Laelia Sky

I don’t know whether or not to post this under the category of “angry” or “humor,” since it’s so infuriatingly silly it could be either.

(And I’m not quoting anyone word for word, but here’s the story recap.)

I needed Laelia’s PT, OT, Biopsy, Surgery, Newborn, Orthopedic and all her other records to go to Seattle Children’s Hospital for the Arthrogryposis Clinic.  No problem.  So I requested them on January 26th.

25 cents a page?! Fine.

Wait. Wait. Wait. Nothing.

I call my contact at Seattle Children’s. “When are your records coming?” She asks innocently. “I have to get these to the doctors ASAP!”

Blarg.

Our pediatrician is awesome, so one quick call to his office and Lety is rushing out the records that day. Yay!  The hospital records, on the other hand, were a whole other story.

Last month I called Rady Children’s Hospital’s customer service and got all the information (or so I thought) on requesting forms. They sent me to their website where I printed out the correct form, took it to Children’s Hospital personally, watched the lady scan it into their system, called to make sure it was being processed, and then forgot about it entirely, thinking it was being handled.  Nope.  Had my husband call them. They start out, “We didn’t get your form.”

“But it was scanned into the system last month.”
“There’s no record of that. You need to fill out the form and wait five to seven business days.”

So my smart husband waits through a ridiculous phone tree in order to call the lady who originally scanned it into the system (because we knew her name), and she verifies that it’s in there. He calls the Historical Records people back.

“Spoke to Maria and she sees our request in the system on this day.”
“Hold please.” (A looooooooooong time later, like over twenty minutes of total phone time.) “Okay we have it. But we can’t fax records this long.”
“Were you going to call us and let us know that?”
“We didn’t receive your records.”
“You obviously did.”

Oh no, nah ah. Tag. Mama Bear’s turn.

“Listen what is your normal processing time for a request for records?”
“Five to seven days.”
“So when something is sent to you on January 26th, and, say, it doesn’t take five to seven days, what happens then?”
“Um…”
“And even though it says NOWHERE on your website or on the form that records this big can’t get faxed, how or when do you let us know that?”
“Um… you’ll have to talk to Lisa.”
“Oh I didn’t realize I was speaking to someone who couldn’t help me.”
My foot: tap tap tap tap tap…
Lisa: “Well I can’t do anything until you fill out this whole other form anyway.”

!!!

She faxes form. I fill it out and fax it back. I hear nothing. I call back.

“I’m off work in an hour, I’ll come pick them up personally.”
“Oh no, you have to wait five to seven business days.”
“Oh, I already have. Now I want them in my hand.”
“Um, let me ask the lady who prints them out…”

(So if you didn’t catch that, the person I was speaking to before AND the person I’m speaking to now can’t help me.)

“Who? What’s her name?”
“The gal who does the printing? Oh she’s the (long title) person.” (Who apparently doesn’t own a name, poor child.)  “Oh and she says we can’t do a print job the same day of the request… so…”
“So…?”
“Um, we just can’t.”

Fine. So I got them the next day. Oh and that’s a fun story too. Had Lali with me, straight out of PT, and only when I showed up did I realize that the Historical Records people occupied one room in the surgery recovery building. We walked right past both of Laelia’s post-op rooms from previous overnight visits. Lali starts to squirm and cry in my arms saying, “No no no no…” I see the panic in her eyes and realize she associates this place with surgery.  I promise in a soothing voice over and over, “No surgery. Just a quick trip. No surgery, I promise.” We finally get to the door to pick up the records, and I have to request they be put in a big envelope or package and not just in a loose stack. Oh and are they heavy! Want a workout? Try juggling a two-year old, a diaper bag and a stack of arthrogryposis medical records!

After a semi-polite receptionist (who I swear rolled her eyes at me when I tried to explain why my daughter was upset), an hour in traffic and one quick breather later, I was flipping through the records and discovered 15 of my official records were blank pages, and about 20 other pages just had one or two lines on them–all of which I got charged 25 cents for! Grrrrr…

Long story short: We have achieved record-dom! (Yay!) …and only at the cost of my sanity and patience.

