Laelia Sky Wesley

I had this dream that Lali could move her arms. Not perfect, normal movement, but it was like her muscles woke up a little. She could lift her arms more and even bend her elbows actively like a lot of other kids with her condition are able to do. Then I woke up and realized that it had all been a dream. That led me into a total funk. Now more than ever I looked for some sign that she would be okay, and throughout the day it seemed she was moving even less–her arms hanging lifeless at her sides, her hands unable to make fists. The old doubts came into my head. Will she have friends? Will she find the love of her life? Will she be happy? Will she need someone to help her go to the bathroom? Feed herself? Get around? 

I still have days like this. It’s not everyday. It’s not most of the time. Unlike before, I now have developed a system to pull myself out of the overwhelming dark thoughts. It involves a little cognitive-behaviorism, a little Bible reciting and a ton of prayer. I’ve decided that it’s more important how I handle my feelings than it is to beat myself up for having them in the first place.

But boy what I wouldn’t give to not have them in the first place.

Charley and I are working on ways to take anything that comes our way–medical discoveries, test results, other people’s comments, visions of the future, bad dreams–and not let these things crumble us. We want to not be vunerable to an off-hand remark, but instead be strong and sure of our daughter’s value and purpose.

Oh God, please strengthen the hands that hang down! (Hebrews 12:12 NKJV) 

I have talked with four people… oh wait I almost forgot the obligatory Laelia pictures.

My two teeth!

I dropped my toy! :’(

No seriously Mom, don’t get up, sheesh.

I love Megan’s bed! Zzzzzzzzzzzz.

Better? Okay, where was I? Oh yes. I have talked with four people (all strangers) this last month while out and about who saw my daughter, guessed incorrectly at why she was wearing shoes with a bar and then said, “Oh my cousin/niece/son/friend had that bar and now he/she does gymnastics/baseball/soccer/dance.” Of course I’m not going to explain in a brief encounter that my daughter actually was born with little to no muscle and multiple joint contractures. I just say, “Oh wow that’s great,” and keep walking/shopping/eating. I guess lots of kids have DB bars on their feet for different reasons. Good to know. Usually I don’t go into Laelie’s disability unless people seem really interested. It’s not that I don’t want to talk about it, I do! It’s sometimes like the elephant in the room, and I want to talk about it (not all moms do, but I do), but it makes people SO uncomfortable to hear about arthrogryposis and amyoplasia. First I hear about how they’ve never heard of those conditions. *sigh* Yes, I realize they are rare. No, there is no cure. Yes, they do exist. No, it’s not like your niece/daughter/cousin/friend… bleh. Thankful I’ve recently met great people who have not turned our conversation into a tragedy. They seemed interested and were curious, but didn’t gasp audibly or change the subject quickly.

The best thing to do is to listen. Asking questions like, “How does that work?” or “How does she react to that?” Instead of, “What’s wrong with her?” or “Why does she look like that?” makes all the difference. It’s a subtle difference, but one way of talking separates the child from the disability. That’s what I want to hear.

Actually I have spoken to a couple other moms who feel lost in what to say when someone asks about their kid’s splints or whatnot. We want to be treated like normal, but it’s not normal. We don’t want people to say they’re sorry, but sometimes we want them to feel sorry. We want them to act like nothing is wrong, but not blow off the disability either. We don’t want to hear about some person they knew who had some little tiny thing wrong with them that required some dumb little surgery and now they are 100% better, but we want them to be able to talk to us about their kids. It’s a weird balance. And the question remains, Is it better to say something than nothing at all? Usually. It depends. If the only thing you can think to say is, “God planned for this to happen,” or “You should be happier, at least it’s not fill-in-the-blank,” then maybe it’s best to just stand there looking uncomfortable. Hehe. Okay no I’m joking.

I found a little something online about how to talk to parents of disabled kids. But once again I found a list of don’ts. Don’t ask the following:

Yes well you may say, “That’s obvious! I would never say that!” But let me tell you now, Laelia is only ten months old and I have been asked in very similar language every one of those questions, except for the “aren’t you glad your other child is normal” one. Instead I was tentatively asked, “Do you have.. any.. other children?”

So I searched some more online and found another website from another mom with a daughter with the same kind of arthrogryposis Laelia has. Actually I’m getting a good picture of what Laelia will look like in the future. And while I want to make a disclaimer and say I don’t agree with everything on this website, I found one link very helpful. It was called Be Smart! It is just an honest mom talking about how she wants her daughter to be treated, and–surprise! surprise!–it’s how any mom would want their kids treated. One thing was how it’s not good to talk about/ask about the child right in front of that child! These kids are smart and sensitive! Other stories were about living in the culture of the deep south and I find California much more enlightened comparatively. But I’m totally biased.

But my favorite site was Abby’s. Here is where I found the most complete information about what I was about to face when Laelie was first diagnosed. It was very helpful for me, although Laelie’s case seems to be a bit worse than Abby’s. But then again there are cases much worse than Laelia’s out there.

But back to our original topic of what to say to someone who finds themselves a parent of a disabled child. It seems there are dos and don’ts that change with the circumstances. At the very beginning of grieving, a lot of things can be taken the wrong way. When a mom is feeling a little better, they usually only see your love and kindness even if you say the “wrong” thing. 

