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.
11 comments:
Your honesty is refreshing. Scary as hell, but refreshing nonetheless. If I had read your post 9 months ago, I'm not sure I would have pursued our adoption (we're waiting for LOA). But then again, if I had been told what we would be facing with our bio children, I can't say that I would have rushed into motherhood at all. I'm so sorry this is the hand your daughter was dealt -- no child deserves what she's enduring. And I'm furious at the thought that things were deliberately hidden (at worst) or overlooked (at "best"). I feel like I have lots more to say, but don't want to clog your comments. Wishing you and your family all the best, and thank you again.
Great post. Our files from China didn't add up to the kid, either. This I learned during our 1st adoption and still went back two more times. Luckily, we're 3 for 3! All is good.... but you just never know and there ARE too many people jumping in without the complete picture.
I also am so sorry your having a difficult time. I'm the mother of two big bio kids, 4.5 year old and another 2.5 year old waiting for us in China. I know what your saying. I often JOKE and say they give you more information on a CAR than you get on these kids!! I also don't know what her exact special needs may be. She is missing a breastbone and has capillary hemangioma on her face. I believe, and it's okay if you don't believe this, that our children no matter how we get them, bio or adopted, are given to us from God, and He knows what he's doing! Hang in there!
I am so sorry you and your daughter are having to go through this. :( But, I also feel (perhaps naively) that maybe China DIDN'T know about her full condition? I mean, if you went to as many doctors as it sounds like, it seems it took quite awhile for it to be diagnosed? I'm not saying they didn't know she had a skin issue but it sounds like it appeared to be a simple dry skin/ezcema type thing?? I also know with our first daughter, her heart defect was found by "accident" here in the good ole USA. It sounds like you are doing everything possible for your daughter and she has been blessed by that!!
I'm sorry for all of your family's troubles. I'm sorry that the agencies and the "powers that be" are less than forthcoming with vital information. I'm proud of you for handling all of this with determination and honesty.
Should you find you need more or different, please remember that I do have trusted folks at the U of C and at U of I. Lastly, I will offer a bit of assvice. I would have Big Girl tested for food sensitivities and/or allergies. Since we radically change our kids diets when they come home and the skin is the largest waste disposal organ in the body, it may help to know which foods may aggravate or perhaps even trigger flares. You can do Meridian Stress testing which is non-invasive, based on Chinese medicine, and pretty darn accurate. I've used it. If you need help finding a practitioner, let me know.
Thank you for your important story. Your daughter sounds like a fighter- and a great kid! She's lucky to have you- and you're lucky to have her!
I did feel compelled to write a bit more, however. First I want to say that I completely and totally agree 100% that it would be completely reprehensible if her condition was known and covered up by China. You deserved to have as complete a medical history as could be provided.
Second, I need to add in something about my own experience as a mother. I have not adopted, although I have longed to do so for years. Part of why I have not is because of the medical care that my biological children need- and which is primarily provided by my DH- who is not at a point that he could consider adding to his daily load.
We have three children- now 14, 12 and 9. My youngest two have type 1 diabetes- both diagnosed at age 3. (For those not familiar with the condition, children with type 1 are completely insulin dependent and have shots or wear insulin pumps. It is not an easy condition to manage.( They also both have vision issues which are corrected with glasses. My middle child
as a smaller child had some sensory issues. My eldest has cyclical vomiting syndrome (luckily a fairly mild case as it has only occurred quarter-annually since birth.) She also has extreme eczema to the point where we have to treat her scalp with oil regularly to keep the skin from cracking open (which has happened- not pleasant.) But- all three are also fun, bright and loving kids. I wouldn't trade them for the world.
My point here is simply that you never know how things will turn out when you become parents. Honestly, if I had somehow "known" about these diagnoses before my kids were conceived, I'm not sure what I would have done. But I can't imagine life without them- just as you can't imagine life without your daughter.
I know that this is not the point of your story, and as indicated above, I COMPLETELY agree that all medical issues should be in the records so that proper assessments can be made. If you have an option, I do also completely agree that parents should be cognizant of their own limitations in parenting and completely honest in assessing needs when contemplating SN adoption.
