Under this blanket of anonymity, I can say those things that I would be horrified to speak out loud.
My friends keep asking me why I obsess over my daughter’s spina bifida and other complications. Why do I keep going back to rehashing what her life would have been like? Why do I keep looking for confirmation that I made the right decision?
Because, it was a non-fatal diagnosis. As morbid as it sounds, I would have rather she have a fatal illness than simply myelomeningocele and all of the horrible complications that accompany spina bifida.
I am actually slightly envious of those ladies whose in all honesty, did NOT have to make a choice about ending their child’s life – they just chose the method and the time. I don’t mean to insinuate that they have it any easier than I do, but there is a part of me that will always wonder what her life would have been like.
People only talk about the best case scenarios – the happy “miracle” babies, but that’s not what I need to know. I need to know what it’s like watching your child cry at the sight of hospitals. I want to know to know how I could keep my job and care for a 17 year old mentally disabled adult who is paralyzed. I want to know how I would afford having a special needs child.
I started searching for those answers, and I discovered the term “burden of disease.” I learned that spina bifida patients are living longer than ever, and chronic problems are just now being identified with SB. Oftentimes, symptoms increase with age. Adults can live in chronic pain. Only 20% of those diagnosed with SP are able to have full-time employment.
And while I still long we had been given a fatal diagnosis, reading those articles helps me come to terms with my decision.
I don’t understand those who say that CAN’T make a choice because inaction *is* a choice.
Yes, my daughter would have lived. Yes, there would be medical treatment for her. But ethically, I don’t feel that just because science can keep her alive doesn’t mean it should. I am(and always have been) a firm believer in euthanasia. What I did was non-voluntary euthanasia, even though I wish I never had to make that choice.
It’s one thing to believe something in theory, and then be forced to live that theory.