Archive for October, 2012

Victoria has a family!!!

Monday, October 29th, 2012

Okay did you see my post below? Did you see Victoria’s picture in that heart image I made? Well today we’re celebrating! Today is wonderful! Today Victoria has a family!!!


Laelia is Victoria’s praying friend.

Laelia was student of the week a couple weeks ago and did a poster about herself. When it asked what she wished for (bottom right of poster), she wished every AMCer like her could have a mom and dad. We printed out their pictures and taped them to her poster.

In the bottom right you can see Victoria’s picture. Laelia prays for Victoria every single night.

When I told Laelia that Victoria had a family she screamed.

Then she asked if we could throw a party. :)

Love it!

The AMCers we left behind

Friday, October 19th, 2012

We brought our son home two months ago. While we were in the  orphanage visiting him one day, a little girl around five years old walked up to me. She was shy and had some obvious delays. She wore her blonde hair in long pig tails under a cloth bonnet. She was simply a doll. Her movements were slow and precise, like a princess. Or more likely due to slight CP. She always had a caretaker with her holding her hand. But this time, after a couple of weeks of seeing us, this time she got brave. She walked away from her distracted nanny and towards us while we blew bubbles for the boys. She knelt down on the blanket beside me. I smiled at her and said “previet.”    She smiled even bigger, scooted closer and whispered, “Mama?”

My heart broke. (I’m crying as I write this.) She reached out a hand and gently touched my knee. I could barely feel it. I choked on my words, “Nyet, baby, nyet.” I shook my head. She looked down and mumbled something, “*mumble mumble Mama? Papa?” She faced my husband with her head still down. I knew the phrase, “I am your mama,” (yet voy-a mama) in Russian, but wasn’t sure if adding a “nyet” (no) to that would make it “I’m not your mama,” or if I would get her hopes up. The weight of crushing this girl’s hopes left me mute. I said nothing.

She asked again, “Mama?” It was a bit desperate, a bit guarded. She started to pet my knee so tenderly and lovingly. Her nanny heard her that time and a string of chiding Russian flew out of that woman’s lips as she firmly took the girl’s arm and marched her away.

I have since looked for her, my little shy princess, but it doesn’t seem she’s available for adoption. Like many children there, her parents decided to keep her in the orphanage. She’s a social orphan. It’s a terrible, hopeless fate.

My friends have a similar story. They were in Ukraine the same time as us. They met a little girl who held their hands and asked for a Mama and Papa. Her need for parents was desperate. Thankfully she is available for adoption! Reece’s Rainbow calls her Aubree. My friends told me they would have taken her home, but they were only cleared for one child. Aubree is available for adoption, and is longing to be adopted!

Aubree as well as two other AMCers who want families are up for a matching grant this month. If they each raise $500 in donations from all of us then an anonymous donor will double that. If all three kids get their $500 matching grants, then a fourth child with AMC will get a bonus gift. We have until October 31st, but the faster we raise the funds the bigger the bonus gift will be. If we don’t quite raise the funds, then the matching grants are lost. Read about it here.

I feel like I’m always asking for things (read: chocolate) and I’m always being given things. Lots of things. We’re rich beyond measure with the friends and family we have.  But I’m sick for these kids. Sick for them. I close my eyes and see them. I close my heart but still feel them. And I feel helpless. Would you consider helping them? Helping me? They are so  insignificant  in the world. So small. They are the least of the least. Poor,  destitute  orphans. In Matthew 25:40 Jesus says, “Truly I tell you, whatever you did for one of the least of these, you did for me.”

As Jen wrote in her blog this morning, “I hear you, God; I recognize what you grieve for. I see this world, of which I reside in the top 1% of wealth, and I will not imagine that much is not required from whom much has been given. I refuse to identify myself somewhere in the middle of the pack, because I am so far removed from the common human experience, I know I cannot trust my perspective.  While babies are born in tent camps and pastors are sleeping outdoors on mattresses next to the orphans they are raising, I will not defile my holy task by turning your Word into a metaphor, imagining that orphans doesn’t mean orphans and hungry doesn’t mean hungry.”

Saving His Sparrows did a blog post about these kids here. My friend Julia also shares about them as well as a dark look into their future (her son’s past)  here. Don’t let us fool you, our blogs are not going to reach many people with money in their pockets for these kids. This isn’t enough awareness to change anything.

