My triplets (technically surviving quadruplets) Brenden, Tamara, and Caitlin were born in 1999 at 26 weeks. I'll post a summary of their birth story another time, but we'll leave it at the entire pregnancy from start to finish was a freak-show of medical mismanagement, ending with doctors who preferred to send a 26-week triplet pregnancy home in early labor rather than bother with coming to the hospital to examine and try to stop it. 26 weeks gave us the cerebral palsy in Caitlin, and a diagnosis of retinopathy of prematurity (ROP) (a wrong diagnosis) in Tamara and Caitlin. Caitlin also got Asperger's from me.
Later we had Liam, Jarod, and Kender, but one at a time this time. When Kender was born, he was almost completely blind. Finding his diagnosis led us to startling news: He has Familial Exudative Vitreo-Retinopathy (FEVR), a very rare condition...and so do Tamara, Caitlin, Jarod, and my husband Brian. Brian is blind, but was misdiagnosed and was told it wasn't genetic. Tamara and Caitlin were misdiagnosed because they were preemies, and FEVR and ROP look very much alike at birth. Jarod is legally blind, but just how bad his eyes were was completely missed by our pediatric ophthalmologist at the time (who has since been fired); we just thought he needed glasses and had a lazy eye. The girls aren't blind yet but do have active eye disease and have lost some vision.
So that's how I unintentionally ended up with the largest family of blind people I know. Now we pay for our retinal surgeon's retirement.
Other stuff: I'm a free-range parent. Part of me feels like I was pushed into it by having triplets in the first place (I only have two arms, after all), but I also feel like I would have been here anyway. I'm also a pagan Libertarian, and I am a Texan stranded in Michigan for the past 7 years (and we moved here for the money, if you can believe that). We homeschool our family, including teaching the skills of blindness now, which keeps us (well, me) very busy. And we are trying to set up sustainable gardening around our house, a little bit at a time.
Since my multiples are older, I have a bit of a different perspective, and I'll share what I've learned over the years as the muse strikes me. I look forward to sharing with you, dear reader.
Wow, what a story! So sorry about the doctor mismanagement -- I am outraged on your behalf! But your attitude is great. I am also a fan of Free Range Parenting. I think having multiples/many kids has made me more so. Kudos to you for all you do for your family, I'm impressed!
ReplyDeleteI would really like to maybe e-mail with you privately about your children's blindness. My son is almost 5 months old and won't make eye contact. Once in a while it will seem like he catches our eye, but only for a split second. He does love to look at his hand, and is attracted to anything that has to do with light (i.e. lights (duh!), the t.v. - anything that may be on, not just cartoons, the computer, our iphones, outside, etc...). He has been diagnosed with a lazy eye, but we have been told that structurally his eyes look fine and that the lazy eye shouldn't make him not want to look at us. We were told maybe he just needs time to catch up with his eye contact. We take him back to the eye doctor next month to see if things have improved. If not then they may fit him for glasses and refer us to a Neurologist. Possible links to Autism have been mentioned, but he is very social (he laughs at sounds, when he is tickled, etc... - just not when we make faces or anything visual like that). I would love any insight you have on this subject, and to hear your experiences.
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