Eleven years ago I traveled to Egypt and Jordan. I saw the pyramids and Petra and the Dead Sea. It was amazing. But maybe I’m going too far back. Let me start over.

This last week my dad and Christina came down to help us fix up the house. You saw the pictures of Laelia and Roland’s new room in the last post? Well my dad built that bed and the night stand and made a 36 inch crib fit in a 34 inch space by taking it apart and putting it back together again. And he fixed our shower (that my darling husband cracked) and built anything from Ikea that confused me and put up a giant mirror in the dinning room. Oh and they bought us a grill. Here’s a picture of Laelia helping Grandpa set it up. She’s reading the directions upside-down because she’s that good.

So where am I going with this? Well one project I got done while Christina did Laelia’s walking therapy and dad fought with my shower is that I got to set up a bookcase (*cough* okay dad set it up) and decorate it.

Decorating one bookshelf sounds simple enough, but I went through boxes and boxes of pictures and other goodies to fill it up just right. It took me all day and I left a big mess that my scavenger cats pawed through all night.

Ta da!

The top shelf is my husband and me… and our embarrassing prom pictures. WE WERE BABIES! The second shelf is our family picture (soon to include Roland). The bottom shelf is all our photo albums. One up from that is a shelf of Laelia stuff–a photo album, splints, hospital bracelets, baby footprint (once they were corrected enough), baby handprint (once we could spread her fingers), orthopedic shoes, etc.

Then there’s that middle shelf. I decided to put some bits and pieces of my world travels there. A long time ago this Mama had some wild times.

Eleven years ago I went to Jordan. Even though I lived there for a few weeks, the only real souvenir I have from Jordan (besides pictures) is that awesome stamp collection on the right.

This is something I got ELEVEN years ago. That was well before I was married and well before I had a child with arthrogryposis and another on the way with arthrogryposis.

I got this souvenir during a young and interesting time in my life.

Let me back up one more time.  Just the other day I was thinking about how things in my life seemed directed towards me having these awesome kids with arthrogryposis. I mean, I’d NEVER heard of arthrogryposis before my daughter was born. Even after I’d heard of it I couldn’t pronounce it for weeks. But lots of things prepared me for my children. Like the fact that I worked in respite care for a child with DS and then later in life used respite for my daughter. Or the fact that I was a special needs aide in a public school and now my daughter has one of those. There are just a ton of things in my life that have led me, silly ignorant me, to be a well-equipped mother for my daughter and son. It’s amazing. It’s as if my life has been directed all this time without my knowing it.

You see I truly believe in the eternality and omniscience of God. He knew I’d have a daughter with arthrogryposis. He knew that was coming. He knows the end of things before the beginning takes place.

“Only I can tell you the future before it even happens. Everything I plan will come to pass, for I do whatever I wish.” –God (Isaiah 46:10 in the New Living Translation)

“It is beautiful how God has done everything at the right time. He has put a sense of eternity in people’s minds. Yet, mortals still can’t grasp what God is doing from the beginning to the end.” –King Solomon (Ecclesiastes 3:11 in God’s Word Translation)

Now let’s go back to my Jordanian stamp collection. Check out that stamp in the upper right hand corner.

Notice anything? Club hands maybe? Club feet?

That my friends, is a boy with arthrogryposis.

My eyes lingered there because that’s how my daughter stands.

Then I recognized it from the back cover of my arthrogryposis textbook and gasped.

I was in the middle of an important conversation with my husband, mid sentence, and I gasped.

The Italian painter, Jusepe de Ribera, painted this in 1642. Jordan put it on a stamp. I bought it.

I bought it the year my mother was killed. The same year I ran away to the Middle East to try and distract myself from the pain. I ended up with people (American people) who were emotionally, verbally and physically abusive. Oh and I got back from the Middle East right in time to watch the World Trade Center go down. 2001 was a hard year. Even then in the darkest year of my life, God saw me. He saw me and he knew life wasn’t over like I thought it was. New life was coming. And she would look just like the picture in the stamp I flippantly bought.

Then just when I needed to see it, to prove that arthrogryposis existed outside my small world, there it was.

Cool, right?!