Charley says that some of his friends just listened and that was most helpful. Also it’s easy to screw up giving advice, even good advice. Usually it was better to avoid advice-giving. Charley also liked hearing, “Well you’ll be a good father,” or “Well we know you’ll do everything you can for her.” That type of thing that implied, without evoking pity or a lot of wincing expressions, that he cared about his daughter. Asking about the child is always good. Even when you hear answers and you don’t know if that’s a good or bad thing, it’s okay to ask, “So how do you feel about that?” Like someone would ask how Laelie is doing and we would say, “She moved her arm for the first time.” And they wouldn’t know if we were celebrating or grieving! Sometimes it was both! It was bitter-sweet. Yes, she hasn’t been able to move her arm a lot, but oh my dear lord, she finally moved her arm!

Actually it was always okay for people to say to me, “I don’t know how to ask this, but is okay to ask you about this?” As long as an effort was made to show sensitivity it was okay. But be careful because rarely is a parent going to say, “No, you can’t ask me!” Just follow their subtle cues. Like if they respond to your question with some round-about answer then stop asking. They are probably trying to avoid the question.

It is always appreciated to look into a child’s eyes and compliment the first thing you love about them. Of course I did hear a woman at Children’s Hospital once going on and on about how she didn’t think a child was good-looking so she just said, “Oh look at you!” If you have to say that, don’t announce later the reason for it. Sheesh.

What helped me the most were the people who told me they were thinking and praying for me and my baby. They weren’t afraid to hold her. They weren’t afraid to be by my side as I grieved. Who avoided giving advice and only asked hard questions after Google failed to answer them first. I loved to hear hopeful, positive things like, “She will do so many great things!” And I heard those things until I believed them. 

She will do so many great things.

Her life has so much purpose! 

She will touch so many hearts! 

She will bring so much joy!

And she did.

Click on this picture for the video!

My little darling is in love with every bear. It’s adorable! She also loves her duckie. We do have to help her cuddle them, but this child loves her stuffies! I have to remind Puppy to stop stealing them from her. *rolls eyes* It’s becoming a problem. I set the baby up with a stuffy and then go to the kitchen and by the time I get back Puppy has the stuffy in her mouth across the room while baby is just staring at her totally bewildered. I wish I could catch it on video. (Puppy is our tabby cat by the way. :))

We had a hard weekend, but we’re all doing better. This week we’re going to be doing some long term plans and budgets and talks about daycare and adoption and the future and stuff. All of that. We also have to discuss when we want to do that test that will determine if I can have more kids. Well I can have more kids, but this will let us know if I have good odds to have kids who are healthy and physically whole. We have to figure out if we want it done earlier (so we know earlier and can make some long term plans now), or much later with her surgery which will be easier on her. The later is what we’re leaning towards, but we had no idea how upset we would be at the prospect of not having more kids. So now I just want to know for sure so I can start working through that information. And of course we still have to meet with our geneticist on this issue as well. We already picked him out (he was the one who diagnosed our daughter). Also at the end of this week we will hopefully have Laelia’s new shoes. They are going to be pink! I can’t wait. No more sore little feet! Okay, that’s all the updating I have for now. Here’s more bear photos … just in case I haven’t crashed Phyllis’ computer yet.

She spins and she sways
To whatever song plays
Without a care in the world
And I’m sitting here wearing
The weight of the world on my shoulders
(Lyrics from “Cinderella” by Steven Curtis Chapman)

Yesterday (Wednesday) was our all-day at Children’s Hospital where, due to a scheduling glitch, we ended up being there a few minutes shy of.. forever! The receptionist told me when we were rescheduling this last week that I was the only parent to not get upset at her that day. So I guess after hearing that, I did my best not to make her life more miserable and ended up getting stuck in a miserable schedule. It was a hard day.

Laelie is fine. She got her blood pressure taken while she was asleep (thanks guys :-/), but no poking, prodding, or testing this time. All that happened was that she got a splint adjustment, saw her surgeon who moved her feet around (which didn’t phase her) and she got seen by some weird-looking (aka NOT mommy) people. Pretty uneventful for her really. It was just hard on me.

I guess the only reason they wanted us back at the clinic (and also the reason we never received our test results from the EMG) was because the doctor wanted to give me the results in person. She started out telling me about the guy who did the EMG test and how good he was and what great hands we were in. I started to get a little worried at this point. Then she continued that it looked like Laelia had less muscle than we thought. She may also have some pretty severe nerve damage that we didn’t expect. And…

Gosh this is still hard to talk about and it’s been over 24 hours. Let me try to start over.

We ended up being the first ones in the building for her first appointment of the day and the last ones to leave the clinic. It was a long day. At one point I was put in a room where Laelie’s chart was left. It wasn’t in the door like it was suppose to be. So, being the snoopy person that I am, I riffled through it. :) I never would have gone through a chart I know I’m not suppose to go through even though it’s *suppose* to be open for my viewing (after I sign a form of course). But I was not told my daughter was born with her hips out of her sockets or that her clubfoot situation was worse than normal or a few other things in the past that would have made me upset but changed how I cared for my daughter, so I wanted to know what else I was not being told. Turns out they had a different word other than Amyoplasia in there under her diagnosis so I grabbed a pen out of my purse and crossed out the word they had and wrote the right word down. (Right on the chart! Yes, I am so bad. :)) Then I started to flip through the doctors notes, unceremoniously tossing paperclips as they got in my way. It was weird now they talked about my baby girl. It was a list of big, bad mysterious things wrong with her followed by these snippets of “…and she’s an engaging, adorable girl.” Or something like that. Weird. Anyway, so I moved right along to the EMG test tab of the chart. It was discouraging. I couldn’t read or understand any of the medical jargon but I kept reading, “ABNORMAL” and “SEVERE LACK OF” on all the test results. (That’s not good.) Then I hear voices in the hall. “Where is the chart for the Wesley baby? (All the other kids have first names but clinic folk tend to revert to “Wesley baby” when they happen upon Laelia’s first name.) It should be on room seven’s door. Check the file, we don’t want to lose it!”  Moments later a med student with curly brown hair peeked in to “check on us” and, spotting the closed chart on the opposite side of the room (twiddles thumbs), snatched it up and fled. It wasn’t long before Dr. S came in with the same med student to talk to us. They both had purses in hand as we were the last patients of the day.  

