Laelia Sky

 Laelia’s day at the park with Bryant.

Haha, boy cooties!

Lali has been enjoying spending time with Phyllis while Charley and I try to figure out this childcare situation. Right now we’re driving to El Cajon everyday to drop her off and pick her up. She seems to love it there. We had other options, but none I trusted last minute like I would with Phyllis. It turned out our other potentional babysitter (also in El Cajon) got jury duty for a long while and isn’t available. So that’s where we’re at still.

I got brave and attempted posting on Craigslist again for people in our area who could stay at our apartment with her. Despite the one jerky person (who should read this), we’ve gotten a few interested people. So far no one has been willing to do the stretches, but I’ve been doing them after work and then Chelsea (and now Lauren on Wednesday) does them again at 4:00pm. So even though it’s not ideal, it’s working okay. Laelia’s right wrist has frozen up, and that worries me.  I think I can get it loose again with some double-time stretching this weekend. It’s crazy that my daughter’s body does it’s own thing like that! So if I do find a sitter, even though I’m not requiring it, it would be WONDERFUL if they would stretch her.  

I’ve been nervous about meeting new people who could potentially affect my daughter’s life in positive or negative ways. I just don’t know these people, and for the first time in my life, strangers scare me. Well I’m specifically talking about potential nannies. I plan on calling references and doing my homework, but it’s still scary. I also feel awkward asking these nannies personal questions, but it’s important that I know if their religion will affect something they might do around my daughter or if their first husband’s sister who just got out of jail may hunt them down or something.

Hmm, paranoid much?

I’ve just been so lucky to have a great system of friends, long-distance family and wonderful YMCA respite workers. I have people who have offered to help in a crisis. I have friends learning Lali’s stretches. The nursery at church has never once balked at caring for her. It’s been nice, even comfortable.

Come back comfort zone!  

Let’s face it, it’s 2:45AM and I can’t sleep because I just got emails from a couple people interested in watching Lali while I’m at work–people who sound wonderful, but are different than what I expected. So why am I so scared? Maybe it’s the unknown. What could happen. I’ve thought the worst! I didn’t know my brain could go places like that, and I certainly didn’t surface unscathed.

I didn’t even want a nanny! I wanted to put my normal child in a normal daycare and continue with my normal life! But NOT ONE DAYCARE IN SAN DIEGO will take her! They claim it’s a liability issue. Because Lali couldn’t defend herself, they wouldn’t be able to stop the other kids from hurting her… since they are ostensibly impotent!

*sigh*

So that leaves my happy, good-tempered, wonderful baby (I should add all that to the ad) looking for a wonderful nanny who will work for bread crumbs. Here’s her ad on Craigslist: http://sandiego.craigslist.org/csd/kid/856627203.html

I have to decide if I want someone “looking for childcare experience” or to pay a little more for someone with said experience.

I’m praying that I can find someone who has childcare experience but wants special needs experience. Some people do because it looks good on resumes.

Cross your fingers!

Below is something I posted on my personal blog (which is not limited to thoughts about Laelia) a little while back. It was meaningful because it was one of the first blogs where I faced one of Laelia’s limitations head on, but didn’t cry while writing about it. I had just done a Bible study called Living Free, and it left me completely and utterly peaceful. That peace didn’t necessarily affect my emotion (as in “Weeee, I’m super happy!”); it instead affected my ability to be logical. (Something depression can rob from me.) So this entry was very meaningful to me at the time because it denoted a change in perspective and attitude.  Note my favorite sentence below, “I think she’s great. I think she’s the best. So walking must not make a person ‘great’ or ‘the best.’”  That was actually an epiphany to me at the time!   

***

Subject: My baby might not… walk.

Laelia may never walk. I was sitting on the couch today playing with my baby and it dawned on me that my baby is not looking like she will be able to stand or walk or lift her arms. Her legs never got straight, her muscles never fired up or grew. Her therapists mentioned that she was one of the worst cases as far as muscle atrophy that they had seen recently. (Don’t get me wrong, they are the most positive people I know and had to follow that up with praises about her passive range, etc. :)). Point is, she probably won’t walk, at least from all accounts.

But I’m not sad. I’m not depressed. She’ll do other things. She’ll get around. If she uses a chair or hovercar or whatever, it will happen.

And in Heaven she’ll fly.

So I’m not upset. I have peace that doesn’t make sense. I think at least in this way I’ve accepted my baby for who she is. I think the world of her. I think she’s great. I think she’s the best. So walking must not make a person “great” or “the best.”

