Sigga Ella
It seems like fertility treatments are becoming more and more common. While they used to be an avenue of last resort, now it seems like people who don’t conceive immediately turn to fertility specialists. Since some fertility treatments can result in multiple embryos, parents are now faced with choosing between them. It makes sense that they would choose the most likely to survive, but they’re being faced with other choices as well, such as the decision whether or not to bring to term a fetus with Down syndrome. I know raising a child with special needs must be a very hard road, but the people I’ve known who traveled that road say they wouldn’t have missed it for the world.
Luckily, my baby-making years are behind me. I’m very grateful that I will never have to face the decision of whether or not to carry to term a special-needs baby, because I honestly don’t know whether I’d have the courage to go forward. If I knew my child wasn’t going to face pain or years of surgeries or a compromised quality of life due to profound physical issues, I think I would probably decide to have the child, but unless I were faced with an actual (rather than a theoretical) decision of that nature, I don’t know for sure how I would react. I don’t envy the generations that have to make those hard choices.
It occurs to me that maybe if some of these detectable (but untreatable) conditions are demystified, prospective parents can at least be better informed. Enter A&E’s new documentary series, “Born This Way.” The series follows six young friends who all have some version of Down Syndrome. I have only watched the first two episodes (available here), but I’m already hooked.
I remember watching the TV series “Life Goes On” and falling completely in (non-romantic) love with Corky. The character was beautifully played by Chris Burke, known as the first primetime star with Down Syndrome, and I think he made great strides toward helping the general public understand this disability.
Icelandic photographer Sigga Ella is doing her part, too, with her photo project “First and foremost I am,” comprised of 21 very sweet portraits of people with Down Syndrome. (Please try and ignore the backdrop.)
Sigga Ella
Sigga Ella
Sigga Ella
Sigga Ella
Sigga Ella
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My OBT 
December 20, 2015 at 1:44 pm
Yes, yes, and yes! Love to see exceptional identities featured and celebrated. If you have time, read Far From the Tree – amazing book about parenting children outside the “norm”….it’s absolutely amazing.
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December 20, 2015 at 2:07 pm
That sounds wonderful! I’ll give it a try!
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December 20, 2015 at 4:25 pm
The portraits are beautiful. The children have such open and expressive faces. It is, therefore, a shame that the ugly floral backdrop draws so much focus away from the sitters.
I agree that more information brings with it more difficult decision-making but I also like to think that early detection of disabilities and issues also gives time for parents to prepare for having a children who is different from the norm. A high risk of Downs was determined in my final pregnancy. I opted to not even have the amnio for multiple reasons but mostly as that would only tell me if the baby had Downs or not, not whether they were otherwise healthy. My previous pregnancy had ended in stillbirth too so I could not face making a difficult decision. We chose to be vigilant but without further testing. That was the right decision since our son did not have Downs or any other condition. I do think that what helped with my decision making was that I did not fear the possibility of raising a child with Downs. I think that was down to always having been exposed to people with special needs since I had an aunt and uncle with special needs and spent time with them and their friends at the day centre they attended. Projects like this probably do serve to demystify and normalise medical conditions and hopefully empower people to make informed choices.
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December 20, 2015 at 5:32 pm
I didn’t know about your miscarriage and last pregnancy. That must have been so hard. I’m glad it all worked out for you. I think you’d be pretty good at being the parent of a special needs child. You certainly seem to have the ability to laugh when the going gets tough.
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December 20, 2015 at 7:07 pm
Technically I do have a “special needs” child as my oldest son has Asperger’s. I think dealing with a life limiting or debilitating condition must be incredibly difficult though. When I was in High School, I spent my summers helping a service that took special needs kids on day trips to give their parents and siblings respite breaks. I think decompression time like that must be helpful in recharging parental batteries.
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December 20, 2015 at 7:08 pm
PS I’ve written a post that’s about my experience of grieving a stillborn child. Here it is should you want to have a read: https://pictinpa.wordpress.com/2014/09/04/the-scab-of-grief/
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December 21, 2015 at 7:17 am
My sweet daughter, whom we lost five years ago, at age twenty, was autistic and mentally retarded. I am here to promise you, I would never have believed I had the courage to do what I did. These Garth Brooks lyrics ring true as anything ever has to me.
And now I’m glad I didn’t know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I’d have had to miss the dance.
What a dance we had. My momma heart goes out to all those parents of beautiful special kids – to all kids, period.
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December 21, 2015 at 8:41 am
That’s lovely! And that’s what the other parents have told me, too. Sending hugs.
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