Archive for the 'blessings' Category

Nine months

Monday, May 27th, 2013

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*yawn*

One of the downsides to writing a blog as part of processing my life is that when life is going this good I totally forget to write anything. My kids are doing great. Two of our friends (Sophie and Elliot) started walking independently recently! And from the last blog post you all know that my husband and I started a .org. Our website is www.graftedbranch.org and I’m happy to report that it is finally running smoothly.

It seems lately my life is all about adoption advocacy and orphan care. Two of the families I had spoken with about adopting AMCers are in an Eastern European country (not Roland’s birth country, but a neighboring one) right this minute meeting their children! Following their journeys has been so rewarding and I get so excited for them! Another little one with AMC just got a commitment! And a fourth family has been emailing me for days and days asking a million great questions while considering committing to an AMCer. Plus I love getting picture updates from Igor and Victoria’s (now Joseph and Vika’s) two families who are much better than I am about keeping people updated about their newly adopted child. (Sorry.) This is very rewarding for me, but honestly orphan care is a world of heart ache. One AMCer I advocated for has lost his family and is not expected to get another one. My Raymond who is on the side of this blog has been without a family for years with no prospects. The ones who are lucky enough to get out of the system of subhuman care and into families are little lights in a vast darkness. Thankfully there have been quite a few of these encouraging little lights recently.

It’s been nine months since Roland came home. In that nine months a lot has happened. Chelsea and I got off the plane from Ukraine and about ten minutes later Chelsea was pregnant. (You know, give or take a few minutes.) Last week she gave birth to a beautiful baby boy they named Addison Ezra. The week before that a gal I had met on the street corner by my house also gave birth to a beautiful boy named Iorek. Iorek’s mom was homeless (living in a tent) and had no baby items. We were able to be her advocates, help find her a place to live (who also provided medical care), get lice treatment, have a reliable phone, and make sure she had diapers, wipes, baby clothes, a stroller and a car seat as well as many other items. I’ve never called so many government programs and been so frustrated with our system. (Well maybe not “never,” I mean Laelia’s initial diagnosis and care was a ridiculous process.) And I’ve never been so downright in awe of my generous friends and family who partnered with us. (Well I can’t say “never” there either since these same friends and family have been amazing many other times.)

The experience with helping a mother keep her child led to long talks with my husband on how else we can participate in orphan prevention. We headed a fundraiser to support parents in Haiti to keep and care for their children by selling the bracelets they made out of cereal boxes and other trash. We sold all 157 of our bracelets (with any run-off profit going to support Raymond mentioned above). And a few days ago we were able to commit to support children through Compassion International. It’s 38 dollars per child per month and we were able to make that fit into our budget with a little work. We had read a study (the first of its kind) that put statistics to the Compassion program and proved that children in the program were helped greatly by sponsorship.  You never know the long-term effects of throwing money at a third world problem, so we were grateful for the study which showed us how we could help these vulnerable children. The only down side they could see was that some children didn’t get sponsors and didn’t thrive. Well we can change that! You can go here to find a child of your own. You can write to them (they even have a tool so you can do it online) and learn about what they’re facing. Our youngest child has no parents and lives with his grandma who sometimes gets work as a farmer. Our oldest child is 18 and working through middle school and supporting her younger siblings. I’ve always wanted to be a grandma and this makes me feel like one. :)

So what’s new with all of us?

Laelia is finishing her school year and will be a kindergarten graduate next week. She started the year in a state of simi-chaos as her mother was in Ukraine and she became a big sister right before her first day of school. She also started the year not able to read or sound out words. Well she will finish the year reading sentences! We will continue to work on her reading trouble areas this summer, but I have to remember she couldn’t do it at all just nine months ago.  I’ve watched her learn to love math and all math homework this year. She can add and subtract. She can measure and compare. She can do little math problems at five that I couldn’t do in third grade. ;) Everyone I speak with says, “That’s an AMCer for you,” in other words school was bound to be enjoyable and a bit easy for her. She has also learned how to manipulate adults this year more than any other. She briefly became the scourge of all substitutes. We had to set up her IEP for next year with some warnings to aides and teachers that Laelia can do everything except for a few large gross motor actions all by herself. So don’t believe her when she says you have to do her homework for her! :) Stinker. :) Laelia also finished her first year of Sparks. She finished her book the first half of the club year and then played and goofed off the last half. This is the first year of her life that Laelia has been shy. It took me by surprise, but I do admit to enjoying her holding my leg with her little face buried in my thigh. (This was the child who never had separation anxiety or missed me when I dropped her off at preschool.) We are going to the AMC conference in Vegas in July so she can hang out with others with AMC. That has always been really good for Laelia in the past and this year we’re going as a whole family! Laelia continues to be a joy and a light.

Roland is doing wonderfully. He is a cuddle bug. Every morning I hear, “Mommy mommy mommy!!!” and get cuddle hugs from him. He loves tickles too. He is always happy. Rarely is he any other emotion. Even his brief rages at the injustice of the world (My toy car fell down! My sister won’t give me that! I don’t want to eat that! Mine!!!) just show a toddler acting way more typical than post-institutional. His least favorite thing in the world is when his sister shuts a door in his face or if Mommy or Daddy leaves the house without him. That gets a big scream, but really he’s not Mr. Screamers anymore. And he can go very quickly right back to happy bouncy fun. He hasn’t had a single medical worry in a long time. He’s not hypoglycemic anymore. He’s not deficient in vitamins and minerals anymore. He’s happy and healthy and cuddly and cute. He walks everywhere without a walker and is very very close to standing up independently using a step. He also began going to preschool a couple months ago. He goes just for a few hours in the morning on Mondays and Thursdays. Just that bit of social interaction has given him lots more words: up, down, yes (he says “da”), no, why, I don’t know, bye-bye mama, want, go, come on, food, please, pee-pee (means iPad, we think it’s a combination of Pad and TV), thank-you, help and car. He loves story time, he loves dancing, he loves playing with friends. We have really tried to get him into Early Head Start next year for four days a week instead of two because he seems to enjoy it so incredibly much and is getting so much out of it. Unfortunately that’s a long shot.