Laelia  and Roland both had birthdays this month. Would you donate a few dollars to Aubree or  Elizaveta  or Raymond as a birthday gift to them? Since they don’t get birthdays. I’m asking you. This is personal for me. I see their faces. I’ve seen what it’s like over there. It broke me.

Go  here  to drop a few mites in for Aubree.

Go  here  to make an investment in  Elizaveta.

Go  here  to help Raymond in his desperation. His need it urgent and his living conditions are scary.

I know these kids’ greatest wish is not Disneyland or even being able to walk or live in a nice house, but it’s having a Mama and Papa. So  please consider one of these children as your own. Be brave about it. Speak to your spouse about it. Adoption saves lives. These kids have AMC like my kids, and potential like my kids, and yet they are lost. They are without love.

Please. For Roland. For Laelia. For me. For yourself. For these kids. For His great name’s sake. For humanity. For our future. For the countries in Eastern Europe who hold them. To change things. To carry burdens. To alleviate pain. To be part of the great work of orphan care. We need you. They need you.

My kids rock!!!

Friday, October 19th, 2012

Remember the video of Laelia walking up the ramp while crying because it was so hard? But she makes it all the way up just for the love of chocolate? Well check out this video under the same conditions only this time she walked from her bedroom, up the ramp and to the den without KAFOs!!! Chocolate did the trick again!

And remember this video of Roland learning to feed himself a graham cracker after a month of stretching those elbows? Well in this video he is FEEDING HIMSELF WITH A SPOON for the first time ever after two months of stretching and serial casting!

My kids rock!!!


Tuesday, October 16th, 2012

From the Roland Diaries: “Today I met a hippo. Yep. Welcome to America. This is my normal now.”

My husband and I joined the PTA at Laelia’s school and we won a free zoo pass for signing up! So Rolly and I took advantage of our only day without a medical or adoption-related appointment this week and headed over to zoo it up!

Rolly vacillated between underwhelmed and overwhelmed, but he only had one age-appropriate fit (not orphanage-related melt down) after we’d been there for three hours. (I had to take him away when he started banging on the glass to get a snake’s attention. For one thing, you can’t do that. For  another  thing, hello! bad idea.) Overall he did pretty good in my opinion. I’m definitely trying to be able to take him out more.

The only downer about our day (besides the heat) was that we got a couple negative comments from other zoo-goers. One couple by the flamingos actually said under their breath, “That’s horrible, that kid’s actually in casts!” To which his partner responded, “Shut up she can hear you!” Blarg. And two girls stared at Rolly instead of the monkeys. They even followed us to stare. WHERE ARE YOUR PARENTS?! No where? Cool then it’s my job. “Um… girls? Shoo.” They gasped and giggled and ran back to their school group. :)

Then one woman asked what happened to Roland’s arms. I said, “Nothing’s broken, it’s for a joint condition.” She said, “Oh yeah when I adopted my daughter from Russia we went through clubfeet casting.”  ***gasp*** That led to a whole wonderful discussion on international and domestic adoption. She even said a few words in Russian to Roland that he seemed to recognize! And I met her youngest daughter (with a heart condition) who she adopted domestically even though she was in her late 50′s! So cool! It all happened right there in front of the fox cage.

Roland also tried to say different animal names which was fun. Of course the polar bear became “teddy bear” and the lion and goats were “kitties,”  the elephants were doggies (“woofs”) and everything on four hoofed feet was a “deer.” Oh and anything with wings was a “birdie” except for the secretary bird which Rolly just barked at. :)

Okay enough talk, here are some pictures. :)


This bird must be related to Roland! (Screams even though not threatened. *snicker*)



Roland to Condor: “Birdie!”

Condor to Rolly: “Lunch?”


Roland started making barking noises at this guy. (Something his sister taught him. *sigh*)

Secretary bird came right up to us!

DRINK THIEF!!! (He wouldn’t let go or give it back.)


“teddy bear”

Sticking his tongue out like the snake.


Happy boy!

Happy birthday Roland!

