It’s been fun watching this go viral among our AMC family on Facebook.

Picture by Chelsea Powell

Words by Tracey Schalk

Edited by me

<3

Someone asked me to show pictures of Laelia brushing her teeth. She’s had to brush her teeth by herself for preschool since she was two. She would sit on the ground and use a big bean-bag chair to rest her arm on while brushing. Recently we put a chair in the bathroom so she can stand on it in her KAFOs or kneel on it in her AFOs to reach the sink. She can reach to turn the water on and off too when on the chair, and uses the chair’s back to prop her arm. Us parental super-geniuses just figured this out. We’d been holding her up to the sink for years. Ugh!! Instead of cupping our hand under the water we finally decided to give her a paper cup. She spits, grabs it with her mouth to put water in her mouth, swishes it around, and spits again. She’s totally self sufficient! I realize I’ve been too busy and have just done it for her. No more! Super teeth brushing kid does it herself now!

Laelia’s newest responsibility includes watering her flowers. She has two flowers, one she got for free as a present from Home Depot on her birthday. She loves them. It got cold so we moved them close to the air vent for our clothes dryer. Now they are still blooming despite the cold! The school bus drops Laelia off on the street every weekday afternoon, and she walks up our long driveway by herself (with her walking sticks) to water her flowers before heading inside. (All supervised by me obviously.) I know she over-waters them, but I can’t seem to tell her no. I love this mobile, standing kid! A Mama could get used to this.

Funny story: Laelia snuck up behind me the other day and shouted, “SURPRISE!” It genuinely startled me! I jumped in my seat! Haha! I had left her doing weight bearing (standing) at the table with a snack. To surprise me she had to walk to the other table, grab her walking sticks off of that table, put them on by herself and walk with them across the living room to the den where she found me to surprise me! Wow! My kid is mobile AND sneaky-stealthy!

I don’t get work done in the den anymore when she’s home. Life with my daughter just got a lot more interesting these past few weeks.

As a New Year’s exercise I decided to see how far we’d come in a year. Last January we had just had Laelia’s casts removed after the biggest surgery of her life. And her legs were in the correct position for the first time in her life. This was the surgery I’d heard about from two doctors (one in San Diego and one in Seattle) but they refused to do it for my daughter because to quote them both, “Let’s get her in the best position for sitting in her wheelchair.” (From now on I’m going to respond to that with, “Let’s get your face in the best position for smacking.”) So we flew to Philadelphia to the “AMC doctor” (Harold van Bosse) after many people referred us there. We got the surgery done, and it was successful in turning her legs the right direction. But going for our follow up appointment in January was a life-changer.

There were eight crazy things going on in our lives last year.

1. It was vital for Laelia to get more therapy to maximize the surgery results. Every time we went to Children’s hospital it was an $80 visit. Our insurance had changed so I lost my patient advocate/case manager. I started the months-long process of setting up California Children’s Services for free OT and PT through their medical therapy unit. This meant I had to cut ties to our expert OT and PT to do it as they would not allow her to see them at all if we got into the program. It took some paperwork and lots of hassle to prove Laelia had arthrogryposis even though one glance will tell you she does. I was told I did not qualify. Then another person said I did and to try again. I needed a doctor’s referral, but the nurse  said I was stealing therapy from other poor children who this program was set up for. I miserably asked for it anyway.

2. Laelia’s feet were swelling and it was so hard to deal with the painful shoes. We thought Laelia’s foot was broken. She didn’t sleep through the night. Eventually the shoes cut a hole in her foot and it got infected. She was on antibiotics and the ulcer was hideous.

3. I was suffering from debilitating dizzy spells. I went to several doctors, got an MRI and got my ears checked. Nothing. One vertigo attack (I’d call it a “spell” but that seems too mild) was so bad it sent me to the emergency room.

4. It became clear that I needed to stay home and do Laelia’s therapy full time if I wanted to get her walking. It was clear I would have to quit my job but we couldn’t afford to.

5. We were carrying Laelia up several flights of stairs to get to the front door of our apartment. (There were four sets of stairs from the parking lot down below, eight sets to reach the street above and our mailbox, and one long set of stairs to reach the bathroom once inside our apartment. This was not wheelchair friendly to say the least.) Between our parking lot and our front door was a gate. I would go prop it open with a rock, go back to the car to get my daughter, and carrying her with both my arms in a full lower body cast I would reach the gate to discover the manager had closed it and thrown the rock over the fence. He said he didn’t care why I was propping the gate open, propping it was against the rules. If I quit my job to stay home and do my daughter’s therapy we would not be able to afford to move outta here.

