Differently-able

by Dani


Recently on one of the online groups I am part of the topic came up of our children with radial aplasia/dysplasia being referred to as handicapped. To be honest, I really, really dislike the term. It's not that it is a bad word or degrading or a slur or anything like that in and of itself.  I just don't see the word as applying to my children. And, what's more, that I don't want THEM to see it as applying.

I fell pretty much the same about the term "disabled". Again, it doesn't fit Lil'Bug at all. Not at all. There is NOTHING this child can not do with his two hands that any "normal" handed child could do. There is no "dis" about him. I suppose a case could be made that Dragonfly fits the definition of disabled as there are some things she can not yet do as a result of her congenital issues and perhaps she will never be able to do those things.  But who am I to limit her?

So in that spirit, I would like to propose a new term that I will refer to them as... not "dis"-able but differently-able. I plan on sharing on this blog regularly things they are able to do but maybe doing it differently. I say it a lot in real life and I'm going to say it now here...

My kiddos have hands that look different, but there is nothing "wrong" with them. They can do anything anyone else can; they just might do it differently.


3 Months Update

by Dani


Dragonfly has been with us for three months already!! How is that even possible??

She is doing really, really well. A few things of note. She is over her fear of the animals. She doesn't seem to care that much for the dog (but doesn't avoid him either), but she loves to chase the cats around the house! lol

She continues to learn new words and is starting to repeat phrases. She chatters none stop although most of it is baby gibberish.

About three weeks ago she decided to really try this walking thing. As I've mentioned, she COULD walk when she came to us, but she just never really did. Whatever happened to make the switch flip,  flip it did. She is getting stronger and stronger and now walks all over the house and rarely scoots or crawls as before. We are still hoping to have PT take a look at her as something seems off in her gait that might have been the root of the delay in walking, but we are so excited she is doing so well with no intervention!

And in one more huge piece of good news, we seem to have found a medical management for Dragonfly's GI issues we have battled since China. The pediatric GI doctor is fairly certain that she does not have Hirschsprung's disease which was the working diagnosis in China (this BTW was the surprise SN that we were hit with in China without any forewarning).  So no more tests and no surgery! YAY!

She is such a busy little girl and a joy to have around! Here is the little Miss with her baby dolls all tucked in beside her. :)


From the Archives: A Dose of Honesty

by Dani


Originally Published January 21, 2012.

They say that blogs generally only show a glimpse of the total story and often glaze over uncomfortable or embarrassing details. This is certainly the case for this blog as somethings are simply too personal to share when one is not blogging anonymously. This was a concession I made when I chose to use our names and pictures and open this blog to those who know us in real life. But I do try to always be truthful with what I DO post and try to paint as accurate a picture of adoption and the adoption process as I can. In that spirit, today I'm going to talk about one of those more uncomfortable/embarrassing things in the hope that it will help those who are in the adoption process.

Sept 13th 2011, I walked into a large room in Zhengzhou, Henan and waited with my husband and 3 other families for the little boy who I had been watching grow up in pictures over the last 9 months. I knew only a little about him. I knew he was tiny. I knew he was delayed and not walking at 20 months. But this was also not my first rodeo as they say. I'd been here before. I'd adopted before. I'd adopted delayed children before. I'd read page upon page and hour upon hours worth of blog posts, forums, and books about institutionalization, adoption trauma, special needs, delays, etc. etc. etc. I knew what to expect. But despite all that knowledge, despite knowing what institutionalize and traumatized children look like, it was all I could do not to freak out when they
placed my child in my arms. Seriously, I had to fight down the panic. The child I was handled was nothing like I expected. He was not a toddler in any sense other then his age. He was not just delayed. He was SEVERELY delayed. Forget walking! He either couldn't or wouldn't sit up without support. His head was horribly misshapen. He response to being overstimulated was to throw his head back and stair at the ceiling, eyes roaming around. Yes, all those things can certainly be the result of institutionalization and trauma as they have turned out to be. I knew that. I did. Yet, I felt pure panic in those first few moments.

And what if I had traveled alone and had no support? What if I didn't realize that I could be looking at only institutionalized delays? Or what if I didn't even know what institutionalized delays were? Then again, in those first few days, how can you really tell the difference between expected delays and true underlying issues?  What if I had not committed in my heart on January 24th, 2011 that THIS child was my son for better or worse? I don't know, but maybe I would have been so afraid that I would have walked away from one of the most amazing little boys on this plant. I really don't know... but I do know that even with all the prep in the world, you can still find yourself feeling panic when faced with the reality of your new child in a government office in China.