Sunday, October 14th, 2012

My son’s first birthday is today! He turned two. (Confusing? Well that’s adoption for you.) He’s been our son for eight weeks now and boy is he thriving! For one thing he can talk now! He says “hello” to everyone we meet! Plus he can say Mama which I LOVE!!!!!!!!!!!!!! (He sometimes even refers to me as Mama. Mostly I’m “Dadoo.”  What the heck does dadoo even mean?!!) (And I swear he has the cutest little accent, but maybe that’s in my head. :)) Click here for a video of him saying all his cool new words! Wow, how far he’s come!

We wanted to do something grand for his first birthday in our family, but ended up downplaying the whole thing a bit. We didn’t want to have a crowd or even a small group in our home since we have to maintain this as a safe place for a few more months. We also didn’t want to let him blow out candles, because knowing my son, introducing him to fire would only lead to burning down our entire block. :) So instead we tried to teach him the happy birthday song and gave him all his favorite baby foods. He also played in the church nursery today, so take that orphanage attachment mess!

It’s days like these where I am floored at the thought of anyone giving up this child.

Raca. Fools!

Yes I know that was an impossibly hard decision and I can’t possibly know what they were going through, but that doesn’t change the fact that their decision was the wrong one. This kid is so amazing that thousands of mommies would line the streets waiting to fight over him. And I’m starting to really believe that better  physical  functioning like the kind an American family can provide with better doctors is not worth the sacrifice of a loving home from birth. (It’s not like he needed a heart surgery, he just has a physical limitation!) Almost two years of neglect can’t be rectified by better orthopedic treatment. He needed his parents. He deserved better.

But now what I’m going to write will seem to negate what I just wrote, because orthopedic stuff (like shoes and sitting in a gait trainer) is just what Roland got as his birthday present and he loved it. But I guess I just wanted to say that the fact that he gets to experience better functioning through modern medicine now in no way makes up for what he went through. Only God can redeem the mess that special needs kids go through over in Eastern Europe. Ugh. Part of me just feels a bit guilty that the trauma of losing his parents the day he was born directly led to me (with my orthopedic connections) getting a most precious son.

So sorry, back to the shoes.

The best gift we gave him (besides a home and family and to a lesser degree, kitties) was shoes. Happy birthday baby! Last Thursday I noticed that after this last set of casts his feet are really starting to be “feet shaped.” So as a lark I tried putting some shoes over them. I used Laelia’s old shoes that happened to be boy shoes. They are nothing special and in fact they are in no way functional as they get in his way. But wow was this boy happy! He just stared at his feet and looked so proud of himself. It hit me that these were the first shoes he had ever been able to wear in his entire life. And he just couldn’t stop staring at them and grinning!

The next day I took it a step further. I dusted off the ol’ KidWalk (a gait trainer with a seat) and gave him the feeling of standing in those shoes. I swear, I could have given him ten birthday cakes and a million dollars and not made him nearly as happy as he was just standing in his big boy shoes. Here’s his first “step” kind of.

Mostly he would try to lift his foot (while not weight bearing at all) and get super excited. I would push the KidWalk a bit forward and he would  squeal  with delight. It was pretty precious. Then I’d push him a little ways and when we’d stop he’d say, “Ta da!” Like, “Look at me, Mom!”

After that hard work he fed himself a snack using his new bendy arms! What a big boy he is!

We also tried reading him some books. *sigh* Roland is really not the sit-and-listen kind of child so he mostly just competes for attention with the book. (Video here.) And sometimes he’s so annoying while I’m trying to read to Laelia (required for school) that he must be chased and caught and head-patted into submission. (Video here.)

Haha, Roland just grabbed a wet wipe off the table and made the “blow nose” noise with his mouth. That never gets old. Have I shared that video? Here it is.

Okay I’m off to play with my kids. Laelia would like to point out that she just had a birthday too so they are both birthday kids. :) I said that was good to know because I was just about to go chase down, catch and tickle mercilessly any birthday kids I found! (She has since run off screaming. Gotta go!)

Happy birthday Roland!

We love you.

Four limbs in casts

Saturday, October 13th, 2012

Rolly Man in two casts

“Did he break his legs?”

“What happened to his legs?!”

“Did he fall?”

Speaking to her child after we walked by, “And that’s why you have to be careful.”

“Oh no! What happened?!”

“Does he have clubfeet?” (Bless you informed person!)

Rolly Man in three casts

“How’d he break his arm?”

“Oh my goodness that little guy has a broken arm!”

“How’d you break his arm? Oh Lord, his legs too?!!”