I have been getting all my grocery shopping done during the brief preschool hours in the morning. It has been glorious. I’ve also done a lot of doctor’s appointments during those hours as I gear up to donate my kidney. I just finished all my major medical appointments for that (nutritionist, MRI/MRA, nephrologist, x-rays, bloodwork, glucose test, social worker, etc.)  and will be looking to start a donation chain as the altruistic donor when the kids go back to school in the Fall. Following in my husband’s footsteps on this one. It is weird to see my husband’s picture on my informational packets and hearing, “Oh you’re Charles’ wife!” :)

Daddy (aka Charles) switched careers six months ago and is doing well at his new job. It has kept him busy nights and weekends, but mostly because he wants to do well and enjoys being challenged by it. When he’s not doing IT support for graftedbranch.org he is looking for ways to better himself and help others. He’s my math man and I love the way he can work helping orphans and kids at risk into our budget. I’m very proud of him. For the first time in our marriage he is up before I am and working hard before I open my eyes. He has also taken up running and it’s a lot of fun when he gets back from a run around our neighborhood and the kids yell, “Daddy daddy daddy!” like he’s been gone all day. :)

Okay as I wrote this post both my children got into a bag of Hershey kisses and ate the whole thing. They have little guilty chocolate mouths and the whole house is littered with foil wrappers. Oh and the littlest had been wiping his mouth on my favorite blanket. Now they don’t want breakfast. This may be why I haven’t had a ton of time to blog recently. ;) :) :)

Well I didn’t plan on blogging until I got three emails from three different people reminding me it had been a month since my last blog post. :) As I go clean up chocolate fun I’ll leave you with some random pictures. :)

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Roland and Iorek

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The cool wheelchair lift down the street. We have no way of getting up the hill otherwise.

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Laelia fell asleep while cleaning.

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Getting her Sparks award

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A ribbon for finishing her book.

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Roland was the loudest cheering section during the awards ceremony.

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Roland learned to open the back screen door.

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We found him playing in our weed pile.

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He also let the cat out.

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Then chased her around.

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This is Roland’s new ability to reach things he dropped on the floor so Laelia doesn’t have to retrieve his stuff all the time.

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My monkey.

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Laelia’s picture of her family. She loves writing our names.

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Gangsta Rollin’

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Playing Sorry (kinda old picture, he’s out of casts obviously.)

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The other day the kids decided to move all the chairs from the kitchen into the living room up the ramp for NO REASON. For days my living room was an obstacle course.

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Cute face.

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Plotting and hugging.

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Car seat and stroller for Iorek.

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Writing letters.

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Oven mitt robot… his favorite thing to steal from my kitchen when I need it.

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His stick ‘em up sleeping pose.

And just for fun because this just happened.

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Check out wrappers in the corner she was hiding under the ramp.

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Found on couch. Suspicious.

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“Caught this one eating chocolate in our bedroom.”

PT newness

Friday, April 12th, 2013

Two new tricks!

1. If Laelia puts on her KAFOs (leg braces) in bed then she can just scoot off her bed and walk around. But if she is on the floor when she puts them on then she has to scoot or roll all the way to the living room step in order to stand up. (Here’s a video of her standing up using the living room step. It’s one of the first times she ever did it so it’s slow. Now it’s second nature to her and goes quickly.) The other week at physical therapy we discovered she could stand up all by herself using only a small sturdy table! I kept saying how I wanted one of those special tables for her room so she doesn’t have to go all the way to the living room to stand. Well those PT tables cost $300. Yeah… no. But we found something that works just as well!

(Ignore Roland’s whines. Whenever Laelia does anything under the sun he is right in line waiting and begging and whimpering to do it too.)

2. Now Roland is working on standing up too! The little guy walks all over the place, but standing up is something he’s still learning. And boy does this kid love standing practice! Anytime Laelia uses the step to stand up, Roland will try it too. He begs to go “down” and then rolls to the step, gets into position and then I help him stand. He grins so huge every time and then walks up the ramp and begs to go “down” again to the floor to do the whole process over. Repeat and repeat infinity times. I get sick of it way before he does. :) What energy!

Aren’t they the best kids ever?!!!

:)

The easy life

Wednesday, March 13th, 2013

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I wanted to write a little about how we’re doing considering it’s been six months since we brought our newest little home. I’d describe our adoption as “easy,” not that it was always that way, but because on the grand scale of things we have been incredibly blessed, and that has nothing to do with us. We weren’t especially prepared and we weren’t especially good at patience or parenting tricks. Regardless Roland has fit in really well, bonded incredibly fast and we all love each other. And thanks to our wonderful family and friends we were able to provide him not only a home, but a loving community.

I have incredible respect for those families who choose love during the hard times. I sometimes think I have this so easy because God knows I suck at being a loving mother during a screaming fit. And even though it’s been easy (much easier than we expected) it hasn’t always been roses. I’ve struggled with anger during the last six months. You’d think communication difficulties would just be hard on the little one, but I found myself getting angry! “What in the world do you want?!” has come out of my mouth more than once. And I have felt deeply the irony of yelling, “Stop yelling!” And some days I’m only one more “No!” or “Ow!” away from grinding my teeth to nubs. Oh and have I mentioned that my cute little man still has the well-earned nick name Mr. Screamers? I feel like my major accomplishment in this adoption has been to show the world that ANYONE can adopt.

