Giving thanks for the new normal
Inspiration for the week comes in a quote by the former Varsity basketball coach at Grand Rapids Christian High, Charlette Muller. She has four children and her youngest has Down syndrome. She has resigned from her coaching position to spend more time with her son and to help create a unique athletic facility for individuals with special needs.
Here's what now hangs on my fridge from the article my mother-in-law sent us in the mail:
"You can't lead a life where you take everything for granted. Whatever you have a passion for, use that to dictate how you deal with your child's differences with other children."
I love this. Mark and I have learned this lesson in our ten years together--you can take nothing for granted: not health, not wealth, and certainly not plans. I love that Muller is taking this knowledge and turning into an asset in her family's life. And I hope we do the same. I hope Mark and I use our life's passions to enrich K's life and to help others whose lives touch his understand him better. I can't imagine a greater use of my love for writing than that. I can't imagine a richer use of Mark's passion for sports than that. I can't imagine our kids harvesting a more important lesson from their parents' personal passions than that.
For awhile, I kept hoping that even though K had Down syndrome, he would somehow top the charts and prove Down syndrome wrong. I wanted him to be the kid that showed the world that Down syndrome is just a label, that labels are hollow, and that he could be just like every other typical kid. But you know what? Even though he keeps topping those charts, he's never going to be that kid, because that kid doesn't exist. He has what he has and he will live his lifetime with it, and we will live it with him. And that has been very hard to accept.
But I am realizing it's time to move on. It's time to pick up a new dream and carry it. Because that other dream is tired. Never meant to be anything other than it was.
Oddly, part of what triggered the shift for me is that as K gets older, the typical physical features of Down syndrome grow more prominent. When he was born, it was possible to look at him and not be sure if anything was different. Not so anymore. I surprise myself by being relieved. I don't have to manage that unrealistic dream anymore. Our family can now grow into its new normal.
The triple takes have already happened. Those are the looks from perfect strangers who see our family out and about--it's hard to miss us--look for tired, wild eyed mommy and three loud children five and under. First glance takes in our size, second glance takes in how young the kids are, and third glance takes in K. Sometimes many more glances follow. The looks don't make me feel uncomfortable like they used to. In fact, I welcome them. I know if I were in their shoes, I'd be looking too, looking to see what a family like ours is like. Is it hard? Yes. Is it good? Yes. Is that boy as loved as the others? Yes. What are his siblings like with him? Precious. Is Mom happy? Yes. Tired, but happy with her little brood.
So the new normal, the new dream goes something like this: We thrive as we are. And we use our passions to deal with the differences. For now, that means writing here. But I hope someday the audience grows. I hope I can add my words to the growing collection of voices that speak up about disability in order to pave understanding and acceptance.
You may have seen this in the news recently: There is a new blood test that can detect Down syndrome as early as ten weeks into pregnancy. Ten weeks! I do not know what this will mean for Kaleb. I choose not to fear that now. But I will use now to speak up. To bear witness to his great potential, to his value as an image bearer of God, to his unique and beautiful self. He is precious. He is loved. He is welcome.
And this Thanksgiving, I am thankful he is part of our lives.
Here's what now hangs on my fridge from the article my mother-in-law sent us in the mail:
"You can't lead a life where you take everything for granted. Whatever you have a passion for, use that to dictate how you deal with your child's differences with other children."
I love this. Mark and I have learned this lesson in our ten years together--you can take nothing for granted: not health, not wealth, and certainly not plans. I love that Muller is taking this knowledge and turning into an asset in her family's life. And I hope we do the same. I hope Mark and I use our life's passions to enrich K's life and to help others whose lives touch his understand him better. I can't imagine a greater use of my love for writing than that. I can't imagine a richer use of Mark's passion for sports than that. I can't imagine our kids harvesting a more important lesson from their parents' personal passions than that.
For awhile, I kept hoping that even though K had Down syndrome, he would somehow top the charts and prove Down syndrome wrong. I wanted him to be the kid that showed the world that Down syndrome is just a label, that labels are hollow, and that he could be just like every other typical kid. But you know what? Even though he keeps topping those charts, he's never going to be that kid, because that kid doesn't exist. He has what he has and he will live his lifetime with it, and we will live it with him. And that has been very hard to accept.
But I am realizing it's time to move on. It's time to pick up a new dream and carry it. Because that other dream is tired. Never meant to be anything other than it was.
Oddly, part of what triggered the shift for me is that as K gets older, the typical physical features of Down syndrome grow more prominent. When he was born, it was possible to look at him and not be sure if anything was different. Not so anymore. I surprise myself by being relieved. I don't have to manage that unrealistic dream anymore. Our family can now grow into its new normal.
The triple takes have already happened. Those are the looks from perfect strangers who see our family out and about--it's hard to miss us--look for tired, wild eyed mommy and three loud children five and under. First glance takes in our size, second glance takes in how young the kids are, and third glance takes in K. Sometimes many more glances follow. The looks don't make me feel uncomfortable like they used to. In fact, I welcome them. I know if I were in their shoes, I'd be looking too, looking to see what a family like ours is like. Is it hard? Yes. Is it good? Yes. Is that boy as loved as the others? Yes. What are his siblings like with him? Precious. Is Mom happy? Yes. Tired, but happy with her little brood.
So the new normal, the new dream goes something like this: We thrive as we are. And we use our passions to deal with the differences. For now, that means writing here. But I hope someday the audience grows. I hope I can add my words to the growing collection of voices that speak up about disability in order to pave understanding and acceptance.
You may have seen this in the news recently: There is a new blood test that can detect Down syndrome as early as ten weeks into pregnancy. Ten weeks! I do not know what this will mean for Kaleb. I choose not to fear that now. But I will use now to speak up. To bear witness to his great potential, to his value as an image bearer of God, to his unique and beautiful self. He is precious. He is loved. He is welcome.