Laelia Sky

First night in a big girl bed!

But she looks so little in it!

Lali is beaming at the camera while daddy tucks her in.

My little girl is sleeping in a real bed tonight with a pillow and sheets! *sniff*  Her first real bed! And she is completely dwarfed by it! :) 

We had to take out the box spring to make it low enough to the ground to be safe, but this hilariously meant that every time Charley or I sat on the edge of her bed we created a small sinkhole that Lali would slowly be pulled into.  

We also had to leave off her Dennis-Brown bar (that connects her AFOs) since I didn’t want her to attempt to scoot off the bed in the morning and get stuck.  In my head she sleeps all night tonight like a good girl, and then instead of yelling her usual, “I’m awake! Come get me!” in the morning, she instead decides it would be more fun to scoot off her bed and go to her bookshelf and let her parents sleep in! 

But if at midnight I have to pull that child out of her closet then she’ll be in so much trouble! 

Laelia is a big girl now. *sniff* And she needs a big girl bed. *sniff sniff* The crib would have lasted many more years (in fact I could probably fit a teenager into that thing and don’t temp me!), but I wanted her to feel a sense of independence and growing up. She hit some major accomplishments this last year that has allowed us to even consider a big girl bed: successfully sliding off the couch, scooting around on her bottom and sitting up from a lying down position all by herself.

And it’s not like we had to go out and buy a bed; we had one already–Mama just had to put her in it! 

*sob* My baby! *sob* :)

Part of the reason I put it off for so long was due to my loathing for all things “growing up”: from normal things like potty-training or (the pressure to start) walking to emotionally-crazy things like becoming one year closer to leaving Mommy.   The other part  of the problem was that I wanted to be there when she woke up for the first time in her new bed. With our staggered schedule, I leave for work before the sun rises, let alone the child, while Charley is there for Lali in the mornings yet gets home really late. So the switch had to take place on a weekend.

*Side note: Once school starts at the end of the month, we’ll have more time all together as a family!

Tonight I asked her if she wanted to sleep in a real bed. She responded enthusiastically, but that was probably because she thought this new arrangement would somehow put off her bedtime–as any last minute, evening plan does. But she went down without a fuss and grinned for the camera as I documented the moment.

Now if only I could use this gift of big girl bedtime accouterments in exchange for bribing her into staying two years old forever… hmmm…  

Once again Laelia does something she’s never done before! Something we didn’t know if she’d be able to do! Something doctors said wasn’t likely or guaranteed to happen! She’s standing on her knees all by herself!!!

Celebrate with us!

And here’s the video of how she got there all by herself!

Grady

So a while back I posted a blog about this great little boy who needed a family. He is on my heart a lot. In fact we briefly looked into adopting him. That’s affordable and easy, right?  Um, no.

The other day when I found out that a family was interested in adopting him I cried my eyes out. Part of it was beautiful relief since not being able to bring him home myself left me racked with guilt. But another part of me was sad because he wasn’t mine.

I used to think that people were dumb to fall in love with a picture on a website. But that’s what I did. We had just been given some bad information about our chances of having another child with disabilities. I had signed up on different adoption websites just as a way of coping with the news. I found Grady when I wasn’t looking for more than just information. I stopped and scrolled back up because he looked just like my daughter!  Then seeing he had arthrogryposis was like some sign from above that I would care for him, or at least care about him. I had already picked out all his doctors, therapists (OT and PT) his surgeon and had a game plan for his legs before we requested more information on him. But when it came down to it, all we could do was give a few dollars to his fund. He wasn’t coming home with us.

But reading about his new family is a comfort. His mom is even originally from Southern California! They already have a daughter too. They sound absolutely wonderful!

Here’s their story from Reece’s Rainbow’s website.

Here’s the family’s blog with a new picture of Grady looking adorable.

This family is in their first steps of the process and need support! Please consider donating toward the cost of their adoption by going here. Every little bit helps!

I really hope one day Laelia and Grady meet and become friends. I hope to see this family at the annual AMC convention or connect with them on amcsupport.org.  Laelia already loves Grady and his pictures online so it would be an easy friendship.

After posting the video of Laelia putting on her sunglasses I had a lot of quality discussions with different people about Laelia’s videos. But let me start over from the beginning.

