We’ve all heard it. I read it in my Facebook feed all the time– usually whenever someone asks about a baby’s sex, many parents will respond with the same canned, well-meaning response: “Oh, we don’t care, just as long as it’s healthy.”
I know you’re probably thinking I’m an insensitive jerk. Believe me, I don’t mean to be. In fact, I wish for the well-being of all of my friends’ and loved ones’ children. And it’s a perfectly natural parental desire to pray for a healthy child.
I’m sure my parents did.
I’m sure my parents stressed out endlessly and spent many a sleepless night, worrying about the health and well-being of their unborn baby back then. Any good parent does, although I’m no expert.
No, I’m not a parent. I’m not that kid, either. I’m the other one. You know, the one you prayed your heart out that your child wouldn’t be anything like.
The unhealthy kid.
Before this turns into a folic acid debate (don’t we just love those?), please keep in mind– I was born before the medical community was seriously beginning to talk about how to prevent spina bifida with the public. My parents weren’t warned about how beneficial folic acid might be before pregnancy. That being said, they did everything they knew to do to ensure my health and well-being from the start.
I’m sure my parents felt they had been kicked in the gut really hard when they found out I was born with spina bifida, hydrocephalus, neurogenic bladder and Arnold Chiari malformation, among other issues, all serious conditions that would require surgery in a matter of hours.
I’m sure Mami woke up feeling disoriented and confused when she found out that, instead of sleeping beside her, I was, at less than a day old, recovering from my first surgery– in an incubator away from her, in another hospital.
And, I’m sure Papi felt completely torn in half at having to rush between visiting Mami, who was recovering from a C-section and peppered him with questions about what I was like every chance she got, and visiting me, this girl he just met, who was completely dependent on doctors and nurses to keep her alive. Mami didn’t get to see me at all for five full days.
I know they felt helpless.
Mami recalls sitting in the surgery waiting area while I was having one of many shunt revisions (brain surgery, for the freshmen). Another family was waiting for a woman to give birth, and they were speculating whether they would need to buy blue or pink clothes. Mami felt livid. She thought to herself, “I wish I had their concerns!”
Thirty years and 19 surgeries later, my parents are undeniably happy. They adore me, and I adore them. Indeed, if anything, living with spina bifida and hydrocephalus has brought us closer, and it gives me such a great peace of mind to know that, challenges and all, they wouldn’t change me for an instant.
Their “unhealthy baby” became a polished public speaker since elementary school, being invited, often as keynote speaker, at fundraisers and benefits for different charitable organizations.
Their “imperfect child” graduated from the University of Central Florida with a B.A.
Their “sick kid” fought to make her community college accessible to all students, and met with the college’s senior administration to make it happen.
Their “disabled daughter” (ugh– the worst!) started a non-profit organization at age 27, The Laurita Spina Bifida Project, connecting people all over the globe who live with spina bifida, thereby fulfilling a childhood dream.
They no longer wish for that “perfect, healthy baby.” (And please, define “perfect.” I’d love to hear that definition!)
They wish and pray for my health and well-being, whatever that means for me at any given time.
They cry with me during my setbacks, and they rejoice in my triumphs and accomplishments. We work alongside each other, we pick each others’ brains, and we travel together– a lot. We eat, drink, and are merry. We go to Church, and then we go to Happy Hour. We entertain friends and family at our home.
We live a great life. It is not perfect, and yet, it is ours.
I no longer feel afraid that my parents grieve what could have been. I no longer fear that they are waiting for that “healthy baby.” They know now what’s possible, and whatever seems insurmountable to us, we muddle through it with faith and love for each other.
And, rest assured, we are never bored. Perhaps “healthy” is overrated, after all.