“Well I’d be fussy too with a broken arm.”

“What happened to this guy?!”

“Oh how terrible!”

Rolly Man in four casts

“Isn’t he cute!”

“Those sure don’t slow him down!”

“Is he a Ninja Turtle?”

“If you give him a purple mask he could be  Donatello.”


“Teenage Mutant Ninja Turtles!!!”


Really?! So I’m a horrible parent who broke my son’s legs or an evil parent who broke my son’s arm too, or… the parent of a ninja turtle.

Four casts it is then.

Thank you October (aka Halloween season) for making the guy in four casts acceptable.


Tuesday, October 9th, 2012

Last Saturday was our Southern California Arthrogryposis Meet Up! It was at Angie and Rob’s new house and we had a blast. There was a bounce house which Roland LOVED, and Angie made Laelia a birthday cake for her fifth birthday which she LOVED. Plus we got to see so many friends!

Hanging out in the living room.

Liam, Ryan, Laelia and Roland.

He loved the bounce house! No fear!

They had a blast in there!

Roland and the ladies. ;)

Ryan (Laelia’s *cough* boyfriend) helping decorate her cake.

The first time the fan blew out the candles and we had to re-do. :)

These girls are so much alike. Marion and Laelia.

Roland and Jen spinning Laelia in the chair.

And here’s a video of Laelia and Jen spinning Rolly in the chair.

Ileana (who also has AMC) designed these shirts for the kids! You can order your own here.

Here are some cool black-and-white pictures from Rob’s camera:

From left to right: Laelia, me, Roland, Angie, Heston, Ileana, Elliot, Ryan and Marion.

Here are a couple of adorable pictures of not-so-shy Laelia with her little shy boyfriend, Ryan.

Click here for a video of Laelia chasing poor Ryan (who was walking without his KAFOs) down, hugging him, kissing him and then bossing him into following her to play in the other room! Oh my goodness!

We stayed late and it was close to a three hour drive home so obviously the kids were exhausted. Roland did okay on 2/3rds of the drive up, and he slept most of the way back. After playdates or a lot of stimulation, Roland often can’t sleep. He gave a little  resistance when we got home, but his Ukrainian teddy helped put him to sleep. He did so well during this adventure that we’re debating whether or not we want to start doing more grand adventures with him. We’ll see! :)


Tuesday, October 9th, 2012

Boarding up the damage. Looking more like a house.

“SAN DIEGO  â€” A suspected drunken driver was arrested early Friday after crashing into a home in Linda Vista.

San Diego Fire-Rescue Capt. Tony Jeffreys told that a young girl was asleep in her bed when the car hit the home, intruding some five feet inside her bedroom.

She, nor the driver, were injured. He was booked into jail on suspicion of driving under the influence, police said.

Structural engineers were called to assess the damage.”


The picture above is our next door neighbor’s house. To get an idea of how close this is to us, that’s my car in the picture. This happened a few feet from my children’s bedroom. (Although the driver would have had to go through both our cars and some bars to get to them.) Scary scary scary. We lost their grandmother to a crazy driver.

For all the surgeries my kiddos will go through while I worry, they are never safer than in their Father’s arms. Not in their beds, not in my arms, not surrounded by ten feet of bubble wrap in an isolation tank (don’t think I haven’t thought of doing that), but in God’s loving arms. That doesn’t mean bad things will never happen, but it means he’s got them. Life is so short and so precious and so tenuous.

Please pray for our young neighbor. Having a car crash through your little pink curtains is traumatizing.


Friday, October 5th, 2012

So we flew to Philadelphia a bit over two weeks ago, got a game plan for our little man from Dr. van Bosse, and flew home in two plaster casts. For the 36 hours after casts went on and the Tylenol with Codine was taken our little man screamed his head off. He was up all night screaming and since we were all in the same room in the Ronald McDonald House, we were all miserable and upset. Then he was doing this  weird jerking thing that scared me. (Thanks for all your emails about it! Turns out since it only happened during deep sleep that it was most likely a combination of medication, sleep  deprivation  and stress. We’ve since added this medication to Rolly’s chart as an allergy, even though it probably wasn’t an allergic reaction, but we’re trying to avoid it for the future.) We ended the medication while on the airplane home and everything was much better. We think maybe the drugged feeling reminded him of his drugged life and caused more stress. Who knows. Anyway about a day and a half later he was doing great. He had even learned to crawl again in that time.

