Not lost
At the pool on Thursday, I sat beside a grandmother and we watched our littles at work with their therapists. Kick, squeeze, sit, stand, balance, throw. They did it all. And she began to talk--about the cord wrapped round his neck four times, about the way it caused a brain bleed, about how if they had just done a C-section, just done that, it would have made a difference, about having CP. And about how she knew something was wrong--a wee hand that never uncurled. "Look at it now," she said. "Look how he uses it." And it was a sight to see. A two year old boy every day working until those fingers could move again, that hand could grasp. "He's going to be just fine," she said. Just fine.
"Ours, too," I told her. "There are the medical facts before you, and then there is a child. You deal with the diagnosis, but you get to love the child."
I love moments where our world makes sense. The world of whatever you want to name it--Down syndrome, special needs, disability. I love it when the stranger next to me looks me in the eye and says it's going to be just fine. And it is.
She told me about her friend who has a daughter with Down syndrome. That daughter is in her 20s now, and she works at a local store and has a full life. This grandmother, she told me how her friend fought so hard so that her girl could have this life she leads now as a young adult. Doctors told that mama what her daughter would never do, and schools told that mama what her daughter would never learn, and that mama took her girl's hand, head high, and walked right past all of them. And here they are, they are just fine.
I looked at that grandma and I listened to another story of someone who knows a friend who has a daughter whose kid has Down syndrome, and it dawned on me. These are the women who have tended the soil my son now grows in. And I said to her, "Would you thank her for me? Would you thank her for working so hard, because her work is making all of this possible for our kids. All those moms (and dads) who for years fought against the current of a society that named their children incomplete and unworthy and unteachable. Those moms, one-by-one, they changed the world for moms like me. I bet they don't even know it. But they should."
She nodded. Smiled. We said our see you next weeks. And I walked out a changed mama.
Then I met another mom in the hall at school while picking E up. She stopped me to ask how K was, how his finger was, and somehow we started talking about her son. She told me about what it was like when she was handed the piece of paper that gave her fears a name, how she stood in these same halls and sobbed, how she gave herself a day to mourn, and how she picked up the pieces that next day and never looked back. She told me there are still hard days, but the gift in all of it, she said, the gift is that whatever he accomplishes, "I can't take full credit. He works so hard, and my reward for every accomplishment, every milestone, is that I get to take a step back, I get to be less involved, I get to give him credit for what he's done. I never would have been that kind of mom," she told me. "Never. I would have taken the credit for his success. And I can't do that."
Is there always a silver lining? I begin to think all silver linings are bittersweet.
E told me tonight she wishes K wasn't her brother.
"Why?" I asked her.
"Because he'll always be littler than me," was her mysterious reply. I knew what she meant. We've talked about what makes K different.
But I said to her, "You're right. He will. Because he's your LITTLE brother." And smiled.
She smiled back. "Oh man!" she laughed. "I wish I didn't have a little brother!"
"It's OK," I told her. She'll have her days, too. And I was nothing but proud. Proud of her honesty in that moment. I hope she never loses that quality. Because she loves that brother something fierce. The silver lining: watching two sisters love a little brother.
And even though winter wears me thin, even though short, cold days give edge to my spirit and everyone in our house feels it, there are moments in the long and lingering hours that are nothing but gift. And I'm still in awe of his extravagant love spent on the likes of us.
Three gifts: A stranger, a familiar face, and my girl. And those are only the ones I took the time to notice. How many others have gone uncounted?
Only a mile from us, this afternoon, around the time I was negotiating an argument between two sisters, a fatal car accident took someone's life and sent another to the ER. We listened to the sound of news helicopters hovering all afternoon and into the evening and from my kitchen window, cooking dinner, I saw it there, suspended in air over devastation. Here we all were, tucked in neat within four walls, safe. That could have been us. We traveled that way twice today, E traveled that way home from school less than hour before it happened. In an instant. And the moment is not lost on me this time.
At bedtime we pray, "Lord, thank you that you love us so much. Thank you that you protect us. Thank you that you are always there. In every moment."
I hear two amens and a bye. And the moment is not lost.
"Ours, too," I told her. "There are the medical facts before you, and then there is a child. You deal with the diagnosis, but you get to love the child."
I love moments where our world makes sense. The world of whatever you want to name it--Down syndrome, special needs, disability. I love it when the stranger next to me looks me in the eye and says it's going to be just fine. And it is.
She told me about her friend who has a daughter with Down syndrome. That daughter is in her 20s now, and she works at a local store and has a full life. This grandmother, she told me how her friend fought so hard so that her girl could have this life she leads now as a young adult. Doctors told that mama what her daughter would never do, and schools told that mama what her daughter would never learn, and that mama took her girl's hand, head high, and walked right past all of them. And here they are, they are just fine.
I looked at that grandma and I listened to another story of someone who knows a friend who has a daughter whose kid has Down syndrome, and it dawned on me. These are the women who have tended the soil my son now grows in. And I said to her, "Would you thank her for me? Would you thank her for working so hard, because her work is making all of this possible for our kids. All those moms (and dads) who for years fought against the current of a society that named their children incomplete and unworthy and unteachable. Those moms, one-by-one, they changed the world for moms like me. I bet they don't even know it. But they should."
She nodded. Smiled. We said our see you next weeks. And I walked out a changed mama.
Then I met another mom in the hall at school while picking E up. She stopped me to ask how K was, how his finger was, and somehow we started talking about her son. She told me about what it was like when she was handed the piece of paper that gave her fears a name, how she stood in these same halls and sobbed, how she gave herself a day to mourn, and how she picked up the pieces that next day and never looked back. She told me there are still hard days, but the gift in all of it, she said, the gift is that whatever he accomplishes, "I can't take full credit. He works so hard, and my reward for every accomplishment, every milestone, is that I get to take a step back, I get to be less involved, I get to give him credit for what he's done. I never would have been that kind of mom," she told me. "Never. I would have taken the credit for his success. And I can't do that."
Is there always a silver lining? I begin to think all silver linings are bittersweet.
E told me tonight she wishes K wasn't her brother.
"Why?" I asked her.
"Because he'll always be littler than me," was her mysterious reply. I knew what she meant. We've talked about what makes K different.
But I said to her, "You're right. He will. Because he's your LITTLE brother." And smiled.
She smiled back. "Oh man!" she laughed. "I wish I didn't have a little brother!"
"It's OK," I told her. She'll have her days, too. And I was nothing but proud. Proud of her honesty in that moment. I hope she never loses that quality. Because she loves that brother something fierce. The silver lining: watching two sisters love a little brother.
And even though winter wears me thin, even though short, cold days give edge to my spirit and everyone in our house feels it, there are moments in the long and lingering hours that are nothing but gift. And I'm still in awe of his extravagant love spent on the likes of us.
Three gifts: A stranger, a familiar face, and my girl. And those are only the ones I took the time to notice. How many others have gone uncounted?
Only a mile from us, this afternoon, around the time I was negotiating an argument between two sisters, a fatal car accident took someone's life and sent another to the ER. We listened to the sound of news helicopters hovering all afternoon and into the evening and from my kitchen window, cooking dinner, I saw it there, suspended in air over devastation. Here we all were, tucked in neat within four walls, safe. That could have been us. We traveled that way twice today, E traveled that way home from school less than hour before it happened. In an instant. And the moment is not lost on me this time.
At bedtime we pray, "Lord, thank you that you love us so much. Thank you that you protect us. Thank you that you are always there. In every moment."
I hear two amens and a bye. And the moment is not lost.
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