One sick baby puking up everything.

So her parents give her lots of love and care…

…and now we’re all sick.

Lali woke up from her Wednesday afternoon nap surrounded in puke. I put her in the bath where she puked three more times. By the time Charley got home she had puked 24 times. Around 11:00 PM I started feeling sick. By 2:00 AM I had puked 34 times. (Why I kept count I have no idea. I kept thinking a doctor would want to know this stuff.) The next afternoon Charley was puking… like twice. Punk. This thing hit fast and hard. We couldn’t even keep down water so we all lost weight. (Which was only a good thing for one of us: Mama!)

As of Friday night Lali is doing much better. She kept down two bites of banana, half a piece of toast and a bit of yogurt. Charley is eating again (his stomach stuff didn’t last as long, he even ate some nachos), and I am doing much better, but I’m still really nauseated and can’t really eat or stand up for very long.

This has not been fun. Wednesday night after Lali went to bed before I was even feeling the slightest bit sick I started a blog on how Charley and I were feeling this weird sense of normalcy at dealing with a sickness that you can easily Google and get parental advice on. There’s not a lot of parents who can instantly come up with comforting tips for post-surgery recovery, but lots of my friends and family had great stomach flu advice. And it worked really well!

So we were thinking about how normal it all felt. And how it was almost comforting to feel like we were dealing with “normal” parenting stuff. Then karma decided that we weren’t empathetic enough apparently! :-/

And if I may vent a little: STUPID ARTHROGRYPOSIS!!! Because of Lali’s arthrogryposis and the fact that she was really too sick to do stretches the last few days, she can no longer reach her mouth when eating things! She’s really stiff! It’s really not fair! She was on her back and I handed her a cracker and as best she could she couldn’t get it in her mouth without me hovering over her and pushing her arm down. (Because of the contractures in her elbows.) Stupid joint contractures!!! Hate them hate them hate them! So way to go AMC, for making this one “normal” experience instantly “special.” Boo!

But all in all we’re all doing much better. No more grabbing our stomachs and wanting to die. And Charley’s comments on my messy hair are becoming more bearable. (I had some puke in my hair for over 24 hours and didn’t notice.)

Oh and Lali learned to play Mario Brothers on the DS during this whole thing. It’s really cute. And she can say, “Baby sick,” which is heart-breaking.

We are so lucky/blessed/ecstatic that Lali is such a good little girl. She didn’t scream through this whole sickness even though it was miserable for her. She was very patient with two sick parents caring for her. She only fussed when absolutely necessary, and only cried before puking. If she had screamed or thrown fits this whole time, it just would have been so much worse. She really is the greatest little thing. Thank you, Lord God, for my great baby girl!

I’m so sick of the stupid cast emergencies! Blarg!!!!

So apparently when I took the picture of Laelia’s left foot with the pin in it last post, it showed that the pin was sticking up. But Laelia had just pulled a bunch of gauze out of that side and I thought that’s why it was looking more pronounced.

Yesterday when Chelsea showed up to watch Lali, she noticed it too and showed Charley. So then Charley called me up at work, but I was in a meeting. By the time I got to my messages there was an ever increasing panic in each one:

“Hey honey, Laelia’s pin is sticking up a little and she cries when I touch it. I’ll keep you posted.”
“Hey honey, Laelia’s pin really doesn’t look good and the top is running parallel with her toes instead of up and down. That’s not good… call me!”
“Hey honey, the hospital isn’t returning my phone calls so I’m going to the hospital.”

So yesterday Laelia was back at Children’s Hospital having a doctor screw her pin back down into her foot, into her bone. He pushed it down and rotated it the correct way. I got ahold of Charley during the procedure and heard the screaming. It was only ten seconds of pain, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, but it seemed longer, and I couldn’t hold her.

Charley missed most of an important work meeting after spending the morning at Children’s Hospital. He got home late from work and arrived just as Laelia was being put to bed. We talked for hours about our life after that. It’s not been easy.