One thing I love about Dr. S is that she always calls Laelie “my LOVE! My adorable love!” It means that Dr. S cannot pronounce Laelia’s name, but it totally charms me every time. Anyway, we talked about Laelia’s very low blood pressure and how that’s related to muscles not working to stimulate blood flow. It also explains why her hands and feet turn purple when her splints and braces are on a little tight. That’s why it’s important we watch for that and CHANGE HER AWFUL SHOES!!! I mentioned that my aunt Linda and uncle Bud gave us some money to buy her new orthopedic shoes and that they should be ready in two weeks. The doctor looked satisfied with that. Then we discussed what we came for: Laelia’s EMG results.

After Laelie’s EMG, they told us they would recommend a muscle biopsy to Laelia’s neurologist. So when Dr. S brought it up I was ready for it. But since it’s a hard test (it’s painful and will leave a permanent scar), they want to schedule it with her surgery on her feet so she will be unconscious. Since her surgery gets put off every two months, there’s no date set, but we figure around her 18th month. This test *might* give them a better idea of what is wrong with the muscle/nerves in her body. Dr. S told me that there is a 2/3 chance that we may get a diagnosis from this test. She already has a diagnosis of arthrogryposis with amyoplasia, but this would be some other diagnosis to maybe explain what caused her AMC in the first place. A 2/3 chance of finding something leaves a 1/3 chance that we will be in the category of “something is wrong but we have no idea what.” If we can’t find out what is wrong then we can’t continue in the muscle clinic. We won’t know what caused this and we’ll have no answers. But if we can find out (2/3 chance) then we will have a shiny, new diagnosis.

Clear as mud? Good.

If she is what the doctor suspects and falls into that 2/3 category, it means… that I.. will have a 25% chance of having another severely physically disabled child on my next pregnancy.

“That’s 25% or 1 in 4. Do you understand what I’m telling you?” the doctor asked. I responded that I wouldn’t be having any more children with those odds and the doctor looked visibly relieved.

I mean think about it. If someone gave you a four-sided die and said if you rolled a “2″ your next child won’t be able to move her arms or legs, would you even roll? Those percentages are too high! That’s a human life!

That was really hard for me to hear. I had just been talking about having another baby and how weird it would be to have a wiggly newborn. Plus it’s not fair. Charley and I make such adorable babies! :’-)

I have been so upset about this. I even started researching and signing up for more information at adoption websites. I don’t know if this is an option for us, but for the first time in my life I can envision meeting my baby at the airport and welcoming him or her into my family. I have been looking for kids with AMC because, well, I know AMC pretty well by now and I would have none of the guilt feelings associated with giving my baby AMC, but just good feelings associated with caring for a baby with AMC. If that makes sense.

I don’t make much sense lately. Because I think the more I fell in love with a new child, the more I would worry and be sad about what they wouldn’t be able to do… and the more ignorant people I would have to put up with. And if I think that I’m in paperwork hell now… well.

I actually went to work today. I think it might have been a bad idea. Okay I’m also sick so it was definitely a bad idea. I just had customers waiting for phone calls so I went. At one point I was overwhelmed and I started tearing up at work and a coworker noticed and said, “There’s no crying in baseball!” Which for some reason made me feel better. I wised up and am taking tomorrow off to recover emotionally (and physically, kinda sick-ugh). Then I can spend the day with Linda since Friday is her last day with us before moving to Bakersfield.

I think Laelia will really miss Linda most of all. Laelia has a terrible time eating Cheerios and our OT said it might be because she has never handled them so Linda had this ingenious idea of putting Cheerios in a bowl and letting her play with them.  So adorable!

Speaking of amazing things my daughter can do, I just put Laelie down for a nap and when I turned on the monitor downstairs I heard the weirdest noises. I ran back up the stairs to see what was wrong, and saw my little love smacking the living daylights out of the monitor. Take THAT NAP! For a child with pretty dismal test results, she sure finds enough mobility to be ornery! I love it!

And she wiggles and sways to whatever song plays as the lyrics above suggest. She especially loves Dr. Horrible. Which of course has caused me to play it constantly. If you haven’t seen it, it’s a 40 minute long show about a super villain who is trying to get into the Evil League of Evil. One song is about a freezeray and another is about how Dr. Horrible can’t bring himself to talk to a pretty girl at the laundry mat… no wait that’s the same song. :) Pretty rockin’.

So even though it looks bleak, there is still hope. Doctors don’t know everything. Plus my hope is not tied up in test results. My hope is in God. It’s in nothing less. And test results are WAY less.  

She’s more machine now than baby.

