Last Saturday she was begging to do some weight bearing on her knees. Since physical therapy for the first week is Laelia-directed, I let her do it. I was still a little afraid I’d break her, but she was harder on herself than I would have been. With a little  help from Dora the Explorer, Lali logged over an hour of weight bearing! She’s very independent and nothing will hold her back.

I cringed thinking of her sore hips, but she wanted to hear daddy’s story while holding her toes.

Laelia’s school: Last Monday I had a school meeting to determine if Laelia could go back to school. It was going to be with a nurse or health person of some kind. Anyway when we landed in San Diego and I listened to my messages I had missed two calls from the school saying that the health person was not available for another week! I thought, “Oh no! No school for a week and me with a new job on Monday!” Well thankfully Sunday night our SEEC (Special Education… something something) coordinator, Sue, called and after I explained that the surgery went really well and was even technically “an outpatient procedure” (Laelia didn’t stay at the hospital overnight… and she didn’t really need to stay very long at all) then Sue suggested I email the school to tell them since I couldn’t call on a Sunday night. So I emailed the director and hoped for the best. I worried about it all that night despite trying not to think about it. The next morning I showed up for school and once people saw Laelia and that she wasn’t in pain or in casts, and she didn’t need any medication of any kind, they let her stay at school that day! When the director said, “Okay sign her in,” my brain didn’t register the words and I was all, “Sign her in for what?” :) Before I had been told she would definitely not be allowed to go back to school on Monday, but since she was fine they let her! They are saving our big meeting with the health person for after her bigger surgery this spring.

Laelia’s bus: Tuesday morning after the bus didn’t show up I fought with the bus people over the phone for 40 minutes. A weird thing happened–they put me on hold at one point but without actually putting me on hold. That meant I could hear them dealing with another parent who was very upset. I also could hear them dealing with her in the way they deal with me: with the tough talk, “I’m sorry ma’am, next time call at least two weeks ahead of time… uh huh… well then you should have stood in a more visible spot… uh huh… well it’s our procedure to…” and so forth. When they hung up with that parent I heard them say something like, “Well she’s right. We didn’t do our job and now her job is in jeopardy. I feel for her.” Then they got back on the phone with me!!! And at this point everyone just seemed more human, and I felt more confident in what to say. Long story short, a bus came that morning (very late) for my daughter, and after that her regular bus drivers (whom I adore) have showed up every morning and afternoon since!

Mommy works from home: The great thing about this shift in my job is that I’m able to attend every school meeting. Like Thursday night I went to a Community Advisory Committee meeting for parents and staff who support students with disabilities. It was boring as heck, but I ended up meeting people. In fact I met someone who would be able to assist me when we return back to school after Laelia’s next surgery! My goal is to go to EVERY school meeting in any way related to my daughter’s needs or education from now on. It’s really confusing, but I’m learning stuff! Like there’s something called SELPA and it stands for “Special Education… El… Pa.”

One of the perks of working from home is that I no longer panic when Laelia gets kicked out of school. Like for example we were told Thursday that there was no school on Friday for Veteran’s Day. (We had missed the reminders since we were in Philly.) In my former life that would have meant some mad scrambling and most likely a day of Laelia and Chelsea bonding while Mommy went to work. This time it meant working from home while my daughter was home! That was exciting for all of three minutes. I was looking forward to this new dynamic of working while parenting. I now know this is impossible. Utterly, miserably impossible. I’m never trying it again. It doesn’t work. No good. Nope.

Next time I will parent during the day, and then start work at 3:00 a.m. when work can actually get done.

Laelia’s shots: So Laelia was driving me crazy-go-nuts on Friday since I was trying to work from home at my computer while answering her incessant calls every five seconds followed by the whining and crying of an only child who is being ignored. Laelia had a doctor’s visit that day, the school reminded me, because even though our lives are surrounded with doctors, they don’t count! Without a physical from a local doctor Laelia would not be allowed to return to school. In the waiting room a nice couple holding a newborn picked my brain about pediatricians while they offered my little angel a mini Hershey bar. She ate half before her name was called. After her name was called (Lala or Layla or Layloni, they were close) evil Mommy took. her. candy. *gasp* Mommy mentioned something dastardly about “eating it later.” This led to screaming the likes of which has never before been heard. Her first two attempts at the eardrum-piercing scream were too breathy, but the third attempt nailed it. She had people on the other side of the office poking their heads out from behind their paperwork to stare. Telling her that because she screamed she was now getting no more chocolate did not help matters. Threatening her with a time out got the response of, “You can’t give me a timeout, there’s no timeout place here.” Wow. Let’s just say it takes a lot to make me laugh hysterically in public, but I did. Then I said in a sing-song voice to my precious little daughter who I was not strangling (so, WINNING), I said, ”I hope you get lots and lots of shots today!”

Okay the truth was that I honestly did not know she was getting any shots that day. I never would have said that if I had known she was getting shots that day. I thought she was just in for a physical where they checked her tummy and stuff. But she was also in for four shots. Four. And when the nurse told me this in response to my sing-song statement, well that sobered me up real quick. I immediately said, “Oh honey you are getting shots today, but I didn’t know! It’s not because you didn’t behave correctly. Shots are good for you and they make you healthy. They are not a punishment.”

Nothing I said mattered. For the next half hour everyone within the building heard the loud wales of, “Iiiiiiiiiiiii Doooooooooon’t Liiiiiiiiiiiiiiiiiike Shots! Nooooooooooooooooooooooo! I doooooooooooon’t waaaaaaaaaaaaaaant!!!!!!!!! Waaaaaaaaaaaaaaaaaaaaaaah!!!” I told her that if I could I would take one for her. She got hopeful and said between sobs, “I wish you could take all my shots!” Stinker.

After the pokes they gave her a treasure box toy for being so… um, loud? She happily strolled out of the office cheerfully playing with her tiny plastic camera. I didn’t strangle her once. Where’s my parenting trophy?

More parenting stuff: In other news, I’m starting to regret telling my daughter about the time I found a horse outside. He had escaped from the fair and was wandering the Carl’s Jr parking lot all done up like a faerie tale. It was probably the most exciting thing that ever happened to little kid me. I ran up to him and held his reins. I had no idea what to do next, but was grinning my head off. My sister had to tell my mom that I had a horse when she showed up. Her facial expression was priceless. It was a great memory. I told Lali about my horse during our bedtime story. (A quick aside about our bedtime stories, in the beginning it was all Bible stories and great works of literature. It didn’t take long to devolve into Disney princesses. Now I’ve started telling her stories about my childhood and how her daddy and I met and married. I lost my mom when I was nineteen and I regret not knowing more about her precious memories. So now I make an effort to share mine.)

But now I’m constantly hearing in my daughter’s overly excited voice, “The next time you see a horse outside get me!” Then her tone drops to a serious one. “I want to ride him. I will ride on him. On the horse.”

Tonight I taught Laelia how to play Uno. We take out the wild cards for now, but leave in all the other ones. She beat me three out of three games! I only helped her the first game! She’s really good at this even though the box says ages 7 and up. Because of the arthrogryposis in her hands we hold something (in this case the Candyland game box) between us so she can lay her cards out without having to hold them. And that way I can’t see her cards. Well not that I’d need to since every time she has a turn she starts out by announcing every card she has. (It makes the game take ten billion years to finish. “Oh that’s a green seven. That means I need a green card or a seven card. This card in my pile is red and it’s a six. This card is blue and it’s a zero. This card…”) The discard pile and deck are to the right of the Candyland lid so we can both see them and get to them. It works really well! Well until she has to reach over to grab a card. Then I catch her starting to poke her little nose over the lid to see my cards. She says, “I’m just counting them!” Or, “I’m just seeing if you have a four!” So, you know, it’s totally justified. Still I don’t know how she’s beating me. I’m not letting her win! Maybe I need to start enforcing the rule where you have to say “Uno” when you have one card left. Instead she does a little dance and sings, “I have one card left! I have one card left! I’m gonna wiiiiiiiiiiiiiiiiin. You’re gonna loooooooooooooooooose.”