At the end of the day- however- I do believe that all parenting is a leap of faith.
I wish you and your family the very best! THANKS for your story.
Thank you for posting your story! I am another RQer (adptmama:-).
Your story sounds so much like my own! We fully believe Sidney's medical file was purposefully incomplete. Much like you, I will take the easy emotional healing for the additional medical visits! She is missing her fibula and has a limb length difference. This was not disclosed in her file. Only her fingers. She only has three on each hand. A doctor friend of ours indicated it looked shorter...but why and how much? It was one of those moments we were vested emotionally and took the risk. And in return, I have experienced so much love and joy! She is only 3, so completely different than your experience in some ways but so much the same in others.
And medical coverage - hallelujah! Tom (my husband) and I have had this conversation a million times! I know not everyone is so blessed. Look forward to "talking" with you on RQ soon!
Adoption is a risk, having a baby is a risk. Its hard we don't always get the whole truth from the adopting countries. My son, I knew was deaf, but what they did not mention was his large head, and other issues. He was 5 at adoption, probably really 7 or 8 but looked to be 3. His movements were odd, but I knew I could not leave him there. Turns out he had untreated hydrocpephalus (water on the brain). This caused brain damage which caused him to have a low IQ and issues with beahvior, often aggresive, other times sweet. As a single Mom Ihave been unable to work for the past 7 years, and just had to place him a group home for developmentaly delayed kids. My heartsit broken, he is still my son, but I have to work and it became to dangerous to have him home, as he needs to be watched 24/7 or he will get into things, or fight wtih me or his older brother.
I have a lot of grief, that he can't have the life I had hoped for him. At this point I am way past blaming china, thats not the point for me. There are SN and then there are SN. They are demanding and there is not a lot of help out there if your child has a special need that involves behavior problems. Support you thought you had vanishes. its a tough and lonely road.
We went through something very similiar with a child adopted last year. We were not prepared for a large lump at the base of her spine with a hairy patch. We were not prepared for the deformed head and mental problems that were not mentioned in the file. The only thing mentioned in the file was blind in one eye and 2 missing toes. All of the things that were not mentioned were obvious. We have a son with limb differences so we were prepared for more than we were told. Just not as much as was with held. Thanks for being honest. We do not have this child but we did bring her home. We knew it was more than we could handle but did find another family. It is hard when you know more can be wrong but it is something so far off than what you thought.
This should be required reading for any China adoption, any IA. Thanks for putting it out there so honestly, and not presenting all ponies and rainbows. Seriously, you should forward it to some agencies! If you'd like me to do that for you, let me know. ~debk
I concur. You know China keeps things undocumented. When we got home, our pediatrician took one look at our new 13 yr old's gait and said, something is not right. I had noticed she limped a little when we walked too much, and a few other things, but not as many as she pointed out at the exam. I was concerned it would mean surgery, etc. I was not concerned about the costs or anything (we also have awesome insurance), I was concerned how it would impact her. We got referred to a specialty hospital. It made me realize that there was NOTHING in her file (at all) since she was 2 yrs old. And I mean N-O-T-H-I-N-G. It had never dawned on me until that moment. Certainly someone had to have noticed that she walked funny...ran weird...her upper body was stiff. She even told me (via the Chinese speaking pediatrician) that her teacher did notice. They even took her to the hospital and took x-rays. Yet NOTHING was in her file. Of course nothing was wrong.
After 2 months of me wondering what the outcome was going to be--preparing myself for her to have surgery, the specialist said that there was nothing they could do. It was not major and did not require surgery. While she did not have physical "restricts" per say, but is unable to do cross country or track (she doesn't know that, though). The doctor was AMAZING. But, you can't tell me that China didn't have documented what her issue was when they figured it out. There was no reason why they couldn't have...or they shouldn't have.
But, having had a bio kid with a fatal SN, you never know what you are going to get. You just have to go in it with your eyes wide open knowing that there are just no guarantees in life that all will be roses. That's for sure.
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