Our elephant: Does she or doesn’t she?

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the infamous too-small-but-it-has-elephants sleeper

Hannah loves elephants. Or maybe more accurately, I love them for her. One of my dumbest baby purchases was an elephant sleeper that she was only small enough for her to wear a couple time. I crammed the poor girl in the

thing…because of the elephants (and the cute ruffles on the butt)! Our friend Jess, a fellow OIer, sent her an adorable elephant and it watches over Hannah from the foot of her bassinet. My connection to elephants has a secret twist. It originates from the GIANT (but unspoken) elephant that sometimes occupies whatever room or space Hannah and I are visiting.

The elephant’s been visiting me long before Hannah joined me-in the concerned look of strangers who’d say, “Congratulations!” with their mouth but something completely different with their face. In the worries of a few family members who’d ask every question BUT the one they wanted the answer to the most, “Does she have it too?” Some people acknowledge the elephant-even if briefly. My nearly 90-year-old grandmother’s* first response to my “I’m pregnant” announcement was a quiet statement more to herself, “I hope it doesn’t get that OI in it.” She never spoke of it again, but I do admire her honesty in stating the worry.

There are lighter moments though. The sometimes ridiculous nature of strangers has given me the opportunity to laugh at the elephant a few times. When my mom and I accompanied Hannah to an ultrasound to check out her hips a couple weeks after her birth, the receptionist just kept repeating, “She’s SO healthy…..” “She’s SO healthy….” I eventually started wondering if maybe she thought we were there for the Urgent Care Clinic located next door. So I said, “Oh-she’s not sick. We’re just here to make sure her hips are ok.” She continued, “But she’s so healthy!?” I really think the woman would have been less astonished if Hannah had sprouted a unicorn horn from her head at that very moment.elephant-room1

The elephant popped out again yesterday as I ventured to Kohl’s for some back-to-work shopping for me. The woman checking us out asked the obligatory baby questions, “What’s her name? How old? etc. etc.” and then she said, “Wow-she’s SO big. She must have been SO big for your belly………” She then paused waiting for me to explain that of course I hadn’t actually given birth to Hannah. She must’ve been delivered by gnomes. Sometimes I let these awkward moments continue and other times I save the person with an explanation to the obvious question that the person’s not brave enough to ask. I let this woman simmer until FINALLY she said, “So did you have her the traditional way?” Because I don’t generally discuss such details with checkout staff, I said, “Yep.”

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Sleepy pose with Hannah's elephant from Jess

It’s not only strangers. I’ve also experienced another person with Osteogenesis Imperfecta ask me, “Did you make her the old-fashioned way?” As opposed to the new modern baby-makin approach!? Most of the time, I do have to smile. Our elephant is a jokester. Sometimes it can hurt though because OI or not, my Hannah is PERFECT. She’s amazing and even if she had that unicorn horn, I’d see nothing in the world “wrong” with her. I never want the giant elephant’s shadow to block any piece of her awesomeness. While these people’s minds are boggled that she’s healthy and happy, it’s frustrating that they don’t realize that kids with disabilities are too.

Our elephant’s amazing versatile too. There’s really no place he won’t go. He also shows up online, mostly through questions asked via private message but a few early photo comments to her pictures would have been more accurately worded as, “So does she or does she not have OI?” The truth is: I haven’t kept it a secret. But I also haven’t made enormous announcements as if it’s THE most important tidbit to be known about Hannah….because it’s not.

I can’t always effectively tell the elephant to scram. He represents our world’s continued insecurities with even talking about some things related to disability. In my own little corner of the web though, I can do my best. It’s an understandable and fair question, especially given the high likelihood that Hannah would have OI. There’s nothing wrong with wondering. It’s only bothersome when it feels like a giant looming question about something that is shameful.