I respectfully reply, “You mean ‘Uno’ dear.”

We won!

Isn’t it beautiful?

So yellow and pretty!

I started squealing when I saw it rounding the corner.

“IT’S THE BUS!!!”

Neighbors must think I’m nuts.

So I have to say that starting a war with the school system is like banging your head against a wall over and over and over adn veovl anleiafl kaslierjaoj. Yeah like that. Sometimes you just get a headache. But this time we won! We got our school bus! And, yes, my daughter takes up two seats on the bus: one for her gait trainer and one for herself. Guess what percentage of seats that is. Give up? Two freakin’ thirds. That’s right, the two seats they didn’t want her to take up were finally wasted on her. She arrived home in the bus with ONE OTHER CHILD. *bang bang bang*

Apparently she tells me there were a whopping TWO other children on the bus in the morning.

So, UGH. I mean YAY! But also UGH. I was hoping I could fights some righteous battle that would usher in a smoother road for other parents in my situation and make everyone involved see the light of day. But in reality, in the San Diego Unified School District’s reality, you just fight every time they tell you no. Then you wait for almost two weeks while you sacrifice your work hours and sanity until they realize that you won’t just disappear. Well, according to the bus guy, parents do just disappear. It happens. They don’t want to fight. Or they feel they can’t without losing services or being treated badly. And I don’t blame them. I know of one other family who were denied bus service so they drive their kid to school everyday. They know it’s not right (it’s illegal), but they do it because they love the school and are thankful for it. And we are too. We love Head Start, the program and the people in our school, and we are so thankful for it. But I still fight these battles. Because I love pain. Bring it.

And why is information sharing so ridiculously hard for SDUSD?  I just recently learned that “Fred” was really “Willie.” So I took out the references to Fred in the last two blog posts and changed them to Willie. My daughter was even calling him Fred! How did we get Fred’s business card??? Anyway, we got the royal run-around and ended up speaking to five people total in the transportation department. Even when I finally reached the main guy who made decisions, HE EVEN TRIED TO HAND ME OFF TO SOMEONE!

And let me just say that we would not have even gotten as far as we did without our SEEC coordinator, Sue. She ended up calling everyone I did, multiple times. And she at one point yelled, “No, we need to solve this now! Do you want the mom to lose her job? Do you want to drag this out?!” Or something along those lines. She showed up at our front door at 7:00 a.m. with three other professionals on Wednesday to spend 40 minutes figuring out what bus Laelia would be on and how the bus driver would work things out.

I’m so glad it finally worked out. But I’ll admit it, I’m mad.

But Laelia is so happy. She’s riding the bus with her friends. She feels like a legitimate part of the school system. She feels like she belongs. And we all love her bus drivers. But as for the “system”…

Screw you bus people.

Where to begin? Last Monday, September 19th, Laelia had her first day of school. Laelia waited at the curb on an unusually foggy morning for over an hour. The school bus never came.

After my husband made some phone calls a guy finally came, only no bus. He was Willie with Safety and Training with San Diego Unified School District’s Transportation Department, and he was there to see if we qualified for bus service since he heard we’d be using a new chair (by that he meant gait trainer which is a walker with a seat in it) that he was unfamiliar with.

Keep in mind that the fact we’d be using a Kid Walk, including describing what that was, was revealed in Laelia’s IEP three months ago. We had no idea no bus was coming or that we’d need to qualify for this. In fact we knew the transportation department was difficult (for lack of a better word), and had made sure three weeks earlier that we were set up with special needs bus service for a gait trainer.

Of course we did know that we would have to break down the Kid Walk for the bus driver. But we were still excepting a bus driver (in an actual bus) and not some sort of inspection.

Charley was totally caught off guard. In that one quick assessment we were denied because Laelia’s gait trainer breaks apart but does not collapse. And using a different special needs bus that transports equipment without breaking it down wouldn’t work because it would mean she would take up two spots: one for her seat and one to hold the gait trainer. And in this economy you don’t take up two spots.

In other words, San Diego Unified School District’s transportation policy is that the special needs bus only transports kids who can walk and therefore don’t need equipment or kids who have nonfunctional legs and therefore have equipment with seats they can ride in. Kids that are special, but are not too special. Kids that take up one seat and don’t need equipment that needs to be stored elsewhere. Although walkers and gait trainers should qualify under the law (ADA) for transportation, that is not the reality. And I can assume that any medical equipment that comes out when technology advances that is in the best interest of these kids will almost likely be denied for transportation service based on this experience. Goody.

For the last week we have had no bus service. Our contract hours with the school (Head Start) are 8:00 to 12:00. To say it’s a hardship to hold down a job and get our kid to and from school at those times is an understatement, especially when I commute twenty minutes to work one way. We have been talking a lot with our SEEC coordinator, Sue, who then met with her supervisor, Lori, to discuss it. In the meantime I contacted Kim, the bus scheduling person, and she finally gave me Sergio’s number. Sergio is the one in charge, and is Willie’s boss. He agreed to send Willie out again to my home to see the Kid Walk, but made no promises. Sergio also told me I could always leave her durable medical equipment at home.

I respectfully told him that he could leave his kids’ legs at home when they went to school too.

I think I may have used the word “ridiculous” five too many times in that conversation. Oh well.

Today I met with Willie again to take another look at the Kid Walk. Steve, a rep from National Seating, also arrived to make sure the Kid Walk was in good working order and to explain how to break it down since his company distributes it. Steve showed Willie how it worked. Willie asked about the locking pin and if it was a problem, I started to explain that we thought it was a problem, but that Steve had just showed me how to use it (before we had not be using it at all), but Willie interrupted and said, “It’s a problem? Yes or no.” Ugh. Mostly though he was pleasant enough. But he did mention other kids were denied bus service based on equipment issues and that their parents had to bring the equipment and children to school themselves. Whoa! That’s not legal is it?

My hope was to explain in a rational manner that denying a child transportation based on her special needs qualifies as discrimination based on disability. If she qualifies for bus service in every way except for her disability then policies need to change. And if they deny her again I will be forced to fight this legally. I think I communicated that. Willie wanted me to see it from his perspective. I can understand his perspective, but I could never agree that denying my daughter bus service would be in the best interests of my daughter or the community. (I started to cry. Ugh.)

He said we’d know tonight or tomorrow what their decision is.

I feel like I’m fighting a system of apathy.

The idea of a legal battle makes me sick. But hearing about other kids being denied service because of their equipment makes me feel sick too. Just having to fight this at all makes no sense to me. It’s just illegal. And this is an emotional hardship on our entire family when something like this happens. This is not the first time that we’ve been denied some service through SDUSD because of Laelia’s special needs. This is not the first time we’ve heard loud and clear, “We don’t want you.”

