Last month, I made a short list of topics to include on the blog for Down Syndrome Awareness Month, one of them being sibling relationships. As I was writing this, I noticed most of the things I write about are still pertinent if I crossed out the “Down Syndrome” and just titled this “Sibling Relationships,” and a lot of them still even true if I dropped the “Sibling” and left it “Relationships.”
I’ll begin with a memory of my grandma. Natalie Goldberg says simply writing the words “what I really want to say” will spark some good free writing that follows. Alongside that advice, I’ve found that “I’ll begin with a memory of my grandma” works too.
My grandma was a preacher’s wife who raised her kids in the 40’s and 50’s and measured life as pretty good if her kitchen was clean, her husband was happy and her four boys were out of trouble. Family was everything to her, and by the time I came to live with her while I was going to college, her legacy was clear. Along with a lot of other amazing things she did, her self-appointed job was to keep the family together–all four brothers, all 13 grandchildren, and all the greats that followed. Those four brothers though–Grandma didn’t mind so much what they did in life as far as accomplishments. Oh, she was proud alright–telling neighbors and friends all about their job promotions and writing gigs and teaching assignments. But nothing made her light up like the news that her sons had done something together.
“Your dad and Dale,” she’d tell me with a smirk, “they went to lunch last week. Dale drove up to the hospital to see him and met all your dad’s work friends.” And then her eyes would sparkle in a way that, as a mother of three kids, I now understand.
One of my favorite stories I love to retell of my grandma–because I can completely relate–is during an afternoon when a few of the uncles were visiting. They sat with my grandpa in the living room, their stories and laughter tuning out the afternoon news while my grandma busied herself in the kitchen making weak coffee and some fruit salad concoction with mayonnaise and sugar.
“Grandma, go be with your boys,” I told her, “I’ll finish this.”
She smiled, shooing me away while she continued her kitchen tasks. “No, no. I like it in here. I can hear them laughing and talking. That’s all I need.”
I always knew I wanted to have three kids—not because I’m a planner, but because I’m a dreamer, and in my dreams there were three kids. Plus, every time I played MASH, it said I’d have three–and live in a mansion and drive a red corvette. Okay, I rigged the game. Point is, I had a lot of ideas about what my family life would look like. Dreams are motivating, inspiring little things but paired with imagination, dreams can get unrealistically specific about things that can’t be controlled. Like people. Throw in a perspective with a wandering eye and it gets even more dangerous. Like disappointment.
I had a lot of visions for what my kids’ relationships would be the moment I started planning a family. They’d be close. They’d tell secrets. They’d make forts. They’d rig up tin can telephones and giggle through sleepovers until we walked in and told them “I’m not kidding, not another word.” They’d fight and make up, switch chores, trade bedrooms, help with homework, hitch rides. They’d share clothes and advice and tearful wedding toasts for each other someday.
Most of these things are still true for my kids, regardless of the fact that Nella has Down syndrome. We have great perspective tools and gratitude challenges that keep us in check. The best way for me to find perspective and feel most grateful is first to call a spade a spade. Acknowledge the hard thing in life for what it is before running off to find balloons. Although my children’s sibling relationships are good and beautiful in their own way, there are some things about Down syndrome that make these relationships different and hard.
Another sibling recently pointed this out after seeing a photo on my Instagram feed of my three kids playing a made-up game–Lainey and Dash tucked under the crib with just their heads peeking out and Nella climbing the crib bars like a monkey. The caption: “Made-up game. Nella’s breaking made-up rules. Lainey’s pissed.” A relatable funny-ha-ha photo for any parent, several commented that this is the life of an older child. Nobody listens, nobody follows the rules, yada, yada. Pat, my friend Annie’s husband, has a sister who is developmentally disabled and grew up with all the blessings and challenges of that beautiful relationship. “You know what Pat said when he saw that picture?” Annie told me. “He turned the phone toward me and said, ‘That right there? That’s hard.'”
I knew immediately what that meant. He gets it. He gets that even though this is a funny common occurrence with siblings, there’s a little more to it with Down syndrome. He gets that sisters not being able to play with you at the same level when you want that more than anything isn’t a really big deal in the grand scheme of sibling love, but it is a little deal. And saying “that’s hard” is okay.
Acknowledging what’s hard right now means that Lainey sometimes says she wishes Nella could talk more so that they could play dolls “like me and Aleena.” Acknowledging what’s beautiful though is seeing that that wish hasn’t changed the way they make each other happy.
Acknowledging what’s hard right now means that we know Dash will eventually move ahead of Nella in communication and abilities. Acknowledging what’s beautiful though is that right now, they play together so compatibly, are the very best of pals, and we know that won’t change a bit with time.
We educate our kids about Down syndrome in a way that is factual and celebratory (never pity), but our kids learn more about each other through living together, recognizing that every one of us has areas that call for our sibling’s help and support. Lainey understands that Down syndrome is something Nella has, but knows that Down syndrome isn’t something Nella is. She understands that it takes Nella longer to learn things and express herself, that she might need extra help and time, but that she wants the same things in life that Lainey wants. We extend this to the big world when we can, talking about all the ways people are different and the ways we can celebrate and support friends around us. Sometimes I wonder if she really gets it, if she even notices the differences. Recently, I watched her interact with a young man with Down syndrome. He asked Lainey a few questions, she answered, smiling, and they shared a high five at the end. Wanting to always keep an open bridge for communication and her questions, I nonchalantly told her later that evening that Jack had Down syndrome. “I know, Mom. I already knew that.” I realized that it wasn’t a big deal to her, did my quick mom scan of her reaction to see if she wanted to talk more about it and concluded that those were my feelings, not hers. Kids are sponges, and she’s been soaking up. I just want to make sure that what I pour into my kids is always good so that when the world wrings them out, they trickle compassion and understanding.
I’ve heard a lot of special needs sibling stories–most of them inspiring and grateful but yes, disheartening ones too. When thinking about the future and what these three will share, I try not to focus on specific dreams but on the big picture. What do I want for them? What do I love most about my relationships with my brother and sister?
I want them to learn from each other, lean on each other and celebrate each other. And maybe most important, I want them to know that they share something that connects them in a way that’s different from anyone they’ll ever meet. All the memories of childhood, all the heartaches and celebrations and stories, all the experiences that helped shape their characters. When things get hard in life, that means something–that connection. It’s a sense of belonging, a feeling of home.
And my job as mom is to spin a web of love so sticky that it covers all three of them with a million pathways to each other and back home.
What’s really important for sibling relationships isn’t affected by Down syndrome. When it comes down to what I really want for my kids’ relationships with each other–well, someday I’d like to sit in a kitchen and hear my kids talking and laughing in the distance–to know that they feel loved, to know that they show up for each other. That’s all I need.
And anyone who’s ever had a brother or sister will tell you the truest test of a good sibling relationship, a test my kids passed long ago. You laugh when someone toots.