Thursday, July 19, 2012

potential special needs diagnoses for our Zoe girl

The diagnoses we're working through for our girl are ASD and PVL.

(No, not Autism Spectrum Disorder... the other ASD: Atrial Septal Defect. And PVL? That's periventricular leukomalacia. Mad props to me for being able to spell that without help this time!)


So what does that mean? Well, in simplest terms, she has small hole-like areas of damage in her brain and a hole in her heart, if her medical records from Taiwan are accurate (and we have no reason to question them at this point). Neither seem to be causing any immediate medical problems, but we may be looking at therapies and surgeries and more specialist appointments to give her the best outcomes possible, and we'll keep y'all posted as we walk that path.

A sweet woman at church on Sunday - a woman who I had seen before but never spoken to in length - oohed and aahed over Zoe. She asked her name, and her county, and the number of days we had been home. Every question was genuine and well-intentioned, if not always tactful.

And then the big question came: And she's healthy?

We've had Zoe for less than a week, but it's been long enough for me to catch on that this sweet woman thought she knew the answer. Zoe is breathtakingly beautiful and loves watching the world around her. People have actually said, "Are you sure she has special needs? She looks too pretty," as if disability and beauty can't coexist. I could have just said, "yes, she's healthy," like she expected, and that answer would have been partially honest, because she is so much healthier now than she was when we met her in the cramped Taiwanese hospital prayer room exact one week ago.

I forced the full truth, as we know it, out instead: "Well, she was a preemie, and MRIs shows areas of brain injury, and her heart might have a defect. We're sorting through all of that."

She kept saying, "WOW," over and over, and then added, "and you took all that on?"

I didn't know what to say, so I just nodded.

To us, we're getting Zoe. I guess that means we're taking all that - ASD and PVL and any other alphabet soup that comes our way - on. We do, after all, have a cardiology appointment on the books (August 2) and a neurology one a'coming (update: it's August 2 as well), but that's just the reality of getting to parent our precious baby girl.

Getting to. It's a privilege.

We're not superheroes or martyrs or saviors in doing this. We may have been obedient in responding to God's call for us to adopt, but we are disobedient in a hundred different ways each day. The rough day we had a couple days ago was more the result of our sin than the challenges of transition. Yesterday, I ate the remnants of a bag of Doritos for breakfast and washed it down with a Diet Coke. I've been opting to watch Dawson's Creek on Netflix instead of unpacking, so most of our bags are still piled on the floor of our bedroom. We returned home last Thursday morning, and I've only had two showers - maybe three? - since then. (It's even grosser when you consider that our big kids have had a stomach bug this week, so try not to think about that.) Earlier today, I considered going to Wal-Mart to buy more underwear so that I could put off the laundry for another day. Later today, as I rest in bed with my turn with the stomach bug, I'll be catching up on my trashy TV by watching The Bachelorette: The Men Tell All on Hulu (and still not unpacking).

In other words, we're not perfect. 

We're just riding this wild ride God set us on in parenting our two homegrown kiddos and our one Taiwanese treasure. Thanks for continuing to pray for us.

19 comments:

  1. Again you just sound like a mom with a new baby - don't beat yourself up about that :)

    as for "taking it all on" its what you would have done for your biological children had you known before they were born something was going to be "wrong." But you do deserve props for following what you believe to be your path even if it includes lots of doctor visits and whatever else could come your way.

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    1. It regularly amazes me how much of this transition is just new-baby-added-to-the-family and not adoption-related.

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  2. Just gotta say it...she REALLY is BREATHTAKINGLY BEAUTIFUL!! :o) God has special plans for her and I know he will bless you and guide you as her Mommy.

