When I first began to write on Holdin’ Out for a Hero, and E-mails and friend requests from parents of children with spina bifida started coming in, Elizabeth Keicher was among the first mamas to befriend me. This was almost three years ago, I think, and I remember thinking what an adorable little girl she has. “Gosh, I hope I get to meet them someday.”
Although that day hasn’t happened yet for me, an equally momentous occasion has taken place for Elizabeth and her precious daughter, Emily, who is three years old. This month, Emily’s beautiful face was featured on the cover of Parents Magazine, and an interview with Elizabeth was promoted on their digital version.
Of course, I couldn’t wait to profile Emily and Elizabeth on Holdin’ Out for a Hero, so Elizabeth was willing to answer some questions for me. Read on to find out why Emily’s debut is such a big deal for the spina bifida community– but why it shouldn’t be a big deal in the long run.
How did you initially find out Emily had SB?
My husband Chris and I were first-time parents, and had been trying to conceive for over a year. We were thrilled to finally be expecting, and [went to] our 18-week routine exam with a sonogram for the baby’s physical. About an hour into the exam, the technician stopped and told us we needed to speak with our OB. We were moved to a regular exam room, and our OB came in with her laptop and said the technician spotted what might be a hole in the baby’s spine, and that in some pictures it was visible but in others, it was not.
Then she said, ‘”It could be spina bifida.”
I went numb at the prospect of any medical complication with the baby. I looked over at Chris, who was listening intently to the doctor. They immediately sent us to a perinatologist; we were rushed out of the room, given directions to a specialist five minutes away, and somehow composed ourselves and went to the next appointment.
Not even four years old, Emily has defied the doctors who once told her parents she’d never walk.
How was SB explained to you? Had you heard of it before?
At the perinatalogist, they did a higher-level ultrasound, and walked us through everything real-time as we watched the screen. Words like lumbosacral myelomeningocele, hydrocephalus, Arnold Chiari malformation, moderate severe hindbrain herniation, swirled around. She pointed to the film on the computer and noted the shape of our baby’s head, referring to it as the “lemon sign” as a result of hydrocephalus; she pointed to the cerebellum and explained it had the shape of a banana, a downward displacement blocking the brain stem, noting the tethered spinal cord was yanking the cerebellum down, thus restricting the flow of cerebrospinal fluid.
I told her I had no idea, no idea what anything she was saying meant. What did it mean for our baby? What were we talking about? Would the baby be okay? We were told there were no clear answers, [that] we wouldn’t know the extent until after birth, and possibly not even then, but much later in the baby’s life. We should expect paralysis, an inability to walk. No control over bladder and bowel function. The necessity of a shunt, and a lifetime of shunt complications, infections, clogging, failures – each followed by surgery. Varying degrees of intelligence challenges, from learning disabilities to severe compromised intelligence, all complicated by each shunt revision and complication. A lifetime of surgeries, each coming with compounded health problems and deteriorating quality of life.
At 9:00 AM on January 13, 2009, I walked into my sonogram appointment expecting to make a DVD of our baby, which we would hand out as announcements (only close family knew we were expecting). By 1:00 that afternoon, I was lying on the table in a doctor’s office I had never met prior to that day, listening to medical terms and images I was scared and confused by, and they were asking my husband and me if we still wanted our baby.
What info/resources were you given?
When you are pregnant and told you child has a medical condition, everything stops. As a parent, you want to secure everything for your child – so this uncertainty of how your child will be impacted by Spina Bifida is wrenching. Pregnancy was the hardest part for me, the waiting and the months of worry about her. I think what makes the diagnosis so difficult for the medical community is [that] they cannot tell you what SB is going to look like for your child. Someone with L4 may walk with no assistance; someone else may use a walker and braces; someone else might use a wheelchair. A lesion level tells you nothing in utero. Doctors can’t tell you if they will need a shunt, what the bladder and bowel challenges might be, what therapies will be needed, or how your child will progress. So what they should say is: your child’s future can range from this to this, but it is certainly manageable and will become your normal. You are still having a beautiful child you will love and cherish…” Everything was “won’t, can’t, shouldn’t, don’t”. But when you have a baby, when you finally get to see them, everything falls into place. You learn how to take on what needs to be done, regardless of what that entails. You just do it, because love is the biggest motivator of all. Having a baby means the opportunity to love someone unconditionally; having a diagnosis of spins bifida doesn’t change that. Just because someone has medical needs, developmental needs, doesn’t mean you love then any less. In fact, you come to treasure them, their accomplishments and hard work, more.
