Monday, February 26, 2007

Independent

"Is this for your baby?"

That's what the person behind the desk asked me when I handed her my form. Maybe she saw that it was from a genetic counselor's office and so assumed that genetics testing = baby. I don't know. For a split second I thought about saying "yes," because sort of it is for my baby -- the one I don't yet have -- but mostly I just wanted to slap her in the face.

"Oh, no, for you," she corrected herself before I had a chance to. Glad we got that cleared up.

* * * * *

Maybe it's just me, but nothing makes me feel more alone in this world than going to a doctor's office by myself. I want to be taken there by a concerned parent, or bringing a child I'm caring for. Or at least going with a family member. Or, well, not going at all.

But here we are, me and my independent life. Me and my job as an independent contractor; me and my independent health insurance; me and my independent trip to the genetics department.

The entire visit was one big exercise in self-control. I had to prepare myself to ignore all emotional cues and be brave. Focus. I told myself to listen. Learn. Absorb everything the counselor said so I could understand all the possibilities. Who knows how this will go. No sense in getting upset before you know anything.

* * * * *

I met with the counselor who was very kind and non-condescending. I asked a lot of questions and was given a lot of information. I recounted my family history and the deaths of my parents and difficulties my nephew had that led the specialists to test for Fragile-X so early. I tried to sound matter-of-fact and clinical.

I smiled when I talked about my family, and my parents' respective personalities. Only once did I have to work hard not to cry, when the counselor had to take a phone call and I had nothing to do but sit there and process where I was, and why.

But she came back quickly and I regained control.

In the end, she told me I could get my blood taken that day and that they'd get the results in about two weeks and how did I want to get the news? I didn't like that question one bit, but it wasn't her fault for asking.

I told her the phone would be fine, I just want to know.

Then she asked me if I thought I was a carrier.

I didn't like that question, either. Especially after she told me the likelihood that I was carrying this "defect" was 75%. But I was honest.

I told her no, I didn't actually think I was. But I added that probably everyone says that.

* * * *

I got to the blood-drawing center and had to take a number. The room was overflowing with people who were mostly elderly and frail and sick, and I pushed hard, really hard, to not feel anything. Especially not alone.

I tried to focus on going through the motions. Heh. Take a number. Like I'm buying chicken at Whole Foods.

I tried to read the magazines. I called Ish and discussed with him what I'd learned so far, but also dinner plans. La la la.

And then they called my number and that's when the woman asked if the test was for me or my baby. Which is an innocent enough mistake, except I had spent all morning (and actually, the 8+ weeks I'd waited to get this appointment) working hard to distance myself from the implications. Facts were one thing, and I could speak in percentiles and likelihoods. But the reality, that having a "normal" child would be even more difficult than I already anticipated, is almost too much to bear, and I could hear my answers screaming in my head...

I DON'T HAVE A BABY AND MAYBE I NEVER WILL AND WHO SAID ANYTHING ABOUT A BABY??? I'M A 31 YEAR OLD DIVORCEE WHO LIVES ALONE WITH CATS AND IS DATING A MARRIED MAN BECAUSE I AM SO INDEPENDENT! SEE? WHY? DO YOU HAVE A BABY? OH? BECAUSE TO BE HONEST WITH YOU, I WAS JUST SITTING AROUND FEELING SO BORED WITH ALL THIS TERRIFIC INDEPENDNCE THAT I THOUGHT TODAY WOULD BE A GREAT DAY TO COME IN AND SEE IF I HAVE A MENTAL RETARDATION GENE HANGING AROUND IN ME. YOU KNOW, JUST IN CASE. MAYBE NEXT WEEK I'LL COME BACK AND WE CAN TEST FOR SYPHILLIS. YEAH? OOH, AND WHILE WE'RE AT IT, WHY NOT THROW IN A HALF A POUND OF GROUND BEEF!?!?

I didn't actually say any of that and mostly just got in another line, waiting to get pricked so I could bleed into a vial and get on with my day.

* * * *

Two weeks later, I hadn't heard anything so I called and left a message.

And when the counselor called back, she was very straightforward about telling me that yes, I am a pre-mutation carrier. We discussed next steps.

I didn't cry.

35 comments:

  1. Holy... :(
    Hug? Would a hug help? How about an ear? Or, I suppose, a pair of eyeballs - becuase we are, afterall, bloggers, and so we write things down. Sometimes. And sometimes it's nice to just know that others are out there reading the things we write down.

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  2. To quote my late father, when I was diagnosed with breast cancer at the age of 33, "Well, ain't that the shits?"

    I'm so sorry that the news didn't turn out the way you wanted it, but knowledge is power, and I applaud you for going forth and gaining that knowledge. I know your head has to be spinning right about now, but when things slow down and you are able to think clearly I'm sure you will truly realize that knowing the facts is truly a good thing.

