Standing in front of our front door a year and a half after starting this process.

Laelia’s new room. (Before the walls were cleaned and the carpet ripped out.)

Our new housemate. He’s as big as a pen!

The stair. Click on this picture to go see the video.

So we finally found our home! We move in next week, but are starting the major cleaning/fixing projects now. The above picture shows Laelia sitting on the only major stair in the whole place! And if you clicked on the picture and saw the video then you saw that she can easily mount it! Remember when that was a LOT harder? 

What this means for Laelia is huge! National Seating can finally deliver her power chair! And the kind of independence and joy this will bring her will be immeasurable! Laelia has been looking forward to this chair since we first got it months ago. The only obstacle was moving into a single story place since our apartment complex had a several too many stairs. We are planning on building a small ramp on the left side of the stair just for her wheelchair, but that doesn’t stop us from bringing it home.

We have been completely blessed by wonderful friends and strangers alike in the last two days. It became clear by the size of the mess that it would be VERY difficult to finish cleaning and tearing out carpet before we moved in next week. I mentioned this to Brenda, who had a group of ladies over (she is my model for hospitality), and within 24 hours her husband, David the Hurricane of Service (as my husband refers to him), had a group of volunteers over ripping out carpet!  Laelia LOVED having people over and mentioned the names of the people she remembered (Mike and Brenda mostly) again and again. She also went around telling the crew to be quiet. Ah the three-year old princess.

David works at Fellowship of San Diego, a church down the road from our apartment who has left us speechless more than once. They barely knew us before they were bringing meals and visitors after Laelia was born. We have some great friends from there who we adore! Well it happened that a group of people from California Baptist University were in town for the weekend doing service projects through Fellowship. So Saturday morning around ten college students in work clothes came to scrub walls and rip out carpet padding! They were here almost three hours and did more work in that time than Charley and I could have done in the next week! It was amazing!!!

The living room (and stair) after demo.

Laelia “helping.”

Laelia LOVED having the team over. She sang them songs and showed off her new standing ability. She also followed a couple girls, Ashley and Raquel, around very closely just watching them work. (Once again like the little princess she is.) She drove around in her little pink caster cart that my dad had made for her (the wheelchair substitute for shorter distances) going back and forth to all the rooms to see what was going on. I think she was super bummed that they weren’t all moving in with us.

Our hearts are so full of thanks I can’t even describe it! And we appreciate those who have gone out of their way to help us. Thank you so so so much!

It goes without saying that we saved not only time but also money because of the abundant generosity of these friends and strangers. We decided to give back a bit so we donated some of that saved money to a little boy with Laelia’s condition facing some bad circumstances in an orphanage in his home country.

Click on the link to donate to baby Joel!

We also donated some of the saved money to Reece’s Rainbow, a wonderful organization helping people adopt special needs kids from countries where orphaned special needs children go to mental institutions where life is awful. (And “awful” is too mild a word.) Laelia, had she been born there, would be a year away from facing the mental institution, despite her intelligence and beauty. Baby Joel is around four months old and it takes around seven months to adopt from his home country in the Ukraine. If adopted soon he would be around a year old and still very viable for serial casting, surgery and splinting, as well as English learning! I love his little face, it haunts me, and I hope he finds a family soon. Donating to his personal account helps a great deal in that it catches the eyes of potential parents.  Laelia has three friends with arthrogryposis who have been adopted through Reece’s Rainbow. It’s a great program! (You all know you want a mini Laelia. He’s so cute!)

And if any AMC families need to come to San Diego for Rady Children’s Hosptial or any of the many services available down here, we’d love to have you over! Please let us know! Right now we even have one working, yet gross bathroom! (Oooooh tempting.) We love meeting new AMC families and Laelia loves it too! Or if you’re thinking of adopting a kid with arthrogryposis, come meet our Laelia!

Again, thanks to all who helped us and continue to help us. Thanks for the borrowed tools and cleaning supplies and painters. Thanks for cleaning walls and ripping out the little boards with nails in them. Thanks for helping us remove all the doors. Thanks for the prayers and words of encouragement. We feel so loved!

Gearing up with knee immobilizers and vest!

