why I call myself a #spinabifida mom

Why I call myself a #spinabifida mom
#spinabifida mom tip: a small shopping cart makes an excellent mobility tool at an outdoor Easter egg hunt.

If you read my Twitter bio, you’ll notice that among the facts about myself I chose to include in my scant 140 character allowance, I use the phrase #spinabifida mom.

This means my feathers were somewhat ruffled last night when someone I follow (and like!), whose baby has recently undergone surgery, expressed bewilderment that some moms choose to identify themselves through their children’s illnesses. For one thing, my daughter’s disability is not an illness. It’s not something that we can treat and eventually put behind us. It’s part of who she is and has been since long before she was born. It has shaped our lives in many ways up to this point, and it will be a defining (note I said “a” and not “the”) factor in the rest of our lives. Spina Bifida will mean more surgeries. It will mean more therapies. It will mean doing many day-to-day life processes differently. It will mean concerns about the accessibility of public places and the adaptability of certain activities. It will mean advocacy and activism and acceptance. It’s just a fact that it’s a huge part of Claire’s life, and, because we are her parents, ours.  Continue reading “why I call myself a #spinabifida mom”

A Claire Bear update: neurosurgery on Monday

IMG_3548We just got back from a visit with our (much loved) neurosurgeon, and based on new information in last week’s MRI, we have decided in consultation with her and another neurosurgeon she asked to give a second opinion, that it’s time for Claire to get a shunt placed to treat her hydrocephalus. The lay explanation is, due to her spinal defect and chiari malformation, Claire’s cerebral spinal fluid doesn’t drain from her head and spine properly, causing fluid to build up in her head (aka hydrocephalus). While she has had the hydrocephalus from the start, we and our surgeon chose to take a conservative approach instead of operating when she was a wee baby, because surgery is always risky, because the risk of infection and complications is greater in younger babies, and because clinically, she was having no symptoms or problems from the hydrocephalus other than a big head as a result of the fluid buildup.

However, the MRI we got last week showed that not only are the ventricles in her head very large, indicating a lot of fluid has built up there, but also she has developed a syrinx, or pocket of fluid within her spinal cord. This has the potential to cause her to have problems with her arms and legs, and given the great strides and progress she has made mobility wise, and the hope we have for continued progress, we do not want to risk this syrinx compromising her physical abilities in any way.

It is for these reasons that we’ve agreed to have the shunt placed on Monday morning. We are of course a little disappointed that she has to have neurosurgery, but we are ultimately confident that this is the right time, and hopeful that taking this step now will give her the greatest chance to achieve all she can developmentally. She’ll stay one night in the hospital, and then should be back to her normal activities within a week or two. Thanks for always cheering Claire on– her internet fan club means more to us than you can know.