And Laelia’s self confidence just gets chipped away when this crap happens. I sat down with my daughter on the front step of our home after they left and we talked about how much everyone wanted her to be able to ride with the other kids. “I want to ride the bus!” Laelia said, “But it doesn’t want me.” I told her that Willie and Steve came over to our house just to try to work out bus service for her because she was so neat. (Okay maybe this is fibbing a bit. The transportation people are actually the problem, but since Willie has a first name that she knows, then in Laelia world he’s one of her friends, and it would be hard to explain that he’s not on her side.) She said that made her happy and she wants to ride with her friends again.

Then she asked if they’d let her drive the bus.

There was an elephant playing with a log that just fascinated Laelia. But when he dropped the log, Laelia’s eyes got big and she squeaked, “Mama his trunk fell off a little bit!”   During my explanation of the elephant trunk/log we got a call from our awesome case manager (from our insurance!) who saw the pictures of Laelia’s foot on this blog and said, “You need to get her to a doctor! Don’t wait until tomorrow!”  We had been very careful with her ulser sore doing wet/dry treatments, but we weren’t going to take chances. We made our way back home to grab showers and then headed over to Rapid Care. Sure enough Laelia’s foot was actually infected! And a rash was climbing over her skin. She needed immediate antibiotics. I was surprised because she never complained! 

Waiting for the Rapid Care doctor.

Signs of infection.

The Rapid Care doctor told us to see our regular doctor within two days. She wasn’t available, but another pediatrician in the same office was. So we got an appointment the very next day during their Sunday emergency hours. During that appointment (our forth medical appointment in the three short days the grandparents were in town!) it was confirmed to be a skin infection, but not a bad one! She wasn’t sick, had no fever, and it wasn’t in her bloodstream or something dangerous so we just had to keep giving her antibiotics and it would clear up! He bandaged it and gave us instructions for care and even miraculously gave us the green light for our trip to Disneyland the next day! (Laelia was talking nonstop about Disneyland so he made her day! She even invited him to come too!)

For the last ten days we have asked Laelia every night, “Where are we going in ten days?” Or “Where are we going in nine days?” Or whatever day it was. And every time she yelled, “Disneyland!” So after our appointment we asked her, “Where are we going tomorrow?!” And she replied, “The doctor?”  Ha! Poor thing.

Oh and at the mention of the “D” word, my Disneyland-loving (crazy fanatical fan) husband mentioned that Lali wanted to do more rides but we didn’t know how tall she was. So the doctor had the nurse come in and they measured her lying on the table. From flat foot to the top of her head she measured 36 1/2 inches exactly without having to stretch out her contractures. Well that was perfect for the one coaster she wanted to ride. Charley then asked if the doctor would write an official note just in case anyone gave us trouble about it. The doctor did it with a smile and Laelia got excited about riding her very first little coaster!

But not as excited as her daddy.

Doctor’s note officially stating she is 36 1/2 inches in length!

Laelia loves Disneyland. To put it mildly. She knows all the words to It’s A Small World and the Enchanted Tiki Room. She watches videos about Disneyland when we’re not there. Since we live very close to Disneyland and since she was a free ticket until she turned three, we’ve spoiled her rotten with visits there. She even went to Disneyland in casts, weeks after surgery. Sometimes the promise of Disneyland is the only thing that keeps her going after a hard doctor’s visit or post surgery.

Dumbo Flyers

Grandpa and Grandma caved and bought her a bubble gun.

So the coaster she wanted to ride was the Gadget Go Coaster. You have to be 35 inches to do this. No problem. She’s tall enough–or more correctly long enough–to ride. We got to the back entrance for wheelchairs (Grandma and Lali were sharing one), and when we got to the front of the line we said, slightly apologetically, “She doesn’t stand but she’s 36 1/2 inches.”

Cast Member Cindy: “She’ll need to stand under the line.”

Me: “She doesn’t stand or straighten her legs all the way due to a condition called arthrogryposis. But she’s 36 1/2 inches long. They measured her yesterday.” I said super nicely, feeling sorry for the cast member’s confusion.

Another AMC mom (Cheryl) told me this great piece of wisdom once that helps me in these situations. She said that some people just don’t have a file in their brain-folder for AMC. It doesn’t compute. In their minds based on their lifelong experience, all children stand and all children stretch out, so finding out there’s one who is different just plain rocks their world. It’s definitely a truism. We all have something that at one point we discover we don’t have a “file” for in our “folder.” The first time I met a Deaf person (Sue K.) she didn’t hear the door slam shut. That didn’t compute with me. I had never met a Deaf person, and even though logically I knew she was Deaf, I didn’t get that she couldn’t hear! Everyone hears doors slamming, right?!  I feel dumb now, but I understand when people give me *that* look when first meeting my daughter.

Cast Member Cindy: “No, she’ll have to be held up to the line then. That’s the rule. She needs to be this tall to ride, and she needs to be under the sign.” She gestured to that “You Must Be This Tall” sign.

(The only problem with not having a folder for something in your brain is that it’s sometimes really hard to incert the file in other people’s  folders.)

Me: “No, she doesn’t need to stand to ride.” I’m still smiling. “She has a disability. But I assure you she’s 36 1/2 inches.”

Cindy: “You’ll have to hold her up to it then.”

Eventually we realize we were getting no where and Charley was forced to hold her up to the darn measurement. She curls up while hanging there so Charley starts to explain, “See how her legs don’t straighten out? That’s because of the arthrogryposis or joint contractures in her knees and hips. You have to measure her lying down.” Even being held up to the sign, she is obviously to me tall enough if she could straighten her legs.

Cindy: “She doesn’t come up to the sign. She’s too short. There’s nothing I can do.” Cindy tries to walk away.

Me: “She doesn’t stand and she doesn’t straighten out! I have a doctor’s note, see!” I try to hand her my doctor’s note.

Cindy: “I can’t take that! I’m not a doctor!” She actually pushes the paper away. (Oh and only doctors can read doctor’s notes?)

Me: “Okay but look it states 36 1/2 inches long by proper measurement and it’s signed by her doctor and dated yesterday.”

Cindy: “Her safety is at stake here. I’m going to have to call my lead because my job is on the line.” She mutters more things about her job and how it’s in some sort of jeopardy because of my daughter.

Me: “Well here’s something I made and it’s not medical, it’s just a little card that tells you who she is and what she has.” (I’m still being very nice and understanding at this point.)

Cindy: “I can’t take that! You can’t give me things!” She pushes the card away with open hands and looks horrified.

Me: “Fine then get your lead, but you realize this is illegal to keep us from a ride just because she’s disabled.”

Cindy: “It’s fine.” She walks off.

Me (yelling at her back as she flees): “IT’S NOT FINE! IT’S ILLEGAL!”

Charley: “Okay calm down.”

Me: *huff puff grinding teeth* I go into advocate battle mode. Something I did not expect at Disneyland.

Ten minutes and several nasty looks from fellow park patrons later, THREE leads (managers) show up and surround us. We’re introduced to two of them, one hangs back blocking our exit.

Lead: “What’s the problem here?”

I explain that my daughter is definitely NOT the problem–the problem is lack of education of the staff. The lead goes through a spiel on how important safety is, once again making me some sort of bad mother doing something unsafe with my child. I correct her in full educate-the-people mode. I made her explain their policy for children who can’t stand. Apparently their policy is to ASK THE PARENTS! Something the staff must not understand. She then asks if I STILL want to ride the ride. I never did want to ride the darn kid’s ride so I turn and ask Laelia, who is fully capable of answering for herself, and Lali begs to ride. The lead seems charmed by Laelia’s enthusiasm and finally lets us on the ride. She also mentions that the only other ride in the park that requires this height requirement is the Matterhorn and asks me if we would like them to call ahead to make sure this doesn’t happen again? I said no thanks since I planned on now avoiding the Matterhorn like the plague. I just couldn’t fight another battle again today.  We finally got on the Gadget Coaster ride. Laelia loved it and begged to ride again. I was so near tears that I just couldn’t go back in line and deal with all those people again. So we fled. We then, after a short trip to It’s A Small World, went to Guest Services and I explain what happened. While I explained I also broke down into tears which I hate! Then I asked if there’s some sign/card/placard they could give us so this doesn’t happen again. (Even something hand written.)

