Along with other negative feelings like fear, helplessness, and uncertainty; the feeling that Stella and I are both missing out has not left me since our first treatment approach in the Pavlik harness. Though back then, we were missing out on small things like cute outfits and “perfect” photo shoots. In the Rhino brace, we graduated to missing out on close cuddles, traveling in a normal car seat, and fast diaper changes. Finally, in the Spica, we are missing out on huge milestones like rolling over, sitting up, and crawling.
As overrated as it may seem, we are at this point missing out on being a normal family. DDH rules us. We can’t just call a babysitter if we want to have a night to ourselves- it has to be someone capable and willing to care for a baby in a body cast which is few and far between, as you could imagine. When we do leave the house and venture into public with Stella, we are a walking attraction. People just stare and whisper things like we don’t notice. I am grateful that Stella doesn’t understand that she looks different but it still hurts my own feelings. Sometimes it hurts, even more, when people are vocal and forward about their curiosities. Some have asked, “What happened to that poor baby?” Which translates to: “What did you do to that poor baby?” Knowing that I did nothing to harm my baby and that she was simply born this way doesn’t make those insinuations any better. I thrive on being a good mother- it is my sole purpose in life. Having strangers treat me like I have physically hurt her is devastating. I fantasize about telling them I threw her down the steps just to see what they would say but I don’t due to the fear of some psycho mom punching me in the face at the grocery store. There are even threads in DDH support groups on tactful responses for when people ask those not-so-polite questions about our baby’s Spica. I still have yet to come up with my go-to witty response. I’m wondering if I ever will come up with something that satisfies me at this point. Sigh.
Anyhow, I look forward to the times where we are living our normal, treatment free life. DDH will always be there in the background haunting us with x-ray check-ups now and then but maybe there will be days where I don’t think about it at all? Today, I will always look back on Stella’s infancy and think about how much we missed out on. I mean that list is honestly endless and it sucks.
Sad post. Sorry followers.