And even though Roland has had some trauma in his past, most of what we’re dealing with is just two year old boy. I think my biggest parenting handicap is the fact that Laelia was so easy on me!

But really even when we were loving a picture of a boy and imagining what he would be like, I didn’t really think I could have as much love for him as I do. I mean Laelia is my world. She’s my life. Come on, she’s Laelia! So how after six months do I have as much love for my Roland as I do for my Laelia? He’s not flesh of my flesh. I didn’t have his newborn face to memorize or breastfeeding to bond us, but I love him as much as my daughter. How? I don’t know. It’s true that love doesn’t divide, it multiples. But I didn’t expect it on this scale.

Sometimes holding my little cuddly boy is healing. Just goodness.

We adopt because we were adopted. We love because we are loved. We give because it’s all been given to us. Our entire family is one collective response to a divine Initiator.

People say all the time now much Roland looks like us. And I know that’s true, but when I look at him I notice every single Ukrainian feature. I’m drawn to those differences like anyone is drawn to notice the differences in things. The things that look nothing like us are just as beautiful as the things that look like us. His eyes are the same color as his sister’s. His skin has the same paleness as both parents. But that Russian nose and dark eyelashes are on a completely different genetic canvas and they are beautiful.

So I know I haven’t found the time to write endlessly about our days, regretfully, but know that we are imperfect people who are enjoying life and learning as we go. And things have been good.

Really good.

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Roland’s knees and legs

Saturday, February 16th, 2013

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I’ve already done a blog on my daughter’s knees and their progression from bendy to straight so you all already know how amazing this little girl’s story is. We went from doctors absolutely flatly refusing to cast her knees five years ago (and denying us for stretching knee splints because Laelia was too “disabled” to utilize straight legs) to commuting to Philadelphia so Dr. van Bosse could get this little lady’s legs super straight and walking everywhere. She’s even begun to climb small steps!

Five years later and one of the original doctors who didn’t want to cast Laelia’s legs straight was all too willing to cast Roland’s legs straight. (Saving us weekly flights to Philadelphia.) Medical practice evolves, thankfully, and I want to believe my daughter was a pioneer in that regard, at least in a small way. I do know her pictures were used in many occupational therapy presentations across the country, and I have met people who have seen this blog and changed their expectations for their AMCers based on it. Her story was made stronger by the dim predictions of some of the best doctors in orthopedics early on. And I’d like to think there was a reason we did not have instant access to the best advice and therapy techniques. Maybe it was so people could learn from our mistakes. Maybe it was so we could travel to Seattle and Philly and Kansas City and meet many people. Maybe so others who had also missed the boat could get hope that if Laelia could start walking at age 4 and independently at age 5 then their kids could too.

Well, I know one AMCer who has had his life changed by Laelia’s experiences: her brother. Someone who was not believed to ever walk himself and started doing that very thing after six months* of Ponseti casting, bracing and stretching.

(*Now Laelia’s experiences seem to be at one end of the spectrum  and Roland’s at the other. Roland responded really well to casting. He avoided tibial subluxation (a complication of casting knees) and he had enough of the right kinds of leg muscles to walk without needing years of PT intervention first. What has taken Laelia years has taken Roland months. We know we got off easy with him. So I guess I’m not saying, “Roland achieved ambulation in six months and so can you!” The same exact therapies would not have worked as quickly on Laelia’s body. Every AMCer is different. But I am saying even the most severe cases of amyoplasia can be ambulatory. I know two adults around my age who have decided to start the process of ambulation or easier ambulation later in life. And Dr. van Bosse has seen many many adopted older kids with AMC and increased their functionality greatly!)

Okay now on to the Roland pictures. Here’s what’s been going on for the last several months.

Roland’s knees

Roland's knees

(Click on any picture to enlarge it.)

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Those knees were stuck around 100 degrees for one leg and 90 degrees for the other.

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Stretching and gravity didn’t straighten them much.

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Roland’s little legs during tummy time.

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Combined with his little curved feet we knew Ponseti casting was in his future.

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After a month home we had stretched his arms to around 15 degrees of bend, but his knees only gained a few degrees of range from the stretches.

Time for casting!

Casting montage!

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Dinosaurs from Philly. Dr. van Bosse started us off with the first set of casts. The following were all done locally.

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Red

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Green

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Black

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Purple

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Blue

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Right after blue were removed. Look at those straighter feet too!

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From the side

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Red, green, blue and purple

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Orange was our favorite!

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Blue again. This is Roland playing at the Polar Bear exhibit at the zoo.

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Right after second set of blue casts were removed.

They gave him little stockinette gloves to keep him from scratching at that poor skin.

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Look how straight those knees are getting!

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PINK!!!!!!!!!!!!!!!!!!!! Just for kicks.

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Standing practice! (Hiding the pink casts under yellow socks. ;))

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Some skin breakdown meant we needed to take a break from casting. But his feet were very close to perfect!

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This is how far we got his knees. It’s easier to tell in x-rays.

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FIRST REAL BATH IN MONTHS!!!!!!!!!!!!!!!!!!!!

(The casts smelled so bad.)

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The casts were bivalved (cut in two) and became removable.

We kept them on with ace bandages while his leg braces were being made.

Those ace bandages had to be burned afterwards. STINK!

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Finally new KAFOs! (Knee Ankle Foot Orthotics) The left leg needed more time to heal at this point.

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In Payless getting his VERY FIRST PAIR OF SHOES! He’s really thrilled.

Once they healed enough (and we put a ton of liquid skin on the sore areas) someone could wear his KAFOs again!