So this amazing gadget has no mold because they don’t make elbow splints for babies. So Jill made it by making paper towels cutouts and then cutting the moldable plastic around them and then making hinges from scratch, etc. etc. It was very involved. Then you add tiny little hook pieces and forty rubber bands and you have a workable elbow splint! Ta da! We were given the prescription the last time we were at our orthopedic doctor’s office, but since the process is SO MIND-NUMBINGLY SLOW, our OT still has not received it so she decided to make what she *thought* he wanted. And, yes, that’s how the system works.

So we went to see our temporary OT today since Jill is on vacation (which I will allow… I guess… if I have to :)). She is the same OT as at the muscle clinic so I’ll see her when we go to clinic this Wednesday too. She marvelled at the splint made “from scratch” and wanted to take a picture. Then she did some adjustments to it that we’ll try out for two days and then go back to readjust. It’s fun watching Laelie stretch out her arm to get something and then watch the splint spring the arm back up so she can reach for something else. Here’s a video:

On the other hand (literally) we have our supination splint. This holds her arm so the thumb goes from pointing down to pointing more out to the side with her palm up. We were told to remember “begging for soup” because “soup”ination can’t happen until you can get your palm up by turning your arm out to hold the bowl of soup. So our supination splint allows that. And when she is using any muscle you can watch her fight the splint. Actually besides it being a little harsh on her (turning her hand purple), she is able to bat at toys without going around them to hook them. Now she can hit something directly. Apparently she is missing the muscles to turn her arms so she is constantly in, hey Linda what’s the opposite of supination?

Um, pronation.

in pronation. (Don’t I sound smart. :))

It’s actually triggered something in me emotionally (psychologically?) to see my daughter with her arm turned the right way. It makes me really happy. Speaking of feeling good, it’s weird that the closer we get her to looking like my idea of “normal” the better I feel. I was watching a video called ASL Literature Series: Bird of a Different Feather where a bird is born into a family of eagles. It shows how the eagle family reacts to this “aberration.” They put the bird in eagle school, they teach him to hunt and fly like them and they even do a surgery on his beak to make him look more like them. The more he represents the appearance of his eagle brothers, the happier his parents are. But he isn’t ever going to look like them. In fact, one day he meets other birds and learns to sing (which upsets his parents). They won’t accept the fact that their baby is different.

I really don’t want to be like that. I want my baby to enjoy a world I may never be fully apart of. I don’t want her tortured with multiple surgeries to make her look more like my version of ”normal.” And while I want her to be fully functioning, I don’t want her to feel like she is anything short of beautiful and accepted.

And that was the whole point of the story.  

Baby with the green nose.

Laelia had a fun time at church this morning. Most of it was spent in the nursery with her friends. Fellowship of San Diego had the Slooze people come and slime all the kids. Laelie got slimed by pastor Ron before we left. I guess the slime was made out of vanella pudding and apple sauce because it looked gross but smelled good. Laelie had fun licking it off.

Also in the world of Laelie news, we can sit up! She is sitting up now by herself! (I forgot to mention that in the previous blog.) I always thought she would sit up, but it was one of those things that wasn’t guaranteed. So she showed off that skill in the nursery. We are still working on getting her into a sitting up position, but that involves kicking some tummy muscles into gear. Actually those tummy muscles don’t want to do their job so her back keeps her upwards and that makes her lean forward a lot. Here’s a picture:

A funny thing happened this morning. I don’t know how appropriate this story is for all ages though. :) A couple in an ajacent apartment were having “relations” pretty loudly. The woman was making very interesting noises and it sounded like it was coming from our living room! All of our windows are open because of the heat and all these apartments are so close together so that’s why it was so loud. I didn’t know if I should say something, but my inner debate was settled when my 9 month old started mimicking that woman’s sounds!! It was the funniest thing ever! Laelie really picks up on noises like that. She matched the noise perfectly. I started to laugh and make different (expenentially louder) sounds, but it was a competition for volume. Finally I yelled out the window, “Thanks for the show!” to which I got a husky male reply of, “You’re welcome!”

Speaking of noises, Laelie can now make the “la la” sound by moving her tongue. Only instead of moving it up and down she moves it side to side. She has said her own name a few times that way on accident. It’s an easy name for her to pronounce. (So there!!! :)) Now if all the adults in her life could do it.

Well Dada and Auntie Linda are in Disneyland today making me once AGAIN the single parent. But I’ve been promised that tomorrow I get to take a few hours for myself with no baby responsibilities. I’m looking forward to it. But as always, 20 minutes in I’ll start to miss the little bug.

To explain the weird thing on Laelie’s arm in the picture above, we are trying out a wrap-around contraption to help with Laelie’s inverted shoulders. So far her arm looks great when she’s wearing it and then reverts back when it’s off. It also leaves candy-cane stripped red lines up her arm. We’ll see how long we put up with it. And this Tuesday she will have new elbow splints that will be awkward but hopefully let her see her hands more.

I actually saw a sleepy baby in the nursery today with nothing on his arms or legs and wondered for a moment why his mother didn’t put his splints and braces on. I had to catch myself before I said something. When Laelie gets sleepy it’s a mad dash to get all her gear on so her feet and wrists don’t go back while she sleeps. It’s weird to see babies barefoot and fancy free. It doesn’t seem natural, but hello that IS natural! It’s my life that’s outside the mold. I wonder if I’ll ever get used to that.