Answering the Elephant

From as early as my very first few ultrasounds to as recent as today, Hannah shows no signs of Osteogenesis Imperfecta. She’s above average on all her growth charts, has no bowing, and no fractures. We know from genetic testing that she does not have WheelerDad’s Type IV OI. Testing for my Type V OI though was inconclusive. Type V is very rare and the gene thought to cause it hasn’t yet been identified. Because children with OI can inherit a vastly different severity of the condition from their parents, there’s a minimal chance that Hannah could potentially have an exceptionally mild case of OI. For that reason, she’s still monitored by the OI Clinic located in our Children’s Hospital. We’ve refused a bone biopsy because I see no reason for an invasive and painful test with no benefits. In a couple years, we’ll be able to x-ray her arms to see if she has the arm bowing that’s characteristic of Type V. It is sometimes difficult not to know with 100% certainty. The question, “Has she fractured?” crossed my mind when she cried a couple weeks ago after her shots. I know all new parents have worries though. Ours just have a distinctive flavor. Our plan is to watch, but not wait. With or without OI, she’s enjoying the love of the OI community. It’s a healthy challenge to learn to be at ease with uncertainty. When she looks back at her story someday, I hope she interprets the elephant as a sign that we have always fully accepted and entirely loved her with OR without a disability.

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18 Responses

18 comments

  1. Ida M. says:

    Hi Kara! I really like your blog, I have been reading it from the start and you are a great writer. I admire your courage and strength. I have OI too, and I know that when time comes, I will have these problems too. I feel like the elephant has been around always. Like when we visit our relatives and they ask my pretty younger sister “Do you have boyfriend yet?” And nobody ever asks me that. :) But that’s life, and life is great. Hannah is a cute little girl, with or without OI!

    • Kara says:

      That is another excellent example Ida! I have those memories too. It can be frustrating and sad, but I think the unified experience is something that brings us together. We’re definitely not all just alike simply because we have OI but we share more in common than just our genes!

  2. Karen Putz says:

    Kara, I’m so happy for you becoming a mom! So behind with my reading. :)

    I could relate to this because that’s the question we received when David was born, “Is he deaf?” After all three kids turned out to have the gene, the next question was… “Will you have more kids knowing they’ll be deaf?”

    My answer was always, “Heck yeah, if we could afford more.” LOL

    Hannah is a real cutie and that picture just makes me want to fly over to your house and scoop her up. Enjoy– because they grow up tooooo darn fast!

    Then there’s another famous question…

    “When are you having another one?” LOL

    • Kara says:

      Still waiting to hear that one Karen-at least from most folks! I had to laugh today at church because I heard two entirely different people say, “They’ve got their hands full!” LOL!
      I like your answer to the elephant questions though and will have to tuck that into my reserves.

  3. “my Hannah is PERFECT. She’s amazing and even if she had that unicorn horn, I’d see nothing in the world “wrong” with her.”

    I love this. And you’re so right. Hannah will have her own problems because that’s what it means to be human. We’re all born into these bodies – each with their own flaws and troubles. It’s our job to figure out how to live in them.

    To a certain extent, Hannah and her brother to come, will have the same disability you and AA had – They’ll be physically different from their parents. In that way, you will all have a lot in common.

    Thanks for sharing your journey! :)

    • Kara says:

      Thanks Claudia:) I shared your comment (and your history of a psychic sense) with Adam and he was a bit freaked out by the “brother to come” part-lol!
      And you’re onto something really neat about our shared differences within the family. I hadn’t thought of that.

  4. Cheryl says:

    Hannah could still have any number of disabilities, like dyslexia. And so what if she does? If it were me thats how I’d answer everyone. And so could any of those people’s children/grandchildren.