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And he’s standing independently for the first time!!!!!!!!!!!!!!!!!!!!!!!

(And he’s thrilled about it.) :)

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You’ve come a long way little guy.

:)

Our excursion up north… in pictures

Friday, February 15th, 2013

It’s nice to have most of our family living in the same state… oh wait, it’s the state of California which is freaking long! Family is really a ten hour drive “up the road” so we don’t see them as much as we’d like. But a friend’s wedding provided the opportunity for a road trip and off we went to make the rounds! Here are a few pictures of our trip. (I realize now I missed out on pictures with Grandma Wynema, Aunt Linda, Ginny and Emily and Daniel. I guess we were just too busy having fun and catching up.)

The wedding (Saturday):

We drove up Friday night after Charley got off work. We arrived in Fresno at 1:24 am only to be told our room had been accidentally given away. We drove around looking for the other hotel. We got the kids to bed by 2:15 am by some miracle. So then we were crossing our fingers that they would last the whole wedding later that day without being the crazy children they already are, but more so. Crazy concentrated  Lynn’s wedding was so great because the ceremony was set up in the banquet/reception hall. So we sat at the tables we would be served lunch at while watching the ceremony. Somehow this made it very intimate and perfect… like a family reunion. Roland missed most of the ceremony as he had to be louder than anyone speaking. At least I wasn’t the only one in the “little screamers” section and the set up made it less obtrusive to dart out the back. :) Roland cheered, clapped and hollered when the couple walked back up the aisle after the ceremony. :)

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The couple: Lynn and Doug

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Bubbles!

Check out the video of my littlest trying to blow a bubble. He would have passed out before too long. :)

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Check out that face!

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That face there. :)

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Laelia decided to “meow” silently during the entire ceremony. Don’t ask.

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Roland sat with Becky… you know for the 30 seconds he was quiet, then they darted out the back. :)

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Loud little man!

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Flirting with my camera.

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Oooh!

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This was our table.

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Kids with Uncle Bolt

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One kid stealing food off the table.

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I had put the bubbles way up high, but Laelia climbed a small mountain of wide stairs to get to it! The first step was almost as tall as she was, but she did them all by herself. I even got a short video of the last couple steps. (She started at the bottom!)

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Sunday:

We drove up the extra three hours to Placerville that night with a little boy who cried most of the drive. (He had his casts cut off, bivalved and strapped back on with ace bandages which cut into his skin. Long story.) We arrived a bit after midnight and worked on getting the kids to bed. Later that morning we visited the church Charley and I met and fell in love at. It was nice to see the familiar spots like  that parking lot we used to make out in the… um… trees. :) And we spent some time at their new playground.

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Lunch after church at Tortilla Flats!

AMC Mini Meet Up:

Charley had to drive back to San Diego right after church. (He ended up being too tired to make it the whole way and stopped off in Bakersfield at Linda and Phong’s to sleep.) He had work the next morning, but the kids and I stayed a few more days. Through Facebook I learned of another AMC family living right down the road from my childhood home! So we went to her house. It was us three, plus Becky and her kids, plus Kayla and her kids and a friend. It was funny how we all knew some of the same people even though we lived a long ways away.

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The AMCers

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Love these people!

The next day we visited Sue who had just had hip surgery a few days earlier. We also visited Ginny and her family. Both Ginny and Sue flew down to San Diego to see us after Laelia was born and to welcome us to the special needs community and offer support. I had no idea what to do when Laelia was born. Wow how times have changed!

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Helping “Auntie” Sue learn to walk again. :)

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Getting Jared rides. :)

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Destroying Juni’s princess tent. :)

And last but not least…

Staying with Grandma and Grandpa and GIANT DOGGY!!!

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The three “kids.”

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Dog = ride-able

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Giddy Up!

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Grandpa taught Laelia poker (which she called “pokes”) and she beat us. All. The. Time. We even dealt the dog in. Laelia would give back cards that made no sense and then STILL WIN. ACCCCCCCCC! Grandpa says he’s taking her to Vegas.

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My car goes on your head. You’re welcome.

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Rolly Man getting tuckered out.

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Rolly had to be typing too. So they put a calculator out for him.

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Laelia pushing Levi.

Here’s a video of her pushing  Roland all over the kitchen. Compare it to this video in the same kitchen. She’s come a LONG way!

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Aunt and Uncle meeting Rolly

Afterwards we went to Seniors Club to meet all Grandma’s friends who had prayed Roland home.

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Laelia and Grandpa

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The little rascals. (Soon to be four! One more is coming from the Congo!)

We got to fly back home because these kids would not put up with another drive. (Especially after we drove out to Elk Grove one day, and Folsom the next.) We closed an entire TSA lane in the security area when I put Roland’s homemade walker through the xray machine and it got stuck. They had to open it up to get it out. I guess it was suspicious because of the two random planks of wood I had duct-taped to the bottom to add weight. The lady asked, “What the hell is this?!” I answered, “Roland needs a walker. Walkers cost $3,000. This was $5 plus $2.50 for caster wheels.” Then I hand it to my son who happily walks around with it yelling, “Wok wok wok!” (His word for walk.) The lady then smiles and says, “You saved $3,000? Say no more. That’s awesome.” Laelia demanded to walk through the area because she could walk now over “bumps.” They were telling her she couldn’t because of the metal in her braces. Guess who won. :) Roland is a MUCH easier flyer now that he’s been home for six months, and surprisingly taking my two AMCers on a flight was not that hard. These two are wonderful travel buddies when they want to be!

