(grainy grainy grainy, but would you look at that face? sweetest little baby.)
We asked Jack if he wanted toys for his birthday, or a trip to Disneyland. There wasn’t a doubt in that boy’s mind that he’d rather go to Disneyland! I love that my family usually chooses experiences over gifts, because that’s where the memories are made. :)
Our trip started out pretty rough, with lots of tears from baby Owen. Owen’s albinism means two things: first, the sun is bright and blinding for his sensitive eyes, and he really just hates being outside because of it. And secondly, he’s higher-risk for skin cancer because he has so little melanin in his skin (which means it doesn’t process sunlight like our skin does). So keeping him covered and out of the sun is really important. Have you tried keeping a hat AND sunglasses on a five month old baby?! Ha. We have a sun cover for the entire stroller, but it isn’t enough to fool the kid. I kept him in the Ergo baby carrier for some naps, but he really just struggled and fought us most of the morning and early afternoon.
One thing that made our experience much better was that Disneyland caters surprisingly well to disabilities, and albinism is no exception. By going to City Hall, we were able to get a pass that let us either skip the line, go in through the fast pass line (even if we didn’t have one), or be brought to wait in line inside instead. This made things so much easier with Owen! We kept him covered from head to toe, but it’s still so hard to keep him out of the sun. And even in the shade and overcast days there are harmful UV rays, so we really wanted to spend as much time inside as possible. We didn’t use it for all rides, but it definitely came in handy to help us keep Owen out of the sun.
And around dusk, we boarded “It’s A Small World” (decorated for the holidays!) and little Owen just lit up. He became the baby we all know and love! He squealed and smiled at the lights and music, and really enjoyed the rest of the night. It made me cry — I just love this little boy of mine so much and it pains me that he misses out on so much right now. But it also makes me extra joyful when he is able to enjoy the world around him. This kid is already teaching me so much. :)