I realized today that although I’ve never said it out loud before, I think that Ramona’s condition is probably my fault.

I know that no one knows how these things happen, and that it’s “random”. But something happened at Ramona’s conception and it seems to me that I’m the most likely culprit. I didn’t really take prenatal vitamins, I was throwing up all the time. I drank before I got pregnant. I don’t take good care of myself.

And when we found out I was pregnant and my progesterone was critically low, I was so desperate to have a baby that I took progesterone supplements to sustain it. Maybe they helped, maybe not. Maybe the pregnancy wasn’t meant to continue, maybe I forced God’s hand and Ramona should be celebrating in heaven right now with God instead of suffering down here on earth with us.

There was a whole movement, which I believe is now defunct, that promoted the idea of forced sterilization to improve our genetic stock and therefore improve society and the human race. They gave rudimentary intelligence tests and anyone deemed a “moron” was recommended for sterilization. Seriously. It finally went to the Supreme Court where, wisely I think, it was overturned. But it did make it all the way to the Supreme Court.

Although this sounds so barbaric to me, I pause more when I talk with women who have elected to terminate a pregnancy because of a birth defect or have chosen to genetically screen their embryos before implantation. I feel personally offended by their choice, honestly, because it seems like they’re saying Ramona shouldn’t be here. But I have to admit that I don’t always feel it’s a clear cut decision.

I know someone whose big life philosophy is “Just because you can, doesn’t mean you should”. How does that apply here? Is it, “Just because you can screen your embryos doesn’t mean you should”? Or is it, “Just because you can keep an extremely ill infant alive with very little regard for their quality of life doesn’t mean you should”?

I admit that I don’t know the answer. I admit that I sometimes wonder if this is all a big mistake that I’ve somehow invited into my life by so desperately desiring a family. I admit that sometimes I wish our lives weren’t this complicated.

But I keep going back to that moment in the PICU, in that little room with the complimentary beverages reserved for very, very bad news. In that moment when the Dr.’s told us she had a slim chance of recovery I would have plucked out my right eye with my bare hand just to have the chance to see and hold her again “the way she was” just one more time.

I never really got the chance to do that. By the time she was well enough to take home we knew she would never be “normal”. I think sometimes that same panic, the desire to do something, anything to turn back the clock and make things right again gets the better of me. Maybe I’m still in shock and in my effort to make sense of it all, to make things fit, I’ve concluded that I’m to blame. I know that flies in the face of reason and research, but I just can’t shake it.

The problem is this: If it’s random and not my fault, the world is an unpredictable and dangerous place where anything, anyone, at anytime is vulnerable. But if it is my fault, that means Ramona is a mistake and not meant to be here. And that I have brought this grief on her and the people who love us.

So pray that I will have peace. Pray that Ramona will know how loved she is even during these times of doubt and shame. Pray that our family will continue to believe in the blessings this experience has to offer and give little notice to the burden it also brings to bear.

Thanks for listening, Jane.