Ahhhh, a breather, dare I say it. (Insert knock on plastic keyboard surround). Dare I risk saying: A Week With Not One Doctor's Appointment. That's a new thing. It's been over 3 months since that's happened. Now, I realize that there are people who live that life, or worse, for years. And I know we'll end up there again, but I'm thankful for this breather. Big Girl is back in school now, and is happy. Her holes from her skin biopsies are bothering her, but are healing. She has access to a new study, and therefore new options now. Peanut is waiting for Begindergarten to start, and excited for that too.
I'm a year older as of last week. The air is starting to turn just a tad cool in the morning, when we walk to school. It feels lovely. It feels fresh. Odd that as the growing season starts to think about winding down, I feel like everything *could* start to bloom in life...potential seems to fill the air.
I don't know if this is a mid-life crisis brought on as I move upwards towards 40, "deflating" since the stress of the last months has eased off, or if this is something more positive...I'm feeling need for change. Maybe it's just all the House Hunters International I've been watching, but it feels deeper than that.
I need to travel.
I need to change the house.
I need to change...me.
I'll be honest. I've been trying to lose 20 pounds, for years. I look in the mirror and I'm not happy. But I'm also not happy with how I present myself. Once upon a time I never left the house sans makeup. I'm glad I'm less uptight than that now. But I've fallen into the SAHM uniform of jeans and tshirts. My beautiful jewelry sits mostly unworn in the box. Most of my shoes go unworn. (I'm not a Vogue-reading fashionista, but I do love my shoes.) I've got my intellectual-in-training (read: nerdy bookhound) glasses, but everything else is blah. I come across to myself as blah. So how does everyone else see me? There's lots of cool shit rattling around inside my brain...but it stays there mostly.
I found myself more and more speaking of kids, school, errands, to do lists, and parenting my kids as waaaay too much of my communication load. I hate that. I'm so much smarter and more interesting than just that.
Last year, before we renovated, we looked at moving. I hated the idea of leaving my house, my beautiful, tons-of-work-poured-into-it home. Now, I could move for the right house, or the right opportunity. New. Adventure. Excitement. I am actually excited at the thought when emails from the real estate agent hit my inbox.
We hit 15 years of marriage together this past summer. A feat I'm proud of, rolling thru the rocky times that were partially brought on by infertility, and getting thru over double the length of marriage that my parents ever were able to attain, and still going. But at the same time, I had probably, for myself, the hardest summer of feeling a lack of communication between myself and my husband. Topics came up that had us at odds, and I've never ever had it where discussions were shut down on me without being treated as an equal, worthy of discussion merely because I was the partner that was speaking. And that has me still smarting. Partially cause I don't do well with that, period, partially because his parents are masters at that technique and any and all disfunction in that family unit stems from it, and is my biggest source of irritation. Therefore, I'm very vigilent as to if I ever see P starting to slide into that territory. Partially because the topic at hand sits very deep in my heart, no matter how I try to purge it from there. Do I fear for our marriage in any way? Hell No. Has it changed? Yes. Is that bad? No. Good? No. Just different? Yes. And that takes an adjustment.
Peanut will be gone 4 mornings a week this school year. Next year, it's K for her, then I've got both girls gone most of the time. Now I can look at what I'm doing with my life - I'll be chef/chauffeur/teacher/mom most of the time, but for the first time in 3+ years, I will have devoted time that I can be "me". Yeah, a lot of that will be errands and cleaning and such, but I'll have time, if I want it, to devote to me and what I want out of life. And I realize now that I have not done enough of that...nothing since Big Girl came home, not very much in all the years Peanut has been home, and actually not very much from the time we put in our paperwork for Peanut back in 2005.
So the question is: What do I do with myself? As I see it, I have a few options:
1. Embrace the new me. Come to terms with it. A few pounds I don't want, feeling like less than a *star* in life, coming to terms with suburban contentment, but potentially mediocrity. Do I say that with disdain? A smidge. But that's my point...not that I have to settle, but maybe I have to readjust my viewpoints, and realize the good I do have and be content with that...that there is nothing negative about it at all.
2. Revamp, restyle, recreate. Keep the cool glasses. Lose the weight. Tell the hairstylist to take the new haircut further...devote a few mornings a week to *me*. Find time to scrapbook, excercise, read, or better yet, learn cello, get my master gardner certification or get back to horse back riding, like I've wanted to. Push the "buy" button on that shopping cart with the cool new purse and the funky sweater with the polka dots and the crisp white - needing ironing - nicely fitting dress shirt to go under it. And most importantly, not feel guilty for making life for me too. The kids are my life, but they don't need to have my 24/7 adoration...they are of the age that if I want to read a book, I should be able to be left alone for a wee bit. Find more time for P and I too.