Her PT through CCS’ Medical Therapy Unit is Alicia (on the right) and the PT assistant, Megan (doing the case study on Laelia’s vest there), is on the left!

Jerry the Giraffe is sporting a little modified immobilizer too! Love it!

Standing! Click on the picture above for the video!

At home doing standing exercises without the knee immobilizers or vest.

Leaning this much on the table is cheating!!!

What in the world? How’d you do that?!!

I didn’t hear any complaining during standing so I looked over to see her like this! (She’s not allowed to watch cartoons unless she’s weight bearing. And she’s not weight bearing in the least in this picture.) Clever little cheater!

Love my kid! Her abilities get more amazing everyday!

She just did it! I was talking to Charley about something, I forget what, and looked over and she did it. And we both kinda looked at her like stupid people and said, “Good job,” in an automatic way. It was really weak. We didn’t know what we were seeing. Then the squealing happened (okay that was me, not Charley) and the breathless rambling and the tears. Then we calmed down a bit and I got it on video. Once she did it one time, she could do it over and over! It looks so easy for her, but this has NEVER happened before!

In fact more than one doctor either directly said or strongly implied that this would never happen!

The day before we had watched YouTube videos of kids with arthrogryposis walking. (Bonnie is super amazing for one. She even was a flower girl in a wedding and walked down the aisle in her walker that barely contained that pretty poofy dress.) (That’s why our kids are on YouTube, people!) After all the videos Laelia expressed an interest so we got out her knee immobilizers and tried “walking” with me holding up her body weight. It was… discouraging. Then today she stands without the immobilizers (which is hard) and without prompting! In fact we weren’t even ready for her to be amazing! We just stared at her dumbly.

So tonight she stood by herself! All by herself! For the first time ever!!! And seriously for the first time in my life I’m thinking, I’m just for real thinking, “My gosh, she could walk one day.” And I’m out of breath. And I can’t see because of the tears in my eyes.

I know we ask for a lot with her, but just thank you God for giving us this one thing.

Here are three videos (embedded) that show how impressive Laelia is. She has been through a lot lately, but still does amazing things despite it all.

One of Laelia’s physical therapy exercises is when she leans forward on her red ball to put weight through her feet to stretch them. Well I think she wanted to show off tonight because she did this!

Laelia is getting pretty good at memorizing stuff so we’ve started repeating stuff at night to see if she’ll remember it. She memorized Genesis 1:1 and John 3:16 for fun. Next she’s learning knock knock jokes. It’s pretty funny.

Laelia can ride a horse! Okay well maybe not a real horse. (Phong took this one if you’re wondering who the voice belongs to.)

For the first time in her entire life, Laelia crawls on all fours!!!! (Embedded videos below.)

This is super impressive if you consider that four weeks ago Laelia couldn’t even get up on all fours by herself. On January 7th Doctor Harold van Bosse told me I needed to increase the physical therapy Laelia was getting to at least two times a week with a professional to maximize her potential. Well that didn’t work out. Or at least it hasn’t yet. It’s been five weeks! We’re still waiting on CCS and I have yet to do one single PT appointment with them. (Although we have done the initial evaluation. But like a bad first date, they never called after that.) (Oh and they didn’t even give us an OT eval, nor has anyone called me to rectify that!) So we’ve gotten by with private PT so far: two visits in our home thanks to a gift from friends, and two official visits plus one evaluation at Children’s Hospital. But despite what little services we’ve wrangled professionally, unprofessionally we’ve done novice PT at home EVERY day. We change up the routine, but she does weight bearing on her knees and push ups every day. Eventually she just figured out that she could combine those two for crawling. She crawled for the very first time on Valentine’s Day! YESTERDAY! And when I say the very first time, I mean the very first time. In her life. Ever.