Let me just blow the dust off of this website. Ffffffff. There we go. My computer is good and dead right now leaving me typing on a borrowed laptop with no clue how to upload my pictures or videos directly on the page. I guess I’ll resort to links. I also haven’t been on this site for a while and I came back to almost one thousand pieces of spam attaching themselves to comments and Laelie’s guestbook. Time to roll up my sleeves and clean this out.

Hello from the land of Gagas! “Ga ga” being the only thing my daughter says all the time. The joke is that every time she says “Ga ga!!!” Charley and I look at each other and say, “She says she wants you.” She has been able to accidentally stumble upon a “b” or “d” sound to the instant attention of everyone around her which, in turn, excites her into more loud and energetic “ga ga”s. She did have a “t” sound once. She was watching me intently while I played a video game, Legend of Zelda (got to keep the kid cultured :)). I got a treasure chest in the game and as my character held it over his head I said, “Ta Da!” in my excitement and I got a small, tentative “ta da” in response from the peanut gallery. But the best one of all happened when Charley was in Portland. My husband has been on a business trip all week leaving me to single parent the days away. I sent him this video of his little girl saying her first word. He had tears in his voice when he called that night. When he finally got home yesterday night around 11:00pm, he watched her sleep for quite a while before going to bed.

I am just so thankful that my little one is starting to make noise! Many kids with her condition have lots of speech therapy because the muscles, nerves and tendons are affected in lots of ways we can’t see. Amyoplasia is a very insidious condition that way. But now I think that even if we do have some speech therapy, it won’t be as bad as we thought. In fact it looks like she will be able to speak with some degree of quality. Praise God! A lot of people could have guessed that she would have those skills based on the tongue acrobatics she can do. But it’s still good to hear those first sounds!

Another breakthrough has been with Laelie’s movement. She can now figure out the connection between flinging her body, shrugging her shoulders and arching her back to achieve some arm lift. She is missing biceps so she cannot lift her arm directly, but I have watched her fling her arm against the couch and then swing her body again to get it a little higher until it’s high enough to look at. Which is amazing! We had her use her new skills to get a small toy we placed up on her bird bath toy. We were bribing her with cookies and attention and told her if she got the toy we would take her to Disneyland. I don’t know how much she understood us, but she wanted that toy pretty bad. And she got it, but as is usually the case, she got it her own way. Here’s the link to the video of her achievement. (The best part is when she realizes it’s too hard to get it the “right” way.) Now we have to take her to Disneyland. A deal’s a deal. Thems the breaks. That’s the way the mop flops, the cookie crumbles and the world turns. And all that.

So much has been going on lately. We’ve had a lot of trials and a lot of things breaking. Our computer kicked the bucket again as you know. Charley and a friend built it from parts his last year of college so I don’t think it’s entirely internally all there. I can’t even turn it on. But the more interesting break this week was that of our decrepit bed… while we were in it… around midnight. Yeah. I’m starting to realize why we got it so cheap at that garage sale. So now we’ve been sleeping on the floor because it’s been too crazy the last few weeks to muster up the energy to get another one up here. But one bright spot in my breakage list comes from the kitchen. My $10, older-than-my-marriage set of pots and pans finally got thrown out after we realized that neither one of us was adding pepper to our food. It was instead bits of our pots’ and pans’ Teflon interior flaking off into the food while it was cooking. My aunt Charlotte and cousin Charilyn surprised us with a set of pots and pans when they came down to visit!

Speaking of surprises, last week we got an anonymous gift that will cover much of my flight to Shriner’s for a visit with Dr. James, a second opinion for Laelie’s feet, (whenever we can arrange that) and will also help with a $300 out of pocket expense for Laelie’s orthotics! (Long story.) I was so thrilled that I was stuttering! The week before we had another gift that will cover the other half of the flight expense. Thanks K and D! It seems that lately all of our needs have been met. Praise God!

We also had Laelie’s evil EMG test. The link I just threw in describes what an EMG test involves, although I’d like to change the description of “small needle” to “gigantic needle,” as far as it I can discern from Charley’s relaying of the experience and the giant needle marks on my baby. She got stuck four times: two in her calf, one in her thigh and one in her arm. I’m glad I didn’t go. It was a depressing visit. The tests were largely inconclusive, but the guess is that she has some sort of major nerve damage. What it did show was extremely poor muscle tone. Dr. Schwartz told me about it when I visited him because he had just received the report. We knew the muscle was bad, but we forget how special she is especially since she finds ways to wiggle around. They now suggest a muscle biopsy for our next step. The procedures just get more evil.

This was a dark time for our family. What we had suspected was now proved on a test. The muscles in her arms and legs are in extremely poor shape. I start to wonder once again how her life will be. I wasn’t okay for a while, but I’m better now.

As far as daycare, we have been denied by over 30 daycare centers and homes this last week. The week before I was denied by around 20 centers before I switched to calling homes. (I have three referral groups helping me now.) That was hard on me emotionally, but more so this week with Charley gone. We do have one lead in El Cajon, about an hour in rush hour traffic out of our way (round trip). I think our gas budget is a bit too shaky for this, but at least it’s something. We may also have another home daycare willing to give us a chance, and even though I’m not thrilled with this one, it may be a temporary solution since I should really get someone by the end of August. This will be a hard decision.

