I’m one of those annoyingly optimistic people. Always glass half-full, things happen for a reason, the best is yet to come, blah blah blah. Even when challenges arise, I always find the silver lining, appreciate what I have, put on a smile and try to have some fun.
So, when Ben noticed that Z’s rib cage wasn’t symmetrical, that her spine wasn’t straight, and her doctor scheduled us an appointment with an orthopedic specialist, I really thought we’d hear the typical “it’s nothing – let’s monitor it – come back in 6 months.” But we didn’t. The x-ray showed a 30 degree curve and she needed an MRI ASAP to see if anything else was going on. Best case: scoliosis and a brace; worst case: neurosurgery. Okay – scoliosis is pretty common, we can handle that. Neurosurgery? No way – not my kid.
Again, I was optimistic and ready to tackle whatever was thrown our way.
Two days after our initial consult with the orthopedic specialist, Z had her MRI, and the day after, we met with him to hear the results. This is when my optimism really eff’d me. I was in no way prepared to hear the news that Z had a serious condition needing neurosurgery. For weeks after, I walked around in a daze of disbelief. Sleep was impossible, anxiety and fear took over. Ben and I experienced the worst of it during the weeks leading up to the surgery because Z actually had no symptoms or discomfort resulting from her condition. She kept telling us that we were acting “weird” – yes, baby, we were.
Zoë has Chiari 1 Malformation and Syrinx – basically, brain and spinal fluid flow was being impacted and all the fluid got stuck and caused cysts all the way down her spine. Her spinal cord became distended and the cysts caused the curve in her spine.
Z had surgery, and the past couple of weeks have been tough. But, without my friends, family, colleagues, strangers – all of the people who see pictures, reach out, send good wishes without knowing anything of what’s been going on – it would have been exponentially tougher.
So, thank you. THANK YOU. Thank you.
PS — And thank you to all the amazing doctors and nurses at Lurie’s. We’re so lucky to live in a city with one of the best hospitals in the world.