3. Go bat shit over the top. New hair color, lose the weight, get a tattoo, take a job, move the household to a new house with a new feel - ultra clean lined contemporary maybe. I'm guessing this is probably not the best idea, especially if I got a tattoo before losing the weight I want to lose. Oh, and make that house sitting on the cliff overlooking a valley or water of a far off place.
Either way, I have to learn to live with, or change the issues deep in my heart. That's gonna be the hard part.
But as to which option...I think 3 gets kicked to the curb cause P has an awesome job and loves it, and the girls would kill me if I moved them. Door number 1 is a good lesson in appreciation of the fine details of life, and realizing it's the little stuff that makes the biggest hill when it's piled together. Door number 2 though is a lesson in setting a goal and achieving it, for not settling for anything but everything for yourself and your loved ones. Both admirable lessons, but which is the one for me?
Tuesday, August 30, 2011
Friday, August 12, 2011
THIS could be your story...
I've wanted to post this, in a complete post, for awhile, but I've hesitiated...I believe in SN adoptions. I totally believe in older child adoptions. I believe in IA.
I honestly believe, above a doubt, that you can love any child you are placed with. I don't believe in fate...I believe it's what we make it. A lot of people would argue with me, and I don't want to argue the point...it's how I feel.
But I ALSO believe that there are so many people who want a child, who got, well, fucked, by the shut down of much of IA in the world, so many that have dodgy agencies (cause most of them are, I dare say) that some really don't want to know what CAN happen...does happen, and have gone into SN adoption, at best, semi-prepared. Period. I believe that most agencies don't facilitate gathering of information, and some people really want to just go into this process starry eyed at the idea of a new child, which I understand. They want to play the odds, and roll the dice that it comes out in their favor, and chances are that it will. But it's foolish.
So I don't want to dissuade people by our story. But I do want to educate them, and it's a fine edged sword...and I've decided to sum it all up because in the end, I *think* it'll all turn out ok...so there's that moral to the story...
What We Were Told
We were told that Big Girl had limb differences of the left upper and left lower limb. We were told she was smart, articulate, outgoing, and had no other issues. We were not told limb lengths, and of course she was 8.5. The name given to the difference was universally dismissed by the Drs. It was not agenesis. They were growing, but were smaller.
What We Thought We Were Walking Into
We figured between the more advanced age and the lack of limb measurements that that was why she sat on the list for 3 years. We had three doctors review it. We even had my FIL the fancy neurologist look at it. We came to the assumption that either this was a random occurrance of skeletal abnormalities, probably due to environmental factors, or, more likely, we were going to get a diagnosis of minor CP when she was brought home. We knew she'd be delayed in behaviors, the language would be a huge issue, all those things that we knew would be big hurdles like customs, social mores, language, family integration etc and worked on learning about that...a LOT. All the Drs felt this was basically a non-issue...the limb difference was minimal from the photos, and everything looked great. She was on the shorter side, but hey, on the charts.
What We Saw When We Got To China
She came to us much as we figured. Clean, quiet, introverted, scared, inquisitive, and quickly changing to curiosity and exploration mode. She wanted to know everything. She had a basic learning of the English language - most alphabet letters were known, some basic words. She proudly showed off her math skills. She played quite well with our 3.5 year old...too well. She really does NOT act like the now-9 year old she is. And honestly, that has taken some getting used to. A lot, on our parts, actually.
We also saw spotting on her skin, on her forearms and calves. Ehhh, dry skin. Our proverbial Titantic Iceberg...but we had no idea at the time...we figured dry skin. The SWI told us "a lot of the kids" had had this start happening, about the time that the weather started changing. We did lotions etc. Her limbs were as we expected...except it was the wrong leg. And she had some thin spots in her scalp. One was under her pony tail, which seemed to have never been removed, so we got that. Or so we thought.
December to Late May
Shortly after we came home, she started the Great Doctor Tour. Ahhh, eczema, glasses for the bad vision we found in Guangzhou. Oh, a slight lazy eye, no problem, prisms in the lenses of the glasses.
Then we went in to see the orthopaedic. Yeah, one leg shorter, one arm shorter. Not neurological. Oh, and she has scoliosis. And a dislocated elbow. And her one finger is shorter. And about 3 little other quirks of a skeletal nature. Genetics are thrown in there. Ok...research. Dr never calls back. We "fire" her in March, go see a specialist and he says no genetics, probably environmental, and no big deal, surgery when she's 14 ish, dont' touch the dislocated elbow, she's fine.