Two weeks ago before I realized that no daycare center will even consider taking Laelie, I explained her disability to one daycare who offered us a tour anyway. When I showed up they seemed excited to have us until they asked if she could feed herself yet. I reminded them of her disability and she was denied on the spot. I guess the person offering us the tour was not the same person who does admissions so there was a miscommunication. The lady started to say it was impossible to offer any services for my little girl, but after one look at my face (which was later described to me by my sister-in-law as “about to break down”) she changed gears and started to make some phone calls. I just now (two weeks later) finished following all the leads she gave me. Yes, they were dead ends (although I haven’t hired a professional advocate like she suggested), but it was so good for me to have other options to pursue. I was just so grateful because that could have been a terrible experience for me, but I left encouraged.

Instead what has been a terrible experience for me has been the drama of Laelie’s orthopedic shoes. Orthotics are expensive and precise. The shoes she has now hurt her. No matter what kind of mole skin or thick sock or lotion or powder or whatever we try she still has bruises and rashes from hard straps over her skin. If we don’t wear the shoes, the surgery will be worse on her. It’s a lose-lose situation. So on a referral from another mom that Early Start called for us, we got the name of a man who, using orthotics himself, makes children’s orthotics and gives special care and attention to his clients because of his experiences as a kid. We met with him and he explained why the shoes we have now hurt her and why our KFOs don’t work and he offered a game plan to correct this and different shoes that would be gentle yet firm. I was thrilled. I gave his staff all of Laelie’s insurance information and they said if there were any problems they would call me back within the hour. I then called our insurance to let them know a prescription was coming in the next weeks. I then set up an appointment with our orthopedic doctor to get the prescription and get it sent to this guy. Then I was told after waiting a few days that the doctor’s office won’t send out the prescriptions (or do anything because they’re all lazy) until the doctor finished all the notes from our appointment that could take two weeks. So I went to Laelie’s pediatrician and I got him to fill out a prescription for Laelie’s shoes (Dr. Schwartz is the best!) so we didn’t have to wait for these shoes to destroy my baby’s feet. Then I called our insurance back to see that they got the fax and they labeled the whole thing urgent since what she had now is damaging her feet.

Then I get a few phone calls and it turns out that this orthotics company is not covered under our HMO even though they took all of her insurance information and told me they would call before my appointment if they didn’t accept my insurance. But they didn’t. And insurance won’t cover it. And it will be a $300 deductible (which I don’t really know what that means). And Laelie is STILL in her hurty shoes and I’m so angry!

*pant pant*

So please send up a prayer or two that this works out. She needs to be in her shoes (AFOs with a Dennis Brown bar) for many more years to come so this is a really big deal. And I needed these new shoes for her last month!

I mentioned that we went to Laelie’s pediatrician but what I failed to mention was that it as a really good visit. We found out that our baby was in the 10th percentile of length and the 80th percentile of weight–not a great combination, but the arthrogryposis doesn’t exactly let us stretch her out all the way and the amoyplasia doesn’t exactly let her work off the weight. But besides finding out all the stuff that our baby “should” be doing at this age but isn’t, it was a good visit because she only had to get one shot and one blood test. Plus I love Dr. Schwartz and his staff!

Despite all our troubles, we have gotten a respite from our troubles in the form of, um, Respite. We qualify for respite care through the Regional Center provided by the YMCA. We have so many hours a month that we can use to go grocery shopping or go on a date BUT WE CAN UNDER NO CIRCUMSTANCES USE RESPITE WHILE I AM AT WORK. Thus my daycare dilemma. We had to use quite a few of those hours interviewing different respite workers because we had a little trouble finding someone who would do Laelie’s stretches, but we finally found one. It’s been so nice. Plus the baby gets a lot more attention this way. Last Saturday I came home from Ryan and Lauren’s wedding (GREAT WEDDING!) to my little girl with a big smile on her face. Her respite worker said that she taught her how to say, “Mama” while I was out. I was skeptical so I said, “Laelie say, ‘Mama’ for Mama.” And that little pudgy face said it! It happened only once and I haven’t for the life of me figured out how to get her to say it again. Right now the only “m” sounds she makes is when she’s screaming her head off. Yeah wonderful. :-/

I know this is turning into the biggest, longest blog ever but I don’t know when I’ll be able to use a computer again so I’ll just keep going. Maybe you all should pace yourselves.

I don’t know what I would have done without Linda living with us this summer. She’s only staying until she moves to Bakersfield, but I have really enjoyed her stay. She is such a big help with Laelie. I don’t know what I would have done without her. And she came during a particularly rough time. God bless her.

Laelie has a new washcloth for bath times in the shape of a lion. It’s called a washcloth puppet. It plays with her and sings to her and tickles her with it’s “paws” (my thumb and little finger) while washing her. She giggles her head off during bath time! It’s the best ever! I wish I could put a picture up, but alas. Why was I using those boring washcloths before? Why oh why?

Work has been rough on me lately. I think these last few weeks with daycares and doctors and insurance and getting denied by iHSS again etc. etc. have been compounded by the stressful increase of work at my job. Right now we are going through a summer rush. I am a customer service rep for DawnSignPress, and a large part of my job is order entry for textbooks. Every college and high school who teaches ASL is ordering now for Fall semester. We have the best curriculum that has been #1 for years with no real close competition and it’s being updated this summer so it’s just been crazy. I’ve been getting out of work late almost everyday for the last couple of weeks. And when I do come home I’m stressed out. There was one week where I think I saw my babysitter only once before she left for the day because I got out of work so late. Good thing Linda is staying with us or I don’t know what I would do. My problem is that I’ve been trying to do too much work, but I only stay part time. I have had to realize my limitations and the fact that I just can’t put in the work to help out the rest of the staff that I would have liked. That’s hard on me, and hard on my friends at work. But I have this rule against melt downs.

