Monday, April 22, 2013

How Spina Bifida Changed My Life

Nobody at our house "Suffers" from Spina Bifida. Evangeline was born with it, sure, but I'd hardly call her life a suffering. At least no more than anybody else's. Spina Bifida is and will be part of Evangeline's struggle. And by "struggle" I'm talking about what Dr. King was talking about when he said, "Human progress is neither automatic nor inevitable... Every step toward the goal...requires sacrifice.. and struggle; the tireless exertions and passionate concern of dedicated individuals." We all struggle with things. Our background, our past, our future, our goals. These things give us challenges that cause us to rise above ourselves, push beyond our limits and find the sweetest kind of success- the one that is hard won; the one that costs.

I have been thinking since last night when a Facebook Friend and Disability Advocate asked me to write a little something about how Evangeline's diagnosis has progressed and how Spina Bifida has changed my life (and her daddy's life). And after a lot of thinking, and remembering and crying and laughing, I've decided to tell you my answer; even though after you read this you may come to the irrevocable conclusion that I am profoundly and unalterably nuts.

I want to be VERY clear here in the beginning...I'm not saying I'm thankful for Spina Bifida (I'm not sure I'll ever be able to say that).... but I am thankful for all the things it has brought to my life. And I'm not talking about sleepless nights and doctors appointments. Those things happen but then are over and done and forgotten as life moves on. I'm talking about the things that matter. And that's the first thing Spina Bifida has done for me- its taught me when not to sweat the small stuff. I used to be so uptight and worried about everything. I was an obsessive planner who had a clear definition of "perfect" in all aspects of life and did what I could to achieve that goal. But when I walked into the gender ultrasound at 17 weeks pregnant, I walked out with the knowledge I was having a girl....and I got a little bonus in the form of a diagnosis for my daughter....words I didn't fully understand: Spina Bifida. Oh! Pregnancy was so hard on me. I tell all women that pregnancy is the hardest part of the whole "spina bifida experience". The unknowns will kill you. You teeter on insanity at every appointment (and there are multiple ones a month) waiting for some scan to show you something...anything to answer the million questions you have about this tiny person you are madly in love with. And the answers don't come. Because the only truthful answer you can get is, "Time will tell" or "We don't know". I remember the day the maternal and fetal medicine specialist told me that "as time goes on you will feel her kicking less. This is because the longer the nerves are exposed to the amniotic fluid, the greater the damage to the nerves." I felt so many times like everybody wanted to steal my hope. Here I had just seen her tiny foot flex on the ultrasound. Like she was tapping her foot to the music of my heart or the rumble in my belly from the meal we had just shared. I was all smiles to see her moving and doing well...right up until somebody told me to not get my hopes up. I spent a lot of hours wondering what she was thinking in there... If she would be happy when she got here & trying to imagine what she would need and how I would get it for her. I learned soon enough that imagination is a vicious and wooly beast compared to reality. I could imagine so many things far worse than any reality I have since faced. In my pregnant months, in order to preserve my sanity, I learned to tame my imagination and put down my perpetual planning. I learned to accept each day for what it was and not what I wanted it to be. I let go of a lot of stress. My entire way of seeing the world changed.

During my pregnancy I also found the rebellious teenaged me, the one I thought I'd outgrown. But now that defiant girl had a mission... To hold onto hope, all other things be darned. I told more than one person, with my hand touching my belly and my nose up in the air, "you don't know MY daughter" when they tried to tell me what would go wrong. And I was right. They didn't know her. Her kicking in utero didn't slow down till she was too cramped in there to do much kicking. The last ultrasound they did of her, she flexed her big toe for them. As far as I was concerned, I couldn't have been more pleased than if she'd flipped the bird at every nay-sayer and hope-slasher in the bunch. (It sounds terrible I know, but its true!)

My husband had it right all along. More than one night, we'd crawl into bed after a long day's work and he'd hold my hand and we'd say our prayers and then he'd snuggle up close and put his hand on my belly. She'd kick a few times at the pressure of his hand. "We are lucky," He'd whisper, "That God would give us such a gentle soul." I always smiled and drifted off to sleep peacefully because I knew what he meant. Bj has always said that a person must be strong to be gentle. Hand any man a 10lb weight and tell him to set it gently down on a table, and he can do it. Hand any man a 200lb weight and not all will set it down gently. Most will drop it with a thud. That is because they don't have the strength to do it gently. It’s the same way with human interactions. Weak people will rail and scream and berate others when things don't go their way. They don't have the strength to find another way; they lack the strength to be kind. But the truly strong- the great men and women among us- will find another way to achieve their goals and they will be nice to their neighbors while doing it. We knew that God had gifted us with a strong, gentle and great soul in Evangeline. I knew even then that she would rise to every challenge- that while the going would be hard, it would shape her into a mighty woman of valor.