Did I mention we have an amazing support group? Both on amcsupport.org and on Facebook. And one mom friend (who I didn’t meet on either website, but she found me on this blog) especially encourages me by sending videos of her son, Ryan, who is doing amazing! Laelia saw a video of Ryan crawling and it put a bug in her bonnet, as my grandma would say, to do it herself a couple weeks later. This is the same mom who dragged me to Seattle’s AMC clinic and encouraged us to start knee weight bearing because of how critical it was. (Thanks Kiersten!) Well it was hard to do anything with those wide knees when Laelia’s legs were so abducted, but I could prop her up in my lap or prop her up on the carpet until her legs slid slowly apart and she face planted.  But after her osteotomies (aka miracle surgery) it works great!

Here’s a video of her knee weight bearing in the past. She couldn’t do it solo using the table like she can now because of the position of her legs so she had to stay in my lap.

I also read Arthrogryposis: A Text Atlas that’s available online for parents as well as medical professionals. Starting on page 89 there is PT advice for babies with AMC, and then on page 106 or 107 I started to get some ideas for toddlers. I recognized so many techniques that our PTs have used in the past with Laelia. (Which is amazing considering that I doubt they have read this discontinued medical textbook.) God was directing some serious therapy when I thought we were going no where because of how slow the progress was!

So it was the best Valentine’s Day! And I’m so proud of my little one! 

She is telling me that she wants to add that she did another first on Valentine’s Day. She ate a heart-shaped sucker all by herself too. It was her very first lolli pop. Haha! She is so full of surprises. I’m so happy to be her mommy!

In closing, here’s another video of Laelia first learning how to do this crawling thing. So great! I can’t get enough!

Well we ended Monday with the expectation that Tuesday would bring our long-awaited physical therapy with CCS and a visit with the orthopedic office to get Laelia’s painful shoe adjusted. Well none of that worked out. CCS gave us bum information. They said we’d be seen Tuesday and I said I’d clear my schedule to accommodate that, but what they meant is that the therapist would call us on Tuesday. I thought I’d clarified that and when a phone call was mentioned I assumed that it was to tell us what time to come over. Well that would have been the fastest CCS had ever moved, so obviously it wasn’t going to happen. The lady I spoke with made it sound like it would be happening, but she was either confused or we didn’t communicate. (Because apparently I clear my entire busy schedule for a phone call?) When the therapist called she didn’t know I’d been told that, wasn’t prepared to see us on Tuesday and didn’t know our urgency or that we had to do orientation and evaluation on the same day instead of a week or more apart. It was frustrating, but we did manage to get an appointment this Friday. Orientation will consist of me watching a dumb video. DUMB! Okay I’ll try not to judge too much before I actually go.

The only problem with Friday is that my dad and Christina, who I haven’t seen in too long, have planned a short three day trip starting Friday to drive the ten hours south to see us. So now I’m dragging them to CCS and then to a chiropractic appointment instead of hanging out and having fun. Oh well.

I have a couple friends going through the same ordeal with CCS. One of my fellow AMC moms can’t get CCS to call her back and couldn’t for the longest time figure out if they had even received her application! They should call it CCSucks. Har har, I’m so funny.  

As for getting the shoe fixed, we did get the auth from our insurance on Tuesday (love having a case manager again!), but when we called to make the appointment we found out there had been a death in the orthpedicist’s family. (Johnson Orthopedic is a great, family-owned business.) So we had to figure out if we should wait for excellent AFO repair, or attempt to take care of this with someone else. I just hate to take away business from a great company and risk poor workmanship with a new company. My daughter’s feet have been through enough.

In the mean time she’s still wearing the old AFO that doesn’t stretch her foot. And I’m manually stretching her foot every hour starting at 1pm when I get home from work. Not fun.

So none of our plans worked out on Tuesday. But on the up side, I did have free time for the first time in forever. I got to hang out with Chelsea. I didn’t have to rush through PT at home. I got to look at places to move. We put a new offer in on a foreclosed house that’s owned by the government that night. *fingers crossed* I’m also looking at Condos and apartments too. I just really wish I could take all the stairs out of my apartment and move it to a better street and that would be perfect.

Yesterday (Wednesday) we had a private, out-of-pocket PT come to our home. She’s filling in until CCS and Children’s can get us a stinkin’ PT appointment. It was pretty wonderful. Her name is Michele and she was great with Laelia. And Lali pretty much showed off all her abilities and learned a new one: making a tiny “bridge” with her little hips! Michele does yoga poses/stretches and does the voices for her stuffed animal friends so she’s great.

