Reclaiming Joy

We went to Mexico for 10 days of family vacation. I brought every medication I could think of that Max might need, just in case. I love that he has his own passport and that this was his second international trip before he even turned three. He absolutely loves flying on airplanes and going to airports. When we had to ride the air-train to go between terminals, he was simply delighted, exclaiming about the doors and lights and track and making all the  weary travelers smile. This is what we wanted for him before we found out about his health issues.

We stayed at a beautiful villa right on the beach just north of Tulum. We only skipped the patch on our two travel days. Patching for a single hour each day seems easier. Although that hour goes so slowly that I can’t imagine how we used to patch for six!

My attitude to patching and this whole eye issue has changed. I am determined to simply enjoy my Max, just the way he is and stop worrying about trying to make that eye stronger. I am trying to stop worrying about what I might have done or not done to let this happen in utero. Or whether it would have mattered if I had found the spot on his eye earlier. 

Our new patching routine is something like this: first, he likes to snuggle up with me, then eats one (or more!) Lindt truffles as I put on the patch. Our nanny figured out that helped reduce the crying. And then I put on whatever he requests and we watch cartoons together. An hour is just four Firman Sam or Doc McStuffins episodes. We can do that. We count them down together. 

“Mommy, I can’t see,” he says. I try not to panic but just take a deep breath. 

" I know, sweetie," I say calmly as I try to imagine what he means: that using that eye is like trying to see when you are swimming through a murky water without goggles. It’s hard and a little scary. Especially when he reaches out to hold my face for reassurance. But all I can do is be there with him and reassure him. I can’t fix it but I can help him through it. Because as our Smart Man consultant said, maintaining that minimal vision could change his life if anything ever happened to his good eye.

Now, when I see him squint his weak eye, I think of how the glare from the snow and ice  hurts my normal eyes. Cataracts cause glare from normal light sources so I make sure to have an assortment of sunglasses for him to choose from. He didn’t want to wear them at first, but then I pointed out how Tom in Firman Sam wears sunglasses to fly his helicopter. 

“Maybe,” I say, “if you practice wearing sunglasses, someday you can fly a helicopter too.”

This was even more important during the day in Mexico. One day, we went outside on the beach for a walk while the patch was on. We both heard a helicopter but at first couldn’t see it. The it appeared close over our heads.

“Max, look! The helicopter!” I exclaimed and pointed, turning him so he could see it. He looked intently at where I was pointing.

“I can’t see it, Mommy,” he said.

I ripped the patch off, a small piece of my heart breaking off at the idea that he could not see what I saw so clearly.

“I see it Mommy, I see it!” he happily announced. We watched it disappear. I gratefully absorbed Max's stories about where he thought they were going and what the "hepicoper" was doing in his sweet little voice. And then he allowed me to replace the patch for the remainder of the hour.