The eczema doesn't go away. We see a dermatologist. He says ichtyosis, gives a cream. It works, we move on. Ok, a small bump in the road, seriously, this is it?! No issues. I even looked at a file for a boy waiting for adoption with ichtyosis because this was so not an issue...
I *think* I see a mark on my daughter's sternum. Could it be a scar? No...they wouldn't hide that...I keep looking at it. It's so light, I think I'm crazy.
Big Girl starts to aquire language...rapidly. Crazy rapidly. She settles in, starts to go to school in January, becomes part of our family rather quickly. She just...does. She acts very juevinile. She has NO logic. No "common sense". Was never ever taught anything but rote memorization. And she's damn good at that. She becomes a clinging shadow, and we work thru that. She gives love freely and openly. Her transistion to being our daughter only has one rough patch, when sister has her birthday and the jealousy is just too much for this little one to bear. It's what finally pushes her over the edge for a week, but she sulks, and keeps the acting out to minor harrassments and mayhem. All in all, we're overjoyed at how easy this has been. I had a rough time about 3 months home, being the go between for language, etc etc...everything is very time consuming...every bit of homework has to be handheld, everything explained in 2 languages, teaching her all those things like how to shower properly, wipe properly, brush her teeth properly (which none of these things were taught!) etc that we thought we wouldn't have to teach her. But, again, hey, we do it and move on.
Late May
Something happens. We don't know what. Big Girl ends up in convenient care with an all over body rash. We get antibiotics, ointments, follow up appts.
And they keep coming. And so does the condition. And the ichtyosis gets horrible. And everything gets horrible. And it doesn't get better. We start going to the Drs almost daily. No one knows what is going on. We start doing 3-5 Dr appts a week. We start to climb up the Doctor chain. Life becomes Dr appts. We do light treatments and more potions.
We finally, late July, get to a wonderful Dr at Children's Memorial. She takes one look at my daughter and says "wow, your daughter is quite an interesting case." You never ever want to hear that about your kid.
We got thru cycles. We get it under control, and then it flares again. We go around and around. I have a BOX of creams and lotions. Some help, most don't, some set us 10 steps back. The kid takes nightly bleach baths. She is a puzzle of cream application. Any trauma to her skin can set off a chain reaction. The daily maintenance of her skin becomes a huge task.
The wonderful Dr comes back with a name...Conradi-Hunermann. Look it up. There's not a lot of info. We're on the cutting edge of rare disorders. And she's atypical Conradi for some reason. That we still don't know - the how and the why. The interesting thing about Conradi? The ichtyosis comes in patterns...when she's flared, her chest looks like the patterns of a butterfly wing. Think about that - a rash type condition that is symmetrical across the two halves of a body. That line I saw? The kid's midline stays clear no matter what.
Limb differences, alopecia of the scalp, ichtyosis...main indicators of Conradi...
And what did we find yesterday? She has the most common of other indicators of Conradi...cataracts, in both eyes. And strasbismus. And Ambloypa (I know I don't have that spelled right)...and we don't know if we can correct those at this advanced age either...the cataracts will grow at some rate, and she will need those removed.
The Moral Of The Story
There is no way that the SWI didn't know about this. She says she never had it like this in China, but she talks of her foster mother scrubbing the ichtyosis off her skin. Chances are she presented quite obviously in her first years of life. Chances are almost absolutely that China did know some of this...that it was purposefully left out of her file.
And when I started asking those questions of my contact in China, she disappeared. She won't answer emails. That speaks volumes to me...
We're lucky. we have damn good insurance. I don't work that much outside the home. This is hard. I worry constantly. I fear the next Drs appt. Thankfully this kid is as easy going as they come...she takes this with style and grace and does what we need willingly. She whines about another Dr, but from what we could have, who knows. I know she'll tire of her eye patching...but, for an almost-10 year old, I'm thankful she works with me so well on this. My Peanut is insanely jealous. She hates when Mamam leaves with Big Sister for another appt, she misses the extra time we had with each of them.
I would not change this for a kid that came as she presented in her file. I accept all these challenges willingly vs the potential behavior issues I've seen with many older adoptees. Especially with a little one in the house, omg, she's been wonderful with her. I'm grieving right now. I am mad at myself...what did I miss? What Dr should I have consulted? Why didn't someone catch this? Why couldn't we stop this bus of trauma from hitting her these last 3 months? Why did China hide this? I'm trying to focus on the good, that this doesn't preclude a "normal" life for her...but right now, I'm just tired. Tired from having to fight stupid Drs, cut lots of the "fun" out of life, tired of wondering *why, why, why*??