It looks like I’ll be leaving for a business trip of my own in October after Laelie’s first birthday. I’ll be in Washington DC from Oct 15-19 at Gallaudet University. This will be my first time to Washington as well as the famous school for the Deaf. I’m excited, but Charley is already apprehensive about his turn as the single parent. His trepidations have me tempted to get him a babysitter… or at least have someone checking to see if he’s eating.

Okay have to go now. Linda is so great. The end.

When my mom died, my boyfriend told me he “knew how I felt” even though no one in his family had ever died. He told me to “not feel bad.” He told me the Bible says that all things work together for good (making Romans 8:28 my least favorite verse since most people take it out of context like that). He looked at me a month after she was killed and wondered why I hadn’t gotten over it yet. What was my deal anyway? Why was I being all sad and depressing?

And he listened for hours and hours. He held me as I cried. He was there at 2am. He went out of his way to learn about grief. He read up on it. He dragged me to a counselor. If it weren’t for him, I would be lost.

And some of his words were born from innocent ignorance. The pure kind of ignorance that comes from never having experienced what I was going through. And he had to learn not to say “I understand what you’re going through,” or “It can’t be that bad,” when I poured out my heart to him. And I appreciate him more than anything in the world. And I married him.

I learned the importance of words a while back after listening to a tape of my aunt talking about what to not say to single parents. This was back in my first or second  year of college. She and I switched cars after mine broke down in her hometown on my way back to Placerville. Her car had a tape of her talking about single parents, she being one herself. She is involved with S Moms. (Although I still haven’t figured out what the “S” stands for since it doesn’t stand for “single”… super maybe? :)) She said never say, “I don’t know how you do it,” because, and I never thought of this, most single moms don’t know how they do it either! And they may be thinking they’re not pulling it off and wonder if you’re noticing. Have I ever said that to a single parent? Maybe. Possibly. But I’ve never been a single parent (joking about Charley’s late hours aside) so it would have been said out of simple ignorance.

In the same vein, most people don’t know what to say to parents of special kids because they are not in that situation. They have, what my friend, Sue, calls, “boring” kids. I have had many conversations with other parents of “not so boring” kids, and many of the same themes arise.

It’s not helpful when you tell someone your kid’s diagnosis and they start out the next sentence with, “At least your child will never…” The nurse at the doctor’s office just told me, “At least your child will never fall out of her crib like my son did last week.” Many people have said, “At least your child will never scratch her face like my baby always did.” And after telling people why our babies don’t move, many of us have heard, “Well at least you will never have to chase them all over the house!” But what they don’t get is that they would die of grief if someone told them their child would never do those things! It’s like saying, “Well at least with little Johnny’s Down’s Syndrome, you’ll never have to worry about rising college costs!” It’s just not appropriate. Yet every time I’ve heard “well at least…”, it’s from some good-intentioned person trying to make me feel better. And it’s weird, but I do feel better–that is until I’m thinking about it later that night. Then I’ll think about how my little daughter will at least never do those things and I get sad all over again.

I’m not saying that I’m remembering this one person who said those things and that one person is, of course, you yourself, and I’m harboring hurt feelings towards you. On the contrary. I don’t remember half the times I’ve heard these things. I don’t have anyone particularly in mind (besides that one nurse mentioned above who was actually really nice) when I think of the hundreds of times I’ve heard words like these. It’s something I would have said too. In fact, I’ve caught myself saying similar things like this plenty of times. Well at least you had fire insurance… at least you can get another dog… at least there were no other people involved… at least they didn’t feel any pain. Later I’ve wanted to smack myself for saying those things! 

I realize now–and this is the point–that it’s not my responsibility to see the bright side for other people. It’s always better when someone comes to those conclusions on their own. Like somehow it’s okay for Charley to say, “At least my daughter will never have to wait in line at Disneyland,” but not for other people to say that. 

But even when people don’t know what to say, I always feel better after talking it out with someone. I hate elephants in the room. I don’t mind questions. I like talking about Laelia, and sometimes that involves talking about her disability in the same way talking about Billy means mentioning his bad haircut. I also like hearing about other people’s kids. I can sympathize when little Joey gets a hangnail. I don’t have to compare it to Laelie and conclude that Joey’s boo boo somehow doesn’t count.

And most of the other moms I’ve talked to feel the same way. At least the ones who are over the initial grief. We love how our friends and families have supported us and loved us and been a shoulder or an ear or a helping hand to us. Even when they didn’t know what the right thing to say was.

You give “boring” a good name. :) 

Well, that was interesting.

Our appointment time changed from 10am to 7:45am. We were there for five hours. During our stay a fire broke out on the third floor of the next building. Then a news crew showed up. So, you know, cool.

The neurologist who saw Laelie wasn’t encouraging about our eligibility for the clinic. We are starting some tests to *try* and find out what caused Laelia’s condition. If we do find out, and it matches something on their list, then we can stay. Just having the diagnosis of amyoplasia isn’t enough. They need to know what caused it. I told her (the neurologist) that back when we were diagnosed we were told a “vascular accident” caused it. The neurologist wasn’t sure about that. “How would a vascular accident effect her whole body like this? It would have to be a vascular accident to the spinal cord, which I don’t see evidence for.”