My husband and I decided long ago that this blog would be honest. That’s why it sometimes has a dark edge to it with anger, fear or doubt. Then other times it’s exciting–with new accomplishments and naked joy!  If a subject can’t be shared honestly, it is left out of this blog.

After the sunglasses video I realized that I have not always met my standard of honesty in the videos I post when they only show a victorious end result. In true Hollywood style, I have chosen quality, brevity and beauty over reality. There were several attempts by Laelia at donning sunglasses that ended in failure and tears before I caught that one video I shared with the world. In fact when someone commented on how Laelia never complains, based on what they had seen in her videos, I had to admit that she did, in fact, complain. A lot!  These things are not easy for her to do. Then to my surprise this person said she’d love to see those videos too! It always overwhelms me when I realize that people love my daughter even when she’s not the poster child for grace through trial.

In this vein I have a beautiful video of my daughter mastering something that has eluded her for a long time now: climbing over a stair. It’s a video I wouldn’t normally share since Laelia’s hair is a mess, her several attempts end in failure and she cries her heart out in frustration. But I think through the gritty reality, you’ll come to know a little lady who persists; she tries again when her energy is low and her weak muscles are screaming at her. And I hope you feel with me the need to run up and help her as the camera inches closer. It’s downright mommy torture to let her succeed or fail on her own! I’m actually crying as I write this!

So here’s the video. Just click on the picture below to see it. The picture was taken right after I finished filming. She announced, “I tired now,” then fell backwards and made fake snoring noises. I like this picture because it captures what she was too shy to show while being filmed: joy, pride and exhaustion.

It reads: “Hi! My name is Laelia! ‘LAY-Lee-Uh’ I have a disability called arthrogryposis. It means my joints are stuck. I also don’t have the muscle to walk or lift my arms. But I’m smart! So please include me in conversations!”

Having Laelia hand these to people has been so great!  It provides an instant explanation of her disabilities without me having to explain to yet another person about arthrogryposis, but it also opens up an instant, informed dialog. It has helped people who have never dealt with disabilities avoid saying things like, “What happened to your daughter?” or “Why can’t the little girl lift her arms?” that us moms HATE responding to constantly. (The zoo and grocery store hold the biggest offenders!) It also clearly states that I want my daughter included in conversations. A lot of people ask me “harmless” things in front of Laelia about Laelia. But not after they read the card!

Another mom (the one who started the AMC support group) told me that business cards would smooth over first time meetings with people. I thought it was a cute idea, but I never thought I’d go through so many of these things! I had 250 cards made for free online (cost me $5.99 for shipping) and already I have handed them to strangers, gym childcare staff, people who work within special needs communities but have never heard of arthrogryposis, and in November I’m handing them to airline employees! 

Actually the business card suggestion was made after I shared our not-so-great experience with a flight attendant during our first trip to Shriners to get Laelia evaluated for surgery. This head flight attendant with Continental, Cindy, demanded that my daughter stand instead of sit while waiting for the bathroom at the rear of the plane. At first I geared up for a teaching moment (which happens way more often than I would like in the real world), but she got so mean so quickly (telling me that allowing my daughter to sit on the dirty floor was awful, and otherwise demeaning my parenting) that I was choked up with tears before I could blurt out the painful truth of our situation. I tried to tell her that this was how Lali “stands” because she’s different, but before I got the full sentence out I was shot a look that was incredulous and outright mocking, then I was bluntly ordered to pick up my child NOW. And that was when Laelia began to cry. I overheard that awful woman talking about us as we were back in our seats (a mere few rows from the back, row 34 of 37). Her fellow employee had to explain to her why the little girl didn’t stand.  The woman became even more incredulous and said we should have sat in a different seat then.

When I’m emotional (angry, sad, hurting etc.) I can’t educate. When I can’t educate then hard-headed people can take advantage of us, and hurt my daughter’s feelings.

So this card was made with Cindy in mind. But thankfully it’s been used effectively to avoid Cindy-type situations.

She did it!!!

Laelia is doing so much better! I’m so glad that it wasn’t as bad as last time. The pain is connected to her left leg and hip and aggravated by picking her up or moving her. Two years ago she had the same thing only on her right side, and much worse for much longer.