So maybe I’ve grieved enough to let go. Now I can just focus on raising my little squirmy, fussy, grinny, wiggly, singing, goober-faced kiddo without letting her disabilities get in the way.

My friend, Sue, told me I would know when I was getting better the day I spelled “arthrogryposis” or “amyoplasia” without capitalizing them. Last week I did that while typing up a blog. Today I did that in my heart.

We’re gonna be just fine.

To see how Laelia is doing, go to her website: www.laeliasky.com

Ahoy, me Hearties!

Today (September 19th annually) is national Talk Like a Pirate Day! So unless you’re a lily land lubber, I expect that everyone is doing this! Don’t make me keelhaul the lot of ye, savvy?

Aye, being an old salt at this parentin’ business has taught me one thing: ye can’t get the lassie babe t’ eat her greens even with a threat t’ send her to Davy Jones’ Locker! She just be lookin’ at ye like ye’re hornswagglen her. So I’s be batten down the hatches and hoistin’ the Jolly Roger for another go a’ it. Little scallywag!

Yo ho ho!

 ~Pirate Mommy

PS: Pirate baby would like you t’ weigh anchor and hoist the mizzen! Shiver me timbers!

About the Faith Healer post… I didn’t know Charley had posted about this until this afternoon. (We’ve all been sick and taking turns caring for baby while the other sleeps, so he posted it while I was asleep before he left for work. Just one of those busy weeks.) 

So for people who have asked (now that I’ve read it), yeah this happened a few weeks ago. It doesn’t have to do with her cold she has now, but with her arthrogryposis and amyoplasia. 

The guy was really, really nice. He asked our permission and everything. It wasn’t a “faith healing” so much as a “faith praying.” Well, tomato tomauto. And it was fine at the time. It wasn’t until later that we really thought about it and what impact it would have on our daughter. So we still very much enjoyed the party we were at and had a GREAT time!

Hmm… one thing I wanted to add was that the person who prayed for Lali said he had heard of amyoplasia (he was in a field where he was educated about muscles) and wanted to do a “muscle test.” Even though the rational me would have balked at this, the desperate mother who has tried everything and would do anything to make this all go away won out. At first I seriously thought, “Wow, Children’s Hospital, Shriners Hospital and the Muscle Clinic all didn’t have something like this!” Hmm, maybe that should have been my first clue.

It’s hard because mothers like me are desperate and going through hard times. The last thing we want is for someone to take advantage of us and our feelings. I consider myself an educated person, heck I was top of my class in college, but I’ll admit that it wasn’t until after the muscle test began that I realized it was pseudo-science. Originally I thought maybe he would feel her muscles and tell us ways to massage them so they got the most blood flow and could be stimulated better. Or something. Instead he pressed down on my extended arm while touching Lali’s tummy or head and let me know if there was a problem based on the fact that he could push down my arm while I was holding her… because we were ”linked.” 

He found problems with her muscles (duh), but also “problems” with her ovaries and heart.

That’s not okay. And, no, these problems don’t exist. 

(Hey remember the time when I was having a hard pregnancy and a psychic at my work told me that my baby had diabetes? Yeah I hate stuff like that.)

At one point I was working against him to keep my arm from going down (not just being difficult, but because I knew there were no problems with her ovaries and thought maybe I was doing something wrong), but he just pressed it harder so it would drop and he could say there was a problem.

But really it all happened so fast.

At the end he prayed for Lali. By this point I wanted to leave, but I believe in prayer so why was I so uncomfortable? I didn’t want people to think I would go through all that and balk at the prayer. (It’s funny that this happened in front of other people including my husband and a pastor, but everyone seemed frozen.) After the prayer he repeated the same test again, but this time my arm stayed firm so he pronounced everything healed. All healed. He said that the prayer would cause Lali’s body to start regrowing muscle. (Yeah I know.)

I’m glad I had this experience, especially glad this happened while Lali is still little and unable to understand why she was the center of attention for all the wrong reasons. This little kid just assumes she is the center of the universe so this was nothing new for her.

It also gave me the chance to reflect on why I was uncomfortable with a prayer like this. It’s because it turns God into a vending machine. You put in your quarters (prayer) and take out your soda (miracle). Yes the Bible says that if we ask anything ACCORDING TO HIS WILL he hears us. But the catch is that it has to be God’s will. And who is a faith healer to determine God’s will? Who am I to do that either? Yes, I pray for healing for my daughter, and I have faith in God and believe that he can heal her. I ask in Jesus’ name. I ask and I believe he hears me.