And the worst part is that I'm scared of wondering "What's next?"
This, my dear friends, is what can happen, and does happen. More than anyone wants to let you know. If you are ok with this, this worst case, or worse, then adopt SN. I would still, again, do it, one more time. But everyone should realize that it can turn out like this, even when the Doctors give you the big grin, the big thumbs up and say "no worries" over and over and over again. If we didn't have the resources: the really good insurance, the HSA account, the red headed stubborness, or the schedules that we can adapt to this schedule, our family would be in crisis right now. Absolutely. And that we are not... I am trying to be thankful for that every moment right now.
I honestly believe, above a doubt, that you can love any child you are placed with. I don't believe in fate...I believe it's what we make it. A lot of people would argue with me, and I don't want to argue the point...it's how I feel.
But I ALSO believe that there are so many people who want a child, who got, well, fucked, by the shut down of much of IA in the world, so many that have dodgy agencies (cause most of them are, I dare say) that some really don't want to know what CAN happen...does happen, and have gone into SN adoption, at best, semi-prepared. Period. I believe that most agencies don't facilitate gathering of information, and some people really want to just go into this process starry eyed at the idea of a new child, which I understand. They want to play the odds, and roll the dice that it comes out in their favor, and chances are that it will. But it's foolish.
So I don't want to dissuade people by our story. But I do want to educate them, and it's a fine edged sword...and I've decided to sum it all up because in the end, I *think* it'll all turn out ok...so there's that moral to the story...
What We Were Told
We were told that Big Girl had limb differences of the left upper and left lower limb. We were told she was smart, articulate, outgoing, and had no other issues. We were not told limb lengths, and of course she was 8.5. The name given to the difference was universally dismissed by the Drs. It was not agenesis. They were growing, but were smaller.
What We Thought We Were Walking Into
We figured between the more advanced age and the lack of limb measurements that that was why she sat on the list for 3 years. We had three doctors review it. We even had my FIL the fancy neurologist look at it. We came to the assumption that either this was a random occurrance of skeletal abnormalities, probably due to environmental factors, or, more likely, we were going to get a diagnosis of minor CP when she was brought home. We knew she'd be delayed in behaviors, the language would be a huge issue, all those things that we knew would be big hurdles like customs, social mores, language, family integration etc and worked on learning about that...a LOT. All the Drs felt this was basically a non-issue...the limb difference was minimal from the photos, and everything looked great. She was on the shorter side, but hey, on the charts.
What We Saw When We Got To China
She came to us much as we figured. Clean, quiet, introverted, scared, inquisitive, and quickly changing to curiosity and exploration mode. She wanted to know everything. She had a basic learning of the English language - most alphabet letters were known, some basic words. She proudly showed off her math skills. She played quite well with our 3.5 year old...too well. She really does NOT act like the now-9 year old she is. And honestly, that has taken some getting used to. A lot, on our parts, actually.
We also saw spotting on her skin, on her forearms and calves. Ehhh, dry skin. Our proverbial Titantic Iceberg...but we had no idea at the time...we figured dry skin. The SWI told us "a lot of the kids" had had this start happening, about the time that the weather started changing. We did lotions etc. Her limbs were as we expected...except it was the wrong leg. And she had some thin spots in her scalp. One was under her pony tail, which seemed to have never been removed, so we got that. Or so we thought.
December to Late May
Shortly after we came home, she started the Great Doctor Tour. Ahhh, eczema, glasses for the bad vision we found in Guangzhou. Oh, a slight lazy eye, no problem, prisms in the lenses of the glasses.
Then we went in to see the orthopaedic. Yeah, one leg shorter, one arm shorter. Not neurological. Oh, and she has scoliosis. And a dislocated elbow. And her one finger is shorter. And about 3 little other quirks of a skeletal nature. Genetics are thrown in there. Ok...research. Dr never calls back. We "fire" her in March, go see a specialist and he says no genetics, probably environmental, and no big deal, surgery when she's 14 ish, dont' touch the dislocated elbow, she's fine.
The eczema doesn't go away. We see a dermatologist. He says ichtyosis, gives a cream. It works, we move on. Ok, a small bump in the road, seriously, this is it?! No issues. I even looked at a file for a boy waiting for adoption with ichtyosis because this was so not an issue...
I *think* I see a mark on my daughter's sternum. Could it be a scar? No...they wouldn't hide that...I keep looking at it. It's so light, I think I'm crazy.