    Drink some wine, hug your kittys and your Ish. Listen to some sad, sad Jackson Browne music, and then pick yourself up by your bootstraps. (and it IS ok to cry...)

    IIF hugs to you...

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  3. I'm so sorry! Knowing is so much better than not, and you're brave to have gone and gotten tested. I don't know you, not in person, anyway, but I just want to reach out and give you a huge hug.

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  4. Sending a big hug. It sucks going to the doctor on your own.
    I admire your courage. Hang in there.
    Suzie

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  5. oh man. that really IS the shits.

    also sending an IIH (invisible internet hug).

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  6. I have been silently reading your blog for over a year now. I was introduced to it by my old college pal who writes 'Embrace Mediocrity'. For this whole time, I have been reading and laughing and crying over your revealing writing. Your post today made me finally leave you a note.
    I am 28, married, and dying to have a baby NOW. I am still childless while I wait for my brilliant and dear husband to finish his PhD in a field he is very passionate about, biomedical research. He is adopted, and so, when we finally have a baby, we will go through this step that you have just taken. Even if you have a person and a plan that you think you can count on to build your family with, I'm finding that the waiting is harder than I ever imagined.
    People like my husband are working very diligently on understanding every disorder under the sun, and are making amazing progress with gene therapies. If our president would do his part by getting off his stupid uniformed ass regarding stem cell research, they could really kick some ass... but I digress.
    What I really want to say is how brave I think you are. All of these advances in science are meaningless unless people are willing to do scary things like this, and arm themselves with every piece of information that they can. Because, really, that is the only ammunition that counts for anything.
    Keep it up! Being brave, that is, oh, and the writing. Because, even if we only come out of the woodwork once a year, you have some really devoted IIFs.
    Hugs to you.
    BG in Gainesville, FL

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  7. I am sorry to hear that you are a carrier. Nothing I can say will make you feel better, but I am sure you know you did the right thing by taking the steps to find out the truth.

    More hugs to you from way over here.

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  8. BG's hubby is wicked smart. :)

    It kind of makes you wonder, is it better to know or not? And, I think, for the most part, it is better to know. At least you have some way of preparing for things.

    More hugs for you and Ish and your sis and her hubby and the baby.

    lovelovelove

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  9. Oh, K. I don't know what to say. I want to give you a huge hug right now. Be prepared to be tackled at your concert if I don't see you before then. You will be hugged. (I might also hump your leg for good measure. I make no promises, though.)

    ((HUG))

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  10. You are amazing and incredibly brave to take this step. I've read your posts where you make fun of your own irresponsibility--you just did the most intelligent and responsible thing a person can do before having kids. I'm sorry the news wasn't better. With this kind of integrity you'd make a fantastic mother.

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  11. {{{{HUGS}}}} from a Central Illinois IIF.

    Kristy, you are in my thoughts.

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  12. ::big hug::

    I too have some genetic issues that I chose not to take the chance of passing on to a baby. As much as I've always wanted a child of my own.. and believe me.. I wanted one bad.. to pass on my legacy and my father's heritage.. but I'd never be able to forgive myself for passing on some of the physical things that have haunted me all of my life... I'd never forgive myself if I caused another person to have to live thru that.

    But some days it's SO hard..... especially right now, but then again.. look at the world today.. it's hard to even THINK about bringing a new baby into it.

    Hang in there girl.. and give yourself a little extra love today.

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  13. When my two sons with autism (PDD - mild variety) were very young, I often wondered if I should have had them or not. Was it worth it - it was so hard because toddlerhood is hard enough and when you have two whirling dervishes running through the house and experts who give you a bleak outlook, it's hard not to question whether or not I should have had them. Had there been a test - had I taken it before they were born, I probably wouldn't have had them.

    They are older now - still tough but things are easier. They talk. They are in their own worlds but they often let me in - something the experts said probably wouldn't happen. The hard work has borne some fruit. I was contemplating your post as I put my 5 year old on the bus - off to regular kindergarten - something the "experts" said wouldn't happen.

    If the choice were my two sons as they are, or no children at all, ever - I pick my beautiful, misundersttod children.

    Of course, there will always be part of me that will wonder what life with typical children would have been like.

    But life without them? Too, too empty for me to even consider.

    I'm not sure what sort of mutation you are up against here - but please don't make lasting decisions about your future based on a few tests. Science marches forward... things are changing quickly.

    As my husband often points out when I am feeling overwhelmed, even the perfect baby at birth isn't a guarentee that the child will grow up without issues. Parents sometimes lose their perfect babies in adolescence to substance abuse. Accidents. Cancer. A host of things can go wrong at any point - to any of us.

    I wish you peace, whatever you decide. Having children is hard, no matter what - I am not sure if you are better off knowing what you know or not. But I do hope whatever you decide brings you peace.