If you saw the last blog post you saw the state of Laelia’s room. We’ll call that the before picture. What you can’t see in that picture is that buried under all the stuff is a cute little girlie room with pink items everywhere. Laelia’s favorite color is red, which conveniently doubles as a “boy color.” So over the course of two days I got out a small can of red paint (a very unforgiving color when spilled) and went nuts. Slowly we went from pink to red. (Hoping to switch the maroon curtains with something either true red or neon green down the road.) And here are the results!

The crib is off to the far right. I painted all the dresser drawer knobs red.

Switched out the pink  baskets with red ones. I also painted the mirror edge and the top of the plastic bin. Red red red!

Roland’s crib. My first attempt at painting letters from stencils.

My dad installed a ceiling fan because this place gets REALLY hot. I made it red.

Here’s a video of her red room:

And here’s Laelia enjoying her new room! Awwww!

Laelia loves her new red room!

Hi Grandma!

My name is Laelia. We’ve never met but I’m your grandkid!

 My name is pronounced LAY-Lee-Uh. When mommy thought it up she showed it to her family to make sure it was pronounceable. They all pronounced it fine. Little did we know that a litany of medical professionals would have trouble with it. Blame Grandpa, a.k.a. Mr. Can Pronounce Things.

Oh right, and I have arthrogryposis multiplex congenita. It’s the amyoplasia type. It doesn’t affect my vision. The glasses in my photo are daddy’s. But it does affect my ability to put them on. This was a triumph for me.

This is my daddy!

Yeah it’s the guy you picked out for mommy’s sister to marry. The guy you picked out for my mommy was never going to happen. Sorry Grandma. But your other daughter did marry that guy’s best friend. So you weren’t far off. My mommy threatens to be as embarrassing about boys as you were. I’m afraid.

But anyway, I wanted to wish you a Happy Mother’s Day!

I’ve been wishing all women a Happy Mother’s Day all weekend, including teenagers. So far no one at the mall has corrected me.

I went to Cubbies this year. I know you would have liked that since you were an AWANA leader for years and years. I may do Sparks next year, but next year they do racing games and I don’t know if that will be up my alley. But I enjoyed Cubbies very much so we’ll see!

Oh and my mommy wants you to know that all your Sparkies sang the song you taught them, hand-motions and all, a week after you went to Heaven at their AWANA awards ceremony.

I ask a million questions all the time, so eventually I figured out that you went to Heaven right after Mother’s Day on May 15th.

I found this out after I learned to walk.

I started really walking at four. One of the first things I did was walk right into the road. My mommy got really upset. That’s when I learned cars can hit people and then they go to Heaven, just like you did.

We talk about car and road safety a lot. This is my new car seat because I’m such a big girl. I take a lot of trips to a place called Philadelphia and this is easy to ride in and easy to carry!

Um… These are my balloons. It was very important that I show you my balloons. Very important. Here they are.

This is how I like my room. Mommy said it would look familiar to you. I do believe you told mommy to have a child just like her and this room is a result of that. I pulled out all the books and puzzles and blankets myself! The very first time I did this my parents were so happy that I was so mobile! Now they are less thrilled.

This is my grandma Christina! You would have liked her a lot. Mommy told me how before you went to Heaven you told Grandpa to marry someone good. She makes birthday cake. So obviously Grandpa followed your instructions.

She’s holding Levi. He’s my only cousin. But you have more than two grandkids… you are going to have THREE!

This is my baby brother. We get to meet him in eight weeks. He’s not little like this anymore, but we don’t have another picture of him! He’ll be two in October. And I’ll be five in October! I’ve been promised a giant double birthday party. With cake.

Roland has two moms! One gave him life and the other will give him love and a home. It’s just like I have both you and Christina as grandmas! One to make me possible and the other to give me love and a family.

I’m a very happy kid. You’d like me.

Happy Mother’s Day, Grandma!

]]> http://www.laeliasky.com/2012/05/13/grandma-joy/feed/ 9 http://www.laeliasky.com/2012/04/24/laurel-has-a-family/ http://www.laeliasky.com/2012/04/24/laurel-has-a-family/#comments Tue, 24 Apr 2012 20:47:16 +0000 admin http://www.laeliasky.com/?p=3369

Oh my goodness! Did you hear? Do you know?! I got the news and just started crying! A family has stepped forward and decided to adopt precious, deserving Laurel! If you remember I blogged about Laurel here (and here and here) and my heart was breaking for her. Laurel is 15 and turns the dreaded 16 in August. The crime of turning 16 would mean she would be permanently hidden from society in a mental institution with no hope of a family or love (because she would be no longer eligible for adoption) or she would be thrown to the street to maybe live a very shortened and miserable life. But now she will go to a mom and dad who love her! Oh I’m so happy I could burst!

