Laelia Sky Wesley

While we were in the splint room waiting for the occupational therapist to adjust Laelia’s elbow splint, my adorable baby leaned over and gave me a kiss right on the mouth with a smack and everything! It was so precious! Since then that’s all she does! Since some people (read: HER GRANDMA) have demanded more videos, here is one of her giving me kisses. Enjoy!

Other cute videos demanded by her grandma include:

The one of her getting her nose kissed.

The one of her head butting her aunt Linda.

The one of her giving big open-mouth kisses to her duckie.

The one of her daddy kissing her tummy until she turns into a fit of giggles.

The one of her keeping a drum beat with drum sticks.

The one of her copying her daddy’s tongue noises.

Whew. There. That should appease the grandma for at least a few more days.

A few weeks ago, (sorry I didn’t get this up sooner) Linda and baby and I went to the zoo to see all the animals. Baby ended up just staring at all the people instead of the animals. And conversely, a lot of people who came for the animals spent a suspicious amount of time staring at (and many talking to!) Laelie. Anyone over 50 was puddy in her chubby hands. She loved her day. Here are some highlights. 

We started off the day with a healthy breakfast. How Mommy got it on my head is the real question. One change of clothes later…

We went around finding all the Laelie Bugs.

Here’s a cute one.

Then we saw the reptiles. Laelie was SO transfixed.

 

Snakes are boring. We fell asleep.

Then we ended the day in the spinny chair. Dizzy fun! (Shhhh, she thinks it’s part of the zoo. :))

Also while we were there we took the stroller up this moving walkway that went up this huge hill. Linda was out front pushing the stroller while I was behind her holding Laelie. The moving walkway just got steeper and steeper to where I had to squat to keep my balance. Then at the very top of the walkway the stroller got caught in the lip where the track rolls under us and Linda goes crashing into it! Now I’m walking backwards up a steep hill with my legs spread out all funny while holding Laelie in my arms to avoid her. All the while Linda is squealing. She finally got the stroller unstuck and we were able to get off that thing. It reminded me of my honeymoon. (Now now people. ;)) Charley hit the top of an escalator at the airport while pulling all our luggage behind him and it all fell backwards on me. I went tumbling over it and we had a great time explaining to the airport security that we were on our honeymoon. It must run in the family.

Achievement Unlocked: The Right Click!

After a bit of trepidation, Laelie warmed up to Bolt. She cuddled up to him for her lesson on how to right click. She had already mastered the space bar. By the way, did you know that if you press the space bar while reading/doing stuff online that whatever you’re doing will scroll down to the very bottom? Yeah it does that every time your baby presses that thing. Very annoying come to think of it.

It’s been so wonderful to have guests in the apartment. And oh so good for Laelie. Someone is always watching her or playing with her or making noise around her so I don’t get burned out as much. Plus I’ve seen the energy level rise significantly around here. SO NO ONE IS ALLOWED TO LEAVE!

Bolt (whose actual name is David Ringer) and Linda both introduced us to Facebook on Saturday which ate up most of our weekend. I spent so much time uploading pictures of my adorable kid that I had no time to blog. Or clean. Or cook. Or sleep. You get the idea.

But the absolute best thing about having Bolt around is all the Spades I’m winning! Girls against guys is so fun. We are undefeated! And the cheating just gets less and less subtle on the guys end. (If this does not invite Charley to a retaliation blog I don’t know what will.)

Fun fun.

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.

Laelia goes out to sushi!

We let Laelia try some edamame the other day. I brought along a grinder and watched all the funny faces. Then she watched Rachel eat some Miso soup. It was fascinating.  

We were told by her pediatrician that by the time she hits nine months (which happened yesterday), she needs to be eating half formula and half solid foods. She’s a little behind there. It’s not like she needs the extra calories because she doesn’t move as much as other kids, but we are trying to get her to eat more solids. We finally mastered carrots and peas along with our oatmeal. But she still doesn’t like avocados or edamame, though. Which starts me wondering if she really is my child.

I realized that we didn’t have to see her pediatrician for her nine month shots until the 23rd. I feel like when I was in school and I got an extension on a research paper. I just bought some rice and green beans and am ready to shove them down her throat.