Cast Member Colby: “We don’t really have anything like that. If your child can’t stand it’s our policy to ask the parent for the child’s height and we take their word for it.”

Me (crying my eyes out): “But that doesn’t work out in real life! I’m still seen as a bad guy. So can I have some sort of card with her height on it? Or a pass for certain rides so we can get on without harassment?”

Colby: “We don’t have anything like that. I can offer you some free ice cream… if you want.”

Me: “Can I make a suggestion that you have some sort of official card with, say, Micky’s picture on it, and all it has to say is, ‘Can Ride All Attractions for 35 inches and smaller.’ Or something like that?”

Colby: “We don’t have anything like that.”

Me: “No, I mean that’s my suggestion. Like for a suggestion box. You should have something like that. Can you pass that along?”

Colby: “We don’t really take suggestions.”

Colby was actually really nice (and we did get five ice cream sandwiches out of him), but I wish he would have at least lied and said he would pass along my suggestion. Well maybe he thought better of it later and did pass it along. It’s a good idea! Some children who can’t stand yet are small enough for parents to bring strollers instead of wheelchairs to the park, and those children will run into this very problem! We can’t be the only family!

So we headed over to California Adventure. Laelia fell asleep so we left her in a corner of the park with Grandma while we rode the Screamin’. When we got back, Laelia had been awake for the last twenty minutes and begging Grandma to ride the bumper cars. That was the ride we parked her in front of for her nap. So we got in line. Turns out this ride has a height requirement: 35 inches. You’ve got to be kidding me. We approach the entrance by the “You Must Be This Tall” stick with dread. I hold my breath. Charley chivalrously says he’ll handle this. He calms me down and says that now we have all the tools and rules we need to get by without a fight.

Cast Member Nathan: “I’ll have to check her height.”

Charley who is holding her: “She’s 36 1/2 inches and doesn’t stand or straighten out all the way. She won’t be held under the sign. But I can tell you she’s exactly 36 1/2 inches.”

Nathan: “Then I’m afraid I can’t let you on.”

What?!

Me: “If a child can’t stand isn’t it your policy to ask the parents and take their word for it? We were just told this by three leads!”

Nathan: “Um, if she can’t stand under the sign then she can’t ride.”

Me, lowering my voice dangerously: “She’s disabled. (Wow, she’s had to hear that a lot today.) She’s 36 1/2 inches long. You’re not allow to ask for this, but I’m VOLUNTEERING  her doctor’s note with this information written on it.” I hold it up in front of him.

Nathan looks around furtively, “Okay go in.” He’s speaking quietly like he’s letting us get away with something.

Me: “She meets all of your requirements for safety!” That’s my way of saying, “We’re not getting away with something and you’re not doing us a favor here! She rightfully gets a spot on this ride with every peer who is able-bodied.”

Okay this ruined my day. We joked about marching back to Guest Services and getting more ice cream. If we stayed much longer we’d walk out of there with a year’s supply! Ugh but even chuckling felt hollow. My daughter seemed to be having a great time, but it’s not like this was all lost on her. She saw me cry. She heard over and over again that she couldn’t stand, couldn’t straighten out. What does that do to a child’s thinking about herself? Plus I was full on depressed. She would beam up at me and I would force a smile back down at her through the agony.

I mean in one day I’d been told that I’m a bad parent by putting my child in danger, or I’m a bad person by trying to do something sneaky. I risked the employment of the cast members by not leaving, and made everyone uncomfortable because they had to deal with my sweet daughter wanting to ride a darn ride. In conclusion I must be a bad person. That’s what I read in the eyes of other guests in the park who walked around us to get on the coaster or just stared with this look that read: You, Mother of Different Child, are bad. I was completely vilified.

I hate when people are unhappy with me. I hate being *that* mom. I hate when I’m not following the rules. If it had been just me there I would have walked away rather than welcome a conflict. But it was my daughter. I’d do anything for my daughter, and I won’t let people trample her rights as a 36 and a half inch tall young lady. But I don’t know how to shield her from this. Or from the other guests at the park who look at her as the poor little girl with the bad mother.

It was right before we left the park, right as I was just feeling my worst, that Laelia coughed. And it wasn’t one of her cute little coughs either. Oh no, it was a Nasty McAwful cough. One of those coughs smokers have. Sure enough she was getting sick. Of course. At Disneyland. We went home.

That night she coughed more and more as the hours went by. By the next morning she sounded hoarse, couldn’t stop coughing and had a runny nose. She also felt warm to the touch. I jumped online and discovered that these antibiotics we just started taking the night before can actually make colds worse or make you more susceptible to colds because they indiscriminately kill the beneficial bacteria in your body. And apparently they work fast. Goodie.

So I’ve had to cancel her PT, her chiropractor, her play date, the rest of her week at school, etc. And I also had to take another leave-without-pay day off work. 

Not only that but we also went to our orthotics appointment finally only to discover that Laelia’s AFOs weren’t working for her at all. We actually can’t wear either one anymore because there are now holes in both of her feet! (And she is required to wear shoes to go to school!) Is this really happening?!!! The AFOs have no padding and the heals of her feet were left to scrap the back of the shoe. It’s not just an issue of needing more padding, it’s a fundamental issue. So now we’re trying to get someone to make us new ones. Doctor van Bosse has been wonderful about emailing and trying to coordinate with the orthotics guys in Philly, but we may have to get something going down here as well. It’s a mess. The doctor we need to see locally isn’t available to get us in for an appointment for one thing. So Charley emailed Dr. vB our orthopedic’s phone number and hopefully they will coordinate between themselves. In the mean time it’s been suggested by more than one doctor that we get Laelia in plaster casts (!!!) until they can work out new AFOs for us that could take six weeks to figure out! Back in casts!!! No!!!!!!!!!!

Did I mention we did Turtle Talk with Crush and my daughter didn’t get called on because she couldn’t raise her hand? Did I mention our CCS appointment that we finally got worked out didn’t give us an OT eval? Not only that but the paperwork said that “the mother requested PT only!” Which is just wrong! So now we’re back to fighting with CCS who hasn’t returned my phone call after a week of waiting. Yeah. So it’s been less of an Enchanted Tiki Room week and more of a Mr. Toad’s Wild Ride lately. We keep waiting for Laelia to get better and not be in pain before taking our overnight break that we got for Christmas, but I’m starting to think that is not going to happen. I just hope this can all get worked out quickly and she can be a sickness-free, medicine-free and pain-free little girl again.

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.

That spot was getting worse and worse, and we were trying everything we knew to keep the foot in the AFO (and keep it from re-clubbing). But nothing worked: not band-aids, “working” the straps, a cotton ball between the sore spot and strap, putting the strap as low as we could off the sore spot–nothing. So finally after the blood gyser last night, we gave up and left the darn AFO off her all night. It was the first full night’s sleep she’s had since January 7th. I wish I could say the same for us, but we were up worrying about bleeding issues, re-clubbing issues and dealing with guilt. With regular clubfeet we wouldn’t worry, but an arthrogryposis clubfoot likes to curl up very easily. They are the most stubborn feet! And we need that AFO to avoid surgery!