"I want to be beautiful."

by Dani


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It's the day every parent of a child with a visible birth defect dreads. No matter how often you've told them how beautiful they are. No matter how much you have affirmed that they are precious and beloved to you and to God. No matter that they know they are created in His image and perfect in His sight. No matter, the day comes that someone calls them ugly or makes fun of their difference and the nasty little lies stick.

My confident little Ladybug got hit. She is beautiful and precious and perfect, and she used to know it. But a little liar told her that her nose was "funny" and "ugly" and laughed at her. I'm not sure exactly who it was. It may have actually been more then one child. She hasn't told me who. And it really doesn't matter "who". The words hurt. They cut. They left Ladybug self-conscious of her nose. Watching her face fall when someone mentions her nose even to say something as benign as "you've got something on your nose", is enough to break this mommy's heart.

"I want the doctor to make me beautiful" she says. So this summer Ladybug will have her first cleft related surgery with us. Her wonderful surgeon will be doing a lip revision to adjust the angle of her nostril so that it does not pull as flat as it does now. I really hope that she is pleased with the surgery. But most of all I hope she can heard the many voices around her trying to talk over the lies... "you are already so beautiful, Ladybug!  So precious.... so loved!"

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Lil' Bug Home 9 Months

by Dani


Well... actually he's been home almost 10 months since I'm once again behind on blogging but, hey, we'll pretend okay?

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Our little man is doing SOOOOO well! He fits into our family beautiful and we all love him to bits. 

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Attachment/bonding on his part is going well, but as is common with toddler adoption there is still work to do. He prefers mom and dad to others, but still self-comforts more then we'd like to see. Now that we've had to start saying "no" and correcting him on behaviors, we're seeing the toddler tantrums, but they seem to be of the typical toddler variety and don't last long.

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Personality wise he continues to be a happy little man except when he hears "no". :)  He also has times of frustration related to not being able to tell us what he wants. I'm sure those will lessen as his language expands. Mostly he think of himself as a big boy! :)

Developmentally... well, he is a very, very different little boy then the one placed in my arms 10 months ago. He walks... no, RUNS all over.

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He jumps and climbs. Really the only gross motor skill he has not mastered for his age is walking down stairs. Yes, you can tell that he's not been doing those things the length of time that a 2.5 yr old should have been but he has come SOOO far!
He is into. every. thing!

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It is a common sight to see him walking through the house carrying the step stool from the bathroom so he can reach something or other. Like the light switch. Like the silverware drawer! Like the TV!! Like the stove top!!! Like the deadbolt on the outside door!!!! I have to keep all of my eyes on this one all of the time!!

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He's a smart little cookie too! If the step stool is unavailable, he thinks up other ways to do what he wants. Case in point.

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Fine motor wise, this boy continues to blow us away! So far we have found nothing that he can not do! He eats with a spoon and fork. He can drink from an open cup. He can draw in a circle or scribble a line. He can open doors. He can peel stickers off a sheet. He can climb into and buckle his booster seat. He can use a mouse on the desk top computer including click and dragging... OH, yes, he can!! Gadget Boy lives up to his name!!

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There is one area where he is still playing catch up. Language. Right now he is getting speech therapy 2 times a week. And we are seeing stead improvement. He is doing a lot of talking where it is obvious that he is saying something or thinks he is. We catch what sounds like a phrase here or there and have moments were we say "did he just say ___?" But most of those things are not really consistent or understandable and many of his words are only understandable to us. However he is spontaneously using between 30-50 words that we understand and repeating after us many more. For example, he says "bye, night night, sissy,
Snoopy, cow, kitty, chicken, cheese, pizza, cookie, egg, hat, airplane, eye, book, puzzle, cracker, shoe, diaper, poo-poo, bottle, bubble, one, two, three, move, moon, hot, and help". He can point to and/or name around 6 body parts. He can identify many animals and say their sounds. He is starting to learn his colors and count. He continues to love songs and can sing quite a few.

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As far as his hands go, at this point we are continuing with bracing his left hand at night to stretch it and maintain his mobility with it. His doctors are not recommending surgery for the left hand beyond removal of the vestigial thumb from the index finger.  His is making his own "thumb" out of the index finger as he stretches the space between the fingers with use. We have also agreed to hold off on the pollicization surgery to create a thumb on the right hand as there is no functional benefit at this time. We may eventually do that surgery... or maybe not.

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