Big Girl starts to aquire language...rapidly. Crazy rapidly. She settles in, starts to go to school in January, becomes part of our family rather quickly. She just...does. She acts very juevinile. She has NO logic. No "common sense". Was never ever taught anything but rote memorization. And she's damn good at that. She becomes a clinging shadow, and we work thru that. She gives love freely and openly. Her transistion to being our daughter only has one rough patch, when sister has her birthday and the jealousy is just too much for this little one to bear. It's what finally pushes her over the edge for a week, but she sulks, and keeps the acting out to minor harrassments and mayhem. All in all, we're overjoyed at how easy this has been. I had a rough time about 3 months home, being the go between for language, etc etc...everything is very time consuming...every bit of homework has to be handheld, everything explained in 2 languages, teaching her all those things like how to shower properly, wipe properly, brush her teeth properly (which none of these things were taught!) etc that we thought we wouldn't have to teach her. But, again, hey, we do it and move on.
Late May
Something happens. We don't know what. Big Girl ends up in convenient care with an all over body rash. We get antibiotics, ointments, follow up appts.
And they keep coming. And so does the condition. And the ichtyosis gets horrible. And everything gets horrible. And it doesn't get better. We start going to the Drs almost daily. No one knows what is going on. We start doing 3-5 Dr appts a week. We start to climb up the Doctor chain. Life becomes Dr appts. We do light treatments and more potions.
We finally, late July, get to a wonderful Dr at Children's Memorial. She takes one look at my daughter and says "wow, your daughter is quite an interesting case." You never ever want to hear that about your kid.
We got thru cycles. We get it under control, and then it flares again. We go around and around. I have a BOX of creams and lotions. Some help, most don't, some set us 10 steps back. The kid takes nightly bleach baths. She is a puzzle of cream application. Any trauma to her skin can set off a chain reaction. The daily maintenance of her skin becomes a huge task.
The wonderful Dr comes back with a name...Conradi-Hunermann. Look it up. There's not a lot of info. We're on the cutting edge of rare disorders. And she's atypical Conradi for some reason. That we still don't know - the how and the why. The interesting thing about Conradi? The ichtyosis comes in patterns...when she's flared, her chest looks like the patterns of a butterfly wing. Think about that - a rash type condition that is symmetrical across the two halves of a body. That line I saw? The kid's midline stays clear no matter what.
Limb differences, alopecia of the scalp, ichtyosis...main indicators of Conradi...
And what did we find yesterday? She has the most common of other indicators of Conradi...cataracts, in both eyes. And strasbismus. And Ambloypa (I know I don't have that spelled right)...and we don't know if we can correct those at this advanced age either...the cataracts will grow at some rate, and she will need those removed.
The Moral Of The Story
There is no way that the SWI didn't know about this. She says she never had it like this in China, but she talks of her foster mother scrubbing the ichtyosis off her skin. Chances are she presented quite obviously in her first years of life. Chances are almost absolutely that China did know some of this...that it was purposefully left out of her file.
And when I started asking those questions of my contact in China, she disappeared. She won't answer emails. That speaks volumes to me...
We're lucky. we have damn good insurance. I don't work that much outside the home. This is hard. I worry constantly. I fear the next Drs appt. Thankfully this kid is as easy going as they come...she takes this with style and grace and does what we need willingly. She whines about another Dr, but from what we could have, who knows. I know she'll tire of her eye patching...but, for an almost-10 year old, I'm thankful she works with me so well on this. My Peanut is insanely jealous. She hates when Mamam leaves with Big Sister for another appt, she misses the extra time we had with each of them.
I would not change this for a kid that came as she presented in her file. I accept all these challenges willingly vs the potential behavior issues I've seen with many older adoptees. Especially with a little one in the house, omg, she's been wonderful with her. I'm grieving right now. I am mad at myself...what did I miss? What Dr should I have consulted? Why didn't someone catch this? Why couldn't we stop this bus of trauma from hitting her these last 3 months? Why did China hide this? I'm trying to focus on the good, that this doesn't preclude a "normal" life for her...but right now, I'm just tired. Tired from having to fight stupid Drs, cut lots of the "fun" out of life, tired of wondering *why, why, why*??
And the worst part is that I'm scared of wondering "What's next?"
This, my dear friends, is what can happen, and does happen. More than anyone wants to let you know. If you are ok with this, this worst case, or worse, then adopt SN. I would still, again, do it, one more time. But everyone should realize that it can turn out like this, even when the Doctors give you the big grin, the big thumbs up and say "no worries" over and over and over again. If we didn't have the resources: the really good insurance, the HSA account, the red headed stubborness, or the schedules that we can adapt to this schedule, our family would be in crisis right now. Absolutely. And that we are not... I am trying to be thankful for that every moment right now.
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