Every night we pray for a few specific orphans. Laurel is at the top of the list. The day Laurel got a committed family I didn’t tell Laelia right away. During prayer time that night when Laelia was praying for the orphans that’s when I broke the news. (There’s nothing orthodox about our prayers so interruptions like this are common.) Laelia grinned so big!  ”She gets a mommy and daddy just like my brother? Even though she’s big? Yay!!!” Laelia was so happy and we thanked God so much for setting this in motion for this precious girl.

Two other orphans on our short list are Victoria and Igor.

Victoria

Igor

They are in the same country as Laurel and are living in an institution, although they are several years younger than Laurel. Right now (April 24th-April 30th, 2012) there is a giveaway going on for these two that I’m a part of. I would really like it to be a huge success so that families will know that we support these children and will be encouraged to adopt them. And then Victoria and Igor will get adopted and the whole community will rally behind them. Then they’ll grow and bloom in their new homes and become doctors or professors and one day when accepting the Nobel Peace Prize they’ll mention that it wouldn’t have been possible without a silly fundraiser/giveaway. Would you help me? The prizes are pretty awesome. If nothing else look at the cool prizes and share this on your blogs or Facebook. The first prize (for Tea Collection clothes) shows a model who has arthrogryposis! I’m pretty excited about this. But the last prize really has my heart.  Go see!

Check out the giveaway here! Thank you so much!

Laelia can now stand on one foot without KAFOs while brushing her teeth (which she also does all by herself).

Laelia can now sit down from a standing position when a wall is handy (even when we’re ignoring her). I can’t tell you how wonderful it is to not have to drop everything and go sit her down myself.

And lastly Laelia can stand up all by herself using our one and only stair! This one was hard to re-learn from before because she’s taller post surgery.

YAY LAELIA!!!

Happy Easter!

Seeing Laelia upright when I wasn’t the one who put her in that position was a slight shock. Seeing she took initiative and did all that walking herself was priceless. I’ve never been a prouder mama.

A couple days later we did a video of this. It’s a little long because she wanted to show everything and wasn’t in any hurry as she was trying to avoid nap time. Enjoy! (If it doesn’t show up just click here.)

Also as of April 1st (this should be a joke but isn’t) Laelia has been completely potty trained. It took a long time for her to decide that she was too old for pull ups. This has been a long road for us. I asked a bunch of other AMC moms about this delay of an important milestone, but they all (with one exception for medical reasons) did not have the same problem. Great, it’s just my stubborn daughter who just wont do it. (It doesn’t help that she has MORE independence in Pull Ups than relying on grown ups to take her on and off the potty.) We actually thought there might be a nerve/bladder issue, but the doctor didn’t want to do the test for that until Laelia was five. But I think once she gained a bit more independence with walking then she wanted to do more independent things. I still have to put her on the toilet myself and she can’t wipe yet, but now at least she goes 100% in the potty. To celebrate we got her some Dora underwear from Costco. Now I have to convince her school to put her on the potty when she’s there. (That has been part of the problem.) But still we couldn’t be happier!

Yay for independence!

She’s been going to preschool since she was two years old. It started at two hours, twice a week and now it’s up to four hours a day, five days a week. Laelia loves to learn. She loves to spell letters and learn songs. She loves school. And her teachers love her. I always get glowing reports. Even Laelia’s doctor says she should be a very smart lawyer or professor when she grows up. I believe it.

Lately Laelia has shown us even more abilities than before. It started out when her teacher started doing flashcards with her. The flashcards are suppose to help her be able to sight read. But without being told what the words were, she was getting them the very first time! She went from sight reading less than five words to sight reading over 30 words!

