They caught my eye as I was putting my bananas in a bag. Walking hand in hand they meandered through the produce section. One, an older woman with graying hair and gentle wrinkles. The other, a short young woman with almond shaped eyes that absorbed everything around her. They walked slowly, not in any hurry. I was wearing Ivy on my chest, and I saw the moment when the older woman clearly noticed her almond shaped eyes. Her eyes softened and she looked at me with the sweetest smile.
“Aren’t we the luckiest?” she asked as her daughter oohed and ahhed over Ivy.
And it took me back. To the moment I received Ivy’s diagnosis. To my mind spinning out over all of my fears and worries. There were the worries about the immediate future… her heart, her health, possible NICU stay, could I really do this – be a mom to a child with a disability? And then there were the worries about the distant future… would she be able to go to college? Drive? Get married? Would she ever have a job or friends? Would she live with us forever?
That last question felt so heavy as I sat there contemplating a life with Down syndrome before I was even able to see and hold my daughter. I had a plan for my future. Raise kind and independent kids. Send them off to college. Help plan their weddings and babysit my grandchildren. Retire and have time to travel with Sam. Pursue things I loved but didn’t have time for during the crazy child rearing years. None of my plans included a child with a disability living with us forever.
That’s one of the hard things about a prenatal diagnosis. While it gives you time to prepare, it also presents you with all these facts and opinions that feel so cold before you even know your child.
Oh but then…
Then they placed her on my chest and all of those cold facts and opinions were replaced by the truth. This tiny little girl who cooed and wrapped her hand around my finger was not her diagnosis. She was human. She was my daughter. The same little one who kicked and wiggled inside me before I even knew about that extra chromosome. She may have Down syndrome but that was just one small part of her. Suddenly it didn’t feel so important or scary. In fact it felt beautiful.
We brought our girl home and got to know her. We have watched her sweet personality unfold. The way she lights up a room with her smile. The way she knows exactly when you need a little extra love and wraps her arms around you and gives you a sloppy open mouthed kiss. The way she knows exactly what she wants and is stubborn enough to get it. Her sassy smile when she is doing something she knows she’s not supposed to like unrolling all the toilet paper.
And one day I realized the shift. Instead of the worry I used to feel about ‘what if’ she lived with us forever, had turned into worry about ‘what if’ she wanted to leave us! My new vision of the future now included Ivy by our sides as we retired, traveled, visited grandchildren, and learned new hobbies. As she grows we will give her every opportunity to be independent . I deeply hope that she’ll go to college, fall in love, have a job, and good friends. But all of those things may mean that she doesn’t live with us forever. It’s what I hope for her, and yet it breaks my heart to think about. What once seemed like a less desirable future has become something that I will mourn the loss of.
So when this stranger asked “Aren’t we the luckiest?” I smiled back and confidently answered “Yes we are.”
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I just love this. It’s exactly my feelings, my thoughts. You nailed it. Mama, we ARE the luckiest.
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