New Stuff Grandpa Built

Friday, February 1st, 2013

Many of you have seen the accessible light switches and door to the kids’ room that my dad built. (If not go here.) Laelia was able to get out of her room for the first time by herself using that simple contraption. Also one of the first great joys of my son’s post-orphanage life was being able to open and shut (and open and shut and open and shut) the bedroom door. When we were in Kiev he would shut the apartment door and then wait p.a.t.i.e.n.t.l.y for us to open it so he could swing it wide and then shut it again. Now he just does it all by himself all day long. :) He also loves the light switches and will turn the light off and on (and off and on) all the time… especially when his sissy is on the potty, taking a bath or brushing her teeth. Of course.

Well a few weeks ago Grandma and Grandpa came for another visit. This time besides some weather-proofing (what is this liquid stuff falling from the sky?!) Dad built a way for Laelia to enter the front door of our house! He had to figure out a way to keep the door in place using a gate latch. Then he drilled one of those shower bars to the door. Then he made a handrail (with another sturdy shower bar) for the one tiny step before that. I can’t tell you how nice it is to get Laelia out of the car and while I’m fighting with Roland’s carseat to just say, “Go in the house Laes!” and she does! Before I would use my necessarily beefy arms to hoist them both over the step and door jam. Now I don’t have to!!!

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Click here for a video of how Laelia uses them.

Also we got a portable “hide-y ramp” as Laelia calls it. Because it hides the one step to get to the living room. But it’s completely removable too! Dad even found left over carpet in our garage to match! Now instead of Laelia walking across the entire house to get to the living room, she takes the short cut! And she has totally mastered walking up this slightly-steeper ramp perfectly!

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No step here!

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Ramp upended to show it’s removable.

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And lastly he built a ramp going out the back. It’s just a simple one, but Laelia can do it herself!

We are just SUPER ACCESSIBLE NOW!

THANKS GRANDPA!

Walking down the aisle… the proudest mommy moment

Sunday, January 6th, 2013

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“The doctor leaned across my bed to break the news. He spelled things out and wrote them down. Every time he asked if we had questions, we didn’t know what to ask. We asked if she would be able to walk. He said he didn’t know. I cried some more.” ~October 4th, 2007

“I have a physically disabled daughter. It still hurts to say that.” ~October 7th, 2007

“We went into Children’s hospital and our physical therapist looked like a teenager. [...] They only had two other children come through with Arthrogryposis and only one could walk. His (the walking kid’s) physical therapist said it was nothing she did either, he just could. It turns out that babies with Arthrogryposis that have the leg joints stiff in a straight, outward way are more able to walk. Of course our baby girl has the wide open legs and hope seems dim.” ~October 10th, 2007

“We had our first orthopedics appointment! We called ahead of time to see if they were closed for the fires. Then we covered the baby, held our breaths, brushed the ash from our car and drove through what looked like Armageddon. What felt like little drops of rain turned out to be tiny bits of ash from unusually dark skies. [...] We were getting casts that day. :) We decided to try and fix the club feet with the casts and stretch out the legs (knees).” ~October 25th, 2007

Charles: “We got Laelia’s casts changed again today. My wife asked the doctor how far the knees could get straightened out. We hadn’t seen a ton of progress, and we were wondering if her legs would be straight enough for her to walk. “Oh,” the doctor replied, “we haven’t been trying to straighten out her knees. Right now I’m thinking that she’ll be wheelchair-bound, so her knees are at about the perfect bend to accommodate that.” ~November 19th, 2007

“There’s no cure for what she has. There’s no way to grow the muscle that she lacks. I can’t even get all her parts looking the way they should let alone moving the way they should. And she’s working toward goals that fall short of even the basic normal functioning of typical kids. Right now we’re focusing on getting her to be “less special.” ~December 20th, 2007

“Okay tonight is when we find out how Laelia’s surgeries went. We will discuss braces or more casting and it will be decided split second without a sit down.. as usual. As for more casting, our physical therapist told us that she will not be able to straighten out Laelia’s legs with stretches or therapy, so we are going to request more casting to hopefully achieve that. Unless our orthopedics doctor has major objections or doesn’t think that will work.” ~January 7th, 2008

“They didn’t cast the legs straight. We were told she wouldn’t walk. Ever.” ~January 10th, 2008

“We switched orthopedic doctors today (Friday). This new one also does not believe Laelia will walk either, but actually explained the physicality behind that belief. So even if she were able to be straightened out, she doesn’t have the muscle to walk. Even if we did a muscle transplant, the muscle wouldn’t work. Even if we could get her to stand, she would not be able to do so once she got to be around 60lbs since she won’t be able to hold up her own weight and her muscles will not grow with her.” ~February 15th, 2008

“I was curious as to how a doctor’s note could be three pages long. But what I was reading was the doctor’s impressions and findings in detail. I read over, “…significant deformity…significant upper extremity involvement…certainly require surgery…not significant leg power…goals need to be reasonable…I suspect she will come to utilize an electric wheelchair…the need for good upper body strength to control walker was stressed [to parents] (as in she won’t be able to)…toes will require flexor tenotomies at time of posteromedial releases…all of this was discussed in quite frank detail with the family, trying to paint a realistic picture, though not be overly pessimistic.” ~March 16th, 2008

“The EMG showed extremely poor muscle tone. What we had suspected was now proved on a test. The muscles in her arms and legs are in extremely poor shape. I start to wonder once again how her life will be.” ~July 25th, 2008

“Sometimes I forget what normal movement looks like and am amazed at what my friend’s newborns can do that Laelie will never be able to do. She will move, but she will use technology to help. Of course by the same token, there are a lot of things that Laelie will do that none of her new friends will be able to do. Like move a wheelchair with her head.” ~August 18th, 2008

