Ten years ago today, a severely premature baby entered my life. Weighing in at barely one pound two ounces, my first born child much more resembled a frog than a human. See the picture here for yourself. “Where’s the baby?” asked my mother when she first looked into the incubator of medical equipment….
This morning, after an extra-long good morning birthday hug with Milagro and the usual get-to-school-on-time routine with her younger sister, I decided to take a few minutes and reflect. I re-read portions of the online journal we kept during her agonizing 137 days of NICU (Neonatal Intensive Care Unit) hospitalization. I reviewed the many, many entries in her guestbook from around the globe.
A true understanding of the gift of a child who doesn’t see, whose hearing is also compromised, will evade most who are parents and just about all who are not…unless you’ve met our daughter. If you’ve met Milagro, then you know the happy, chatty, silly, intelligent, literate, curious, strong, joyous, scientific person she has become, little by little, day after day for 3650 days of her miraculous life.
I could write an entire book about the adventures, knowledge, richness and loving souls her birth and unique needs have brought into our lives as her parents. Maybe one day I will. But today I’m grateful to the NICU doctors, nurses, surgeons, retinal specialists, early intervention specialists, special education advocates, administrators, teachers, speech therapists, pediatric pulmonologists, ophthalmologists, audiologists and other “ists” that all entered our lives when Milagro needed them. And I will never stop remembering that had she been born elsewhere with this laundry list of severe medical needs, this story might never have happened and likely would have ended with a quiet little funeral.
Instead, Milagro’s story has been shared (and is still being shared) with parents and professionals around the world through the “Letting Your Child’s Wild Side Out” DVD that we created. My husband and I felt compelled to create this because positive images of children who are blind were not readily available to us during her infancy. When we desperately needed to see examples of how a baby develops without sight, when we needed to see happy blind children to give us hope for our daughter’s future, these images evaded us.
So, perhaps as a coping mechanism as she turned five, we decided to share our struggles, learning, family photos/video and triumphs with others to give hope and specific ideas to parents in our situation. We’ve shipped it to over 100 individuals and agencies on four continents. Although we rarely hear from anyone who purchases it, when we do get the rare email from a parent whose imagination and hope was sparked by watching Milagro’s story, it’s truly priceless.
Through it all, from Milagro’s point of view, life has simply been full of love, laughter, Braille books, writing in Braille, trombones, dancing, school days, marching bands, horses, marshmallows, fishing, camping and most recently, family camps with other blind campers and rollercoasters. She has developed tremendous confidence and self esteem, expressed as “I am a great student!” or “I am a great writer!” or my favorite “I am a great math girl!” That she punctuates most of her sentences with exclamation points instead of periods also speaks to her exuberance with all things.
God indeed has answered all our prayers from those frightening early days after she arrived 100 days too soon into the world. She survived 25 ½ weeks gestation in the hostile uterine environment in which she found herself. She’s a physically fit, super-strong, healthy girl. She laughs many times a day and loves to make others laugh with her own brand of jokes and word play. And lately, from out of nowhere, she’s begun to say “Mama, you are a wonderful mother!” And “Papa, you are a great Father!”