Posted by: mommytoo | August 8, 2010

reality bites

as i write, i’m debating whether i’m going to publish this post.  i write a lot of personal stuff on here, but there are some issues i’m not sure about.  blogging is a funny thing — some of my friends read, including people i rarely see and those i see frequently.  strangers, too, obviously, and somehow that can be easier.

several weeks ago i had some spotting/bleeding and went to the emergency room 2 separate times.  both times they established that everything was fine, baby measuring perfectly, great heartbeat.  the 2nd time, they told me i had something called a subchorionic hemorrhage, which in and of itself is benign, but can cause vaginal bleeding, which always has to be attended to, because it could also be caused by a miscarriage, obviously.  stressful.  at the time, i didn’t blog about it because it felt like a big deal.  now, not so much.

i had a follow-up ultrasound last week, to make sure the hemorrhage had cleared up, which it has.  at the same time, they did a full anatomy scan of the baby, who appears to be healthy in every major, important way.  however, he does not have fingers on his right hand.  he has a fully formed thumb, and a perfect left hand.  but on his right, his four fingers are either not there, or perhaps just very underdeveloped (meaning they won’t, obviously, develop).  at the time, the radiologist said that she did not know of – or couldn’t think of – any disease or disorders or syndromes that manifested in missing digits on one hand.  the other day, we met with a genetic counselor, had another full anatomy scan, and met with a big-deal genetics doctor, who did an amniocentesis.  he was very reassuring, and said that from his best guess (which is as good as it gets at this point), this is just a fluke, mostly likely not chromosomal or linked to anything larger.  the heart, kidneys, stomach, gall bladder, bladder, spine, brain, arms, legs, and feet all look healthy and normal.  which is huge.

now we wait.  in 2 weeks we should have the results of the amniocentesis, and in 4 weeks, i’ll have another ultrasound, which should really have been the one where we learned all of this.  if i hadn’t had the bleeding, i wouldn’t have had so many ultrasounds!

obviously, i am feeling a million different things, ranging from devastation to guilt to gratefulness.  at this point, it seems that i have another healthy baby.  this one is going to have a disability that will pose lots of challenges to our whole family.  when i go to sleep at night, that is my bottom line.  but when i wake up in the morning, the first things i think are not so pretty.  my best mantras involve the fact that yes, this child will have a disability, and it’s one everyone will be able to see.  that is a major loss, and really sad, and not easy for anyone.  and millions of kids have disabilities – affecting their bodies, their learning, their emotional well being – that no one can see.  this difference means physical limitations, and that is painful for me right now.  i hate that he will never really have the whole world as a possibility — there are some things, some jobs, for example, he simply won’t be able to do, in a world made for people with 10 fingers.   but what a lucky boy, to have two adoring parents, a wonderful big brother, 5 grandparents, aunts and uncles, friends and admirers.

oh, yes.  i said a BOY!  we are having another boy, and although i was wanting a girl, this crisis has put it all into perspective.  WHO CARES what the sex is?  somehow, having lived 34 years as a girl/woman, i believe this difference will be easier for a boy.  i also think nate will love having a brother.

that’s where i am right now.  d and i are both having lots of ups and downs, and sort of taking turns holding each other up.  i am now going to publish this post, having written it a few days ago.

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Responses

  1. He’s a lucky boy to be joining a family that loves him so much. I suspect he’ll wish at some point that he had ten fingers like everyone else, but those folks I’ve known with similar disabilities have grown up not wishing for anything different because it’s such a part of who they are. Who wants to be the same as everyone else anyhow? He won’t miss what he never had, so if you don’t make a big deal out of it, he won’t either. Congratulations on a healthy baby!

  2. Sorry that you’re having to deal with this. I agree that your little boy is joining a loving family, and will be very lucky.

  3. thank you for putting this out there and opening the door for support as you wade through so many thoughts and emotions.

    please know that so many people are rooting for you, for your growing, perfect son, and though he may lack in fingers, he will undoubtedly compensate with compassion.

    much much love.


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