By the way, my baby with her mouth agape like a baby bird is only the cutest thing in the world. :-O

1. Construction - I hate construction. They are building a huge apartment building next door and the noise wakes my baby up in the middle of EVERY FREAKIN NAP! I asked how much longer they would be in construction and was told by a nice, thickly-accented gentleman, “Ten minutes,” which was followed by smiling and lots of nodding, on both sides. Charley found someone else and asked the same question. He was told they had three more floors left to build. Three more floors! Charley said if the thing gets any higher, God will have to strike them with language confusion. From our conversations, they’re already there.

2. No Daycare - We still haven’t found a daycare. I leave for work at 6:30 in the morning and get home at 12:45 Monday through Friday. I have two nannies right now: one leaving this month to have her baby next month, and the other staying through as much of the summer as her pregnancy will allow. Hopefully her baby will not be an early bird, since every time Laelie gets a friend, I lose a sitter.

My hope was that Laelia would be in a daycare where she could be socialized. I know kids raised with other kids pick up language and motor skills faster. Plus Laelie could get a great immune system from all the free-floating germs. But most importantly, I would love to see her in a group of mixed friends who grow up with her for a few years so she doesn’t feel alone or ostracised. So if anyone knows anything about a daycare willing to put in some extra time with a special baby, we’d love to hear about it.

3. Looking for Daycares - Well I called every single daycare off a list within ten miles of my zip code, my work’s zip code and the route to and from work. Then I Googled more and tried them. I was declined by every single one. If I found something that took her age group and whose waiting list was shorter than six months, I only then told them about her special needs. It got me so depressed when I would hear their voice change, get accusations of, ”That’s not fair to the other children,” or just pass me off to their manager/supervisor who would get me off the phone.

4. The System- I then signed up with a daycare finder organization. They said they couldn’t find one single place for me. They then said they were fairly new and to try calling around (which I had already done). So I next signed up with a government daycare finder to find me federally funded daycares. They couldn’t help me. Together We Grow was mentioned, but they won’t take my daughter. They did give me the number for Easter Seals and told me that even though they didn’t think Easter Seals did this sort of thing, maybe they would have some advice. Then I bugged the YMCA, First 5 Advocacy and Exceptional Family Resource Center. I’m already in the YMCA’s system and the lady there was really kind. She is even looking for old contacts she used to know.

But pretty much everyone has “helped” by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me the number of the first person I contacted that begun this insane process in the first place.

But moving on with my points of contention…

5. KAFOs - They still don’t work. Enough said?  

6. Mean Anonymous Emails - See previous blog, “Cyberbullying.”

7. EMG Testing- An EMG test is when they stick a thick needle into your muscle for the sole purpose of shooting electricity through it in order to measure how bad it is. Laelia’s EMG is scheduled for July 16th. Charley and I decided that he should go without me. The test will only spit out depressing results and require calming down a Laelie-faced pincushion. I realized I didn’t want to know the results. We’re only doing this as one more hoop we must jump through anyway. This isn’t leading to a cure. This will be the first medical thing I will have skipped. I have mixed reactions of relief and guilt.

8. OT/PT - I called last week to cancel my appointment because baby didn’t look like she was feeling well and needed to sleep through it. This led to my accidentally getting kicked out of their system when they cancelled all of my physical therapy appointments from now until the end of time. Effectively also losing our time spot which was then filled by other people. And we realized that our OT had paperwork that had not gotten to our insurance. Which led to OT also being cancelled. Oops. So for over an hour I’m waiting at Children’s with my Early Start representative who had come this one and only time to view Laelia’s therapy sessions. *groan*

I spotted a woman who looked unfamiliar (but of course I’m never in the waiting room all day), wheeling her son out of the therapy evaluation room. Her son had the tell-tale skinny arms and legs with crooked wrists. He was also holding up his end of the conversation with his mom, so probably not mentally disabled. Thinking it might be similar to what Laelie has, I asked the woman what her son’s diagnosis was. She immediately stopped walking and looked at me like a starving person looks at a steak. She tearfully told us, my empathic Early Start Rep and I, all about how her son was born perfectly healthy and whole. She was rudely told by an impatient doctor (over the phone!) that her son had a very rare condition that hadn’t been seen in Children’s Hospital since 1976. He would go through these terrible stages next and there was no cure. Sorry and have a nice day.