As you can see in the above pictures I put her back in her old AFO today that doesn’t do much for her and is too small, but it’s better than nothing. There’s a hard piece of plastic between her foot and the strap on the old shoe so it doesn’t hurt that area as much. We are going to try and meet with Laelia’s busy pediatrician tomorrow (Monday the 31st) so we can get a referral to an orthotics company ASAP and try and “fix” the AFO. Her AFOs were made in Philadelphia so it’s not like we can march over there and demand they fix them. (PS: I had found the old AFO in my unpacked bag I had taken to Philadelphia. I haven’t found the time to unpack in almost three weeks!)

In other news, CCS has not moved an inch on our PT appointments. They have just sat on our paperwork with their thumb up a delicate part of their anatomy. I’m sick of this. We are waiting for no reason! I would fight this tooth and nail and make a big stink if I knew how much longer it would take, but they won’t give me any idea! I would just hate to complain and then have them call me the next day saying they were done. But it’s getting ridiculous waiting for people to just stamp an approval on our case. We already know we qualify for their medical therapy program based solely on our diagnosis! So why has this been so hard? And it was suppose to have been rushed since she got out of casts three weeks ago!!! And she was suppose to have been getting physical therapy two times a week for the last three weeks! So frustrating!!!

Since CCS are punks, we have had to try and push our insurance to move faster. Our case manager, Gretchen, never returned my calls. Ever. Thanks Gretchen. But thankfully we got a new case manager through CPMG named Stacy. My husband likes to say, “The best thing about Stacy is that she answers the phone!”  But actually we like Stacy for more than just that. While I was down with a bad cold and sore throat, Charley took up my job of calling and bugging people. He reached Stacy and they spoke on the phone for over an hour! Incredible! She gave us ideas about how to work the system to get Laelia’s AFO fixed, and she seemed to understand how important this all was. Finally someone helpful! Prayer answered. Stacy even gave us our much needed PT authorization!  Then Charley immediately called Children’s Hospital who only has one scheduler person who doesn’t work Fridays!! Ugggggggh. So we finally have auth, but still not PT. Hopefully soon.

While Charley was on the phone with Stacy, Laelia was rubbing my foot to comfort me since I was miserably sick. She’s a total sweetheart and just cares so much for people! Then she started “reading” me stories. At one point she said, “Mama, I’ll read you a God story.” Then she grabbed my Bible off the coffee table and held it in front of her upside-down, opened to the middle, and began, ”Once upon a time there were three little pigs and a big bad wolf.”  Best Bible story ever!

Laelia is adorable. Even when she’s in pain she’s adorable. On Saturday we went to get our family picture professionally taken for the first time ever. I knew Laelia was in pain so I told her I had a present for her (small thing of bubbles) if she could last the outing with a good attitude. When she’s in pain the slightest thing can set her off. (I’m the same way.) So when she was playing with a picture sample and it got taken away she started to act up. But then immediately as if by magic she changed her tone and apologized to the people nearby. Right as they were praising my parenting she added, “Now where’s my present?”   

She was also a good girl during her first ever chiropractor appointment on Thursday! We’re trying to see if working her spine will allow her more range of motion or strong, more stable movements. The chiropractor loves her because she follows all his directions perfectly. She laid her head down on the table and took deep breathes as he pressed down on her lower back. I thought she’d throw a fit since he was a doctor and he was touching her, but I think his blue jeans and great voice (better than Ted Williams!) put her at ease. It looked relaxing! Charley and I found ourselves watching this happen while holding hands and grinning. I didn’t know my wiggle worm would enjoy that so much!  Because she was so great she got to pick the dinner of her choice. She chose Apple Jacks cereal dipped in ketchup. And that’s the last time she’ll ever get that deal.

Also, and this is exciting for me, we have a new rule in our home! The rule states that there will be no more watching TV or movies of any kind unless doing active weight bearing at the same time. (The rule does not apply to adults or Saturday mornings when adults want to sleep in. ) So far this rule is proving to be a great encouragement during physical therapy. Backyardigans and Blues Clues and KPBS shows are even more enjoyable when you’re earning them! Plus she doesn’t overdose on TV this way since she can’t watch much while weight bearing. But even simple weight bearing (like sitting on a ball with Mama holding her hips) counts, so she can last a whole show. It’s working really well!

Also we received a gift from our dear friends to pay for private PT out of pocket until CCS does the right thing. The same friends also put us in touch with a friend of theirs who is a PT, and that friend put us in touch with a closer PT who will most likely be doing the therapy soon. I’ll call her tomorrow. It has meant so much to me. I’m so blown away by people’s generosity.

Another example of generosity is that for Jewels for Jared, our friends and family bought bracelets to support baby Jared and had them sent to Laelia in her size! She has thirteen (!!!) $5 bracelets that you all gave her! She earns them during PT exercises. Thanks so much! Not only did you guys support Jared’s medical expenses, but you also supported Laelia’s physical therapy too! Bracelets are great motivation to finish a 30 second push up!

Okay we just put Laelia down for the night and it sounds like she’s sleeping. No screaming. I hope it lasts. We have to do Laelia’s foot stretches every hour during the day since her AFO is not doing the work for us. The stretches have gotten easier, not because she cries less, but more because we’re getting used to it. I’m relieved that my baby’s cries no longer kill a part of me, but at the same time I’m not thrilled about being callused in that way.

So much is still up in the air right now. Where we’ll be living, how she’ll go to preschool in pain, what to do with my job and how to deal with her right foot are just a few of the unknowns right now. We’re hanging in there though. Life with arthrogryposis is sometimes hard, but this girl has brought so much joy to our lives. I mean it. I wouldn’t mind having another one with the same condition. Charley hears this and thinks I’ve gone mad.

Maria (coworker): “Sorry, karma is a sociopath.”

We desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! We haven’t been getting PT (physical therapy) because it gradually got too expensive and we kept cutting it back until we were going once or twice a month. And we found out that was screwing over our daughter. Her gains have diminished, and she’s three years old and is very behind in her gross motor skills. Plus now that she’s post op (just had surgery), PT is even more important!

I contacted CCS (California Children’s Services) whose brochure lists arthrogryposis as a condition that qualifies us for physical therapy. I spoke to a friend of ours in San Jose whose son is getting his PT through them for the same condition. (He also just had the same surgery.) His family did private insurance too until it got ridiculous. I filled out the paperwork and faxed it to CCS. My contact there, Melanie, said I needed a doctor’s note that shows Laelia has arthrogryposis, and it needs to be from a doctor who has seen Lali in the last six months.

I contacted Laelia’s pediatrician for the needed information, but since they were busy and didn’t return my call right away I started in on her local San Diego surgeon who we saw the month before we flew Laelia to Philadelphia. (We like to keep him informed of what we’re doing. Good thing we saw him!)

We desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! All I need from this office is a piece of paper that says “arthrogryposis” somewhere on it faxed  to CCS.

I got transfered three times when trying to get a single doctor’s note. Finally I got a person who sounded like they could help me. I explained I was applying for CCS and I just needed proof of my daughter’s arthrogryposis in the form of a doctor’s note. This person told me that I did not qualify for CCS and asked if I was trying to get into MTU. I asked her what those letters stood for and she said, “MTU–(slowed speech) Me-di-cal Ther-a-py Un-it.” Oh okay well is that what the CCS  program is called where you get physical therapy for arthrogryposis? I still don’t know. I don’t know if we were ever on the same page. This woman told me I had to get a prescription for that and come in to see the doctor and other confusing, misguided, unasked for information.

We desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! All I need from this office is a piece of paper that says “arthrogryposis” on it faxed to CCS. (I’m repeating myself a LOT these days.)

She responded (dropping her voice to patronizing) that CCS was for the poor, uninsured kids (and spoke to me like I was taking great advantage of all the needy babies of the world), NOT for kids who obviously have private insurance! This is where I broke down and asked her if it was reasonable to pay $500 a month for therapy when we have a qualifying condition for CCS?! Did having arthrogryposis just mean you needed to be rich? Or if you’re middle class does having arthrogryposis automatically force you to go into debt or your child doesn’t get to walk one day?

She said she couldn’t help me, CCS wouldn’t take me and then she forwarded me to Susy (the doctor’s assistant) with instructions on what to ask for. Well Susy–wonderful, wonderful Susy–asked me what I needed, heard I needed a doctor’s note with the word “arthrogryposis” on it and said, “Okay.” Finally! But of course it’s not that easy. She first had to fax me release paperwork to sign before she could get me the doctor’s note. But she did it so quickly that it wasn’t a burden. And I was even able to use my fax machine at work.

Because of what I was just told by the other lady, I called up Melanie at CCS crying, “Is it true? You won’t take us? Please help us get my daughter PT! Please, we need it!” I got her voice mail so I went ahead and faxed in the application and the doctor’s notes. She called back and said it would take until around Tuesday to look over what I faxed in so we can talk in depth about it then. It takes time. So now we wait.

We desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I know I can’t use CCS and private insurance at the same time, and in order to get CCS I have to lose the therapists we do have (who I can’t see because of red tape, keep reading) who have actual experience with AMC and who are responsible for some of my daughter’s biggest accomplishments. So I am trying to see our local PT and OT so they can make a bunch of hand splints and give me enough advice to last me through the new guys. But Children’s Hospital’s Developmental Services require a doctor’s prescription and insurance approval. (In a good system you would have a card that said, “I have arthrogryposis,” and whoever saw it would drop everything and give you physical therapy on the street corner if necessary!)

So I spoke to my insurance (that switched from Aetna to Health Net), and got transferred a lot before a nice woman named Glendy said Health Net couldn’t help me and I had to contact CPMG’s medical management department for a new case manager and to check on the pending authorization that’s still up in the air.

We desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I called CPMG whose office was closed until 12:30 pm today, and then also closed for the weekend and Monday for the holiday. It turns out that it takes five business days to review and respond to a request for PT, but they never received my request!!! Ugggggggggggh! I explained to Andrea in customer service about my daughter and her immediate needs. I asked for a case manager. I had written a letter stating what arthrogryposis was and that PT was the #1 required treatment for it. I included pictures of Laelia and wanted to know where to send it. Andrea (customer service with CPMG) made the process sound long and hard and completely confusing. So I made her break down the steps for me. Who do I contact? What process is there to get a case manager? How do I get this NOW? Well finally I mentioned that our old case manager was named Gretchen and it turns out she’s still with CPMG, and even though our insurance changed, she would still be the one to contact. So I left her a message that she won’t get until Tuesday. I made sure to sound desperate.

Because we desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I then called Children’s Hospital’s Developmental Services. Alicia is the one who makes the requests of the insurance so I wanted to talk with her. I had already requested PT from them earlier in the week, but just found out Lali’s insurance doesn’t have it. Well Vanay (I’m guessing the spelling of her name here), who was taking over for Alicia since she’d been out since Wednesday and wouldn’t be back until at least Tuesday, couldn’t help us because the request wasn’t finished (no one told me there was a problem!), and they needed “something”–some notes or something, they couldn’t tell me–that wasn’t provided and wasn’t getting worked on! That’s why CPMG didn’t have the request. IT WAS NEVER SENT!!!!!!!!

But we desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

One thing Vanay mentioned is that maybe we needed an evaluation. Well we don’t, but it turns out we don’t need insurance approval for an “evaluation,” and maybe Sylvia would (wink wink) just do PT with us, so I agreed wholeheartedly that we needed an evaluation. Sure, whatever, just let us see our PT, and however soon we can get that is great!

It will take at least two to three weeks. Of course.

Which is frustrating because we desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I asked Vanay to contact our physical therapist, Sylvia, and request we be seen sooner, to see if the evaluation be shorter so she can fit us in next week (which I was informed was against the rules) or that something, ANYTHING be worked out at ANY time SOON and we would be there. But they only had an email contact for Sylvia and they probably couldn’t contact her until Tuesday. (If they even tried.)

I’m crying now because we desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

Dr. van Bosse had mentioned that we could travel up to LA for PT if nothing else could be worked out. Since it looks like if I want my daughter to receive care in the next two to three WEEKS then I truly have no other option (or if CCS can only see us once a week then I’d be forced to supplement it with traveling to LA anyway) so I called Shriners’ main number, explained our whole situation and waited the 24 hours it took for them to call me back. I spoke to Applications since I was told to, but they transferred me to Medical Records who got all our information so they could request medical records from the Out Patient Department in Shriners Philadelphia. The process will take–Can anyone guess?–two to three weeks! WHY?!!!!

We desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! NOW! RIGHT AWAY! LAST WEEK!

I then called and left a message with Shriners’ Out Patient department in Philadelphia letting them know that they would be getting a request for my daughter’s medical records and to please get it to the LA Shriners people ASAP to cut down on the two to three weeks of processing time it will take to get PT. I’ll call them again on Tuesday. I’ll call lots of people again on Tuesday.

We desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

My aunt Linda R. wrote to my congresswoman, Susan Davis, our governor, Jerry Brown, and our  representative, Juan Vargas on our behalf. I did get an email from Susan Davis’ office asking what exactly they could do for us? “Make someone give us PT NOW,” didn’t sound like an intelligent request.

Really this is exactly what we went through when Lali was born, and delaying her PT and OT actually hurt her and has negatively affected her for life. Arthrogryposis literally means joint contractures, and they are the worst off when kids are little. The more you can work them when they’re little, the more you can avoid surgeries and more needs when they’re older. I’m serious that there should be something in place that when you have been diagnosed with a condition that REQUIRES a certain treatment, and without immediate treatment the child will not function properly in later years, then you should receive that treatment in a TIMELY manner no matter what the circumstances.

So that’s what I want. I want kids to get their treatments immediately because it’s important. I want a PT to come volunteer to do PT with my daughter or accept money out of my pocket instead of out of a government program or my insurance, both of which take WEEKS. We really are needing this now. I was told if I wanted my daughter to ever walk I needed to get PT twice a week and do a ton of therapy at home. Without direction from a professional PT, what can I do at home? I’m not a medical student!!!

So I was super helpful to everyone who called my place of  business today looking for basic customer service because that’s my job. I’m a service to the customers, not there to make their lives harder and my job easier. And I’ll be an excellent customer service rep for as long as I get to keep my job and until my daughter’s needs swallow that part of my life as well. I was just hoping that someone would take me on as a good deed for the day and save me a lot of grief. I already have to torture my daughter everyday, causing her lots of pain. Plus I’m suffering with stress and dizzy spells and other health concerns. Just once could someone help us? Find a way around the rules? Do the right thing?

Sheesh. Thanks for nothing, karma. You ARE a sociopath.

