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There Are Things We Can't Know

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My son was diagnosed with a rare genetic eye disorder after his 4-month well-child visit. I went to that appointment hoping to see that his weight was getting closer to the norms for his non-adjusted age, like we did every visit since he came home from the NICU. I thought we were past the hard stuff.   I left with a referral to a pediatric ophthalmologist, who squeezed us in the next day.   Then  he  referred us to a specialist since what he found was beyond his specialization.   There’s only one pediatric retinal specialist in the entire pacific Northwest. Within two weeks of that well-child visit my son was scheduled for surgery with that surgeon. Under anesthesia they found what they expected—he has a rare genetic disorder that causes retinal detachment, which in turn can cause blindness. The surgery was an attempt to stop its progression and minimize the damage to his vision. He had surgery on each eye a week apart from one another to minimize how much time he was under anesthesia.
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He's More Than His Eyes

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I guess I think about Sky’s blindness a lot. Particularly after visits with his therapy team or after a trip to Portland to see the doctor—it’s hard not to. I ride the rollercoaster of “he’s doing great! Look at him cruise a long!” then drop into a milestone-spiral thinking of how “behind” he is. Last week I went to a professional training in Portland, so Sky came with me and hung out with my mother-in-law while I was at class. I was there as Professional Mandi , and I just got to be a PT in a room with other healing women and got to talk about my toddler with others who had kids. At the end of the first day, I realized that I hadn’t thought of him as blind or in reference to any disability at all for the full day. I showed a classmate the photo his Mamo sent me at lunch without any worry about needing to explain his glasses or tell her that he’s blind. He was just my kid. I was just his proud mom. I don’t know what is normal in this world of parenting. We’re making it up as we go (as
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"Blind" is a Weighty Word

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  Blind When we first got Sky’s diagnosis, the term “visual impairment” was the primary thing we heard.  Sky is visually impaired.  He has visual impairment. We met a TVI–a teacher of students with visual impairment. So that’s what I told people–he’s visually impaired or has “vision issues”. It felt softer. I don’t know how it lands with most folks, but I think many assume that means he needs glasses. Which he does. Like many of us–we need glasses to help us read or help us focus our eyes. When I post photos on social media of him in his glasses I'll inevitably get someone messaging me to ask how we know he needs glasses. Most of us realize we need glasses because we can’t read the letters on the wall in front of us, right? Or we get headaches. Or things look fuzzy. It’s so subjective. But we can’t ask him what he sees.  Or rather, he can’t tell us. Yet. We know he needs glasses because a surgeon took out his lenses. We know he has structural impairments in his eyes that impact his
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What's Wrong With Him?

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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
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Sky's Story

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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
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