6. We were having major problems with discrimination at Head Start on Home Ave in San Diego where my daughter did preschool. Even though it was government funded and had services for special needs children, it was hard to work with the director. The teachers were wonderful, but the director was not. They kicked my daughter out of school after she had surgery. The director said it was too much on her staff and complained that Laelia came back in a wheelchair and was sore. She complained my daughter could not walk and was hard on them. She finally put her hand on her hip, cocked her head and said to me, “Just tell me what you expect from us? What do you want us to do for you?” I had not asked for anything at this point. It was an attack. I hated entering that building and was stressed out every time I picked my daughter up from school.

7. My daughter couldn’t walk.

8. We found a little boy on an adoption website who looked just like our daughter. We started advocating for him. We were far from being able to care for another child, but I hurt for his situation. For all the hardships that were going on (our lives felt like they were falling apart), they paled in comparison to what he was going through and what he faced.

~

Step into the New Year!

~

1. After a couple months we got CCS services set up. We have seen them twice a week for the last year. It’s free. We qualified for their MTU (medical therapy unit) based solely on Laelia’s diagnosis. (Which is why it had to be officially verified which took forever.) CCS also has other programs and services for low income children which we were not asking for. This explains why I was told we did not qualify and was harassed about stealing services from poor children. Despite the hardships to get into the MTU, it’s been a great experience and Laelia has THRIVED!

2. Laelia got used to her shoes. Her feet are beautiful and straight. You can still see the faint red circle of where her ulcer was, but it’s pain free. She started wearing KAFOs too and tolerates them. Every now and again she’ll have foot pain issues, but they’re nothing major.

3. I had one vertigo spell during Laelia’s November pin removal surgery and it surprised me because I had not had one in months! I haven’t felt one since.

4. My company gave me a work from home position. I have a routine where I do all of Laelia’s therapies at home and go to all her school/community meetings around my work schedule.

5. A lot of miracles worked out and we moved into our new home last April. A missionary team helped scrub it out. Volunteers from a local church put in a wheelchair ramp. My dad built a shower and installed a light switch and door mechanism that Laelia can use herself. We furnished the entire place for under $800 with used stuff and hand-me-downs. It’s huge and it’s beautiful. It’s home.

6. Laelia was the last special needs student that darn school ever saw. The special needs program pulled out of there because, well, we all know why. We moved Laelia to the Head Start program off Balboa Ave. It’s been WONDERFUL.

7. My daughter now walks without a walker or crutches. She walks. Our jaws just dropped when she took her first tiny shuffle steps in August. Then a couple months later she had a walking party to celebrate. Then a couple months after that she turned away from me and walked off without a walker or crutches. My child walks.

8. He was our son. We’re adopting him. But without the top seven miracles working out we would not be in a position to rescue him.

Wow, what God has done for us in one year is amazing. It’s incredible. And it’s a ton. And it’s exciting because I get to see a bit of what had to work out, all the things that had to get better, for us to bring another child with arthrogryposis home. The pokes were painful, but the needlework is beautiful.

We had a great Christmas and New Years! Here are the random pictures. Most of these pictures were taken by other people after our camera broke. We have bad luck with cameras!

Playing the piano.

Jumping rope. (Even though Laelia can’t jump yet.)

Making shapes.

Playing with Grandpa!

Getting ready to open presents!

After our 8 hour drive up to San Jose.

Showing off walking for Grandma and Grandpa.

Laelia’s cousin Levi steals her parents for a bit!

Laelia’s cousin Abby!

Food!

Cousins Abby and Gracie!

Playing spoons. Laelia’s mommy being super competitive.

Daddy cuddles.

Look at these goofy two!

Grandparents holding two of their three grandkids.

Family!

Grandpa cuddles.

Snake cuddles!

Laelia decided everyone was getting cookies for Christmas this year. So for the last few days we have been going around delivering cookies to our friends! (Breakfast is served!) Later Laelia said we should gift everyone with cookies all the time because we love them. Awwwwww! Then she added, “And maybe they can share with ME!” That’s my girl.

So this is Laelia’s last Christmas as an only child. (Cross your fingers!) And we had a thrifty Christmas because we are saving up for her brother’s medical costs and ransom. Plus her actual Christmas present was her walking sticks she got earlier this month. But she thought it was an extravagant Christmas because, according to her, the presents cost “maybe eleven or something!” (Asked if that’s a lot she loudly answered, “It is!”)