“Everyday during PT (physical therapy) I get discouraged by Lali’s lack of movement. Stupid arthrogryposis! Stupid amyoplasia! If I try to do her exercises she throws a fit and refuses to do much. I try to encourage her to move her arms and legs, but she will just lie there and cry. And I really start to think, Will my baby ever move?” ~September 14th, 2008

“Laelia may never walk. I was sitting on the couch today playing with my baby and it dawned on me that my baby is not looking like she will be able to stand or walk or lift her arms. Her legs never got straight, her muscles never fired up or grew. Her therapists mentioned that she was one of the worst cases as far as muscle atrophy that they had seen.” ~September 21st, 2008

“Even with all the muscle loss, she is able to roll! That makes all the difference in the world! Now I’m hopeful she’ll be able to get around her home as an adult by rolling or scooting.” ~November 21st, 2008

“I saw two callus doctors today, and my experience was not that great. One largely ignored me while smiling. The other thought I was in denial of the severity of my daughter’s condition and took the opportunity to tell me that Lali “has severe joint contractions and muscle loss that will NEVER go away,” and I needed to “deal with that fact instead of searching for new splints or braces.” Do not treat a child like their worth is the sum of their workable body parts. And that their worth of your time is the sum of their fixable body parts (of which you’ve determined my daughter has little).” ~January 30th, 2009

“When checking out at Target the lady at the counter asked me if Lali could walk yet. I just said, “Not yet.”  The lady looked so confused. “Well why not? Have you tried?” ~May 11th, 2009

“We found out at our last trip to the PT that Laelia’s body is still not in the position for standing. That’s what the two major surgeries were for so we’re bummed as you can imagine.” ~November 21st, 2009

“At PT the other day they strapped Lali up to a giant suspension machine and moved her hovering self across the room while she kicked out her little feet to keep them from dragging. She eventually got a rhythm going: right left right left. She looked in the mirror as she went by and exclaimed with so much pride, “Laelia walking!” ~January 28th, 2010

“Laelia can now stand on her knees for ten seconds! This is her biggest accomplishment to date! Doctors said she wouldn’t be able to do this!” ~February 26th, 2010

“[Flew to Seattle to see another orthopedic doctor.] He said she wasn’t a great candidate for this (osteotomy) surgery, and to wait six months to a year to see if we should do anything with her. He said that 90% of kids with amyoplasia were ambulatory (able to transfer and stand), but it wasn’t looking like Laelia was going to be one of those kids.” ~April 3rd, 2010

“Tomorrow we’ll be in Philly and the next morning we’ll have our appointment with Dr. van Bosse at Shriners. [...] I’m also not sure if I’m ready to hear the straight truth from the arthrogryposis expert on my daughter’s care.” ~June 16th, 2010

“Dr. van Bosse is now our orthopedic doctor!” He said my baby will walk! ~June 19th, 2010

~

“Tonight my baby took her first steps. My baby can walk! My baby can walk! My baby can walk!” ~August 31st, 2011

~

Then it just snow-balled…

In September of 2011 Laelia knee walked for the first time. On November 1st, 2011 Laelia used a walker by herself for the first time. On December 3rd, 2011  Laelia stood independently without holding anything for the first time. The very next day she took her first independent steps and crashed into a couch.

 

Linda and Phong became engaged 21 days later and asked Laelia to be their flower girl. The kid was walking with crutches but we had no idea how she would throw the flower petals. It wasn’t until August 2012 that Laelia started to walk independently for long distances without her crutches and was hands-free. We practiced holding a basket while walking. She fell. A lot. We kept practicing. She fell. Rarely.

Last weekend Laelia the flower girl walked down the white runner towards the waiting bridesmaids and groomsmen. She walked with confidence. No walker. No wheelchair. No crutches. No falling or stumbling. She held her basket of petals with one hand and tossed them down the runner with the other. Her movements were like a synchronized dance as each action swayed her balance.

 

 

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Laelia was suppose to walk to a specific place near her grandma, but instead she walked straight to me. (I was matron of honor and standing up front.) She grinned up at me with such pride in her eyes, beaming like the sun! I walked her to where she was suppose to be while whispering my own joy and pride into her ears.

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They said she never would.

She did.

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Thank you God.

*tears*

 

Christmas challenge!

Monday, December 10th, 2012

*GASP*

(Heh, that picture of Laelia never gets old. ;))

Laelia and Roland’s cousin made it to $1,000! Before the 12/12/12 deadline! Woohoo!!! Not only that, but their account now has $2,000! That’s over half way to our goal by the end of the month!

And that’s not all!

We have a Christmas challenge!

Some anonymous donors (different ones) have stepped forward to keep this thing going!

So starting tonight funds will once again CONTINUE TO BE MATCHED!!!

Every dollar will be matched until the account reaches $4,000 OR until 12/25/12.

That’s Christmas Day!!!

Go here to donate.

$1 will become $2!

$10 will become $20!

$100 will become $200!

$234 dollars will become $468 dollars!

And so on.

Every donation is matched within 24 hours and you can see your donation plus the matching donation directly on the donation page.

Please share with your friends!

We want to use this entire grant!

Thank you!

“All we want for Christmas is our cousin!”

Raise your Glass foundation

Monday, November 26th, 2012

A.J.’s parents are launching the Raise Your Glass foundation to honor Dr. van Bosse and the work he did to get their son walking. You can read about it here. The following is my contribution.