Unlike Laelie who was born looking the worst and has slowly been straightened out, she has a son who went from running around seemingly healthy and whole to slowly losing abilities and becoming crippled. Not only that, but she was from El Centro and had commuted a long way to try and get seen by a physical therapist since there were none in her area. We stayed and talked. I couldn’t help thinking that this person needed to spill out her heart. Later as I was dealing with paperwork I thought, “God, did you screw up all of my therapy appointments, putting me through weeks of paperwork hell, just so I could encourage one person?!” Maybe.

She told me about her son. She told me how she was forced to become a stay-at-home mom because of her situation. She told me how she now fully believes that it takes special parents to raise special kids. This is something I’ve been told a lot but actually never believed. I think kids are lucky to get special parents. And this kid was definitely one of the lucky ones.

9. IHO - In Home Operations has me on a huge waiting list. I have an advocate who called up the IHO people with me so they could hear what I go through. I was told that IHO is like a hospital waiting room. The only way to get seen is if a bed is available. The only way a bed is available is if someone is better (gets magically cured) or dies. The IHO lady informed me that we are waiting for a LOT of people to die before Laelie will get seen. And then she may be denied. Then when I asked if there was any way at all to get higher on this list, I was told that my baby “wasn’t that bad,” and that there were other people in the world worse off than me. Then she made if very clear that I was wasting her time. When we got off the phone, my advocate could only say, “Wow, I’m so sorry. This is a dead end.”

Having an advocate has been encouraging in some ways. I found out that I discovered a lot of programs that most people don’t find without help. I also found out that I had done almost everything the advocate would have had me do. Now it was a matter of going through it all and doing it all again with the advocate on board. Mostly this has gotten me nothing, unless you count advocate sympathy. My poor advocate seems to be a bit discouraged now. I haven’t heard back from her in a while.

10. People Who Shouldn’t Work in This Field - Don’t work in organizations that help disabled kids when you have no empathy whatsoever toward them! You end up saying really stupid things. Like when I call to ask one question, you interupt in order to rattle off a list of your organization’s by-laws. This is a big filibuster because you don’t know how to help my child. Well she doesn’t fit into the system. I get that. If you aren’t willing to help me figure out what to do next then just say so! And please PLEASE don’t follow up your spiel with, “It’s not like Lee-la is suppose to be running around at this age anyway.” Oh really? Then why am I even worried about her future? Thanks, you’ve really cleared that up for me. Now I can get back to my bon-bons and reruns.

*cough*  

So it’s been a hard couple of weeks. Just had to vent.

Can I get a bunch of people together to track down and cover with goo all the bullies that have written me lately? Yes, that is what justice calls for, a good gooing. Most of them are ads promoting themselves as friends commenting about Laelia, then if you approve their comment they torment you with endless ads for RING TONES!!! Or worse, porn. But there are also bullies who by sheer cowardice write mean things to me through this site or youtube, thinking that anonymous messages about how my daughter is ugly or “deformed” are funny. That’s cyberbullying, kids, and McGruff don’t like that.

Speaking of cyber-related things, most or all of you have probably received an invitation from me to sign up for Yaari.com. This is a shameless bit of spam that sends out emails to your entire address book if you sign up for it. The email guilt trips people into thinking that if they don’t click on the “Is Alexis your friend?” link then I will receive this information and think they hate me. It follows up the email by saying, “Please respond or Alexis might think you said no. :(”

I fell for it after receiving a message from a co-worker who was leaving the company. I thought it was a way for him to stay in contact with everyone, so of course I would sign up (to his Indian love site? Okay, Jon, whatever) and be his friend. Well, just like he didn’t send out all those messages, I didn’t send out the subsequent mass mailing either.

Actually I have the perfect punishment for cyberbullies! Tie them to a chair and force them to feed my daughter peas and carrots! It’s the most disgusting/adorable thing you’ve ever seen. She recently learned to spit them out of her mouth a good foot’s distance. (She once got me right in the face.) Then have those dumb cyberbullies call different government assistence programs and daycares… ugh, no don’t do that. I’m not that cruel.

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. :)