Monday, April 21, 2008

March for Babies and Spina Bifida

Upcoming Walk Event:
Saturday, April 26, 2008 8:30 AM Opening Ceremonies; 9 AM March Begins

Location: Lincoln Park
12th & Gunnison / 6-mile route
Grand Junction, CO
Phone: (970) 243-0894
Debbie Horwitz, Director

March for Babies! is the new name and reflects what the event and the March of Dimes are all about: babies. Take off your walking shoes, put on your marching shoes and sign up. You'll be supporting lifesaving research, services, education and advocacy that help all Colorado babies get a healthy start.
This organization has a mission to improve the health of babies by preventing birth defects, premature birth and infant mortality.

The "March for Babies" has always held a special place in my heart. Every year, when the event rolls around, I check out the poster child to determine if the selected kiddo was one born with spina bifida. Two times out of three, yes, spina bifida is the birth defect of the cute kid with crutches. Believe me, I can tell.

My daughter was born with this condition, and with the more severe type termed myelomeningocele. She also has hydrocephalus, with its own set of serious complications. Sometime I will write about her remarkable life.

Disaboom gives a thumbnail definition of this birth defect:

..."spina bifida” ...(with neurological deficits in movement, sensation, bowel, and bladder). During development, the bony arch fails to form and the meninges (spinal cord covering), spinal cord, and related nerves herniate through the opening which leads to neurological injury. These tissues may be partially or completely covered by skin. There may even be an open defect with leakage of spinal fluid and the spinal structures exposed to air.
As young parents, we educated ourselves about what the future might hold for our daughter. I joined parent support groups, learned how to give my child physical therapy help, researched physicians and health care systems and practically lived side by side with her for many years at various hospitals across the US.

Support groups are important not only for the provision of information, but also to keep isolation in check. Current groups involve internet connectivity, such as the spinabifidaconnection,
...a community where the ups, downs, positives and negatives of living with spina bifida are discussed. It is a person to person support website for spina bifida. This site offers resources, personal experiences, and support so that our visitors can discover options and make decisions for themselves.
After her birth, and for many years thereafter, the isolation and, at times, almost despair, was not mine alone. I learned other mothers had walked that scary path of having a child with special needs long before I ever took that first step.

If you have never read the poignant “Welcome To Holland “ piece by Emily Kingsley, read it here: Someone Different. That writing precisely mirrored my thoughts as a young mother.

The more recent piece of writing that I would like to put directly in this blog is by Maureen Higgins. It is entitled “To You, My Sisters”:

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome to Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

And we do reach for the stars. This text is for all you moms who dedicate your life as caregivers, by accident or choice. The March for Babies brings it all home to me again this week. Research into prevention of early births and causes of infant mortality is key, and March for Babies is helping.

Bless all of you out there walking for our kids. And God bless and strengthen our children.


  1. Wow! I've always admired you. You are such a good Mother. What a wonderful article, made me cry.

  2. Thank you, Betty. I only wish I could have done a few aspects of child rearing better. Nancy

  3. What a beautiful entry. Thank you for sharing some of your experience - you and your family are in my thoughts. We've faced different challenges, but there is a uniting element to caring for any special needs child. Take care.


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