Hydrocephalus in our lives can be divided into three separate stages. Stage one was fight or flight mode. Stage two was that period from when Grace had her surgery, but still hadn’t hit her developmental milestones. Stage three is where we live now, the “Oh yeah, you have Hydrocephalus and had brain surgery” period.
Stage one was a hard time. COVID had just started, Grace just got diagnosed, we started virtual early intervention services, and we still didn’t know how she’d progress or how we’d intervene. Stage two wasn’t really easy either. She had her ETV/CPC, so I was less worried. But she still wasn’t sitting independently, crawling, or walking. Stage three is funny. It’s funny how once you take that sigh of relief that your child has “caught up” you sometimes forget where you’ve been.
Now, it’s the little things that remind me of where we came from and what Hydrocephalus used to mean to us. Grace wears her Hydrocephalus Walk shirts pretty frequently. She wears them with pride. When we ask her what Hydrocephalus is, she will shrug her shoulders and run off. The other day I was brushing her hair and noticed a weird part in her hair. It took me a solid 10 seconds of inspecting her head before I remembered she has a significant sized scar on her head. That scar represents her first haircut & the surgery that saved us all.
I don’t take it lightly that Grace was extremely lucky. We were fortunate that we could easily get a second opinion, and the doctor performing that second opinion happened to be the founder of the surgery that saved her. We were fortunate we could drop everything, leave Sophia with her grandparents, and fly across the country to spend a month in Boston for Grace’s surgery. We could take time off work, work remotely, and devote 25 straight days to getting the best care for Grace. We were lucky enough to have Grace be the perfect candidate for this surgery. Lucky to have friends and family who bought us food, gift cards, groceries, hosted us for dinner, and emotionally helped us through the most stressful part of our lives.
We will forever be grateful for that. We are grateful that now, while there is a risk of her ETV closing, the likelihood of that is so slim. We are grateful that we don’t have to worry about shunt failures. We are grateful that now people ask, “How is Grace doing?” and sometimes I forget our days were spent with doctors, PTs, OTs, SLPs, and so so so many doctors. Most people would never know our chatty, loud, spunky 3 year old wasn’t always that way. It was about this time three years ago we were waiting on our second opinion results. It was all consuming. Now, Hydrocephalus is not longer a part of our daily lives…which is weird to say. I can’t wait to tell Grace one day about what she overcame. I can’t wait to tell her that the time we spent from her diagnosis to when she walked is what I am most proud of in my life. I am so proud of me, Spencer, and Sophia for rallying around Grace, cheering her on, loving her, and staying strong for everyone.
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