So there must be something brewing in heaven. I bet God is going to use Laelia’s condition in a great and mighty way in people’s lives. And I wouldn’t want to change that… well I probably still would if I could because, hey, I’m her mommy! :) 

So since this is our SECOND encounter with someone who wanted to do a faith healing, (SECOND!!!) we’ve come up with a few rules now that I never thought we would have to enforce. (This applies to faith healers and their ilk.)

Rule #1: You are not allowed to express an opinion to our daughter (whether based medically or religiously) that goes against our belief that God created her and loves her and can use her just the way she is.

Rule #2: You are not allowed to do a faith healing or suggest a faith healing around our daughter. No talk is allowed that makes her feel small or less significant because of her condition.

Rule #3: If you do suggest a faith healing to us in an appropriate way, (no Charley won’t hit you… um, at least I think he won’t hit you :)), we will give you permission to pray for her, on your own, well away from her so she does not feel awkward or stigmatized. Then if she is healed, we will promise to give God full credit and thank you for your prayers… which apparently were better than ours. We promise. Cross our hearts.

That way it’s dependent on YOUR faith, not hers or ours. Hey, and if you want to go crazy, you can call down fire from Heaven like Elijah to prove your point. 

But I doubt you will.

Yeay! She’s doing better! Since this video I have given her a bath and clipped her nails so she no longer looks like Howard Hughes. This video was taken last night just as she was starting to get some of that rambunctious energy back. I love to watch my kid play!

The plasma ball was a gift from Aunt Linda and Uncle Bud to get Lali to use her arms more. I thought it might be scary for her, but I was wrong. She LOVES it! The first thing she did was to whack it with the back of her hands. Then she tried to lift her hands on top of it but it was just a little too high. By the time I thought to get out a camera, she was slowing down, but still having a blast. And she gave it kisses.

Also you know how she loves to rip paper off the table at the doctor’s office? Well today she tried to rip a metal bar and couldn’t figure out why it wasn’t ripping! It was so cute. I kept trying to tell her that metal doesn’t rip, and she just gave me this stubborn look and kept going at it. :) I moved her hand off the bar, but she just worked her fingers back on there. Willful thing! :) 

Her temperature is back to normal and her nose isn’t quite so runny. Maybe what they say about AMC kids is true. That they get subjected to a lot of “stuff” like hospitals (germ central) and different things being put in their mouths (since when they’re little, they can’t learn with their hands), so they build a tolerance to illness. My number one reason for taking Lalikins to the beach was to expose her to the bacteria in the sand. I definitely don’t want her to be a shut-in!

Charley and I were talking and he agreed that having a child with a cold (and nothing else wrong!) is a very normal feeling. We’d much rather be the parents who drive in the middle of the night to get cold medicine than the parents who are up in the middle of the night soaking a cast off and rubbing legs so blood can go back into purple toes. Or calming the child you just stretched too hard. Or taking off the bandaid over some boo-boo caused from some test. Or putting ointment on some pinch or rash caused by splints or braces.

I’ll take the cold.

FROM: Charles
TO: The guy who performed an impromptu faith healing on my daughter a couple weeks ago

Listen: I know you mean well. You believe yourself to have a gift, a special connection with God, and you wanted to share your power with us. And hey, if Laelia had begun to miraculously grow muscle after you did your thing (she didn’t), I would have been the first person to humble myself and thank you profusely for praying over my daughter.

But I don’t have faith in you. Don’t get me wrong—I absolutely believe that God could miraculously heal my daughter. But I don’t have faith in you.

So why let you do your thing? It was more about humoring you. You seemed so happy when you ran into us at the party, and so happy that you could pray for her. At the time, the experience seemed pretty harmless, if a little uncomfortable, like when an older relative with Alzheimer’s says something nonsensical and you just have to play along. I will say this—you were genuine in your faith. At no point in time did you try to hustle us or get us to buy a watch.

But you know what? The more I think about it, the less harmless the whole experience feels. When someone wants to heal Laelia, unless he or she is very careful, a number of things will get communicated to her, regardless of intention. Things like:

• Your life has been leading up to this moment—an encouter with ME!
• You have been incomplete before now. Now that you’re healed, God can actually use you for something important.
• I guess your parents don’t love you very much—otherwise they would have taken you to see me a long time ago.
• If you don’t heal after this, it’s because you’re doing something wrong.

