I carry him up the steps while he clutches my neck and keeps his little legs wrapped tightly around my middle. He lets go with one hand, pops his thumb in his mouth, and rests his head against my chest as I climb. He could ascend the stairs himself, but he is sleepy. And he is my younger baby–and likely my last baby–and I know I won’t be able to carry him up the steps like this forever. We grab his blanket and his monkey–“Key!” he exclaims enthusiastically–and we make our way to my bedroom. I toss him gently on my bed so that he bounces–just barely–and lands comfortably among the pillows. He smiles at such fun. He clutches his blanket and monkey, rolls onto his belly, tucks his legs under his little body, and points his diapered bottom at the ceiling. He turns his head away from me slyly, returns his thumb to his mouth, closes his eyes, and pretends to snore. He giggles, then looks at me. I laugh too and he does it again.
I roll over and wait. I know what’s coming. He does this every time. I brace myself by holding my breath and closing my eyes. Within seconds, like clockwork, I take an elbow to the kidney, then a knee, as he crawls over me to see if I’m awake. He assesses my level of consciousness to determine how much he might get away with this time. I open one eye just enough to see what he’s doing, but I can already feel him creeping closer to my face. He wants to be sure. When he’s satisfied that I’m asleep, he crawls back over me to the other side of the bed. He doesn’t yet understand that crawling over someone is a good way to wake them up. This makes me smile.
He slides to the edge of the bed and dares to make his escape. I turn just in time to catch him jumping off, and he knows he’s busted. We both laugh. He tries to evade capture, but it’s no use–I snatch him up and smother him with kisses as we get back into bed. He needs to take a nap and I will win this battle. I try again, rolling over so I’m not facing him because I know he won’t go to sleep if he can see my face. He’ll just try to play. No matter–he crawls up to my head this time, grabs it, and attempts to turn it toward him. I am forced to roll over and face him. He places a chubby little hand on either side of my face and turns my head one way, then another. He shoves a finger in my nose, then another in my eye, forcing it open. He turns my head the other way sharply, catching me a little off guard, and he laughs. He does this a couple more times before I start laughing too. Each time he does this, he studies my face, waiting for my reaction. He wants my approval. He wants me to laugh. He is proud to be funny–he loves being the family comedian. He brushes my hair from my eyes.
He snuggles up to me and rests on my chest. I’m rubbing his hair. He, of course, is sucking his thumb. Again. He is so very sweet, and I think about how quickly he will grow, how it won’t be long until snuggling with his mom is a potentially reputation-ruining offense. The moment is fleeting. He snaps up and tries again to make a getaway. I’ve lost this battle. He is not going to sleep. And actually, I’m ok with that.
He makes his way to the door and knocks. He tries to reach the doorknob and knocks again. I follow and open the door for him. He walks to the steps because he wants to join his sister downstairs. He adores her. His sun rises and sets with her. He grips the banister and begins to maneuver down the steps standing up. This is big boy stuff. He refuses to go down the steps on his rear, and he has paid for his determination in the currency of bumps and bruises–he’s tumbled down these steps more than once trying to be so independent. Each time has shaken me to the core. His cries tear me apart. For a moment, I flash back to just a few days ago when he fell last, and I’m reminded that he’s not exactly like other almost-three-year-olds. I think about my niece–about how she is just a few months older than he is, about how she is potty trained and speaks in complete sentences. It stings for a second. I acknowledge the sting, and I move on. I will not live in this place of fear or grief or regret. My heart is much too full for that. Besides, I’m not sorry my child has Down syndrome.
I go back to celebrating him for where and who he is now. His worth isn’t defined by milestones, and he isn’t less valuable because he needs some extra time. I see him learning every single day. I watch his eyes light up with each new discovery. I delight in his facial expressions, and I can see his wheels turning as he processes the bombardment of information all around him. He is learning. He is growing. He is capable. He is smart. He calls downstairs to his sister. I hear her running to him, and in seconds, she is up the stairs. He squeals excitedly and leans into her. She opens her arms and embraces him. They make their way downstairs and I feel peaceful. This life isn’t scary. It isn’t tragic. It’s wonderful and hard and worth it. So worth it. He has a purpose. He is meant to teach the rest of us patience and tolerance and unconditional love. I can feel it in my bones. This boy. This precious boy. He matters.
I worry sometimes that he is growing up in a world where the number of babies born with Down syndrome is decreasing at a troublesome rate. I worry because we accept disability as a reason to abandon one’s post as a parent. I worry because we live in a society that believes the birth of a child with Down syndrome is cause for an apology. And I worry that others won’t see that he’s a human being, worthy of dignity simply by virtue of being human. I look at his blond hair and bright blue eyes. I take in his smile and I can’t imagine how our family ever got along without him. He watched his sister and dad walk out the door today without him and he covered his face and sobbed. He has feelings like we all do. He is not simple. Not at all. And his existence is part of a divine series of life-affirming events. He saved me, this child. He still saves me. While I do not know what the future holds for him, I know this much is true: before he was born, he was wanted; after his diagnosis, he was wanted; and –without a doubt–he is loved. Immensely. And I hope he knows that forever.