So what? She was just born that way!? We’ve been telling people for eight months that Laelie had an accident when she was still inside my tummy, just like people have car accidents and need to go to the doctor. Now she was just born this way?

It’s scary that this “just happened” to my daughter, but in some ways I think that makes me feel better. Like maybe something inside me didn’t break her. Once after being asked by my doctor if I would have more children, I told him that I couldn’t because, “my womb eats children.” I said that! Now I find out that it may just be a random mutation that caused this. And, yes, that may screw her chances for programs, clinics and funding for studies, because they don’t know what caused this, but it would also mean there was nothing I could have done. I can’t tell you how many times I have beat myself up thinking about if only I had conceived later or been more responsible about when to start a family, then she wouldn’t have been born this way. Now I might be able to say there was no accident. This is how she was born. This is normal for her.

I met a little girl around seven years old at this clinic who didn’t even have a diagnosis. How terrible! Imagine how hard it is for that baby girl to get through the system. At least we have a diagnosis!

We’ll go back to the clinic in August. But in July I have to gather information about my family to see if there is any way this could be genetic. So ATTENTION FAMILY!!! Please let us know the health background of everyone related to Laelia, if you know! Even minor things related to their health or body that were unusual. Please email me what you find! Thanks so much!

Baby didn’t handle the day of Children’s Hospital very well. She missed her nap and didn’t eat very well. Then she cried a lot at night, and now she has a slight fever. Actually so do I. I went to the doctor on Friday the 13th and got some blood work too. Of course it didn’t take five hours so baby and I aren’t even yet.

Speaking of blood work, that was a HORRIBLE experience. It was the last thing Laelie had to do that day. We get her in there and the lady taking her blood just says, “This won’t work,” so many times! She looks at me accusingly and says, “I can’t turn her arms around! She doesn’t have an inner elbow! This won’t work.” Excuse me! Then she ties up baby’s arm and flicks several places, unties it, ties up the other one, says like clockwork, “This won’t work,” and gets out a hot pad. At this point Little Laelie Love is crying. Then I go on the offensive. “Excuse me, (drawing myself up tall) but how long have you worked with children? Do you have any experience? Have you ever drawn blood from a disabled child?” Six years. Red Cross. ”Cerebral palsy and others.” Then her, “This won’t work,” became, “This won’t be easy,” with only a modicum of difference in tone. We finally did find a vein in her hand below the second knuckle. That hurt! It’s at this point, while I’m holding her arm still, that I remember that one time I took a friend to Urgent Care and they took her blood.. and I passed out just from watching! So I almost lost it and I wasn’t even looking! Then I take a long time to get her back to the car. I bought some bottled water and put my head between my knees. Ugh. Charley had to rescue me during his lunch break. He went back to work when my nausea passed. Such a good daddy.

One thing the doctors did tell me was that there were no cures and no new studies or treatments for what my daughter has. This condition is very rare, and throwing a lot of time into studies for it wouldn’t help that many other kids. There’s no way to grow muscles. There are no transplant surgeries I can put her on a list for. It’s not like when your kidney fails and you get a new one. I started to cry when they told me all this which immediately got a social worker tossed my way. It just felt like another denial. Not as bad as getting denied for daycare, but we still kindof are getting denied for this clinic unless something changes.

Another thing I learned from this clinic is that we have the best OT! We were given a free therapist session (second opinion) and we were told the name of the best hand specialist who could help us, and it happened to be the one we have!

Another other thing I learned from this clinic, is that out of all the staff of Children’s Hospital–a ton of college-educated, medical professionals who have “arthrogryposis amyoplasia” rolling off their tongues–not one single one could pronounce my daughter’s name. I’m starting to feel like I named her Xypoljamida. (It’s pronounced “Bob.”)

It’s a busy week for me and my friends!

Laelia - She has her muscle clinic on Wednesday that we got her in using the “back door” so to speak. We found out a social worker will be there to answer questions! We hope she will qualify for the muscle clinic. If she does, she may be eligable for help with durable medical equipment and different devices to bypass muscle use.

Kyle - His parents are the first people with any understanding of AMC to really reach out to me when we got Laelia’s diagnosis. Kyle is affected in all four limbs as well. Kyle will need to have surgery on his right foot.  Two bones will be taken out so that his foot will be able to lie flat. Kyle’s last surgery was when he was 17 months old. He’s now five and understands that surgery is scary. His parents are asking for prayer for him. The surgery is on Wednesday.

Ryan - This little guy is in New Jersey for his Christening this week. He also has all four limbs affected and turned one month old a few days ago. I don’t envy his parents flying back to California with a newborn. *eep* He is also in the first weeks of serial casting which is just hard on everybody.

Michele - Michele works with the YMCA to provide respite workers for families who have been touched by a disability. We recently were awarded this. Michele told me that she is excited to add our little one to the system since she is adopting a little girl from India with the same diagnosis! She’ll get to meet her new daughter very soon! I’m hoping to get lots of visits from this little cutie!

Bonnie - This amazing super star is crawling!!!!!!!!!! Here’s a link to her video: LINK! It’s cool, Bonnie gives permission in the video to show everyone. Bonnie’s mom, Beverly, has been a huge encouragement to me. She is the one who pulled me out of a dark place after the orthopedic doctors first told us that laelia would never walk. It gives me hope that Laelia will do this someday!