I'll start things off from my end with another intro. My name is Elayne, and I have six children. Three of them are triplets, 2 of them are blind, 2 are going blind, 2 have autism spectrum disorders, and 1 has cerebral palsy. Yeah, that was only six kids! You can read their birth stories on my own blog/site, Multiple Mayhem.
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.
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.