Down syndrome was supposed to be a living nightmare, or at least that’s what our genetic counselor had us believe when she posed questions to us framed in doom and gloom during my pregnancy with Hope. Sure, we had to get through open heart surgery and start down a path of what would be a pretty hefty therapy schedule, but playing with my baby instead of running off to some corporate desk job wasn’t exactly what I’d call a sacrifice.
When Hope was born, we were introduced to a group of four other moms who all had babies with Down syndrome. One of the moms had a one-year-old and was well into her second pregnancy, which I found absolutely fascinating for several reasons. One of those reasons was that although Hope’s Down syndrome was not inherited, we won a 1 in 1200 genetic lottery, so who was to say we wouldn’t win again? Could we handle two children with Down syndrome?
The thing about the Down syndrome family meetings is we all get very comfortable with each other very quickly. Our health, our children’s health, our families—it’s all out there. So after meeting this mom only twice I asked her the burning question, “What if your second baby has Down syndrome?”
She smiled, gave a little laugh, threw her arms up and declared, “Then I guess I’ll have two babies with Down syndrome!”
Her response was so honest, so perfect. I meant to ask her how she’d handle it, what she’d say to friends and family, what she expects her life might come to look like, but how could she possibly know the answers to any of these questions?
Somehow we’ve been swept up in a practice of superimposing our fears and insecurities on test results and ultrasound images to inadequately calculate the presumed quality of life of human beings we haven’t even met. Parents speculate on their capabilities of caring for a baby with a disability, and doctors overstep boundaries by speculating how a diagnosis might affect a family.
There’s one thing a family of a child with Down syndrome needs to know when planning for or discovering the good news of a second baby: Nobody can know who this little person will be, and you have no idea how the dynamic of your family will change until your baby is born. Your second could have Down syndrome. Your second could be born with a limb difference, as our son was. Your second could go on to discover the cure for cancer.
Instead of being scared by tests and appointments, just buckle up and enjoy the crazy ride, because whether your pregnancy is typical or not, your baby will thrive if you smile, laugh, throw your arms up, and declare an unconditional love. Everything else will fall into place.
Great article.. Those thoughts also went through my head when I was prego with Thor
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Loved it and the pictures!
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