She did really poorly that first night of pain (Sunday night), but now (Tuesday afternoon) she hardly notices it at all! What an amazingly fast heal! We’re still careful with her, and I did accidentally hurt her last night carrying her to bed, but it’s so much better now that we’re not worried about her at all!

I’m very thankful right now. I hate mysterious pain! I hate feeling so helpless! I hate when my daughter is hurty, and she gives me that adorable, pitiful face with the pinchy-cheeks and pouty lower lip. Acc! Just stab me in the heart! But thankfully this wasn’t as bad as last time. Nowhere near as bad!

I really appreciate all the prayers and warm thoughts from my family and friends. Sometimes it’s hard for me to feel like God cares about these daily pains and heartaches of ours that don’t effect the rest of the universe. But if I think about it, I’m surrounded by people in my life who care! And I have to give him some credit for that, since I could never have attracted people of this caliber on my own.

I hope to handle these situations in a way that shows God I care too. I care about the things and people he cares about. And that means I VERY MUCH care for my daughter, who has to be one of his favorites.

Disabled!!! (*point point point*)

Pegged. You got us. Ten points for observation.

But think about this: You had a conversation with a two-year old who speaks in full sentences using mostly correct grammar. She was bright and social and friendly.

Come on, admit it; you wish she was your kid. (I mean, how many times do I have to pull her out of other people’s grocery carts and remind them she’s MINE!)

So I beg you, seriously now, please see my little girl for more than her physical disabilities. Or if you can’t help yourself, don’t bring it up all the time with me! It’s the least you can do! That’s what spouses and friends are for. Talk to them!

I’m not denying she’s disabled; I just don’t utterly and completely define her by that alone.

Yeah about that last sentence: It’s the whole point!

Which reminds me of why Laelia’s IEP was so hard for me. I had to face the fact that Laelia isn’t dressing herself, using the potty, walking to recess… But I was so thankful that her IEP was with people who are wonderful, and saw Laelia the Child, not just Laelia the Liability. I’m not guaranteed to have people as wonderful for Laelia’s entire school career.

In IEP-related news, Laelia will be starting a wonderful preschool on September 20th! She’s super excited and asked to start this Monday. She’ll be a student, NOT a “disabled student,” and I expect her to fit in gloriously well. One of her friends will be attending the same school, and they may be in the same class. She’s been talking about him ever since she found out. God help the boy–Laelia is a veritable (verbally verbose) friend. Just like her… um, *daddy* (cough).

We had our enrollment appointment for preschool yesterday, and everything went very well. I have a feeling that the principal is nervous about having Laelia there, but other than that feeling, everyone was really great. Laelia even walked out the door with a borrowed book about gravity. She has until September to pronounce the word “gravity,” and give it as an answer to the question, “Why don’t things fall up?” Right now if you ask that question she replies by making crashing noises and falling over.

So Laelia starts school next month, turns three-years old the following month, and has major surgery the month after that. And, really, the first two things on that list scare me almost as much as the third–and those are the “normal” things!

Actually I’d love for someone to explain to me why I can talk about doctors sawing into my daughter’s legs with a straight face, but talking about her turning three-years old makes me sob like a crazy lady! Anyone?

So in conclusion, don’t define my daughter’s life by her disability. She’s a bright, charming, willful, beautiful, almost-three-year old (*sniff*) little girl who has a purpose on this earth that has nothing to do with making others feel better about her physical disabilities.

Front view

Side view

I’m-tired-and-tumbling view

So super exciting news in Laelia land! She can now stay on all fours (feet and hands) for two minutes! She can’t yet get herself on all fours, but she can request the back-breaking chore of either parent. Then once in position, she can keep it up all by herself! For almost two minutes! We’re excited!

She can also get up on her hands and knees, although it’s a little harder. I keep having a dream that she goes from either of these positions into a crawl! I hope it’s not just a dream. She can kinda do an army crawl. So hard for her to get a foot or knee to move forward (totally missing those muscles), so we’ll see. But still exciting! Eeeeeeeeeeeeeeeee!

Here’s a video! Click HERE!!!

Laelia’s version of her ABCs.

First time to ever touch a power wheelchair (in her defense).

A few minutes after the very first time she ever touched a power wheelchair.