I suppose Laelia’s not getting these messages yet, seeing as how she’s not quite 1. But she’s only going to get older and smarter, and folks like you will still be out there. God has a wonderful plan for my daughter’s life. He may heal her in this life, and He may wait to heal her in the next. But don’t go telling Laelia what God’s plan is for her life when you clearly don’t know.

That’s why, the next time you ask to faith-heal my daughter, I’m just coldcocking you, no questions asked. Fair warning.

eh

This has been the most half-hearted play time Lali has ever had. She just has no energy, but God forbid you take her toy away! Then she’ll fuss at you in this half-hearted way that rips your heart in half.

Her playing became more and more perfunctory before it lost all momentum. She slumped over to the side, toppling the toy over, and continued to play by pressing the big blue button over and over again while staring at a fixed point off to the side.

A healthy Lali would push that button and wiggle joyously at the ensuing melody. But little Miss Sickie just lies there. And look how sweaty she is! I can give her a mohawk by shaping her slick hair with my palms. It’s actually pretty adorable. I should have taken a picture of that. :)

I took Dr. Baggins’ (smile) advice and put some cold water on her. I didn’t think about the air conditioner dehydrating her. I also gave her a little back massage since I don’t have an infant vibrator or massage device like Aunt Linda or Uncle Ben suggested. Hopefully that should help her sleep at least.

That and all the drugs she’s on.

Laelia: “Maaaaaa ma ma maaaaaaaaaaaaa.”

Alexis: *gets up and runs up stairs*

Charley: *yells from couch* “Did I just hear Lali cry, ‘Ma ma’?”

Alexis: *half way up stairs* “Yeah she does that now.”

Charley: “Oh no. Game over.”

 Yes it tugs on my heart to no end and gets her whatever she wants faster.  And I’m certain she knows it!

Almost 17 hours later and her fever finally broke! It’s not gone, but it’s down almost two whole degrees! It was getting so bad that I could have cooked an egg on her! I’m serious!

Now that she’s feeling a little better she’s been more vocal about the medicine. She’s also eating more. I got half a serving of squash, a whole serving of banana/plum mix (eww), and two ounces of oatmeal down her today so far.

She also let me sleep!!! I feel human again! We both took a nap from around 8:00 AM to 11:00 AM. Ah.

I just cancelled physical therapy, occupational therapy, Chelsea (who does Lali’s stretches) and her Early Start evaluation tomorrow. Last night I cancelled what would today have been her first morning with Phyllis. It’s strange to do nothing on Tuesdays since usually we spend every Tuesday at Children’s Hospital. I’m feeling a little truant.  

I put her favorite bird bath toy in front of her and she squealed, “Ga ga gwa!” I was listening closely to see if her throat sounded sore, but I can’t tell. Now she’s busily grabbing the plastic pieces out of the base of her toy and dropping them off the couch. Every now and then her nose will run and she’ll look up at me and fuss a little. It’s so precious. I just wipe her nose and distract her with other toy. It’s strange to watch her mechanically play with a toy without smiling her head off. Poor little baby.

Wow, it’s a powerful feeling being able to comfort a child!

Laelia will pout and say “Mama” until I pick her up or sing to her. She likes to rest her cheek or forehead against my cheek. Even when I give her the yucky medicine, she seems to know I’m doing something necessary for her. She complains and then goes right back into my arms.

I feel like I’m chronicling my night with a sick baby that will be familiar to every mother. And that makes it feel normal. Having to deal with her special needs, or being up all night when her casts hurt, was a far cry from dealing with her sick. While she’s sick she’s consolable. When she was just in pain from casts or after surgery she was a mess. But it’s probably at least partly due to the fact that she’s a little older now.

Her fever still hasn’t broke, but it’s come down. She was up every hour or so all night long. It’s crazy all the dreams I remember because they were interrupted! People really dream a lot at night!

Lali and I are tired. I am getting a sore throat now and am hoping it’s temporary (or lack-of-sleep related). Laelia also smells different. She smells “hot,” like burnt meat. I have a feeling that I’ve kept the temperature down by sticking her by air conditioners and the like, but not because her internal temperature is raging any less. I just pray that triage nurse knows what she’s talking about. I am terrified of being solely responsible for this little human being and her temperature!

Even though we’re both exhausted, Lali looked up at me after I gave her some medicine, smiled and said, “Na na ma ma ma?”

I’m in love.