(Of course, I didn't see a mighty woman of valor when I held her for the first time. I just saw the cutest most amazing 7lb 1oz baby girl EVER!)

And after she was born, the lessons spina bifida taught me were learned and learned again. They rubbed like sandpaper against the rough corners of my life. With each thing we came up against, I let go of more worry. I learned to take joy from the exact moment I was living in and leave the planning behind. I learned to stop obsessively asking questions to which there was no answer. I learned to take things as they come. I learned a kind of strength I never knew was in me. When at four months her ventricles enlarged to the point she needed a shunt, I had learned enough to put my worries aside and be thankful such an invention existed. When her shunt was revised 5 months later, I was just thankful that her surgeon got out of bed before dawn on a weekend to come and take care of her.

Evangeline's journey to mobility has been slow but SO so rewarding. As a family, we have learned to cheer together. Princess sees our clapping as extremely motivational. She doesn't always know what we're excited about, but she will stop and clap along with us. Bouncing up and down with a big baby grin on her face. Evangeline didn't sit up well till 6 months. She didn't roll over till 8. She didn't army crawl till 12months, didn't four point till 16. But each milestone has been call for a riotous celebration. Every small achievement is a reason to call family and cry together for joy. We celebrate victory often. We encourage each other on. Evangeline is still gaining strength in her upper and lower body to pull up and stay standing for long periods. Her custom walker is on order and it will help her take those first few precious steps on her own. That glorious day, her daddy has promised her a parade. We'll all pile in the car and roll the windows down and smile and wave, like she's the festival queen riding on the grandest float in town and we are her attendants. It doesn't matter that the rest of the world isn't celebrating or parading. We can enjoy ourselves anyway! Spina Bifida has brought our family a sense of accomplishment and of working together. When we see Evangeline reaching for something up too high and grunting and trying to get at it- our goal becomes finding a way to help her do it for herself. It takes a lot of daily work on the part of me, Bj, Evangeline, Grammy and Yaya (who watch her while we work) so that she can practice skills in ways that she thinks are fun games. But I can't tell you the sense of satisfaction I feel when I see my daughter kneeling there, grin spread over her face, looking back at me with big blue eyes that say "Look what I got!" as she shows me the book she grabbed off the toy shelf. By herself!

So how has spina bifida changed my life? It’s given me tenacious hope, determined resilience, stronger faith, family goals and a present-focused outlook. Spina Bifda has introduced me to a group of amazing people in the disability community I would never otherwise have met. Some that will be my friends for life. Spina Bifida has shown me the true compassion and faithful support of friends and family. It’s shown me the strength of my little girl. I’m reasonably sure that if I got to pick the struggles in my life and Evangeline's life, these would not be the one's I'd have chosen. But now that I have them, I can confidently say they are manageable and not nearly as frightening as I first thought way back when the doctor first showed me her spine on the ultrasound.

The sound of my daughter's laugh, the "picture" she scrawls in crayon, the way she offers to share random slobbered-on food items with me...all these things are normal- as they would have been if there had never been spina bifida. So, all in all, Sb has changed many things in my life but it has taught me to appreciate and cherish those things it will never alter. The love and the support and the bond between my family, my little girl and me.


  1. Well written. I could only imagine what it was like for you and BJ on that day that you first heard the diagnoses of Spina Bifida. I know that the grace of God and the love you have for Ms Evangeline will not only get you through but will strengthen you. Tracy and I know of a young about 16 now who has Spina Bifida. Yes he has had many surgeries and is in a wheel chair, but he is an amazing person with intelligence and a great personality. From the first time you first meet him, his smile is forever imprinted on your mind. You are in my and Tracy's prayers.
    Ben Peters

  2. This was a great post! Being strong for Evangeline will teach her she will be strong as well. I read a blog post (can't remember where) but a small girl with Spina Bifida was trying her best to play with her sisters and it was very touching and inspiration. Has Evangeline been around any children? I guess maybe she is too young but as she gets older I hope that she will try her best to be the best. My prayers are with you and look forward to reading more from you.