Postcards of Grief

Mourning is a process.

Comments on breast cancer by proxy, written by a woman coping with the loss of her mother.

Thursday, July 07, 2005

Carry me away

I’m a cystic fibrosis carrier. This is relatively new information to me. I’ve known for almost two weeks, but by now, I’ve pretty much grown accustomed to this reality.

Finding out that I’m a carrier brought up more questions than it answered. What do I do now? How do I get him tested? What do I need to know about my mutation? What are my odds, his odds, the kid’s odds? Do I terminate if Ebry has cystic fibrosis?

When you’re a pregnant cystic fibrosis carrier, the medical folks want you to make sure that the father of the baby is tested. In a case like mine, this isn’t simple. For one reason or another, my donor doesn’t have health insurance, and my insurance won’t cover him getting tested. I spent several days worrying about what to do, how to get him tested, and how to pay for it. My father has offered to cover the cost, but I’m not so sure we’ll be getting it done.

Throughout that weekend, I thought about it and calmed down more. We decided that no, we wouldn’t terminate the pregnancy if the kid has cystic fibrosis. Even if my donor is also a carrier, there’s a good chance the kid won’t have it. I know someone in his late 20s with cystic fibrosis who leads a very healthy life and plays in a band. We live near a big medical center with an accredited cystic fibrosis treatment center. This is going to be okay.

I spoke with a wonderful nurse at a cystic fibrosis care center. My goal was to get more information about how to get the donor tested and if there were any public assistance programs for such a thing. When I told her that I did not intend to terminate if the kid had cystic fibrosis, she told me not to pay out of pocket for my donor’s test. She said that the several hundred dollar test would be better off run when the baby is born and covered by my insurance. It won’t make my pregnancy high risk. My kid having cystic fibrosis won’t stop me from having a midwife for my delivery.

And to think, I had all these plans to put up a link to my Paypal account on this blog and make a tearful plea for someone to help me cover this cost.

I will say that while visiting my mother’s grave this weekend and walking through the streets of the tiny town that’s so far away, I realized that if I lived there, I would most definitely want to know. If I lived there, I might well consider moving closer to a treatment center, preparing to live my life to revolve around treating my child’s disease.

But today, now, here, everything is okay. I’m beginning to feel my uterus poking out from behind my pubic bone, and Ebry and I are doing fine.


At 1:46 AM, Blogger FractalGirl said...

Emilin, I'm glad you feel peaceful about this. And I hope you enjoy your pregnancy; I loved all the changes my body went through (well, except for the very beginning and the very end, but that's normal). The best is yet to come, but enjoy the now. :)

At 7:45 PM, Blogger Lisa said...

Do you know what an amazing person you are? You have a great attitude . . . I'm going to steal just a bit of it for myself. :)

At 8:20 PM, Blogger Emilin said...

That's very kind of you, Lisa, but if you don't mind my saying so, I think you're due to share some of that crack you're smoking.

At 1:11 PM, Blogger Shelli said...

coming to a place of peace about the fears in our lives is a very healthy thing.

I'm hoping that Ebry is A-OK.

At 10:07 PM, Anonymous Anonymous said...

I'm a carrier, too. As you know, J doesn't have CF. One thing I didn't know that I'm glad you found out is how unlikely the disease is to manifest even if there are CF-related mutations on both sides. I'm very impressed with your clarity of thought when under such stress. I did not achieve it, ever, about anything related to my pregnancy. You really are amazing.


At 1:28 PM, Blogger Sharon said...


My name is Sharon Ray and I am the assistant editor of Cysticfibrosis.net. I am contacting you today in hopes of developing a relationship with your website; we have seen your site and think your content is great. Cysticfibrosis.net offer a free informational resource to both the general and professional public on this terrible disease.

I hope you show some interest in building relationship, please contact me at sharon.cysticfibrosis.net@gmail.com.


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