I get air sick. I just wanted to start with that in case anyone is under any delusion that I enjoy flying 3,000 miles one-way from California to Philadelphia to see one specific doctor. My family lives five minutes away from the hospital that U.S. News ranked #2 in the nation for orthopedics. My daughter, Laelia (LAY-Lee-Uh), was not only correctly diagnosed with arthrogryposis the morning after she was born, but also with the correct type of arthrogryposis, out of more than 400 types. Our pediatrician could not only pronounce arthrogryposis, but upon our first visit he produced a photo of himself and another patient with AMC–a photo affectionately on his desk. After hearing from so many other families I realize our story is rare for how easy we had it. If anyone was blessed with a working knowledge of one of the rarest conditions in the world right from the start, it was us. If we could have had our daughter anywhere in the world, San Diego would have been hand-picked.

Yet doctors gave up hope.

I can’t explain it. Well, it’s true that my daughter did not really move her arms or legs for the first year of her life. She also has extremely low muscle tone that one local doctor described as the lowest muscle tone that he’d ever seen in kids with AMC. Despite hearing that I continued to make appointments and try to get more help for my daughter. I must have been annoying because the head surgeon actually took my shoulders in his hands and told me to accept that my daughter was disabled. Then he left the room without signing the prescription for splints in my hand. It was for knee splints and the doctors were convinced that straightening Laelia’s knees would not allow her to be comfortable in a wheelchair where they predicted she would spend her life. Every doctor’s visit came with a wave of depression as we grieved the loss of hope. The last glimmer of hope to die was when we learned about an arthrogryposis clinic in Seattle from a friend who was willing to pay for us to go there. It was the final nail in the coffin when that orthopedic big wig gave up on our daughter after one visit. He would make the fifth pediatric orthopedic doctor to say, “Nothing to be done. See me in six months.”

We found out about Dr. van Bosse after we had already given up. I hate to admit it. Even when success stories were pouring out of Shriners in Philly, I was still skeptical. It wasn’t until our friend Cheryl and her daughter, Tracey, spoke up about their personal experience with Dr. van Bosse that we agreed to see him.

At this point I felt like an AMC expert. I was familiar with my surgery options, or what little there were. I knew all about splints, walkers, weight-bearing, wheelchairs, casting and stretching. I owned the AMC Atlas textbook. And my daughter had already been through two major surgeries and some tendonotomies before local doctors had told us she was “done.” I felt so certain she had more potential than doctors could see. So we went to Philly.

The trip to Philly was rough. So rough that I was praying the great and powerful doctor was merely just the man behind the curtain.

Instead I got to meet my very first expert in the AMC orthopedic field. I was impressed with a doctor who listens, examines and waits. But I’m not here to write about bedside manner, although I remain super impressed with a doctor who will email me back within 24 hours with answers to my medical questions. Dr. van Bosse introduced us to an entirely different  methodology   So far Laelia had only had soft tissue surgeries. We kept hacking at precious resources my daughter needed to move. Instead Dr. van Bosse introduced us to derotational osteotomies. And unlike the doctor in Seattle who first mentioned them but would only perform that surgery on patients who “deserved” it (his PT said Laelia’s muscles were too weak), Dr. van Bosse left his crystal ball of future predictions at home and focused on the issues at hand. The most important thing was to give her a chance and see what she did with it. And unlike others we’d seen, all surgical suggestions he made were backed up by evidence. I was shown my daughter’s x-rays and then x-rays of the same exact lower body contractures of other anonymous patients before and after the surgeries he was proposing. It wasn’t a “take my word for it” pitch at all. It was a course of treatment over the next few years with known results. Instead of, “Will my daughter walk?” my questions became, “When will my daughter walk?”

Hips before.

Right after surgery.

Hips after.

Knees before.

Knees right after surgery.

Knees now. Perfectly straight and aligned.

My daughter walks. (Now I’m crying as I write this.) Everywhere. Up and down inclines, around the grocery store, all over the house. Without a gait trainer. Without a walker. Without pediatric crutches. And recently she took a few steps without even her leg braces on. Having correct alignment allowed her to exercise and grow muscles in her legs we didn’t even know she had. I can’t begin to describe how her life has improved dramatically since she gained the ability to stand and walk, something she never would have done without Dr. van Bosse. My daughter was almost five when I had my first conversation with her about walking in the street, opening the bathroom door when I’m in there and running with scissors–conversations I was told we would never have. If not for Dr. van Bosse Laelia would be sitting on wide, abducted legs right now.

Doctors should never give up on children. Children are the very definition of potential. Dr. van Bosse is the very definition of excellence in care. And all my parent friends will tell you, he never gives up.

And I joyfully get air sick to see him.

Transitions are hard, but worth it.

Tuesday, November 13th, 2012

I am constantly amazed by how normal our lives are.

What? Stop laughing!

I  concede  that sometimes everything that can go wrong does go wrong. Insurance for one thing has gone wrong lately. We were suppose to be covered, but it had not been activated after my husband’s career change. Then we got the fun of getting denied for a trip to the casting clinic, a trip to the pediatrician, a trip to the ER, a trip to the pharmacy, a wheelchair order that had been in the works for over a month (which is now semi-permanently  stalled), Roland’s walker (we now have to borrow one instead), and a trip to the orthotist for the lift in Laelia’s shoe that allows her to walk. All in the same week. I admit. Those times suck the life out of us. But I think every family has *something* that sucks the life out of them if they let it.

But day to day my kids are active, happy and sweet. Normal. They will squabble like siblings–”don’t touch my crutches! I want that! Noooooo!”–but they also love each other. Last night Laelia was falling asleep before I got her in bed. Roland crawled up to her while I was removing her KAFOs and very gently reached down and gave her a kiss on the cheek. He said “ah uv oo,” which is what he says after he hears, “I love you.” Precious!!! Right after that he grinned and went to pick her nose, but I grabbed him in time. Stinker. ;)

Often if Roland is having a hard time sleeping in his crib Laelia will walk up to the bars and stick her face between them to make faces at him. I hear him giggling and I pretend I don’t know anyone’s up. ;)  Laelia has also taken it upon herself to be Roland’s personal English tutor. So far she has taught him “up,” “good boy,” “good girl,” “thank you” and “you’re welcome.” She encourages him a lot while he parrots the noises back to her. I love seeing him grin when she praises him.