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  3. As they say here in Taiwan, "Jia-you." Literal translation -- "add more oil/gas." I have no idea why that particular expression, but it is a useful phrase to have on hand which is used for general encouragement and cheering on. If it helps any, you're not nearly behind on getting things done as I am. I seriously did my first post-maternity assessment of my wardrobe (instead of throwing on the first thing I could find to complement whatever part of yesterday's wardrobe I slept in) just recently and I feel lucky if I get in more than two showers a week, among other things (though my TV shows of choice tend more towards the crime-solving ones -- most recently it was the British show MI-5 downloaded from iTunes).

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    1. I'm usually a crime show junkie too, but my husband loves those as well, so I save those to watch with him and gravitate toward the girlie fluff TV when it's just me. :) NCIS is my first choice.

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    2. NCIS is way up there for me, too. I even got my mom into it. My husband and brother, however, I think would both classify it as girlie fluff, though. Tony, in particular, bugs my husband, but then again, my husband's British so I think it's in part too American for him. (My brother despises their technological talk as being ridiculous, but I don't know enough about technology to care.)

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  4. Ok... as your friend, I have to tell you that while this post is sweet and wonderful and adorable and I love it... I am also sniggering at you for admitting to watching Dawson's Creek. (Yep, note that I'm not laughing at you for watching the Bachelorette... that's because I already knew you watched that one). Because that's just the kind of friend I am.

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    1. Girl, I judged DC as awful when I was in college, leaving my dorm room every time the girls on the hall gathered there to watch. But now? Well, consider my occasional foray into Christian fiction... sometimes something awful hits the spot. Yes, I'm weird like that. :)

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  5. I love how honest you are in your post and about your experience so far. Keep that up! The best response to any people, especially people with good intentions, is an honest response...gentle, loving and honest responses. They might not always understand, but at least they'll know you're honest. I've learned that over the 8 years I've been in the special needs community as a parent. I also wanted to mention that Aria, my 8 year old daughter, lives with a diagnosis of PVL as a result of her micro-preemie birth. That, in turn, has helped to cause a lot of other issues/diagnosis that also contributed to all of her multiple special needs. It has affected Aria in all areas with the exception of intellect & personality, but she is doing well considering. Hope you and yours continue to adjust comfortably and I hope you get to feeling better really soon! Thank you for sharing yourself & your family with us! :)

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    1. I agree. So many special needs and adoptive parents recommend snarky comments in response to the weird questions and comments you get with both. Truth is most people aren't meaning to be rude, so it doesn't help to respond with rudeness.

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  6. Such a beautiful picture! And, you may not feel like a hero - you are certainly Zoe's hero. And you handle it with such grace - keep being honest!
    Love

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    1. She's my little hero too. Even though the feeding battles have been hard, they show what a fighter she is. That's how she has managed to thrive despite her circumstances before now!

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  7. I love the way you are...so simple, just like you should be and something I can learn to be at times (I sometimes can go on and on about stuff, which makes no difference).Being a Mom is a privilege that God has granted us.Your doing great, keep up the good work friend!

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    1. Oh, I do my fair share of going on and on about stuff! :) Thanks for the encouragement.

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    1. This is my first time watching it, though I'm loving sweet memories associated with various songs from that time period. Right now, I'm about halfway through season two... Jen and Dawson are casting roles for their movie, Dawson's mom just told Joey that she's like a daughter to her, we just found out that Andi has some degree of mental illness as well, and Pacey just got his first A on a project.

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  9. Hi, I just stumbled across your blog and was wondering if you could share what adoption agency you used? My husband and I are prayerfully trying to figure out which country and agency we should look at, and Taiwan is one of three countries we've been considering right now. If you could post it, or email me, I'd really appreciate it! angelita.333@hotmail.com
    Thanks!
    Angel

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  10. Hi. I found your blog through Grafted In. I'm also a fellow adoptive and bio mom, 12 years into our journey. Great blessings, great heartache. I also live in NC, calling Greensboro. My son is actually in seminary in Wake Forest, NC. I blog at http://www.martysmusings.net if you ever have a moment to look around. God bless!

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