Laelia was such a good girl yesterday despite it all. We met with Early Start and Regional Center who did her two year report. We updated her IFSP (Individualized Family Service Plan). She’s doing well and excelling even though her gross motor age is six months. They grade her by age. Her fine motor is now 12-15 months because she turns pages of a book and picks up small things like Cheerios. Her social-emotional skills and cognitive abilities are 18-24 months (normal!). She’s definitely smart! Her language skills are getting better too! She’s now at 16-21 months with receptive and expressive language. Last time she was six months behind, now it’s more like 4-5 months behind if you look at the numbers liberally (that she’s closer to the 21 months than the 16 months). I really think going to school is helping. I just hope all these medical emergencies stop interfering with school!

Her goals for the next year will be to sit up by herself (which unfortunately was a goal from last year; we’re so close!), feed herself with a fork and spoon, and, if she is able, standing may happen this next year. If she doesn’t have the hardware (muscle, etc) then we’ll instead work on her moving under her own power with a vehicle of some sort. Like her car!

But of course she’s having trouble driving her car because of the casts. I hate casts.

It’s official. We’re losing our respite services because of “severe and painful” (according to a letter we received) budget cuts in California. So far from what we know (and all information is terribly communicated) we still qualify to send Laelia to school. So that’s good. We have a pretty good network of friends now so this is not heartbreaking news, however there are many families with disabled kids who no longer have this support. Not that we won’t miss it terribly, but I’m not worried about us. California has made some bad financial decisions and needs to fix the problems somehow. We were thankful for the time we got respite services; it meant so much to us.

Today I got home and walked into a clean house. My living room was picked up, all my stuff was organized and stacked, my kitchen was clean and Laelia was bathed from the waste up! Chelsea is my favorite friend/godmother/respite person ever!

If it weren’t for a letter Chelsea had received letting her know when Laelia’s respite services were over, we would never have known! Even though the Regional Center sent over a letter via courier service that I had to sign for, it was still unclear. We read it through and couldn’t figure out if the cuts applied to us! And we aren’t dummies! They really needed to make that more clear.

Frustrating.

Laelia did better at skipping breakfast and lunch than I thought she would. She just kept looking at us like we forgot something. Then when we packed up her stuff to leave, she really was barking at us. We were pretty good at distracting her during the two hour wait before surgery. We had to meet with the anaesthesiologist, surgeon’s fellow and head nurse. Then we changed her into her hospital gown and I tried to control my tears.

They asked who would carry her to surgery and Charley responded, “Her mother,” faster than I could say, “I think I’m going to throw up.” I went to the restroom and did just that. After that I got on a mask, hair covering and gown of my own. Then I carried my confused little baby into the surgery room. I set her on the table and tried to calm her as they put the gas mask to her face. I wasn’t doing well so they kicked me out while she was still crying and struggling against the mask. It wasn’t the way I wanted to leave things, but I was about to pass out.

The waiting began. Then everyone was distracting  me, although I demanded more than peek-a-boo and stuffed animals. We waited for a billion years which actually turned out to be a little less than three hours. Then the surgeon came to tell us how it went. He said it went well and he only had to use one pin. He also decided to only work on three toes once he was in there. We’ll see how that will turn out. Then he said that she should wake up in about 45 minutes and one parent could see her at that time.

Then we went back and waited again. This time I was going crazy. I had written on EVERY form I filled out that day that I wanted to be there the second she woke up (or even as she woke up), and was terrified that she would wake up and be alone and terrified.