PS: If a mom of a kid with special needs says, “Yeah I’ve been fighting with insurance and doctors lately.” Just know that that woman is going through something you hope to never go through. Give her a hug and a spa day and then take the phone and offer to wait on hold with whatever heartless entity she’s battling so she can pee.

Pain reduces my little girl into a ball of infant-like need. She loses her language skills, her manners and her ability to function. Laelia is in a lot of pain. I cause the pain. I think right now we both don’t like me.

Laelia’s doctor gave it to me straight. He laid out what therapy Laelia would absolutely require and how often to do it. I realized, as I immediately started sobbing in front of him, that what she needs is much more than I’m providing now. Constant care. Wow. So I went home with a heavy heart as I tried to figure out how to make this work. Right now I’m only working half days at my job. And I’ve already met with my boss to try to figure out what to do. Charley and I talked about me giving my two weeks notice, but instead we’re trying to work something else out with my work so we can still afford to move. It’s all still up in the air. 

Laelia needs so much. She needs stretching and massaging and all sorts of torture. Her AFOs are so painful. She screams when I take them off or cinch them up or look at them. She screams and cries most of the time I’m with her.

We don’t even put her shoes on correctly while she’s at school because she’d be in pain the whole day. And if it’s too hard on the school, God knows they’ll make it harder on our family. I talked with a school admin on Monday who was unhappy Laelia still needed her wheelchair. This person really thought Laelia would be walking after surgery and seemed very put out. She mentioned it already takes a long time for Laelia to feed herself and get around as it is! Ten bucks says this person doesn’t know the name of Laelia’s condition. Twenty bucks says this person has no idea how it feels to have a cast off and your atrophied limb stretched. The admin said, “Now do you really want your daughter in a wheelchair for four hours?!” I wanted to say, “NO I WANT HER RUNNING AROUND!! OBVIOUSLY!”  I just calmly explained AGAIN what Laelia’s condition was and what her prognosis was. I’ve repeated myself so many times, I don’t know how I’m unclear! Bottom line: all her doctors, except for the one very special guy we travel 3000 miles to see, tell me she will never walk. Uggggggggggh!! I think this school admin person sometimes singles us out because a disability is hard for them. During that same conversation with the same admin, they actually said, “Just tell me what you expect from us? What do you want us to do for you?” I hadn’t asked for anything at this point; besides asking where to leave her wheelchair. Now would that person have ever asked that question of ANY other typical students’ moms in that school? The answer is no.

I’m exhausted. I keep telling myself that the worst of the pain is behind us and the rest is temporary. She’s reacting so badly to foot stretches that we’re considering taking her in for an x-ray to see if anything is broken. Just for peace of mind.

We’re not sleeping. Laelia wakes up several times in pain.

I’m a mess physically. I’ve been to three different doctors who can’t figure out why I’m dizzy or why I get vertigo. Laelia screamed for twenty-eight minutes straight while we waited for one doctor today. The receptionist was just putting phone calls straight on hold since she couldn’t hear over the cries. I couldn’t get Lali to calm down and I tried everything. The doctor didn’t even find the cause of my vertigo and we went home feeling worse than when we went.

I’ve been crying for four days straight: at the doctors’ offices (both hers and mine), the grocery store, at work, while driving…

And if we didn’t need to deal with everything else, I’ve also been trying to call my new insurance who doesn’t know who I am, Children’s Hospital’s developmental services who doesn’t like that our insurance changed and won’t let us see our therapists for weeks, California Children’s Services who demand official doctors’ notes to prove she has AMC before processing our request (and if we do get them they won’t allow us to see our OT hand specialist anymore), Shriners Hospital in Los Angeles who we need to work out how to bus us to them, etc, etc, etc, but no one can get Laelia the PT she needs NOW. Shriners is the closest to providing it, but that would mean being gone six hours a day, two days a week. Not ideal. And her doctor said if I can’t get her professional PT two times a week to call and write my local congress people and senators. *cry*

Surgery without PT is like getting braces on your teeth and then once they’re off, not wearing your retainer because no one will give you a freakin’ retainer for WEEKS and then your teeth go back to being a mess. Stupid, right? Oh and no one will just work with us or make this easier because it would inconvenience them. For example, please no one take my word that Laelia has arthrogryposis. We just like to give her surgeries for fun. Just assume we’re lying and demand multiple official copies of doctors’ notes from doctors who don’t return my calls. Ugh! What? LOOKING at her isn’t good enough?

Okay I’ll stop being so sarcastic and angry. I’m just so tired. I’m doing all this for the long term results. This is ALL temporary. Someday life will feel normal again, like it did before when we got on top of all her treatments, doctors and therapies the first time. *deep breath* Sorry, I’m better now.

But what a shock when her legs slid right out!  For the first time in her life, my daughter has legs that are positioned correctly to fit in the shopping cart seat!  Thank you Father God! Thank you Dr. van Bosse! Thank you Shriners Hospital for Children in Philadelphia!

Laelia’s legs, a history:

10-10-07 – Laelia’s splayed, externally rotated legs at birth.

10-29-07 – Laelia’s first casts to correct her feet at three weeks old.

2/23/09 – One of our attempts to keep Laelia’s legs together.

2-14-10 – Laelia’s corrected feet (that finally fit into shoes) look great, but her legs are still so splayed and outwardly rotated that her toes point away from each other and her knees go off in different directions.

(Her shirt says, “Dr. van Bosse Fan Club.”  Thanks Jessi!) 

1/11/11 – After seeing Dr. van Bosse and getting her osteotomies, Laelia’s legs are now straight! Her knees now crown her legs instead of jutting out to either side, and her toes point up instead of away from each other! She’s in the position most people have naturally when sitting or standing! And boy did she work for it!

The trip back to Philly was exhausting.

And required a lot of travel. Her friend, Justice, gave her a push, but he didn’t go all the way to Philly so we had to get on a couple airplanes too.

When we got there it was so cold! Too cold for this little California girl!  Lali had never seen snow before and asked me why it was wet and cold. She thought it would feel like pillows. :)

At the Ronald McDonald House we spent time with Sophie, Ben and their Mommy, Tammy! (The next day the five of us would all get in a big rental car and drive to Shriners!)

Mama got practically NO sleep that night… or the next night… or on four of the five airplanes we took. The reason for that was one little girl who would not let me sleep. The only sleeping she did do at the RMDH was when she was faking it for this picture. Mommy about strangled her. :-/

The next morning we waited for our appointment with our friends. Here’s baby Lexi!

Before cast removal.

After cast removal.

Lali’s new legs are so straight that I often find her staring at them like this. My favorite Laelia quote in her sweet little voice, “I’m very beautiful and straight now after my surgery.” Precious!

Her legs go together!

Her legs go apart! (She’s sporting the Wicked Witch of the East socks. )

Oh and here’s a video of her waiting for Dr. van Bosse.

Laelia took FOUR baths while in Philly; I just emptied the tub when it got cold and filled it back up again. Each time a new layer of dead skin got gently massaged off. She LOVED getting bath time back!

Laelia’s feet (especially the right foot) swelled up pretty bad after our three (in one day) airplane rides back home. It was because of the new, aggressive AFOs and all the pressure they caused. Now she gets foot massages everyday until the swelling goes down.

But no matter how bad the travel, surgery, recovery, swollen feet or negative comments from strangers got, look at this end result! Look how straight she is!  Compare the above picture of her lying on her side to this!  Amazing, right?!

So now that I’ve gone through the eye candy (aka pictures), I guess I’ll sit down to actually chronicle our journey. It was long and hard. Wait, that’s summarizing our journey. I guess it’s going to be hard to write about. Half of my brain no longer exists because of this trip; it was that exhausting.

