This is the story of Camila (Cami), our 3 and a half year old daughter with Spina Bifida.
We received Cami's diagnosis of Spina Bifida (SB) at 20 weeks gestation. Like so many other parents, we felt as though we'd been shoved into the deep end of a cold, dark pool. During the process of figuring our way out of that abyss, we heard from a parent of a child with SB, "Spina Bifida will not be the most interesting thing about her."
Hearing that provided some comfort at the time. But during the first few months of her life, however, SB certainly was the most interesting thing about her to us! Cami is our second child, so we had been through the "typical" adjustment of having a new baby at home. But a baby that needed so much medical intervention right away? Wow. We even created a blog to document every little event. 1) repair surgery (at 24 hours old), 2) shunt placement (at 7 days old), 3) three weeks in the intensive care nursery…etc., etc.
Now, three years after that diagnosis day, I see every day more how true it is that SB is not her most interesting trait. We haven't even updated that blog in a year and a half!
When we as an SB community talk about our experience, we often quantify things: X level lesion. X # of surgeries. X # of shunt revisions. Sat up at X months. Catheterized X times per day. I certainly do this, all the time. For the record, Cami's stats are: L3 level lesion. 5 surgeries, including 1 shunt revision. Catheterized every three hours since 16 months of age. Nightly bowel management routine. Uses a walker for short distances and wheelchair for longer ones. Wears a body brace for scoliosis and AFOs with twister cables to support her lower legs.
I have to remind myself to talk about her attributes that aren't quantifiable but are vastly more interesting. For instance, she has an innate positivity with a sweet, sunny disposition (unless she's having a typical "threenager" type of day). She is VASTLY more outgoing than me - she's never met a stranger. When we travel, she always seems to find the most irritated-looking person in the airport to wheel up to and say hello. She never fails to elicit a smile from Mr. Grumpypants Traveler.
She is also fiercely loving. She asks for hugs in the sweetest way possible ("Mom, I need a hug.") She's very tactile, and never fails to reach for my hand, rub my back, and hold my face in her little hands, especially when she's falling asleep. I cherish these moments like none other in my life.
Another thing I cherish? Her relationship with her older brother, Santiago, age 5. My husband and I are not the only ones who have reaped the benefits of a child who experiences disability. Santiago was the light of our lives for two years before Cami arrived, and the poor guy had to not only accept the arrival of some interloper (like any firstborn), but one that got extra attention. But his love for her has been sustaining for all of us. Despite the spats that happen between any siblings, she is his biggest fan. And he is hers. They both benefit from their relationship, but I wonder how different he would and will be were it not for a sister who does things a little differently than other kids.
Some friends and family have asked me how my husband and I stay calm and positive about having a kid with Spina Bifida. There are many reasons, but I think it's impossible to go through something like receiving such an unexpected and painful diagnosis and not come out of it changed. And this change, for me, has been for the better. I'm more grounded, more thankful, and have greater perspective about other aspects of life that present challenges.
Sure, there are tough days. Frustrating interactions with the medical and childcare systems. Constant self-questioning of if we're striking the right balance between her medical needs and social/development needs. It's tough to find childcare that can meet her medical needs and her need to be around typically developing peers. Finding a babysitter for a night out can be challenging because of her needs. And when she starts school, there will be different challenges to come.
So we try to stay in the present. Cami's favorite movie is Moana, the story of a brave girl who ventures out on her own and tackles unbelievable challenges to save her island. I think Cami can relate. When we watch the movie together, we talk about how she is brave like Moana. Appropriately, she was Moana for Halloween, complete with a boat costume that fit over her wheelchair and a working sail. (Before you think I'm the craftiest mom ever, please know that this costume was designed and built by some very talented folks at my husband's employer - Nike.)
Watching her zip around trick-or-treating in her boat costume, pulling on the sail's boom at the right angle to smack her brother - like any little sister would do - I thought, yeah, there's a girl who's about a lot more than Spina Bifida.