Then almost an hour later they called on the loud speaker for one parent of Laelia Wesley to go to recovery. So I left and went to recovery. AND NO ONE WAS THERE!!! I said, “Hello?!” in the worst, shaking voice, and NO ONE answered. Then I ran around the hall looking for another room marked recovery. Then I stopped two medical-type-looking menfolk walking down a hall and started panicking as I said, “My daughter! Where is she??! She was in surgery and now she’s not and.. WHERE IS MY DAUGHTER?!!” They directed me down a hall which turned out to be WRONG! Then I found another medical-type women (who I yelled at), and she directed me down a hall that ended at a door marked “hospital staff only” with no way to open it without a pass. And at this same exact moment I heard some little ones crying on the other side, and recognized one of those voices as my daughter. (I turned out to be right, but couldn’t know it for sure at the time.) So I began to pound on the door like a crazy woman. And I mean POUND. I tried to tear the door apart with my bear hands as my dad and sister (who finally came out to help me) backed away with a scared sort of look. Then someone came out and directed me back to the original room (now occupied with people), and showed me down a hall I didn’t see before to a window I was suppose to divine was where I waited for someone to notice me. Then I was told in a harsh tone, “Stay here,” as that women disappeared down another door for hospital staff only. I think my Christian response was something to the effect of,  ”Like hell I’m staying here.”  So I followed her and pushed my way in. Then finally a nurse asked who I was here for (and said it like I was about to kidnap everyone in the room) and I said, “Laelia,” and they took me to my baby. Once I saw her I started balling. I got control of myself before I approached the bedside of my pitiful-looking child. When the harsh-toned nurse asked if I was “okay” in a tone that spoke volumes, I went off on a diatribe, “No, your incompetent, idiotic staff…” in a cooing tone while looking at my child and brushing her hair with my hand. I pretty much told the nurse off while hushing my child. I had Laelia in my arms within moments (which was hard with the wires and leg cast) and she immediately calmed down. Then the nurse said I needed to put her back on the bed so they could wheel her to long-term recovery, to which I simply replied, “No.” So the nurse then went to another nurse and switched out. (See, I’m scary!) The new, slightly intimidated nurse asked if I would like to be wheeled into the other room in a wheelchair while I held my daughter. That’s better. I made sure to be incredibly sweet and nice to this new nurse. “I like you,” I responded, trying not to smile because I would show too many teeth and scare her away too.

I guess Charley had the same experience as me when they finally called for other family. He came out and announced himself to the first person he saw with a clipboard, and was given a dirty look as that person took off. Then he just planted until we found him. Stupid system. Retarded!

The thing I had worried about was that Laelia would freak out when waking up without her mom. Well, sad to say, I was right. Her heart rate climbed so high that she worried the staff. When I came in and she saw me, her heart rate immediately went down. When I went to the other side of the bed to pick her up, there was a moment when I was out of view and all her monitors started beeping loudly as her heart rate jumped up to 190! (100-120 is normal.) Then when she saw me again and I lifted her into my arms, her heart rate dropped down to normal. Now imagine being asked to put her back in the bed after that! But I was a good girl and didn’t kill the nurse.

Once in the long-term recovery room I noticed just how out-of-it my baby looked. But she was alive. And surgery was over. And she was in my arms.

She had a rocky start after that. Her oxygen was too low (making everything beep and a doctor run in), then her pulse was too high. Well, REALLY too high. It jumped up every single time I stopped physically touching her. At one point I put her in the bed and noticed both my legs and the arm she had been resting on were all asleep. So I had to put her in the hospital crib, but I leaned my whole self over her with my other arm under her and rubbed her tummy and chest with my free, rather numb hand. (It was a weird sensation to remove my hand from my daughter’s chest and at that same moment have two monitors punish me by beeping loudly! Her whole system was only going to behave if I was loving on her.) The thing that shocked me was how much pain she was in. She was so confused and scared. It was hard to see. I’ve never seen her like this. Her oxygen was making me dizzy and my back was killing me, but I didn’t realize it at the time. Only when Charley came back from his trip to the apartment and took over did I realize I had been standing and hunched over in that position for five hours.

After that I threw up again and had other bad side effects from worrying. I’m realizing more and more than I’m a weakling when it comes to this stuff.