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  14. Just delurking to give a big virtual hug. I have been reading your blog for over a year, and have been so impressed.

    My sister and I were both adopted (we're in our twenties now) and it's frightening to meet with a doctor and tell them that I have no family history. It makes your life feel like one big unknown.

    But your post is making me put on my big girl pants and consider taking more control.

    Thank you.
    ~KL in DC

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  15. What an amazing post.

    I am facing similar issues, even though I am single now, I would love to have children someday but the thought of passing on the disease I have, which appears to be genetically linked, is truly scary. I really admire your courage. Lots if hugs to you.

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  16. Well this sucks big Moby Dick. :(

    I wish I had something profound to say to make you feel better but I don't think anything I say could work.

    Just know that we are all here for you.

    Keep your chin and your boobs up,
    Tex

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  17. I think that going to get that testing, to face that music before you're even sure you'll have to someday, was incredibly brave and strong, even though maybe you didn't feel brave and strong. (People always tell you you're brave and strong when you feel scared and vulnerable, I find.) My thoughts are with you, and I wish you luck and peace.

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  18. There are a million little unwanted babies out there in the world who need mothers. Not all that we are is genetic, nurture over nature is a real thing. You may yet be a mother one day. (Hugs)

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  19. Another first-time poster, and another hug-donation.

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  20. add me to the list of first time commenters.
    My heart breaks for my image of you sitting alone in a waiting room and perhaps alone getting that phone call.
    I'm sorry you had to do it alone, but by writing about it you are no longer alone.. across the miles we all are with you.
    xoxo
    JC

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  21. Maybe you should have looked at them and said, "What are you - retarded?"

    So sorry about the bad humor. But I have nothing else....

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  22. This is probably going to make me very unpopular.

    I'm sorry that you have discovered that you are a 'carrier' of Fragile X. But...

    So what!?

    What does this information really tell you? Just that you have a little bit of insight into the possibilities of a yet-to-be-conceived child. You have a little bit of an edge in knowing what you MIGHT get.

    Non-carriers can still have autistic children. Or children with Down's Syndrome, or a myriad of other genetic anomalies. Or they could be born genetically "normal" (whatever that is) and end up with an umbilical cord around their neck that impairs them for life. Or they could be born perfectly healthy and suffer SIDS or step in front of a school bus.

    SO FUCKING WHAT?

    You can't let the fear of statistics and possibilities and what-ifs guide your life.

    Raising any child is hard, but by all accounts the most rewarding thing you will ever do.

    Denying a child, fragile X or not the opportunity to have a breezy elegant mother who will love him/her fiercely would be the tragedy here.

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  23. I hope you don't think this is too shallow, because I am a stranger who is really feeling very sorry for you at this moment.

    But this image just popped into my head, and I wanted to share it with you.

    A little chinese girl about 4 years old, with a blonde, zaftig mom.

    It's a possibility.

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  24. I have two boys with fx syndrome, and a girl without. Did not know I was a carrier when the boys were born, but chanced it to have a third (and was hoping for a non-fx, it's a long story...) We went to a geneticist when the baby was 10 weeks gestational--and he said, yea we could test invitro, and make our decision from that. And then he turned around and showed us a wall of very thick books, and said. These are all the genetic disorders we know about. We can test for fx, but it doesn't mean the child is free from anything else. So what did this mean? Well, we tested anyway, we were lucky...and since then, I've decided that I'm lucky for ALL my kids. Even my special boys that are challenging are mine, and wonderful. Yes there are struggles, and we are on a different path than we had imagined many years ago, there are wonderful moments of happiness too...

    And saying all that, I know how it feels to be diagnosed a carrier. I wish you the best.

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  25. You have touched so many people with your writing. I am a Black woman living in Harlem and you probably wouldn't realize how much I relate to your thoughts and worries, and quirks. I always read your blog and rarely comment, but I love it. I don't know you, but I think that maybe you have something different to give this world. Maybe you will touch other children's lives like you have touched ours.

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  26. So many people have said important and eloquent things to you. I have nothing different to add to what's been said.

    I'd just like to add that because you have the courage to share the things happy, sad, scary, and exhilarating that happen in your life, you are not alone. We may not be in your living room physically, but we are here for you virtually. *hugs*

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  27. I have a daughter that was born with many severe congenital heart defects. We didn't know she would be, nor did we know my husband was probably prone to carry some because of his family's health history. Had we known, we would have still tried for a baby. She was born completely unhealthy and the lovely surgeons at Stanford fixed her up.

    She's a thriving almost 5-year old. Just wanted to share our story because 1) had we known, we would have made that jump and 2) had we not known we would have made that jump.

    Hugs from Austin, Tx

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  28. Big hugs to you.

    You might not have cried, but I did.

    Love, love, love to you.

    ReplyDelete
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