After Michele left, Laelia begged to do more PT! I was floored! I told her it was nap time, but she begged and pleaded. So I got out the iPod Touch, jumped on You Tube and found every 10-30 second video of every baby animal I could think of. The only rule, like with TV, is that she has to be weight bearing to watch a video. So she did a push up through every video! I think she did thirty small push ups all together! So I fed her a peanut butter sandwich for protein and we went right back to it! By the end she was shaking, but all I had to say was, “Ooh! Here’s a video of a cute baby elephant! Or panda. Or mole rat!” and she’d be doing another push up and begging for the video. Around 5:45pm she was wobbly and fussy so I decided we’d done enough. She asked for a hug and when I pulled her into my arms she fell asleep! The fastest I’ve ever seen! So I lowered myself gently to the couch and shut my eyes. My husband got home to this scene:

The camera flash woke me up but not Lali. It took some doing to wake her up. Then her daddy carried her straight up to bed (no straps, oh well) and she slept a good, long while. I think I worked my baby a little too hard!

Video:

Today we went to OT (occupational therapy) and got Laelia’s splints fixed and adjusted. It was long overdue. Actually when I was getting Laelia from preschool to take her to the OT appointment, the principal stopped me to show me a paper with my Philadelphia doctor’s notes on it. It was a prescription to weight bear. The school PT consultant said they needed that prescription to weight bear in order to get permission to borrow the gait trainer for the classroom. Well the principal wanted to know if she could ignore it! “We’re not going to do this, ‘…two times per day weight bearing…’ stuff. You do that at home right? Do I have your permission to ignore it?” I said I didn’t have time to talk (even though I had already said that but still ended up reading the whole paper), and ran out the door (late) just feeling bad about it. I mean I want the teacher to have freedom in her classroom, and I want it to be easy on everyone. But I don’t want this attitude up front. It made me want to change my stance and make them do it! It would be wonderful if they stuck her knees on that pillow she uses for nap time and she could be on her knees for story time or whatever. How hard is that? She has so much therapy… I would love the help! I just kinda felt ambushed. So later on when I’m in the OT parking lot and I get another call from the school, only this time from the immersion teacher about something totally out of left field (my husband had asked the bus driver how Lali was doing pain-wise on the bus, he said he’d tell her aide that Lali was in pain, okay thanks, then it became a “communication” error on our part since we need to address the aide directly, but we weren’t really talking to the aide nor did we know the bus driver talking to her was a bad thing, so now we need a special book to be kept in Lali’s backpack for when we want to ask them questions, blah blah blah)… it just destroyed whatever emotional reserves I had left. I had already left work that day ten minutes late because of something stupid… now I’m late for OT… now I’m just angry. Charley too, which is rare.  Not good anger either. Awful, impotent, bitter anger.

So tonight I’m just tired, in back pain and I’m angry. Hopefully Dad and Christina can come tomorrow and give me a much-needed break. CCS is also tomorrow. Fine. Let’s do this.

Here are some of the exercises we’ve been doing at home recently. (Disclaimer: Yes she has a bad haircut. Yes I did it. Yes I’ve been thoroughly lectured. )

Standing without her casts is much harder. She can do it for three minutes, but she gets REALLY shaky. She cries through it all, but she’s getting stronger.

So after my daughter’s PT exercises last night and during her daily massage I THINK I’m pretty sure I felt a quadricep! So I checked the other leg and I think I felt a little hard something there too! TAKE THAT AMYOPLASIA!!!! I quickly added quad stretches to the regime while singing a happy song. (Do de do.) Quaddy quad quads! (Lack of sleep is making me kinda silly.) *GRIN*

For balance she sits on a ball. I’m always right there with her, except she wanted the picture by herself.

Weight bearing through her knees.

Weight bearing through her feet (still on the ball). She’s saying, “Come on Pooh Bear, do your exercises.” Precious!

VIDEO TIME!

Tonight I taught Charley how to do Laelia’s PT exercises. My back has been really bothering me so I was very grateful for the help! Rocking back and forth strengthens her core and sitting with her feet on the floor then leaning forward puts weight through her feet.