So we’ve been really impressed with Laelia obviously. She’s the smartest kid alive in our opinion. But one of her teachers told me that it probably wasn’t sight reading so much as memorizing. To test it out they didn’t show her the cards and just asked her what the next word was and she told them correctly every time. The teacher then concluded that Laelia just memorized the list of words. Still memorizing is pretty impressive so I was still thrilled. Then the teacher mixed up the cards and without showing Laelia what they were asked her what the next card was. But to everyone’s surprise, she told her correctly! Not just once, but ten times in a row!

Next her teacher started to get out flash cards with pictures on them: stars, hearts, circles, squares. Without showing Laelia the card they asked her what was on the other side. She got every one of them right except she called the picture of a club (like on a deck of cards) a “flower.” One of the teachers laughed and said it was a joke, but the other one gave us a number to call and told us that Laelia was very special.

The number we called was for a class on neural cognitive processes. It cost money. And it was complicated. To quote them from their website here in San Diego: “Empathy processes can be explored within a three-level model distinguishing neuronal, cognitive and intra-psychic operating levels. Cognitive and intra-psychic processes need not to be collapsed. Neural systems involved in empathy are described through neuroimaging and event-related potential (ERP) studies. On the cognitive level, empathy is threefold: procedural, semantic and biographical. Automatically activated since birth, procedural empathy processes are deeply enrooted in visuo-motor response capacities and responsible for automatic mimicry. These processes might rely on a prior sensori-motor contagion system.” Bla bla bla. This class was for extreme parents in my opinion, and worst of all, there was no childcare offered!

But these guys redirected me (after waiting on hold FOREVER) to the people who dealt with preschool children, and finally we spoke with Dr. Prevorkien. She said that Laelia qualified to have a free brain scan! I told her we were really busy with Charley’s recovery from surgery and everything, so she offered to do it for free (yay!) and out of her office. I made sure my husband was comfortable at home and then loaded Laelia into her car seat and headed over to her office. The brain scan machine was really cool!

Sorry I’m taking this with my camera and you can see a glare on the screen.

Apparently all the orange areas of Laelia’s brain are working a lot better than they should be. Dr. Prevorkien said this exact thing was linked to psychic ability and can be exercised for maximum effectiveness.

So for the last week we’ve been enrolled in Dr. Prevorkien’s preschool and Laelia is doing really well. Laelia has been practicing hard and is now a Level 2 Laser Lotus. Besides reading cards Laelia can now also talk to animals.

“Hello Mr. Lizard!”

“Hello! …We are your overlords!!!”

Next we’re signing her up to do a hotline and make us some money. Not going to let my little psychic genius go to waste!

Happy April Fools Day everyone!

So yesterday afternoon I put Laelia on the potty and stepped out of the room to give her some privacy. A short time later Laelia starts screaming, “MAMA! MY LEGS! MY LEGS!!” I panicked and ran back as fast as I could. Visions of her falling off the toilet or twisting her leg filled my head. As my friend, Anna, put it, “Elapsed turnaround time to Mama freakout– .3 seconds.”  We have a chair placed in front of the toilet that her legs rest on so really there’s little chance of these horrors actually happening. It turned out she was just sitting there staring at her legs. I asked her what on earth was wrong and she said, “Nothing’s wrong, Mama. Look at my legs! They’re so straight and beautiful!” It was the first time she had just sat there (with her pants pulled down) and stared at her legs. It shocked her to see her body so straight! She used her hands to press one knee down (which flattened her leg against the chair) and said, “This one is very straight, see?” Then she pushed on the other knee and said, “This one is also very straight!” Then she sat there playfully rocking her feet back and forth in a happy little motion while starring at her legs. “They are beautiful. They are straight like yours Mama!”

The whole vain display was the most precious thing I’d ever seen. She simply cooed.

But later that night is the real story. Once again the scene takes place in the bathroom. It started out an accident. I’ve not been getting a lot of sleep lately as my husband is up every three or four hours and my daughter is up once or twice a night with AFO issues. Somehow miraculously that still leaves me around four or five glorious hours of sleep a night. But last night we were running late to bed and it was cutting into my precious sleep. I was exhausted but Laelia had not brushed her teeth yet. Like a zombie I carried her to the bathroom and stood her up as we usually do on the chair so she can reach the sink. She was fussier than usual so I kept an arm around her waist thinking she was just scared of the height or the wobbly chair (or… something… whatever… tired). Eventually she said, “Mama, are you holding me or am I standing?” And the sound of awe in her voice was just different enough for me to realize this was a big moment for her. I woke up enough to see that Laelia was not wearing her KAFOs (knee braces)!

