What Sky Sees

This is the question I'm most afraid of. It's the question I hear when people say my son's glasses are so cute. When that's the first thing they mention about him. You can see that he's different--he can't look you in the eye (oh how our hearts ache for that one). His eyes are different and it shows. I assume it's the first thing people notice. Maybe it's the first thing I notice. Ironically it's something we didn't notice. How do you see something that's off in your first child? I didn't know when to expect him to start making eye contact. Now when I meet a baby younger than 4 months I'm struck at how solid their gaze is. I guess we just didn't see day to day that Sky wasn't doing that. I've been wanting to share more of his story for some time. It's been a journey of figuring out how much to share, how much to hold close, and when to do it. When we found out he had vision impairments at 4 months, I shut down all soc...

If you’re new to this space, start here. I’m going to summarize Sky’s story here in the best way I can, so if you only read one post, you’ve got the basics. This is a little more factual and less feely--there have been SO MANY feelings through this journey--but I'll share those in other places. When Sky was 4 months old, his pediatrician noticed that he wasn’t tracking objects with his eyes. He referred us to a pediatric ophthalmologist (a rare find, turns out), and even called him after hours to get him squeezed in later that week. This was on a Tuesday. We saw the ophthalmologist on Friday. He gave a preliminary diagnosis of either FEVR or Retinopathy of Prematurity (ROP). Sky didn’t have an eye assessment in the NICU because he didn’t meet the criteria to look for ROP since he was born after 30 weeks and was just over 1500 grams, so it was unlikely that it was ROP. (If you’re a This is Us fan, that’s what a certain character has…) We were referred to OHSU in Portland to see a pe...