She said her first words around 8:45 PM. She looked at me clearly (she had been pretty hazy up until this point) and said something like, “Ga boo ma ba?” Then her eyes hazed over again and she was crying. Then around 9:15 she allowed me to put her sippy cup in her mouth and she took a sip. Her throat burned (they put a tube down it that they didn’t tell us about) so she didn’t like that. Then they brought us some apple sauce and said she needed to get something down or they couldn’t release her the next day. So it was stressful when she couldn’t get anything (food or drink) down until eleven hours later!

The next day we got books from her room and some other foods from home and she did much better. She was able to get down the apple sauce from the night before and also some crackers. That’s all we needed to be able to give her the oral medication… that she spit out. *Sigh* But then we tempted her with two hours of Elmo (kill me), and she did even better with the medicine. Elmo got grating by the end, but since she doesn’t watch tv at home, it was a special treat that kept her attention. Well, that, and reading her favorite book a literal 16 times in a row. Charley and I switched off for that one.

Then we got to take out her IV and go home! She cried a bit in the car, but fell asleep. For some reason she didn’t like right turns. But we were so thrilled to get to take her home! When we got home we fed her more, more oral medication too, and had group nap time. It was great!Mommy, daddy, auntie Em, Grandma, Grandpa and baby all took a nap. We were tired! She was back in her own crib and was looking less pasty. Her lips were pink again and she had real clothes on! It was a sight for sore eyes.

We fought off a bit of a fever after coming home, but it left as soon as it started. She ate her dinner fine. She has sat on the couch with her leg elevated while everyone takes turns distracting her since then. For the next surgery when the grandparents are gone, I may elicit help with this. It takes a lot to distract a post-surgery baby.

But she’s doing so much better now that she’s home! She’s doing so well. So so well! She laughed! And she can focus her eyes! And she can eat! And she hasn’t thrown up once! And she’s swaying to some music right now. And she’s holding her stuffed kitty. And she’s telling us what sounds different animals make. She does cry when we move her or lift her, and she is fussier than usual, but I’m so happy with how she’s doing. I really thought after our rocky start that she would not be doing well. I was thinking the worst. I’ve been feeling her heart and it’s normal. She got a bit more out of her lungs too. She’s kinda raspy and the nurses and assistants asked me if she had a cold before surgery… um, no, I’m not that stupid. But then the doctor informed them and us that this was normal for post-op. We cheer when she can cough it out. We cheer when she eats. We cheer when she says anything. She’s pretty spoiled. And that’s how it should be.

I honestly have no earthly idea how we are going to do all this again in two weeks. But that’s still the plan. And her left foot is worst off so it may take longer. I’ll be glad when it’s all over with. But at least this next time I’ll know exactly where to go for recovery. And Charley will be the one to carry her into surgery. And we’ll know what stuff to bring. And maybe we can borrow a computer so we can give better, more timely updates. Lots of things to plan.

Dear Potential Visitors of Laelia,

Okay so we found out today via phone that Children’s Hospital is not allowing visitors (besides Charley and me) in the waiting room due to, get this: Swine Flu!!! Of all the BS! So now my family can’t comfort and distract me??! It’s so stupid! Also I can’t see my baby until after she wakes up! So they’re letting the tiny baby who’s not yet two-years old wake up in a strange room without her Mommy?! STUPID!!!  

This whole thing makes me sick. I’m going to try to be nice to the nurses tomorrow while at the same time trying to weasel out of all their stupid rules.

So I guess Laelia will be on the 3rd floor of the orthopedic building like I said before, but that’s just to check in. Then she’ll be in a different place (they’ll tell us where when we get there) for surgery, then a different other place for recovery, then a different different other place for long-term recovery. Sooooo… yeah. I’m guessing she’ll be all done around 6:00PM and we may get moved to long-term recovery after that, and then maybe visitors can come then?

I’ll try to keep people updated as best I can tomorrow without having any technology on me besides a phone.

None of her bones are where they should be. Her heals are empty of bones and her ankles are way up into her legs. All of her toes are curled by the pressure. Something has to happen and fast.

*Laelia would just like to mention that she hates x-rays.