So I guess I want to say that life is good and we are happy.

It’s been three months since Roland has been home. The transition has not always been easy, as adding a child to a family is often a difficult transition no matter who you are. There was a time when I was so worried about Roland’s transition from orphan to son, especially when I would see behaviors that made no sense to me. One of the first weeks he was home Laelia won an award at school for citizenship. (Oh I shutter to remember this story.) I had to go to the school to see her accept it in the morning. I had to bring Roland. The little guy had a hard time in an environment of children. I’m sure his institutional spidey senses were going crazy. I don’t know what orphanage connections he was making, but I do know he threw the biggest screaming fit through the first two children receiving their awards. He was bright red and screamed so much that he threw up a bit on his shirt. I had to leave the room as the other parents had brought video cameras and I was ruining their moment. Laelia was the third and final child and the teacher came to get us from outside and told me that we could just let Roland scream and she would talk loudly, but it was important I be there. Laelia had just been through a lot of transitions herself and was not reacting well to Roland’s screeches. She refused to go to the circle. (Did I mention she was getting this award for following the rules?) She simply said no and then planted her stubborn little feet. With Roland arching his back and swinging his arms and legs wildly I knelt down by my daughter and in my sternest voice told Laelia she would go to the circle (then lowering my voice to a dangerous level added) right. this. minute. She complied. Roland swung an arm around and clocked me in the face, my glasses went flying. Thankfully at this point he was only in two casts and not all four, so his arms were not the plaster punchers they are now. I had to hold his arms down which caused him to scream like someone was killing him. My ears were ringing. I didn’t know this little one well enough to know what soothed him yet and nothing was working. I got lots of nasty looks from other parents which was the real kicker. I realized that it looked like I had broken my son’s legs (which I got accused of by strangers that week) and now he was throwing a fit because I was a mean mommy. No one would believe the unlikely story that he had a joint condition and had *just* been adopted. I was dying for this dumb award to just be thrown at my child so I could retreat. A parent was still filming (why? shoo!) and Laelia got her award. But she had an attitude and pretended not to hear the adults. So I took her award and told her she could have it back when she’d earned it. One parent blocked my escape and asked if her son and my daughter could take a picture with their awards. Uggggggh. My son was now upside-down in my arms from squirming around and I had my neck craned back to avoid his kicking feet. “Quickly,” I snapped and then waited an eternity for them to finish while my daughter refused to smile. I was red in the face when I finally marched out of that classroom, crumbled award in one hand, screaming boy in the other. But a few steps outside was enough to get Roland to calm down and cling to me. I was so unhappy with him I didn’t even speak when he asked, “Dadoo?” (His way of saying, “Mommy?”) A guy walked past us and stared. I just thought,  What?! Ever see a tantrum before!   Then another dad walked by near the school gate and looked straight at his shoes. What?! Am I embarrassing you?!!  Then, I swear, a THIRD guy walked by and this one grinned and chuckled at us. What?! Okay that was a weird reaction. Roland is not even throwing the fit anymore, I mean he’s just sitting in my arms grabbing my shirt…. *gasp*

Yep my son had grabbed the front of my shirt and dragged it down to expose my entire (colorful) bra. I had just flashed every man I had walked past. When I realized this and grabbed my shirt up, Roland began to laugh. Yes laugh. He is lucky he’s cute.

See this memory was floating through my head last Thursday during my parent teacher meeting. Laelia and Roland played happily while the teacher went on and on about how wonderful Laelia was and how good she was doing. Roland didn’t scream once and when his toy would fall out of his hands he would say, “Uh oh,” to his sister who happily got it for him and lectured him to thank her each time. (“Day do!”) Roland seemed so happy and adjusted compared to our first classroom appearance. Now he was with his family and content. Instead of a stranger, I was a comfort to him. And my shirt stayed up to my chin the whole time. :)

I found out last week that my sister and her husband have decided to adopt from the Republic of the Congo. Their son will be an abandoned (most likely starved) little guy. She was on the other end of the phone while I cried that my son wouldn’t stop crying when he got home. She was there when I told her that I had to go out one morning to a doctor’s appointment and my son was now stimming like crazy and wouldn’t make eye contact. And if I was going to scare her away with how hard a transition can be, then maybe getting my son in four casts (plaster punchers) may have done it. :)

But transition is an easy price to pay for a little human person being added to the family. And realistically our eight week transition was not that long. Right now both my kids are enjoying Thanksgiving break and playing together. Roland can pick up his own toys after they are done. They both cleaned their room the other day by themselves! Laelia has been doing more physical feats with Roland around to encourage her (read: chase her around). I’ve seen Laelia “fast walk” (run) without crutches to avoid a rolling Roland bulldozer. Roland has done more physically too, but it’s not like he had much of a chance in an orphanage to begin with. It’s fun to see your son become a well-adjusted typical two year old in the space of a few months. It’s fun because you know it wouldn’t happen if you hadn’t adopted them, so it gives you this proud feeling of accomplishment even though you just provided the environment and your kid did all the work. :)

I can’t describe how happy I am that we adopted. (I literally can’t get computer time enough to talk about all our joy.) I can’t tell you how happy I am that my kids get a cousin from the Congo. Life is full. It is good. Adoption is worth it. Transition is worth it.