What helped you and your family, or what didn’t help you? Did you encounter any blatant misinformation or misconceptions that you would now like to debunk?
For me, finding the support group on Baby Center was key. There were tons of moms, some expecting, some with newborns, and some with toddlers, just asking questions and sharing things. I learned so much, and received so much information and support.
Along with that support group, the blogs were amazing. Being able to hear another parent’s voice in all this was so grounding. The people that I have “met” online in the SB community are an amazing family. While most of us have never met in person, knowing there is always someone there who will listen and fully understand is an amazing thing. I am excited that Emily is here in this day in age, where she, too, can connect with people all over who have a true understanding and sharing of what her thoughts and life may be.
There are a lot of misconceptions out there with regard to disabilities. I know many people look in on our life, look at Emily and pity us. They make a two-second assessment of her, based on the walker, and assume life is hard, tough, and sad. I know this because people approach her, and “tsk” or “awwww” with pity; they tell me they will pray for her, and instruct me to do the same. Please don’t pity her! I don’t want to trivialize how hard she works –because she is the hardest-working child I know- or trivialize how challenging it is to manage many aspects of spina bifida. But everyone is working through, or dealing with, something in their life. I can totally see they are just processing what they are seeing, but therein lies the issue: people are so unfamiliar with other people, kids, of all walks of life and with various medical diagnoses that they are almost startled. For some people it is the first time they have ever seen a pediatric walker – people will say “I had no idea they made walkers so small” – which means they never conceptualized that a child might not be able to walk. This is what I hope to see changed. Society as a whole need to be familiar with images of people in walkers, wheelchairs in print, television, and media. Our norms are shaped largely by what we see and hear through these venues. Where are the daily images of someone using a walker, in a wheelchair? Having a kid on the cover of a mainstream magazine, who has SB, or who is using assistive technology, should be a regular occurrence; no big deal, because we have fully embraced that as typical in daily life and society. We have far to go with society as a whole – but we have a responsibility, as her parents, to facilitate this change.
Although her parents have rearranged their schedules to incorporate a rigorous regimen of several therapies for Emily, Elizabeth says that soon became their “new normal,” and she is thriving.
How is Emily doing today? What are your hopes, dreams, and goals for her as she grows?
Emily is doing amazing! She will be four on June 1st and stays home with me (I have a small, web-based business, so I work from home). Right now she receives Physical Therapy in-home twice a week. We have had the same therapist since Emily started therapy at three months. She has been with us and watched Emily grow, and her support and encouragement of Emily has been crucial. In addition to the PT twice a week, she has aquatherpy once a week, hippotherapy once a week, Speech/Articulation once a week, and Occupational Therapy once a month. Outside of therapy, she takes swim lessons once a week and we attend a music class weekly. She is your typical three-year-old: she loves everything Disney – all the Princesses, Mickey Mouse, you name it. She loves pop music and can identify the song [and] artist in almost a note. She has wonderful manners, and is super easy-going and friendly, just genuinely friendly all the time. When we go out, she walks right up to people and says “HI! What’s your name?” Inadvertently, she is helping break down that person’s judgment of her – many are able to look past her disability, and see her.
She is going to run her second kids’ dash at the Disney Marathon on January 12 and is super excited about getting a bib and a medal! She has been practicing running in her walker, but honestly she’s already quite speedy!
And of course, our biggest news is, she is the cover model for the February issue of Parents Magazine. [My sister and I] are runners for Team Spina Bifida – you fundraise for the SBA, and in exchange they support you in a race: a half or full marathon, triathlon, etc. So when Parents Magazine reached out to SBA in October, looking for kids interested in appearing for a photo spread including kids of all kinds, SBA reached out to us. Emily and I headed to NYC for the shoot in October. It went very well, and two weeks later, Parents e-mailed us, asking that Emily come down and do a cover try! We were blown away. We have never even had a family picture, any kind of professional pictures! We have never even done pics of Emily at JCPenney or anything! Emily had a blast on set; she asked for Lady Gaga to be played and she had everyone dancing away. Everyone at the shoot was super professional, yet fun and inviting. It was an amazing experience for Emily, and I have to say one of the best experiences for me: to watch Emily be photographed for the cover of a mainstream magazine was overwhelming.