Here’s Laelia going down the stairs. By request.

Here’s Laelia’s daily push up and what that looks like.

And I’ve saved the best for last. Here is Laelia doing weight bearing on her knees! For the last two weeks she just cried through this, but today she just happily watched her cartoon. All I had to do was pause it whenever she took a break and that was all the encouragement she needed to keep going! She even dances! So much improvement, it’s hard to believe this is the kid they said would never stand!

We also (not pictured) have stretches for every joint in her fingers, her shoulders, neck, wrists, elbows, knees, feet, etc. And there’s a great half kneel PT exercise that is really helping her stretch out her quad while putting weight through her foot. And all of these ideas I got from an evaluation appointment that bypassed our insurance! We still cannot get physical therapy through any organization out there. CCS has not even evaluated us yet, and our application with them is still pending, which is not cool. Shriners in LA is the same story. I’m just so thankful our local PT was able to share so much knowledge with us in a short time. Thanks Sylvia!

Yes I bought my daughter a doughnut today. If you had to have these stretches and exercises everyday then I’d buy you one too.

And maybe I just so happened to buy TWO for myself. If you had to stretch and exercise this little darling everyday then I’d buy you TWO too.

Thank you for participating in my self justification. Now don’t ask about the Snickers bar…

PT went really well last night! We walked away with a whole page of typed out exercises for PTing (word I made up) at home! *sigh of relief* I am finally less desperate and stressed. I’m so thankful this worked out! And I’m so amazed it worked out too! Especially after being told no!

Because of some pain issues, Laelia’s not quite able to do everything on the list, but I can finally write out daily goals and work on them at home! You should hear how thrilled she is about all this. “Please Mama, nooooooooo! No push up. No more stretches. I tired. Cuddle me. Pleeeease!”  This is when a good Mama would cuddle her, but I usually demand one more modified push up.

We showed up half an hour early for PT, filled out a ton of paperwork we’d already filled out and lamented that we couldn’t also have an OT appointment (because now we’re spoiled). We did the full evaluation plus some good old-fashion PT (shhh, don’t tell my insurance) and walked out without paying a cent! We also returned all the different parts to Laelia’s gait trainer in a big garbage bag. It just made me realize that we’re closing a chapter in this stage of our lives. One I’m not sure will stay closed forever, but that largely depends on the quality of the CCS therapists.

I spoke with my contact at CCS who said that as of today all of the pieces of my application have been turned in and the whole thing is being considered for their medical therapy program. We have the qualifying condition for their therapy program so it should be automatic.  Should be, but nothing works that way here. I mean, seriously, we qualify based solely on our diagnosis, of which they have multiple documents proving she has said diagnosis, which means we’re waiting because…?  Uh huh. I guess the person deciding if Laelia is eligable has a large case load and does it on a first come first serve basis. But my contact, Melanie, has promised to call me as soon as she hears anything. And it does look like (although no guarantees) we’ll be getting our needed physical and occupational therapy from them before February. Maybe. (No promises.)

Shriners in LA will take three weeks to figure out that we’re already in their system! (Yay efficiency!) And they’ve requested a bunch of paperwork that I’ve already sent them before. They probably lost it; wouldn’t be the first time. (Shriners in Philly doesn’t have that problem.)

And my patient advocate at my insurance never called me back. In fact I have heard from her a grand total of zero times since starting this whole mess after Laelia’s casts came off on January 7th. And I’ve called repeatedly. Boo.

I will meet with my boss tomorrow to discuss some new hours for me to work around Laelia’s daily therapies at home and her commutes to therapies. Wish me luck.

