It all started a few months ago, when Stephen and I visited my general practitioner for my annual kidney tests. We do a 24 hour pee-collection test and a blood test. Pretty simple. But he hadn't seen us in awhile, and I think I'm his only patient with PKD (because he didn't know what it was when they sent him my CT scans saying it was probably PKD). So, he wanted to have a little talk with us.
He just sat down in his little rolly chair and frankly (something I love about him) asked: "Have you two talked about having kids?"
I was a little surprised. "We've talked about it...maybe 3? We don't know when."
"The sooner the better." He said. Then he began talking about a high-risk pregnancy team he knows in Salt Lake. My pregnancies are high-risk because of the PKD, and also because of my blood clotting disorder. I asked what would be the age limit for having kids, and he said "35".
I wasn't really listening because, though I already knew my time was limited, I didn't realize how soon we'd need to start making decisions. I don't know about Stephen, but I kind of began to dread the future. When can I get my degree? How can I fit babies and my job into one life? How could I have the energy for something like that? What about insurance? Aggggghhhh!!!
I was able to chill for a few months. The clean results helped. Then, a few days ago, I read a post from The PKD Foundation. It was a personal story about a guy with PKD. As usual. But this guy didn't realize his father had died of PKD-related complications at a youngish age (multiple heart attacks and a brain aneurysm). It was never diagnosed in his family until him. But then it dawned on me that I am the first person in my family with PKD.
My parents definitely don't have it. Their parents don't have it because their fathers are still alive (and old), and their mothers both died of different cancers, I believe. It would've been noticed. So, without them getting tested, I'm 100% sure I'm the first one.
That's a big responsibility, with a giant potential for guilt. I could have kids and probably bleed this illness into my family tree, or I could be responsible and stop it in it's tracks (i.e: not have kids). I never worry because I always imagine they'll have a cure soon. Or they'll approve the only available treatment in the United States. But it's possible that won't happen. How many people have had PKD kids with the hope that there will be a cure soon - and one doesn't come?
I don't know. I wouldn't be the only one. Many women with PKD choose not to have kids.
But now I'm thinking about it again. Trying to plan out my life, now that I'm slowly getting energy back. But I've done the math, and it doesn't add up. Babies + Career + School = impossible. Even if I do mortuary science (which I've decided is what I truly want to do), that's a little over 2 years away. And I can't have a baby during that time because formaldehyde. Afterward, I wouldn't be able to keep regular hours...could I? If I got an autopsy job, it would be a 9-5 or some variation but, if I got a funeral home position, I would need to be on call/at the funeral home all the time. Yes babysitters, but a) I don't trust them and b) would my work earn anything if most or all of it is going toward babysitters?
Those are not hours condusive to babies. And I'd be 26.5 after graduating. With 8.5 years to have up to 4 kids. IF 35 is alright (30 years old is when people start to have problems). Then, what good is my degree for? I'll be raising babies until about 46 years old (20 years), and then I'll be getting ready to die - unless I have other options than a kidney transplant or dialysis. Those won't work for me.
And a stay-at-home mom, growing up, was the last thing I wanted to be. I thought it was so tragic. You give up everything - my mom gave up everything - to raise kids. What was the point of life before kids? It's not like you can use any of that knowledge (at least I wouldn't be able to) in raising kids. Other than "Don't do this, or you could die in the following ways...." I also know CPR and First aid, but that's not much.
But life doesn't turn out the way you want it to most of the time. It would be so intersting/sad if the girl who grew up needing a career to define her, wanted to adopt black babies, and be single most of her life turned out to not only marry at barely 21 years old, but never finished school, and raised 5 kids. It seems my life is going that way though. And maybe being a parent is all I could ever do successfully anyway.
But I didn't know. I guess I was just holding it off until we were ready. But what is ready? And when would we get there? What if we miss the window? What if I suddenly develop high blood pressure? No babies after that. Too risky for my taste. I'm under good insurance now, it would be hard to get that kind of insurance for a good price after age 26, when Obamacare is no longer enforced.
Ugh. Anyway...
Then one of my best friends got pregnant with her third child. She's doing well for herself. 3 already, and I haven't got 1 yet! For some reason, I was SO excited for her. I've never been that excited for any baby. Then I pictured us with a baby. We can handle it. They somehow handle 2 right now, and they're about to get a 3rd!
Maybe I could work while Stephen raises the baby at home/goes to school?
My mental health is getting better. I think it would be good to have a baby while I know I could probably mentally handle one...
Geez. I just don't know. And then you read articles like this, and think you've been a total slacker: https://www.lds.org/general-conference/2011/10/children?lang=eng#16-PD50029123_000_2030
The only thing I think Stephen is concerned about is money. I want to be sealed first, of course, but my main concern is whether or not to have babies in the first place!
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