Laelia’s AFO shoes have helped considerably, but the problem is worse than we thought. It turns out her hips are greatly affected too. That’s why she sits with her legs so wide apart and can’t seem to straighten out. She’ll never stand or straighten out her body without intervention. Stretches are no longer gaining ground, at least not in the lower half of her body. 

*Laelia would like to mention that getting into Mommy’s purse has been fun but not completely errased the x-ray memories.

Day one.

I know I haven’t written anything in a while. I think that’s because I didn’t *need* to write anything. This blog is usually a form of therapy as often as it is a way to update the grandparents on what Laelia’s doing. And she has been doing great! She likes to mock me recently. If I hiccup, you’ll hear her little chorus of pseudo hiccups echoing shortly after. She loves to kiss things–her teddy bears, pictures of people in books, keys on her play piano–pretty much anything she’s thrilled with at the time.

She’s also whip smart. She knows the tune to the entire Twinkle Twinkle Little Star song and will sing it three times in a row the whole way through. (She sings “bah bah bah” instead of the words.) She knows if Mommy sits down at the computer that she won’t be getting attention for a few minutes and will automatically find that she is in some peril at that very moment! (Daddy kissing Mommy usually triggers the same response.) :) She also knows to throw her head in the direction of the cookies and say, “Ah” in a loud voice during meals. (This little trick has gotten her some cookies for breakfast from Daddy while Mommy’s at work.) Speaking of cookies, it’s amazing what the all-powerful cookie can do. Lali has an “I’m too disabled” look, or at least that’s what we’ve called the look she gives us when she doesn’t want to move. Kids know how to work with the excuses we give them, and too many people are too forgiving of her tantrums because of her disabilities. So when she doesn’t want to do something she’ll fling her legs uselessly and look pathetic.So when Lali gives us that look and won’t roll across the carpet to come to me, it’s funny how two seconds later she magically figures out how to maneuver around furniture to do the same task when there’s a cookie involved.

Her language skills haven’t improved as quickly as we would like. She mostly says “ga” for things. But her reception skills are tip top. For example, she can’t say “chin” yet, but if I ask her where my chin is she’ll reach for it. She actually recognizes everything on my face, but the only thing she can name with any consistency is “eye.” (Sometimes I’ll be lying down with her on the bed and hear her exclaim, “EYE!” a splint second before mine is assaulted with dirty fingers.) :) 

Our house has turned into a baby-talk center. Everything has a name and is repeated several times while she plays with it. Then we use that word in several sentences. Then we ask if she can say it, and any attempt is praised and praised. I sound like an idiot half the time I’m on the phone, because I have to take breaks from my conversations to repeat a vocab word Lali has discovered. And Laelia LOVES the attention that vocabulary games present. She knows how to say something very close to, “What’s that?”  Then she loves to be rewarded with learning whatever word she wants. Of course without her being able to point well or lift her arms, sometimes I just guess what she wants or I’ll start naming everything in the general area.  Oh, well, Laelia, that’s the fireplace, chair, changing table, teddy bear!  I had my hopes up that school would increase her vocabulary. She was scheduled to start on September 10th. But that plan looks to be derailed.

We found that Laelia’s first major, scary surgery is being scheduled for September 16th. Not only that, but her second major, scary surgery is scheduled for only two weeks later: October 1st! The first surgery is for her right side and the second is for her left. They are going to fix her hips, feet and ankles and all ten toes. Oh and some tendon releases. She will be in a full-body cast for 3-4 months afterwards. More casts. I hate casts. So much.

I knew this was coming, but I put it out of my head. There was this big surgery looming over our family like a black cloud, but I always told myself it wouldn’t happen for a few years and I could relax. Then to find out that the surgery is around the corner, and it’s not one major surgery, but two! And it’s not just for her feet like we first thought, but also her hips! It was like a sucker punch to my gut. But the way Lali’s body is growing means we can’t put this off. I’ve been in a state of shock and tears. My brain keeps screaming, “But she’s so little! She’s just a baby! She didn’t do anything wrong!“ 

I find myself worried and stressed to say the least. I have this sense of dread when I think about her going under the knife… twice! She’ll have to stay in the hospital overnight both surgeries. That means that without complications it’s at least four days in a hospital. And she’ll have some pretty ugly permanent scars on her hips, feet and long ones up both thighs.