For the rest of his serial casting we’re doing it locally, and as an added bonus he is getting his elbows worked on as well. So last Tuesday he got the old casts taken off and the new ones put on plus one on his left arm. Of course they used the Saw of Death. I’ve been asked if I mean a cast removal saw, but no, I mean the Saw of Death. The one that eats children.

He did really well at first but then broke down into  hysterics  for the rest of it. (It didn’t help that the eight year old boy next door also screamed… louder.) Then he cried on the 5 minute car ride home and then fell asleep from exhaustion.

These casts were a lot lighter than the last ones. I was expecting another day of screaming, especially since we had not given him any medicine this time, but actually it was great! He only screamed a bit when we first got home. Mostly that was because it was abnormally hot for Autumn (go away Summer!), and he could no longer knee-stand or knee-walk or crawl like with the last set of casts. As  his feet get better (straighter) they pitch him forward making knee-standing (and walking) a lot harder. When he woke up from his nap he was so mad. He did that high-pitched screaming while throwing a huge fit thing no one likes, but I was completely able to bring him out of it easily. I just stood him up and helped him get around. Once he learned he was not helpless then he got better. We even got out Laelia’s old caster cart  that her grandpa made for her and used that as a walker. He started to feel better.


For crawling (his primary mode of transportation) he was a one-stooge show for a while. He could get onto all fours, but then his tricep would fire up and his uncasted arm would go straight (like what he’s used to doing to start crawling) and he would fall towards the bent arm like a slow-motion, messed-up somersault. If I kept his uncasted arm bent (as much as it would bend) he could crawl fine. I can’t tell you how many times I would say, “Keep your arm bent, baby,” only to watch him once again do the slow roll onto his back. He looked like a turtle stuck on its back. (I did my best not to laugh.) Eventually he got the hang of it. Ugh, I just hate that it’s all going to change again on Tuesday.

Besides not being able to straighten it to crawl, he now uses the casted arm MORE in a cast! It helps that the cast is light and a bent arm is more functional.  Also he still has full use of his fingers.  We casted his non-dominate side and he seems to love  moving it around (read: “thunking it over and over on the furniture”). He’ll even do things he used to do with his right arm instead with his left. Like…

Pulling all the wiring out of the wall, or…

Pulling out the Internet cords. *sigh*

For all the  hassles   he really is handling casts really well. And now that the weather has mercifully cooled down, he’s a happy little man again. Until next Tuesday…

And I’m happy overall too. Except that I’ve been accused of breaking his arm, oh, about a hundred times. >:-/  Once by the parking guy at Children’s hospital, once by the receptionist at the counseling office, once by the grocery store lady, once at Target by like a whole slew of people, once at Baby’s R Us, etc etc. Boo. (I have two responses in my back pocket: one’s informative and the other is completely snarky.)

But casts really are a blessing and not a bad thing. And even though he had to learn to get around differently, rest assured he can  maneuver  his way into mischief just fine with them on.

This is how we let Mommy do Wii Fit. (We don’t.)

Happy birthday Little Laelia!

Wednesday, October 3rd, 2012

Little Laelia turns FIVE

We had told her back in December that she’d get a brother for her birthday.

The process went a bit faster than expected.

Laelia found out that she loves to mommy him.

And pick on him. :)

And play with him.

Who wants to color?!!

Best birthday present ever… even if he is a stinker sometimes. ;)

The next day we had birthday cookies!

Laelia went to school, then PT, then OT, then she picked out pumpkins with her brother, then we had a mini birthday party (just the three of us since daddy was working) and she fell asleep one bite into her cookie. :)

I’m so proud of my daughter and all she’s accomplished in five years. A lifetime has gone by in that time. I’m so thrilled with the person she grew up to be and I’m in love with our family and her role in it. I couldn’t be happier. Well I’m crying, but that’s only because I forbid my daughter to ever grow up and she didn’t listen. ;)

There’s a project called Hope for AMC where different parents, siblings and grandparents submit pictures of what they would tell themselves when their AMCer came to live with them or other messages of hope. These are the two pictures we submitted (click to enlarge):

Thanks for being my kid, Laelia Sky. Happy birthday.