reality I’m gazing out at my brother, peering through the foggy glass window.
I can see the visible difference between him and his seventh-grade friends. While they run, jump and shoot baskets, he sits in his scooter looking on longingly. The other boys have grown taller, stronger and faster. They’ve reached that point where athletic ability really starts to show. This time in boys’ lives sticks with me so clearly because when my brother Sam was this age, he was the fastest kid I knew. Joseph, however, has been unable to move like his friends for a while now. His athletic ability is reduced to essentially throwing a ball from a sitting position while his friends play the Joe-Joe version of whatever the sport of the day is.
This stark difference between my brother and his peers breaks my heart.
His friends are so good to him, though: They accommodate him when they play baseball in the sweltering heat of our cul-de-sac or come get my mom when he has to come inside to the bathroom. But it doesn’t change one simple fact: Joseph can’t walk.
Joseph can’t walk. Those words really hit me whenever I write them or say them out loud. The unfairness of that statement is not even something I can begin to unpack.
Although Joseph can’t walk, and it pains me to accept that, he can hug me. I hug him every chance I get, because I know one day, those beautiful, perfect arms won’t be able to wrap tightly around me anymore. Hugs are luckily one of Joseph’s favorite things, so I get them whenever I ask.
People always ask me or my family what it’s like to live with this, but it’s hard to explain to people who haven’t experienced this situation the pain of watching the person you grew up with struggle so much. The bond between siblings is unexplainable and so is the relationship I’ve been lucky enough to have with my brothers. So after growing up building forts and sandcastles, pestering our parents and having each other’s backs, Joseph’s sickness feels so heavy.
I couldn’t tell you how he approaches it with such strength, but I know my spirit feels meek in comparison to the resilience he displays as he smiles up at me when I carry him to his wheelchair, help him off the couch and lift him when he lies down and can’t get back up.
I feel defeated when I think of his heart giving out, his lungs ceasing to breathe. I feel so angry when I think of the trivial complaints I make every day that can’t even begin to compare to the prognosis he’s been given.
I think about the cards my family has been dealt every day. It’s funny to look back at my 20 years of life now because I could tell you exactly where the split is between my life before Duchenne and my life after. A lot of things fell apart and changed between these two very distinct time periods. I can remember as a child planting vegetables in the backyard with my dad, or singing along to Bob Seger with my brother Sam. These memories are like blurs of color and youth. They are joyful, but distant.
After the diagnosis, my memories are different—clearer, sharper. These new memories include more pain. They include tears and more self-doubt. They also include happier times; just in this half of my life, there’s also something else hovering over the Christmas mornings and the movie nights. It’s like this dark cloud kind of just sitting there, waiting for the right moment, when you’ve forgotten about it, to tell you that things will never be completely OK again.
But, in spite of all of this, in spite of the pain, the tears and the fear of the future, I know Joseph is a gift to me. I know what a privilege and responsibility I have because I was given not one, but two younger brothers to care for and love. I know how much Joseph loves me when we’re FaceTiming and he asks “Katie, when are you coming home?” I know how hard my parents work to create a life for us that is full of experiences and joy. And finally, I know that no matter how much I think the statement “everything happens for a reason” is absolute bullshit, Joseph — not his disease — is here for a purpose.
Joseph is here because he knows how to make my mom, my cousins and I laugh until we cry with his selfie-stick poses at Christmas. Joseph is here because he is such a good friend to the neighbors who knock on the door at godforsaken hours of the morning asking if he’s ready to play. Joseph is here because he shamelessly orders a full slab of ribs at any restaurant they’re available when we all know he won’t finish it. Joseph is here because he’s the funniest 13-year-old you’ll ever meet and his rendition of “The Fresh Prince of Bel-Air” theme song is strikingly accurate.
Joseph is here because he defines who he is as a person, even though Duchenne tries so hard to. Joseph is here because although he can’t walk or run, his spirit makes him seem like he can fly. And Joseph is here because he is a representation of strength that I will never comprehend.
Joseph is here because he has taught me how to be brave, and for that, I will always be grateful.