And complications can range from minor to major. My biggest concern is the anaesthesia. Arthrogryposis kids have problems withthe anaesthetic. I have these visions that she will go in for surgery and never wake up! In fact, I’ve been mentally preparing myself for her death. It’s morbid and unhelpful, but after losing my mom and grandma and others, I’ve learned that death is very… easy. We don’t think about it, because if we did we’d go crazy, but it happens all the time. I don’t like her surgeon either. He doesn’t care about us emotionally so how can I trust him with her physically? On this site somewhere I have a whole blog that is one big angry rant against this man for being an insensitive bully, and now he’s going to be cutting into my baby! It makes me want to scream!

So, gosh, I don’t know. I don’t know so much about this surgery. They tell you the basics and then you come up with questions and talk to the assistant. I don’t know if she’ll be able to sit in a carseat after this or anything. I have so many questions and can’t think of any of them right now because I’m so scared.

So that’s what’s going on. I can’t hold her enough right now. I know I need to think positively. I’m trying. But I can’t hold her enough.

I just fed her a cookies for lunch.

I want to revisit my experience with the hairdresser for a moment. (You know the hairdresser, right? The one who cut my hair all cute and then my husband never noticed! Oh but that’s another story.)

Now I didn’t post this immediately because I wanted to collect my thoughts first. And, truthfully, I somewhat forgot about it. (If that gives you an idea about how common this is for me.) But this always makes me so mad when I think about it.

So the one other thing the hairdresser asked me about was if I had known about Laelia’s arthrogryposis before she was born so that I could have had an abortion.

*deep breath*

Okay first of all, ewww! How inappropriate is that question? I expect my close friends and family to sensitively broach that subject if they needed to know, but a stranger?

Now don’t be fooled into thinking that my extremely sensitive hairdresser (sarcasm here), has been the only person to ask me that. You’d be surprised how many random people have asked me that question! A few of them just asked if I knew about her condition “ahead of time,” and then later it was clear that they were curious why (or in one case self-righteously angry that) I did not abort.

Secondly, I had no idea Laelia had arthrogryposis in utero.  Thank God!  Even after several ultrasounds (failed attempts to determine gender), the doctor didn’t even catch her severely clubbed feet that were clearly visible! But as much as I bemoaned the doctor for not catching this early so we could be prepared and have therapy already set up for our baby girl (which was desperately needed and received too late), I am eternally thankful that I didn’t know! Why? Because I would have to give an account for the rest of my life to every Tom, Dick and Mary about why I chose to keep my baby! And then be made to feel like a second-class citizen for introducing a blight on society!

Wow. I didn’t know I would need rules for this like I did with faith healers, but maybe I do. (Click on the word “rules” above to see our rules for faith healers. Click on the word “faith healers” above to see why we needed those rules.) And I’m making these rules universal (applying to interactions with all parents everywhere). 

Rule #1. It is NEVER okay to ask a parent if they considered abortion unless you are extremely close to them. And even then you’d better be $#%&ing sensitive about it! (And if you don’t need to know, DON’T ASK!)

Rule #2. It is NEVER okay to ask if they knew about their child’s condition in utero if the reason you’re asking is to figure out if abortion was an option or not. NO PARENT should ever have to feel guilty for keeping their precious baby!!!

I don’t care if you call women fat, or beat puppies or “dis yo mama” (or whatever), and I’m not the niceness police, but I do care if ever for one second a parent is made to feel guilty (or any more guilty than they already feel) for making a choice to let their child be born! This is NOT the same as parents having a ton of kids that go straight into the system or parents who are willfully bringing children into horrible situations, but you wouldn’t go ask those nutjobs why they didn’t abort so why are you asking me?