Yes it’s a cookie. But it’s a cookie she can eat FOR BREAKFAST!

Click here for the video of her opening her stocking. It was filled with rocks painted by our friend Lauren. She played with them for FOUR hours. (Then she begged to sleep with them at night.)

Yes that’s a hammer. Her grandparents got her some geodes (yes the child loves rocks!) that you break open to see the crystals inside. So we got out our hammer, wrapped it up in tissue paper and let her open it. She was all, “It’s a hammer! Yay!” She was excited even though she had no idea what it was for. She played with it for quite a while. Ah four year olds. Then she made Mommy go outside in her slippers and break open all her geodes.

She also got some bubbles that I found when cleaning out her closet. Seriously this kid would have been thrilled with rocks from the yard and her own junk as long as it was wrapped up and she was the center of attention. I wonder if we’ll get away with this next year.

But don’t worry, grandparents and friends made up for it plenty.

Oh and Laelia said thank you without prompting for each and every gift. *Melt my heart!*

And to figure out who she’s talking about go here.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Laelia walked into Cubbies on Sunday to the applause of her three- and four-year old friends. It was the sweetest thing! She had waited eight days to show off her walking skills at club. Laelia can also now STAND for the pledge of allegiance they do every week! I’m learning more and more what a useful and wonderful thing standing is. (And also how our whole culture is centered around certain abilities.)

Laelia took 50 steps after PT on Monday with her walking sticks. She stopped at the drinking fountain, not because she was thirsty, but just because SHE COULD! She played with the nobs for a while before moving on. In the past she has had to beg me to hold her up to the drinking fountain. I rarely do because of my back. And I think the years of simply walking past them has sparked a fascination with them. Her pure joy at this level of independence was so satisfying.

Before Laelia would say, “Carry me! I don’t want to come to you. Please come pick me up!” Now she says, “Mom! Don’t hold my hand! I want to do it myself! I don’t want to sit. I want to stand! Let’s take more steps! Look at me!”

I know there’s more I need to be working on with her (she can’t stand up herself but has to be put into a standing position for one thing), but right now I’m stepping back and just basking in her newest accomplishments. Before I would say, “What’s the next thing to work on and worry about?” Now Mommy is saying, “She did it!”

My husband emailed me, “Hey did you know our daughter can walk? =] =] =] =]”

It’s just thrilling every time I remember it. I can’t even describe it! Merry Christmas to us!

Laelia has been standing without assistance (using only her leg braces) since Saturday night. Since then I’ve taken pictures, marveled, took her to PT to hear her physical therapist squeal, and thanked God a ton. It’s been great!

But since this is all so new the implications of this new ability didn’t sink in right away. Last night they did.

The surgical site on Laelia’s left leg has a red mark on it so we took her to Rapid Care a few weeks ago and they said it was fine. But the right side is completely healed and the left side is still oozing and bright red so I dragged her to her pediatrician’s office last night. Long story short, it’s still fine. No infection. That’s not the point of the story. Here’s the point: When you take your child to the pediatrician they have to weigh them.

Laelia has had to use the infant scale at the doctor’s office her whole life. She’s terribly outgrown it as you can imagine and she’s at the age where it’s embarrassing to use. Even though she has been able to stand while leaning over something for a while, you can’t do that with a scale! You can’t even hold Mommy’s hand! You have to stand all by yourself without a walker or bar or crutches or anything.

So last night for the first time in her life, Laelia stood on a scale. By herself.

It’s such a little thing, but I’m blubbering over here. My baby can stand! *sobs*

We are beyond speechless tonight! Such a wonderful gift! We thanked God during prayer time for being an awesome Daddy and cheering us on these last four years. The progress Laelia has made in one day is amazing! I am so ecstatic right now! I’m bursting! Such joy!

Can you believe this?!!!!

Walking in a walker!

Rolling on a ball!

Beating us at cards.

She knows how to play Go Fish and Uno now!

Spelling her own name and writing it herself!

Playing the “geetar” on her shirt while Davie plays the real one.

Sad party! Laelia evokes all sorts of emotions in the menfolk.

Spying on the adults.

Reaching her face!

Did I mention that one doctor said that she would never reach her own face?

Hey doctor! You think that shell got on her nose by magic?!

Mommy even cuts up her sandwiches. Life is good.