And as far as Laelia’s poor feet (that hold up some of her therapy because of pain issues), we emailed new pictures of her feet to Dr. van Bosse last night who emailed us back this morning (speedy!) with an entire list of things to help her. I love that! He included steps to follow! Yay! Some of thing on his list are things we’re already doing, like putting another pad between the sore spot and the strap. Then there are things like “working” the strap (to soften in up) that I hadn’t thought of doing. We also have the go ahead to ease up on the dorsiflexion straps (the removable ones). We’ve actually already been loosening these, but now we can do it without the guilt trips. Or more accurately, Mama can keep loosening them without Daddy giving her guilt trips.  :)

Laelia is already happier. Her feet are happier too. And I guess it turns out that the ”swelling” of her feet is actually baby fat in the ankle getting displaced into the forefoot making it look swollen.  The doctor says it’s the ”Baby Beluga foot” that is common with this sort of bracing at Lali’s age.  So it won’t go down until she grows into her baby fat. If anyone can find compression socks sized for 2T-3T I would appreciate it. I can’t find any that tiny!

Today we used a Target e-gift card we’d received for Christmas (thanks Annita!) to buy a potty for Laelia that goes over our big toilet. (We had been saving the money for moving expenses but found out this week that the place we were moving to has some unexpected delays… that could be permanent. We’re now looking at other options.) I’m excited about the potty since the one we have doesn’t work for her. Laelia is already trained for going number two, but not number one. I’m ready to stop using our time restrains, her pain issues and all this jumping through hoops to get care/therapy as an excuse to not potty train this kid! Plus with the new position of her legs, she can now wear Pull-Ups! Have I mentioned that I love her new beautiful straight legs?

(Have I also mentioned that I’ll have to change her IEP to get them to carry her to a potty at school? *sigh*)

When I got the potty in the mail today it came with, I kid you not, a coupon for headache medicine! Ha! I’ll take it!

Oh and even though she’s not yet completely potty trained, she can change the ring tone on my phone and turn on Netflix using the X-Box. I can’t always figure out how to do those things, but I go potty all by myself so thbbbbbbb!

Kids and technology these days. It’s nutty. Times are changing. We were at a doctor’s appointment the other day and I gave Laelia my phone to play with. Well the doctor came in and asked, “Who are you gonna call?” AND MY KID DID NOT RESPOND WITH, “GHOST BUSTERS!”  How has the world changed so much?

But not all change in bad. Check out her legs!

And just for fun. Click here to see her crossing her new legs.

Then click here to compare how she used to cross her legs.

Love my chocolate-covered, un-potty-trained, ghost-busters-ignorant girl! No judgment!!!

At 4:45 pm on Wednesday, December 29th, 2010, for 30 solid seconds, Laelia stood up all by herself! That means she balanced on her casts by herself! The video shows all, just click on the picture below! (She did it one other time right after that, but not for as long.) She could already stand up by gripping something, but this is way cooler!  I had no idea she could do this! I can’t wait to show Dr. van Bosse in nine days!

EEEEEEEEEEEEeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!

Just want to start with a video that sums up my mood lately.

Yes, happy sad happy happy sad happy. Pretty much we can’t be sad long because happiness is brimming under the surface waiting to pounce!

As far as being sad… Nothing major has happened. No battles or medical issues (lately). No natural disasters. Okay we did have a flood, but that happens every time it rains in San Diego.  And driving a VW Bug through a lake that used to be a road is not a good idea. But all in all we kept Laelia’s casts dry and had fun listening to the rain.

The only sadness lately has come from thoughtless comments, both anonymous and in person.

Anonymous comments (usually through YouTube or occasionally through my blog) are easy enough to deal with. I just feel bad and then delete them. Done deal. But in person it’s harder. And since the holidays bring a lot more people out for shopping, and these people are generally stressed out, I’ve had to deal with some random comments from thoughtless strangers. We (Laelia and I) heard so many negative things while going to Target for toothpaste one day that I came home in tears. Then add to that all the recent trips to the aquarium, the grocery store, the post office… well we heard a lot of comments. Here are a few of the things people have said in the last two weeks and my response to each.

Stranger: “What is wrong with her?”  My response: “What is wrong with that sentence?”

I’ve heard this question the most and it’s the most offensive. When making my response I try to do it without sarcasm and while smiling. That works way better than my typical response of, “Nothing!! What’s wrong with your face?!” Okay just kidding. But asking what’s wrong with the sentence does get people to evaluate what they’re saying, or at least let them know that I’m holding them accountable.