I don’t care what you believe about abortion either! It doesn’t matter to me what you decide on the issue. And I’m not even going to share what my own beliefs are. Because it shouldn’t matter! Because your beliefs do not give you the right to hurt a parent like that!

Next time I hear the question, I’ll be sorely tempted to respond with, “What’s your mom’s phone number? I want to ask her a question…”

Seriously people!

Some mommies wear dresses… and then have to take them off to lay them on the bathroom floor so baby doesn’t have to come in contact with public restroom foot traffic when getting a diaper change because some really dumb restaurant decided they didn’t want to invest in a freakin’ changing table!!!

…

In other news, I change diapers sexy. 

So our favorite Early Start person, Dawn, came to visit on Wednesday and we talked about Laelia’s language development. And let me just start off by saying that Laelia is as smart as any other gorgeous baby genius out there, but we always wonder when she is going to decide she wants to say some words. She only has a few words with meaning: Ut oh (when she wants you to pick up something she dropped), Ah (when she wants you to put something in her mouth) and occasionally she’ll say Cat or Gaga (her designations for everything under the sun). 

Dawn informed us that Laelia will have some language delays (when pressed she gave a guess that Laelia will start saying 10-20 words around six months from now), and these delays are due to her arthrogryposis (with amyoplasia) making it impossible for her to fully explore her world. This is the concept of kinesthetic learning: that things must me experienced and touched in order for babies to learn about them. A baby needs to play with a ball and see a ball and manipulate the ball in her little hands in order to easily say the word “ball” and associate that with any real meaning.

But that doesn’t mean she isn’t right this moment banking mad vocabulary! Dawn asked her to grab her toes and she did it! Then Dawn asked her to hand me the dolly and she immediately worked towards getting it and shrugging in my direction (her way of handing something to me). She understood us! I was amazed at all she knew!

I am glad Dawn came and alleviated my fears. I was so worried that Laelia wasn’t getting enough language learning while I was at work. I work at a Deaf owned and operated publishing company that sells Deaf Culture and American Sign Language-related products.  I do a bit of interpreting for Deaf associates as well.

Okay so all of the above is a lead up to my story with the hairdresser I’ve entitled, “No Excuses!”

Ah hem.

So I got my hair cut the other day (which my husband failed to notice, but that’s another story), and went to one of those cheapy places because of our new ridiculous budget. The gal doing my hair started the traditional questions about my life including how many kids I have. I mentioned Laelia’s name and age as usual. She asked if Laelia could speak much yet, and I mentioned that she wasn’t talking much and it was hard on her sometimes because she would get frustrated when we couldn’t understand what she wanted. (A normal parental complaint, or so I assumed.)

Then the lecture began.

Apparently I have NO EXCUSE for not communicating with my child because there is Baby Sign Language out there, and ANY baby can communicate all of their needs through signs. I mumbled something noncommittal and tried to change the subject. Nope. Sign Language was the answer to my dilemma and not teaching this to my baby fell somewhere between ignorance and child abuse.

(As an aside: I very much tried to teach Laelia a few signs. We even adapted them for her. So for example the sign for “food” was done at her tummy because without biceps she can’t reach her mouth to perform the sign correctly. But her arms are not going to be what she relies on in life. And a language involving body parts she doesn’t have, no matter how badly I wanted her to learn Sign Language like her mommy, will not work.)

So I broke my long-standing rule of not mentioning her disability to people who I have brief encounters with. I talked about her disability, the joint contractures and the loss of muscle, and how that effected her arms and legs. So actually Baby Sign Language won’t work for us. There. I had an excuse.

“Have you tried taking her to the doctor?”

What?!! That’s your response?! Haven’t I tried maybe taking her to the doctor to get this little problem fixed already? My “excuse” for not learning Baby Sign Language was not good enough yet. Accc!

So in conclusion, we took Lali to the doctor and got her arthorgryposis fixed, used an air pump to fill in those missing muscles and taught her Baby Sign Language and now she has no problems communicating. 

NO EXCUSES!!!

The memory of this conversation is still making me laugh.