Call me crazy, but one of the first thoughts that crossed my mind when my daughter was born with Down syndrome was, “Will she live with us forever?”
When my oldest was born, a typical baby girl, those thoughts would have felt so…outrageous! I mean, who thinks about their child moving out the day they’re born? But with Nichole it was different, Down syndrome rocked me and I was immediately wondering if she would ever live independently, if she would ever get married, if she would ever have a job.
I had expectations for my kids and I didn’t even realize I had them! I also thought I knew all about unconditional love simply because I was a mother, but dealing with my daughter’s diagnosis showed me I had much to learn about what unconditional really meant, and about how to love well, with no strings attached.
And so I grieved my daughter’s diagnosis. I cried. I shook my fist at God. I broke. God built me back up. I chose love. I changed. I am now smitten and she has me wrapped around her crooked little finger, no doubt about it!
So what if she lives with us forever?
At first I was scared about what life would be like having a child with Down syndrome, but here is the thing, I really, really enjoy my daughter. We have some pretty sweet moments together.
On Saturday mornings, she wakes me up. She gets in bed with me, and she sings happy birthday. I guess she thinks a nice day at home should be like a birthday celebration. We sit up in bed and we talk, then she asks me if I want some coffee. She usually gets some coffee too (I drink decaf with creamer, she loves it). So we drink our coffee together, she takes a sip, I take a sip. We smile at each other over the rim of our mugs. I hope she still wants to do this with me when she’s 15, and 21, and 30 and forever.
When daddy comes home, a celebrity has arrived home. She runs to him, she gives him hugs, she cheers. And I know what he’s thinking, I hope she still looks forward to me coming home when she’s 15, and 21, and 30 and forever.
There is a quick run to the grocery store, the other two girls are too busy to stop their games to come with me (or my husband). But not Nichole, she is ready to come join us and keep us company, our little buddy. I hope she still has time for us when she’s 15, and 21, and 30 and forever.
A friend has an adult daughter with Down syndrome, every week her husband and daughter have a movie night. I know what my husband was thinking when we heard this, I hope that is me in the future, when Nichole is 15, and 21, and 30, and forever.
Maybe having a child that lived independently was a dream I had for my daughter, but it is not a dream I have for her anymore. And make no mistakes, I am taking about my dreams, because it might be her dream to move out, and be on her own, and I will have to accept that, get a good cry, and let go.
What I once feared so much is something I now would welcome with open arms. I enjoy my daughter, and the thought of having her around makes me smile.
“Nichole can almost print out and writer her name.” I say to my husband.
“That is pretty cool.” He says.
“I think we should make her sign a contract.” I say.
“For what?” He says.
“That she promises to live with us forever.”
Don’t worry, we won’t do that!
I have come a long way (besides, I am from Mexico, and this is culturally acceptable, most adults live home until they marry).
Of course we will not make her sign a contract, and maybe this is the hard part, the letting go. Because everything in me wants to keep her close, but that wouldn’t be putting her first. She will get to make her own decisions, live her own life, and she might choose to live away from home.
But what if she lives with us forever? You know what, I will be totally okay with that!