Geoffrey has albinism.
We learned this on Thursday.
Jamie and I have both known in our gut for a while that something was “off”. We noticed—and worried—about the fact that Geoffrey wasn’t making eye contact. We noticed that his eyes kept darting back and forth, from left to right, in a way that made him look shifty eyed. We noticed he’d smile and laugh if we said his name or tickled him, but if we looked straight into his eyes and smiled, we’d get no response. We noticed that he wouldn’t reach out for objects unless they were right in front of him, or that if given an object he wouldn’t look directly at it but instead would explore it with his hands and mouth.
We talked about it with each other but we thought we were being paranoid. As the parent of one child who already has a disability, we are so sensitive to even the slightest hint of something wrong. Geoffrey was meeting his other milestones on time or even early. We decided to carefully watch, and wait.
At Geoffrey’s four month checkup on Wednesday, his pediatrician diagnosed him with nystagmus, a condition where the eyes move back and forth. We saw a pediatric ophthalmologist on Thursday, who examined our son and explained to us that he has albinism, a condition where there is a lack of pigmentation (color) in the eyes and often in the skin and hair as well. It’s this lack of pigmentation that leads to vision loss.
Needless to say, we were stunned. We never in a million years imagined this could happen. We are grieving and processing this information. Fortunately, there is some good news. We have already made contact with a couple families whose children have albinism, and they are doing extraordinarily well, even with their vision loss. The children excel in school, play sports, ride bikes, and have active social lives. They are able to participate fully in the classroom with some minor modifications such as sitting in the front of the room.
It is too early to tell how much vision loss our son has. Some people with albinism have 20/40 vision, while others are legally blind. But we do know that even with vision loss, Geoffrey will be able to do many, many things, and that the list of what he can’t do will be miniscule compared to all the things he can.
When Johanna was first diagnosed with Down Syndrome, we were given a poem called “Welcome to Holland.” The poem likens raising a child with a disability to finding your plane accidentally landed in Holland when you intended to go to Italy instead.
I’ve been thinking a lot about that poem over the last couple days. When we gave birth to Johanna, we discovered that we landed in Holland. We were shocked, and overwhelmed, but we soon learned that we loved Holland, with its quaint windmills and tulips and strong Dutch beer. 17 months later, we took our trip to Italy, with our second child, Theodore.
I won’t lie to you. Italy is amazing. Nothing can quite compare to the Uffizi in Florence, or to the gondolas of Venice, or sipping a fine Barolo while relaxing on a yacht in the Italian Riveria.
Now, with our third child, we find once again that our plane has been rerouted, but we’ve landed in a new place, a different place. I’d like to think we’ve landed in Iceland. Maybe it’s because Geoffrey, with his white gold hair and blue-gray eyes, could fit right in with all those Vikings. Or maybe it’s because while it’s a place many people wouldn’t choose as a vacation destination—it’s cold, and difficult to get to, and lacks the culture and fine cuisine of Italy—the reality is its fjords and tall mountains are among the most breathtaking you’ve ever seen.
So we’re in Iceland right now, Jamie and I, just soaking in the delicate greens and grays of the landscape and the flinty blue sea. We’ve had a bit of a shock but once we settle in we plan to view the Northern Lights and soak in the Blue Lagoon. Not to mention the phenomenal river rafting and mountain biking and spectacular black sanded beaches the likes of which we’ve never seen.
Are we sad we won’t have one last trip to Italy? Yes, but don’t pity us. We’re in a new place, an exciting place, and we’re beginning to realize that exploring the volcanoes and geysers of Iceland is exactly where we want to be.
We’re lucky, in many ways, to have children to take us to such fabulous, cosmopolitan places.
So, welcome us to Iceland. We’re scared as hell, and we don’t quite know what to expect, but we still think we’re in for the trip of our lives.