I did speak to the genetic counselor who did receive the results. But it was a stressful phone call during which I mostly cried. She told me she was going to email me the summery letter she would be turning in about the case. Due to confidentiality I would have to set up a password to view it. Super. I didn't open it that night because I was, wounded, for lack of a better term, and we were very busy that weekend. When I finally did try to open it, hotmail told me it had a virus and wouldn't let me. I'm not sure if it was the computer, the browser I used, internet connection, whatever. I leave a message explaining the issue and she says she'll resend it and also send a hard copy. I'm able to get into the 2nd copy she emailed, but either it went awry, this computer hates me or I'm a complete fucking idiot (probably that one) when it comes to this kind of shit because I couldn't open the links.
On friday my FiL informs us our mailbox has been broken into and hopefully we didn't have anything important coming. I don't usually get mail unless I've ordered something so I was annoyed (I didn't want to give up the p.o. box for this very reason, people are assholes and when there's a mailbox at the bottom of a half mile long driveway with no houses in sight they'll break into your shit.) but not very concerned. It wasn't until sunday that I remembered I was actually expecting mail and I was just heartbroken. I mean not that I still don't have the results, I will get them eventually, they exist, just that some stranger was reading about my dead son, I was feeling almost violated I guess.
I call her again, and babble about the universe obviously not wanting me to have this information, but that I'm going to continue to persevere and could she please send the hard copy to my BiL's p.o. box, I'm very sorry blah blah. Also, is this just the her summery letter or the autopsy results themselves? She calls me back and says she hadn't gotten around to it yet so strangers are not reading about my dead son's results. Which, oh my god I'm so relieved. Except you guys of course. But you don't count. :) She will be sending her letter today, along with the actual results.
OK. It's your move universe.
I also received a phone call while I was in the shower from my normal doctor, saying he had received the results (for fucks sake, is he rubbing it in?) and a recommendation that we should talk about, please call him back. I figured he wanted to make sure we were on the same page that if I get knocked up I go to him till 10ish weeks then go for an ultra sound with the speciality doctor so I call him back. It turns out he mostly wanted to offer condolences about the shitty ass news I'd received about the fucked up odds of me having another healthy kid.
I'm paraphrasing here.
Really I think he was unsure if HE was supposed to give me these results, he wanted make sure I'd been informed as well, and that I was aware of the diagnosis. So when I told him I did know he didn't really know how to proceed because it totally sucks ass. Now remember how I bitched about him being all head patty and cheerleader and we'll get them next time about me being knocked up again? Remind me, should I do that again that this is much much worse.
He asked if my plans had changed, how I would feel about another pregnancy, (my response was it'd be a very stressful time, to which he agreed it most definitely would be) and let me know they'd be there for me. He said he was sorry and all the other stuff. Which was very very sweet.
I got off the phone and couldn't even cry, I could barely breathe. There was an elephant sized rock of despair, and maybe panic, crushing my chest and throat. It took a few minutes but I talked myself out of the breath into a paper bag feeling with the fact that the phone call changed nothing. I knew all of this information before. He offered no new facts, no worse statistics, he just hammered home that the ones I have are indeed nothing to celebrate. Once the gray started to clear from my eyesight I went and got G up from her nap and cuddled with her, playing with her toes until I felt better.
They're so long, I call them her finger toes. She can move them almost independently, they're very expressive, always wiggling. She certainly didn't get her feet from me.
Anyway. I have yet to write the email to my family, I still have every intention of doing so, I would just like to read the facts first so I can present them the best way possible. I feel bad I'm taking so long after I've initially heard from the counselor, but I'd like to be as informed as possible. What's a few more days, (weeks months....) right?
I did end up downloading the period app, no word on who received it with me, and it already has given me information that surprised me. I've kept pretty good track since January, and according to that my cycle is on average 27 days long, not the 28 I've always assumed it was, (I do think it used to be, and that this is a change since losing Little M.) and that it varies quite a bit more than I thought. I was early this last month, and I've been late a few others. I'll be keeping track and see where it leads me. My fertile days are marked by a pretty flower. Being a girl is interesting to say the least.

It official: the universe is being a dick about this.
ReplyDeleteYou can always order those ovulation test strips since ovulation can occur pretty much any damn time it wants to- the halfway mark is (as so many things with girl parts) merely a suggestion. This way you can pee on a test EVERY SINGLE MORNING, not just on the days you should be testing for pregnancy. Oh fun!
Right?! What the fuck universe?!
DeleteI did notice the day I thought I'd ovulate and the day it said I'd ovulate are different, I might consider going that route.
When you get an email you can open, just freaking forward it to your family and don't check your email or answer your phone for awhile. I am super helpful, I know, but I do know how to get rid of people. ;)
ReplyDeleteIf you want to forward it to me, I'll try to open it and cut and paste without reading it and send it in a message to you. No guarantees I won't peek a little, but I'd try very hard.
What is with these people not getting around to doing shit regarding these results? Seriously.
Shit, maybe I'll do that, see if you have better luck opening things. I wouldn't care if you looked, it is what it is.
DeleteI just love you. Hard. xoxo
ReplyDeleteThanks. Love you too.
DeleteOh A. I'm so sorry. I can't imagine facing those kinds of odds. It's so fucking unfair that you have to go through this.
ReplyDeleteAbiding with you.
The universe is oozing lunacy in your direction, but it is about time for it to direct it toward someone else~I'm hoping, anyway.
ReplyDeleteI'm working a tidal wave of indignation about this on your behalf right now.