Spina bifida can be scary. There’s no doubt about that.
When we got Henry’s diagnosis, we were both utterly terrified. I don’t think there are any words to describe the terror, other than the sinking, falling feeling you get on the first big drop of a rollercoaster. Nope, no, no, stop, I want to get off, you think. It’s too much, it’s too scary. I can’t do this.
The doctor’s words fell on us like cinderblocks: Neural tube defect. Hydrocephalus. Enlarged lateral ventricles. Myelomeningocele lesion. Severe case. Bilateral clubbed feet. And after he was done, I kept asking the same question, over and over in various ways, wanting to ease the fright: But what does that look like?
Henry’s diagnosis was very accurate. The terminology was very medical. The problem was, it wasn’t very descriptive — at least not to two terrified parents who hadn’t been to medical school. Words like “neural tube defect” didn’t tell us anything. We had no idea what lateral ventricles were or what it meant for them to be enlarged. We could piece together what hydrocephalus meant, but it told us nothing about our baby’s quality of life.
“But what does this look like?” I kept asking. “What does this mean?”
Could he grow out of this?
Would he be in a wheelchair?
Would he walk?
Would be be deaf? Blind? Paralyzed? Mentally retarded? Would he live? Die?
These are all things we ached to know. And of course, it was impossible for them to tell us. There is such a wide variation of ability in kids with spina bifida, that it’s simply not possible for them to look at Henry on the ultrasound screen and say “Yup, he’ll definitely walk.” or “Yup, he’ll definitely be paralyzed.” (Although they did tell us, with certainty, that he would be paralyzed. And they were wrong.)
As we left the doctor’s office, the nurse pulled me in for a big hug, bless her heart. She whispered in my ear, “Do not look on Google Images. Google Images is not your friend.”
Lo and behold, she was right. Later that afternoon, after I came home, fell into a zombified sleep, and cried all afternoon, I finally got the courage to google “spina bifida”, with one hand held cautiously over the screen, shielding myself from anything upsetting. And it was quite upsetting. All of the images I saw were aborted babies, open myelo lesions, and pictures of John Cougar Mellencamp (apparently he has a “mild” form). I shut the computer off, too terrified to look any further.
It was scary. as. fuck. By the way, I am completely, unmovedly opposed to abortion, but I can absolutely see why it would seem like such a healing balm. The fear is all-encompassing. And termination can take all that fear away. I get it. I do. (The only reason I even bring it up in this post, thereby “politicizing” it, unfortunately, is because the diagnosis and an offer to terminate goes hand in hand. Ask any mom — it does. It was part of our experience, it’s part of nearly everyone’s who was given this diagnosis. And it does make me sad to see that people have aborted their children out of fear of this disability — because although it sounds terrifying, it really is not that much different than raising a “typical” child. More doctors appointments, certainly. More surgeries. But It’s not miserable. It’s certainly not a fate worse than death. And while I don’t shame or look down on people who have chosen termination, it does make me sad to think what they missed out on. Somewhere around 60 percent of spina bifida pregnancies are terminated, and I do want to bring that number down, in the most respectful way possible.)
A few days later, I summoned up enough courage for another Google search. This time, I stayed away from the images page. I saw a baby hooked up to wires in the NICU and I lost it — briefly. When I recovered, I started looking for blogs.
And what I found changed my life.
The kids on these blogs? They were beautiful. They were happy. They had a light in their eyes just like “normal” children did, even if they had braces on their legs or shunts in their heads.There was a lot on these blogs I didn’t understand — lesion levels, different terminology (like L4-L5, AFOs, KAFOs, etc) — but it was obvious from these pictures that the medical terminology that the doctors used had not given us the whole picture of what spina bifida was. They weren’t just a laundry list of diagnoses, they were precious children.
I’m eternally grateful to the parents who shared pictures of their beautiful children with me, ultimately giving me the courage I needed to welcome Henry into our family. I truly believe that showing, not telling, people about spina bifida is what’s going to make the difference as far as education and awareness.
And that’s exactly what I want to do at Wifeytini this month.
On my facebook page, 200 people have already shared their children’s pictures with me as part of our #embracethebif campaign. Just a few days ago, I started an album called “Embrace the Bif!” so that parents could show other people “this is what spina bifida REALLY looks like!” And the response has been overwhelming. And so, so heartening.
Every time I type “THIS is what spina bifida looks like!” I feel like karate-chopping the air in victory. I feel like I’m traveling back in time and calming down the terrified, nauseated version of myself who dreaded raising a disabled child. Spina bifida is so much more joyful and happy than our doctors initially led us to believe, so much more than what we first saw on Google images. If even one prospective parent can see this album and have that fear quieted just a little, then I will consider #embracethebif to be a resounding success.
Just to clarify, our campaign is not a “pro-life” campaign. Anyone is welcome to participate, regardless of their stance on the issue. Our mission is education and hope — not shaming and condemnation for anyone who has made a different choice. So, while #embracethebif is not a “pro-life” campaign, I do think awareness is a “pro-life” issue: If you want to eradicate the negative stereotypes and the fear surrounding this diagnosis, making it ultimately easier for parents to welcome disabled children into their homes, disability education is so important. Spina bifida is not the devastating diagnosis that many doctors make it out to be. It is not a miserable, horrible, existence that’s filled with suffering. It’s happy, crazy, sometimes hard, sometimes wonderful, joyful, purposeful, active, fun. It’s dancing around to a Taylor Swift song with your siblings. It’s something I wouldn’t trade for the world.
Erase the fear, embrace the bif. Like, share, tweet. This is how we change hearts and minds. This is what we’ll be doing for October.