*GASP*

I have never stood her up in only AFOs that way, especially not with the hardware in her poor knees. I simply hadn’t noticed! She was merely in AFOs which only stretch her feet and do NOT hold her knees in place! Good thing I didn’t let go! My arm immediately tightened around her waist with the realization.

Okay for one thing we did not think it was physically possible for Laelia to stand without knee braces because she’s missing the muscle in her legs to hold her up. Her knees have always buckled under the weight of her own body. Even when I thought of my girl walking around one day I saw her in knee braces. (I know adults with AMC who wear knee braces every day!) But she seemed pretty steady so I said, “Laelie sweetie, do you want me to let go?” She hesitantly said, “Slowly please.” So I lowered my hands to her hips and then slowly lifted my hands off her until she was standing by herself! And she just stood there frozen for the first time ever without knee braces. Whoa! I hovered over her worrying that her legs would buckle any minute. In fact bending her knees is still really uncomfortable for her (even though she can do it) so I was scared she would get tired or weak then fall and bend them and scream her head off. But after a solid minute of hovering Laelia slowly became unfrozen. She started to test out her legs a bit. Then she started to stand up even straighter (on her own!!!) instead of draping herself over the sink. She raised herself slowly all the way up until she could see her little face in the mirror. She then said, “Who’s that standing? Who’s that pretty girl? Hello Laelia!”  Hahahahahahahahahaha!

My funny girl!

My theory is that when her knees were bent at around 40 degrees it was really hard to stand up. (Try it yourself! It’s hard!) That bend takes so much more muscle! I take for granted the fact that I can lock my knees and just stand for long periods of time with ease. Now that Laelia’s knees are straighter (even though she’s still 10 degrees shy of perfectly straight) she can lock them in such a way to make standing easier. So with the same amount of muscle she does so much more with it!

I’m so thankful we switched from San Diego doctors who have a soft tissue approach (which would weaken her) to Dr. van Bosse who has a surgical approach based on moving/aligning the bones. AMC kids have such little muscle as it is, we don’t want to lose it! We went through a couple of soft tissue surgeries (with a surgeon who said he did not believe my daughter would walk) before finding Dr. van Bosse in Philadelphia. Dr. van Bosse immediately showed me how osteotomies would make her body align correctly. Because of his vast experience with kids with arthrogryposis I didn’t just have to take his word for it, I saw x-rays of kids whose lower bodies looked just like my daughter! Slowly we began to trust a doctor again. By the time knee surgery came up we were ready. And now she is beautiful and straight and functional. (And still very vain. )

So thankful!

]]> http://www.laeliasky.com/2012/03/28/look-mom-no-kafos/feed/ 7 http://www.laeliasky.com/2012/03/25/laelia-inspires/ http://www.laeliasky.com/2012/03/25/laelia-inspires/#comments Mon, 26 Mar 2012 00:35:15 +0000 admin http://www.laeliasky.com/?p=3314

I can’t imagine our lives without Laelia. For one thing I would not be as good a person. I would not be as patient. I would not be adopting a little one in a difficult situation. I would not have met the wonderful people who make up our AMC family. We would not be raising awareness for orphans overseas with AMC. I would not care as much about what happens outside of myself. I went from the broken mother who held Laelia in her arms and grieved deeply four years ago to someone amazed at how God has used this little girl to do great and mighty things.

Her daddy wouldn’t be as selfless. He would not be as good with children. He would not be as giving with his money. And he would have never considered going through something scary like surgery to save the lives of strangers.

Laelia is God’s gift to the world. All those surgeries weren’t for nothing. Laelia’s daddy had never gone through surgery before, and was scared of it, but knew if Laelia could do it then he could do it too. And he did.

Here’s the link to the story in the newspaper.

Here’s the link to the story on Channel 6.

Here’s the link to the story on KUSI News.

Here’s the link to the story on Channel 10.

Here’s the link to the story on Channel 8 (which is also embedded above).

The TV news stories take a few minutes to load.