    As far as makin a baby the old fashioned way, there’s always the turkey baster way (I’m serious). As a person who also has a physical disability I’m glad that the other OIer was open enough to ask questions, especially since like me, it doesnt seem like this person is at your stage yet. I believe in being prepared way in advance, and as there is no instruction manual on how to parent with a physical disability, as you’ve pointed out, asking questions to successful parents, or even just people in long term relationships, is the best way to learn. I’ve never doubted I could have kids but the number of “kinks” to strategize around sometimes seems insurmountable. Then you brought up “landing pads” and I thought “WOW! DUH! That would solve tons of worry around my also not having free hands. And so EASY…”

    • Kara says:

      You’re right Cheryl-there’s so much about her personality and functioning at every level that we still have yet to learn about.
      And I’m familiar (if only vaguely!) with the range of techniques out there to conceive. I suspect this particular individual was asking whether we’d tried the approach of selective implantation (to eliminate the likelihood of passing on OI). Like you, I don’t mind questions but it’s all in the approach. I generally don’t ask a TOTAL stranger questions about sexuality/reproduction. Even if I pose a question online that could be sensitive, I at least begin with some small talk! There are social skills that should be observed on and offline if you want the answer you seek. I think our community (of people with disabilities) needs to respect those social rules/boundaries just as people without disabilities do.
      I’m glad the landing pads ideas connected with you. It’s really been helpful for us-Now to see what happens when she starts moving around more!

  5. Mama Birdie says:

    The fact is the elephant in the room makes it hard to do any kind of “cleaning”. Our world is not a one size fits all from the moment I met you! I love you and your elephant blog and the family you and Adam created.

  6. Kara says:

    We love you too….and we all still find “One Size Fits All” anything pretty amusing!

  7. Hey Kara, I thought this was an awesome post. I also went through things like this. I noticed other people were sharing their stories so I thought I would tell you mine too.
    For years, I could not conceive (because of my weight), and everyone was always asking me, “when are you going to have kids?” or when I would be playing with their kids, they said “you should have a baby of your own.” It really broke my heart, because sometimes that was all I wanted, was a baby!
    Then after I lost weight it was even worse… I finally had to go through invetro to get my first child. After she was born they would say, “when are you going to have another one?” When my son was conceived (naturally, by accident, because I didn’t think I could get pregnant), people would say, “did you plan on getting pregnant so soon?” Usually I would tell them the story, sometimes if I was upset I would just tell them “YES I DID.” Or they would ask me if he was conceived naturally or with invetro, like our first.
    After my son was born, we had 2 infants 11 months apart. Everyone always had a comment, and I also heard (every time we went out), “they sure have their hands full!” or I here now days (since they have been 1 and 2) “are they twins?”
    I have even had a lady tell me my daughter (at 6 months old) looked like she had downs syndrome. Everyone always tells me how big my son is (he is a chubby 2 year old). I just want to shake these people. I don’t want my son to think he is any different from anyone else, he is a beautiful boy, who is fine just the way he is!!
    Anyway, lol, my point to all this is, I understand what you are saying. I agree that people should not be so intrusive, or maybe sometimes should not think it is their right or responsibility to probe us for information, or tell us their opinion.

  8. Kara, it’s not what you say but how you say it that gives me goosebumps! You’re an amazing writer and I’m so thankful that you share your talent with us!

    Also thrilled that we have a shared love of elephants. My love of them came from the movie Dumbo. There he was, this adorable baby elephant who everyone loved until he sneezed and revealed his “imperfect” ears. I believe that i’ve been able to fly just like Dumbo because of what “imperfection” has given me and I’m sure a ton of people can relate. :)

  9. Jessie says:

    Thank you for your honesty. I am 13 weeks along and am only beginning to discover the eleaphant in people’s voices when they learn I am pregnant. Your post gives me hope! Thanks.

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  12. Ashley Mott says:

    Hi Kara,

    I love this blog post, because all of us with OI or those of us with another disability or noticeable difference always have to deal with elephants.

    My elephant has always been people deciding from the time I was a child myself that I would never have children and imparting that idea to others on my behalf.

    I have Type IV OI like your husband, and thus far in my adult life, it has presented very mildly. As I near the end of my time in college (which will happen in two years right after I turn 30), I am contemplating whether I will or will not have a child and know if I choose to that no one in my family will understand why since they decided a long time ago I would not and because I didn’t have one right away when I married 8 years ago.

    In a way dealing with the expectations and ideas of others about your OI can be as exhausting as the disorder that we all learn to live with.

    Thank you for sharing your story and being a light!

    ~Ashley

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