Stranger: “When will she be able to run around again?” Me: “Well, casts come off on January 7th!”

This comment is fine to ask, but just hard to answer. What I want to say is, “If God thought running around was so great, he would have made sure his favorite kid could do it!” A stranger’s question that involves a complicated answer (like going into your daughter’s incurable condition) is best avoided. I mean, doctors told me she’d never walk, but I’ve learned that maybe in a quick conversation with someone I’ll never see again, it’s probably not the best time to bring that up. One nice lady we met at the aquarium asked Laelia, “Are you ready to run in two weeks?” And Laelia got all excited and yells, “Yeah!”  I pulled Lali aside later and explain how we hope she’s able to run very soon, in her own way. And that might even be in a fast power chair! (Her response was the same: “Yeah!” Love my kid!)

Stranger: “What happened?!” Me: “Skiing or bungee jumping accident. I don’t remember, I was pretty high at the time.”

Nothing happened! This is a normal part of our life! I didn’t injure her! Once again this question is kind of a punch in the gut even when it’s not intended that way. I walked around Target the other day and so many people said this to me in a not-so-nice tone, or worse–asked each other this question out loud so we could overhear them as they walked past us. Or even worse! They said it amongst themselves followed by saying, “Poor little kid,” as they walked by, but in a tone that carried all the judgement of the world, and directed straight at me. Sometimes people assume that if your kid is in casts then you’ve hurt her. Some people are assumers (and I say that with all the force of a cuss word). Responding in a joking voice, “rock climbing” to that question always gets a more reasonable dialog going after that, and gives me a chance to explain, “There was no injury. She was born with her legs in one position so they recently fixed that surgically.”

Stranger: “May I ask what happened?” Happy me: “Of course!”

I don’t mind answering questions! In fact we visited a church last Sunday and ended up spending a lot of time talking about arthrogryposis and not once did someone say something offensive! It can be done! I don’t mind if people want to know about my kid (my favorite subject)–I don’t mind questions, I don’t mind other kids’ curiosity–that’s all fine. Just don’t say anything that could be interpreted, “Why is your child a mutant?” and we’ll be fine.

Oh and while I’m on this rant about being tactful, drivers need the same lesson. I can’t get Lali’s wheelchair down a curb; up is fine, but down is hard. I need the handicapped parking space near the little ramp. I have a placard for just that reason, but during that same tearful Target trip mentioned above, there was a guy parked backwards in the blue lined space blocking the ramp. So after a while waiting in the rain with a shabby cover over those plaster casts we’re not suppose to get wet, I went into the store to ask the employee to send out a page over the loud speaker asking them to move. She responded, “But he’s just trying to make a return.”

The assumption being that my child just broke her leg (which was probably due to bad parenting) and now the crazy mother (me) feels entitled about where to park.

So how do I respond? Like a rock star that’s how! By choking back a sob and standing there wide-eyed.  Well, I also repeated my request in my serious voice followed by silently pretending to take pictures of the illegally parked vehicle with my phone that can’t actually take pictures. Eventually the guy moved. Yep. That’s how the cool people do it.

But seriously I was completely vilified in this situation. Not cool.  The “poor” guy just trying to make a return could have parked ten feet away in a legal spot. And it’s so dumb that stuff like this makes me never want to leave the house. Looks and stares and off hand comments would not bother me if they happened rarely, but it’s all the time now. The host guy at the Olive Garden open-mouth stared at her chair for so long I almost said, “Hey buddy! Eyes up here!” But I thought better of it. Bleh, there’s no help for it, people just stare. Especially now that Laelia is bigger and expected to move around more. I remember when strangers would just say how cute she was. She got her first casts at three weeks of age and I could hide them under her swaddling blanket. Those were the days.

So those are my little unhappinesses. But if you haven’t yet read the below posts, I’ll just say that obviously we’ve been completely blessed and had a ton of joy this season too. Just look at that video at the top of this blog post again and tell me it doesn’t make you grin your head off. And we’ve been supported by so many friends that say so many positive things! In fact because of that alone our happiness scales are completely unbalanced in a positive way.

So I will chose to be happy despite the looks and comments. Thanks for helping me do that!