What made this so important to us is they were not doing a story on spina bifida. This is a mainstream parenting magazine, the first of its kind to feature a child who happens to use a walker, or crutches, on the cover. Emily isn’t on the cover for special needs; she isn’t on the cover because they are taking about SB. She is on the cover because she did awesome at the first photo shoot and they saw beauty in her, true inner beauty. And in addition to the print copy, she will be on the cover of the tablet version, and she is the banner on the FB Parents page. Any other places where Parents is, that image will be [there], like [on the] Parents Pinterest page, for example. [Check them out on Twitter, too!]
In addition to the cover, I did a brief interview with the Editor-in-Chief, Dana Points. That video is on their website and may also run in the tablet version of the February issue.
And there was a brief interview with Ellen Seidman, who blogs for Parents and has is the author of the blog Love That Max. It’s my understanding that there will be an inverview with Dana Points, the Editor in Chief at Parents, about the shoot on Ellen’s Love That Max blog on Monday. Here is the article from the Parents website.
I haven’t received the February issue as of yet, but there may be a photo inside the magazine as well, of Emily doing a Valentine’s craft. But I don’t know for sure (I’m dying for my copy to arrive!)
We have the same goals and dreams for Emily that we had before we even conceived her. We want her to be independent, confident, strong, and happy. We expect her to go to college, get a job she loves…and if she wants to be a pastry chef, a teacher, a doctor, a musician, a writer, a businesswoman – whatever she chooses as her path, we will stand behind her and support her. During the Parents video interview, Dana Points asked the same question…what are our hopes and dreams? I stopped for a moment and looked over at Emily, who was dancing away, having a truly glorious time. And I thought about how dark things had been the day we heard her diagnosis, and how uncertain I had been of what her future looked like. What a blessing, to have trusted things would be okay. Even though I have no idea what her future holds, I am excited to be part of the journey.
What do you feel is the most important thing that a new family welcoming a child with SB needs to know? What do you wish you had known/been told when Emily was born?
Get a great support team: get your child into Early Intervention as soon as possible, and make sure you have a service coordinator who will listen and fight for you. Get a great team of therapists and don’t be afraid to ask for a new one if they aren’t working with you or setting the bar high for your child. Look into whatever programs you can get to help cover costs: Medicaid waivers, SS [social security], grants, etc.
Trust your instinct as a parent and fight for what you want for your child. We learned this very early in Emily’s life. Often professionals will tell you what your child needs, but you have to question their value system, and see if their recommendations match your family’s goals. When Emily was about one, we wanted to get a loaner-stander to bring her upright. It was our belief that her cognitive development would be enhanced by being off her stomach or back on the floor. When we approached the Ortho[pedic surgeon] about it at clinic, he shot us down without reviewing Emily’s medical file, without examining her. He told us we needed to come to terms with her diagnosis, and accept she wouldn’t walk.
This was unacceptable to us. We had fully accepted that she may not walk – but never would we allow someone else to tell us she couldn’t do something. Instead, Chris and I believe in giving Emily as many tools and therapies and technology as we can, and letting her show us what she is, or isn’t capable of. We promptly changed orthos, and perused the stander through other avenues and had her in a stander within a month. We now drive out-of-state to see [the] ortho at Shriners in Erie, PA. They treat Emily as an individual, and work with us as parents. As you can see from her pictures, she is proficient with her walker, and the same goes for her crutches. And, on October 23rd, during physical therapy, she turned to our therapist and said “Don’t help me! I will walk all by myself,” and walked across our family room, wearing her AFOs [leg braces] but completely unassisted. While she will need the use of her walker or crutches when walking to preserve her hips and knees, we couldn’t be prouder of Emily for establishing what she can do. She defines spina bifida; spina bifida does not define her.
A big thank you and much love to Elizabeth and Emily for allowing me to publish their story. I recognize that every parent of a child with spina bifida has a unique story to tell, one that is theirs and theirs alone. I will be forever grateful to them both for opening up to me, and to all of us. They’re indeed making this world a better place– by making spina bifida “normal.”
**Publisher’s Note: This post is in no way sponsored by or affiliated with Parents Magazine. All photos used in this post are owned by Elizabeth Keicher, and have been published with her consent.
© 2013, Laurita. All rights reserved.