Damn, there's still a lot I don't know. Always will be. Welcome to parenthood. Welcome to Down Syndrome world. Just please don't say Welcome to Holland; I'm still going to Italy and I'm taking Grant with me. I never want to read that Holland piece again.
I don't know what this new life looks like.
I don't know when Grant will speak or walk or read or potty train.
I don't know how this is going to affect Will.
I don't know what Grant's life will look like as an adult.
I don't know how we are going to pay for it all.
I don't know if Grant will be accepted by his peers, by my peers.
I don't know how this is going to affect our marriage.
I don't know how this is going to change me.
This maternity leave, yeah, it's pretty much sucked. Those dreams I had of trying out lots of new recipes and reading the entire Harry Potter series and watching A Baby Story on repeat while cuddling my little guy were replaced with doctor appointments, therapy sessions, introductions to other mamas with children with DS, and a mountain of information to understand about this extra chromosome. Throw in lots of freezing temps, the grief process, and taxes, and man, you've got a rockin' maternity leave party on your hands over here.
BUT.
He's smiling, friends. Grant is smiling.
And in the midst of all this unknowing, I find myself falling in love with my son.
Snow, come on down. We've loving each other in this cozy little house of ours. We get our PJ's on and curl up under the covers and I hold little Grant in my arms and I do the one thing I know to do.
I read to him.
Together, my son and I have read collections of essays, memoirs, bestsellers, books on faith, short story collections, and magazines. He stares up at my lips as the words of other worlds roll off my tongue, and magically we are both transported away from cardiologists and therapists and into spaces of inspiration and imagination. In this bleak midwinter, I fell back in love with reading. And as I read, I fall more and more in love with my son.
I am learning that I have a threshold. I fill up and up and up with information about DS because I want to be that mother who thoughtfully nurtures her child and gives him everything he needs to succeed, but then I feel that tipping point nearing, that place when I want to yell "Down Syndrome, why do you have to make things so much harder??" and I retreat into the comfort of another person's story.
And when I do, I bring Grant with me. He is my partner every day when I read. He holds on to my finger and listens intently and smiles. And every once in awhile, I'll stop and look down at his sweet face and think, "You and me. We're navigating this damn down syndrome world together. We'll figure it out together."
That impulse I had at his birth to run away? Yeah, it's gone. Now I don't want to go anywhere without him. I am head over heels for this little guy and I am ready to do what it takes to help him navigate our world. We'll start by reading together every day.
This maternity leave, I totally went through the whole grief process. For me, that was my path: denial and isolation, anger, bargaining, depression, and acceptance. I have met mothers of children with DS who didn't go through this at all, and I've talked with moms who took years to find their way through these stages. And as much as it hurt sometimes, I wanted to be IN these places fully, really know these feelings in the hopes that I could confront them head on and then move on. Frederick Buechner once wrote about the "stewardship of pain." He said that moving from adolescence to adulthood involves being a good steward of pain. This pain, if we fully experience it rather than avoid it, helps us become a more full human being. I get that now.
I am becoming okay with the fact that I don't know what the future holds. I trust that there is a bigger picture at work here and that what I need to focus on is loving the heck out of the wonderful people in my life every day. I am also starting to hope again. I believe that what's ahead of us is going to be beautiful, and it might be different beautiful and sometimes painful beautiful, but it'll be a raw beauty that maybe I wouldn't have known otherwise. And I haven't been dreaming much about the future, but when I do, I dream about doing something professionally where Grant would be able to join me, like professional photography or a smoothie cafe or a bookstore. Wouldn't that be beautiful?
I go back to work on Monday. Several kind people have asked what they can do to help. I keep saying "nothing! You have done so much already!" and that's true. But I'd like to amend my answer.
LOVE MY SON.
Love both of my children, actually. Love ALL children. Dammit, LOVE EVERYONE. That's what you can do. When you look at my son, don't feel sorry for him or for me. We're good. I may have been a hot mess three months ago, but we're good now. Just love HIM. Help make this world a place where Grant feels accepted for who he is, where people give him opportunities to shine, where difference is celebrated not shunned, where our schools are equipped to really help our youth learn and grow, where he won't be made fun of, where bullying doesn't happen, where we are kind to each other because damn, life is hard enough on us for us to be hard to one another (like, why??).
Life can be cold and dark and hard. Let's climb the hills and enjoy the views together. And SMILE.
1 comment:
You are an inspiration, Sara!
Post a Comment