Advice From An Ophthalmologist

We had just received the newest MRI results and they were worse than we thought they would be. The words ‘missing brain matter’ are hard enough to swallow, but our neurologist tried to be realistic concerning expectations for Adelaide’s future. He said things like, “As long as she can sense that you love her, that is the most important thing. No matter what she can’t do, she will give and receive love. Sometimes the brain can compensate to a point. We will have no idea about what she can do until she does or doesn’t do it, but here are the things that we typically see.”

Worst case scenarios were flying around inside my head, driving out all the words I had to Google to spell. Dave was remembering everything. Focusing. I was distracted. How was I supposed to care for someone who needed more than I thought I could give? What if Dave and I die on the three hour drive back home…who will care for her? Just two days before, I heard women talk about Empty Nest Syndrome. Was our nest always going to have Adelaide? Would she be a chick in an albatross’ body? Forever needing my wings of protection? And then instant feelings of guilt, realizing other moms in this very hospital were receiving other news. This is a Children’s Hospital. Children are fighting for the chance to go home. Had he mentioned death? He had used the words ‘unknown but possibly shortened life expectancy’…I pulled myself back into the conversation. These thoughts took moments, but that meeting was taking an eternity. Now I was begging God to let me raise her all her days. Lots and lots of days. Please don’t cut them short.

Dave updated our family, while I semi-successfully held back tears. We already knew there was no cure, but Adelaide looked horrible on paper. And even though we knew going into that second MRI that no surgery could fix her brain, there is always a teensy bit of hope in the back of a mom’s mind whispering about some surgery somewhere that is so experimental you haven’t even heard of it. But all that is finally quieted when you see the crystal clear images. Missing. Broken. And it happened in my womb of all places. It wasn’t some drunk driver. It happened when I was supposed to be protecting her and growing her. Her brain can never be fixed. There were so many new things to explain and I didn’t want to keep speaking the words and phrases and possibilities aloud, even to the people I loved the most.

But here I was, a few days later, trying to explain all these new things to our pediatric ophthalmologist. I should have at least practiced on some people in my inner circle. My first time conveying the new-to-us information to a person we barely knew. Pregnant with a third child, sleep-deprived, vomiting every 45 minutes, and weary. I put on my fakest smile and told him everything. The findings. The expectancies. The unknowns. The rarity of it all.

“You can’t put too much stock in everything doctors say may never happen. I’ve been at this 20 years and have seen so many things that should’ve never happened. ‘Never’ takes the God Factor out of it. And doctors don’t know everything. Including me.”

Our doctor won’t even remember saying these words, I am sure of it. But those words need to be embroidered on a pillow and engraved on my heart.

He followed up with, “Pretty Momma, Miss Bright Eyes needs surgery.” He was an accomplished surgeon, but terrible with names. The eye surgery had a 50% success rate and could reverse at anytime. But at least it was a possible fix. We couldn’t repair her brain, but maybe we could help her eyesight. Just moments from our little heart to heart, and it was time to get back to work. The never-ending and completely rewarding work of having a special needs chick.





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