I just want to say we had zero problems with flight attendants. Every one we met was courteous or helpful or nice. This is a major improvement from last time! And this is the first trip where I prayed about this specifically. It just made the whole trip seem surreal. Where were the fights? People I handed Lali’s card to were just really interested in her. It was great!

I also want to say that our needs kept getting mysteriously met. For instance, I got a rental car, but it was going to be too small to fit all my passengers. But before I even realized this I was getting help out to my rental car by a nice lady (just another traveler) when I heard her whistle and remark, “Wow, that’s a nice one! That must have set you back.” I was totally confused as my tiny rental car was unexpected, unasked for, upgraded for free to a larger vehicle! It fit all of us including three casted kids in the back, all our stuff, a wheelchair and a double stroller. 

But not only that, our little needs got met too. I ran out of arms to carry things on the plane and several strangers at several different times helped me. Lali and I were hungry but we had no cash for the cash-only cafeteria so they gave us food at no charge. We got lost, but ran into a security guard we recognized who gave us directions. Getting lost meant I didn’t have time to stop for gas for the rental car, but Thrifty Rental decided to waive the fee and cover the gas. It snowed, but we stayed on the road. The Ronald McDonald House doesn’t take reservations, but we were able to stay at the house we wanted that was closest to the hospital. Laelia was an excellent flyer and was well behaved through five airplanes! That in itself is a miracle! (And when we got back and I praised her in front of her father, Laelia beamed with pride.) I had a vertigo episode so bad that I fell over during Lali’s PT appointment, but that was the only bad one the whole trip and it was in a safe place!  Laelia would not sleep at all, so we ended up leaving at 3:00am our last night there because we were up anyway. We would have missed our flight if we hadn’t since we got lost, the elevators at the airport were broken and the flight was at 6:05am!

Pretty much lots of things just worked out. If I had written them all down, I could write a whole book of blessings! Our needs were met again and again. Our comforts not always, but our basic needs were covered.

I had a sore throat, vertigo, stomach cramps (diarrhea and vomiting), a headache that only got worse when I got home, and stress and dizziness caused by lack of sleep while on this trip. I didn’t sleep more than about three hours in four days. So this was a hard trip. In fact, I got so sick the night before our appointment that I stopped up the toilet in our room to the point that we had to switch rooms!

And the whole while one special little girl refused to let me sleep; she was too jet lagged and excited. (She would not sleep the next night because of pain and discomfort.) I yelled at her once. I said–and I remember it exactly since it’s the second time I’ve ever yelled at her–I said, “I’m SICK and TIRED of YOU!”  Since then if I’m down or frustrated Laelia will ask me, “Mama? Are you sick and tired?” It breaks my heart.

I tried Lali in the bed with me, Lali in the other bed, Lali on the floor and even Lali in the closet! Nothing worked. She would not sleep. Finally in the middle of the night (around 3:30am) Lali asks me, “Mama, will I go to Heaven like Grandma if I die?” Okay now I was wide awake. I told her she wasn’t going to die, she was just too sleepy and needed to get lots of sleep. (I was very desperate for sleep.) But she asked again, “Will I be with God if I die?” Sure honey, just sleep now. But it seemed to bother her so I cuddled her close under my chin, her fuzzy hair going up my nose, and said that she was God’s most loved kid. Then when it was clear she would not sleep I told her her favorite story of Adam and Eve. I told her how God created Adam and Eve and how good they were and how he loved to hang out with them and how Mama is sure they always went to bed on time and slept through the night.  Laelia loves to chime in that they ate the fruit when they weren’t suppose to and that’s called sin. And sin is “anything we think, say or do that makes God unhappy.” (Insert Laelia’s sad face here.) And how sin pushes God away (insert Laelia pushing me here) because God is holy. Then I resume my story once I get it back and add that God caught them in the garden of Eden all naked and ashamed so he sacrificed an animal, using its skin/fur to cover their shame. And how the punishment for sin is death so people used to sacrifice animals to cover their sins temporarily. But how Jesus was called ”the Lamb of God who takes away the sin of the world.” And how he died in our place, to take our sin away in the same way. Then he rose from the dead. So Laelia said, “Jesus died for my sin like a lamb! Now I can be with Holy God!” And she accepted Jesus as her savior with all the passion of a three-year old trying to get out of bed time.

Before we realized it, it was morning and we’d gotten zero sleep. Time to drag ourselves into the snow for cast removal, AFO fittings and a very special, life-altering (although we didn’t know it at the time) doctor’s visit.

Our insurance change slowed the whole process down a bit. Cast removal was a dramatic event. Laelia screamed louder than I have ever heard her scream before. It was unnerving. And the screaming lasted as long as the cast removal, a whole 20 solid minutes since they had to saw around the bars. Then we were on to x-rays. These were the first x-rays she ever took in her whole life that she didn’t cry/scream through. (Small victory!) Then off to her AFO fittings. That took forever. It was at this point that we realized no one had a small child’s potty for her to go number two in. And she was afraid of the adult toilet because she could fall in. So she had to go number two in a diaper while waiting for the AFO guy, which embarrassed her a bit. When we finally got to our doctor’s appointment, AFOs in hand (well, on feet) it was after lunch.

We briefly met Zak and his daughters, one of which is Grace who has AMC, and the Nalle family whose blog I follow. The Nalles adopted Aaron and this was their second trip to Philly–their first casting. Poor Aaron.

Then we finally got to see Dr. van Bosse. Even though he was pleasant as always, we were hit with a life changer. Laelia needed a lot more than what she was getting. She needed two PT appointments a week with a professional. She needed stretches and exercises several more times a day. She needed weight bearing. She needed her feet stretched. And if we couldn’t get these things then we needed to start contacting our local government. We could no longer just do PT and OT once a month because it cost $80 a visit. If she is going to walk, we needed to step it up.

Well I work full time so that creates an issue. Her school won’t do a darn thing, not even simple stretches. It’s a mess. Dr. vB also mentioned that if worst comes to worst I could have her bused up to Los Angeles to get free PT at the Shriners there. That would literally be six hours away from home twice a week.

And on top of it all, it was going to be a painful time for Lali. Especially the first two weeks.

My husband and I aren’t always graceful in how we handle all this stress. Charley once asked me once I got home to stop doing Laelia’s stretches in front of him because he couldn’t take it anymore. Laelia’s pain makes us crazy. And I get so upset with how everything has to be so much harder for her. She can’t do simple things seemingly everyone else on the planet was born doing naturally without huge effort, surgery and pain! It sucks! Laelia says, “Pain is good because it means I’m getting better.” At least one of us has a good attitude… when she’s not screaming.

And I’ve been dealing with her preschool as well. They are a government-run facility, meaning they can’t “quit me.” But the head admin there can be the least amount of understanding as humanly possible to make our already miserable lives even more hard. It’s willful ignorance.

So life has changed, and life is hard, but we continue on. Our beautiful daughter looks at herself in the mirror often and stares at her straight new legs while smoothing them with her hands. I don’t think she gave it much thought before, but she now thinks of herself as very pretty. And she is. 

We weren’t given bad news in Philly, but we were handed change. And that’s always hard. I hate change. It makes me feel out of control. I like things to stay the same. But I know if they did then my daughter would not have her lovely straight legs. I just need to focus on the positive.

Maybe I’ll go buy a shopping cart and then just spend hours putting my daughter in and out of it. Just for the fun of it.

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!