Laelia Sky

For those of you who joined me in praying that Laelia would sit up (unassisted) before the New Year, you’ve probably already read my New Years Eve Eve (Dec. 30th) post and accompanying videos of how far away that goal is. What you missed were the hours of practice, the weights we bought to strap to her leg to give her leverage, and the tears as I had to give up the idea that Lali was going to do it by my time limit, if at all. New Years Eve we went camping and left Lali with Grandma Deb to get spoiled rotten. Unfortunately I got a stomach bug and we had to cut camping short and come back New Years Day. After Charley dropped me off at home, he went to retrieve Lali from Escondido. About an hour and a half later he was back and Lali was back in my arms. (Her hair looking so much better than how we sent her, thank you Kathy. :))

Charley sat at the foot of the couch where I was sprawled out clutching my stomach. He had tears in his eyes and I started to think, Uh oh, what happened? But I could tell he was processing it as he said, “God answered your prayer.”

Apparently (and if they had known this was a big deal at the time they would have taken a video or something) she sat up using the help of a block-shaped bean bag chair. And when Charley (who didn’t at first realize what they were saying) started to ask a few more questions about it, it turns out it happened New Years Eve–before New Years Day like I had specifically been praying about!

So, you know, cool!

I often don’t have a lot of faith. And I lose the faith I do have if it’s not on my time schedule. But my resolution this year is to have more faith. And let God do what he wants to do in my angel’s life on his own time schedule. It’s hard because that seems SO slow to me. She can’t crawl or stand or kneel or walk, etc. and she’s two years and three months old already. Her physical disabilities seem worse than they are in other kids with her condition too. (Not the arthrogryposis, but the muscle loss.)  But I trust that God will continue to make himself look good by answering our prayers on Lali’s behalf. Thanks for throwing me a bone here, God.

Oh yes, you shaped me first inside, then out;
      you formed me in my mother’s womb.
   I thank you, High God—you’re breathtaking!
      Body and soul, I am marvelously made!
      I worship in adoration—what a creation!
   You know me inside and out,
      you know every bone in my body;
   You know exactly how I was made, bit by bit,
      how I was sculpted from nothing into something.
   Like an open book, you watched me grow from conception to birth;
      all the stages of my life were spread out before you,
   The days of my life all prepared
      before I’d even lived one day.

Day two.

This is something a stranger told me this morning while talking about the movie Juno. They probably didn’t get  my reaction to it since I started to tear up. Oops.

I Googled it and it’s a Davidic poem from Psalm 139:13-16, or at least an interpretation of the Hebrew poem by The Message. I knew it by a different interpretation, but I like this one better. I don’t think it’s suppose to be sad, but it seems sad right now. Still beautiful. And hopeful in some ways, but heartbreaking in others. Heartbreaking when applied to my daughter, since every bone formed in her body didn’t form the way I wanted. And now she’s in pain. But she is still most definitely, without a doubt, marvelously made! I love her so much!

Laelia and the Heater

Bleckidy bleck week. That’s all I have to say. Here’s the breakdown: 

Sunday: Found out my Uncle Ray had passed away.

Monday: Baby’s accident. And the sell of the Union Tribune (Charley’s job) goes through.

Tuesday: Late to work because had to make sure baby was not concussed. Hard day for baby at OT.

Wednesday: Crazy lady at Target. Laelia’s splint doesn’t work right. OT on vacation.

Thursday: We fear for Charley’s job. Massive lay offs at the UT.

Friday: Charley’s job (and subsequently Laelia’s insurance) are safe for now. We decide we can’t fly up for the funeral.

Saturday: Family emergency pops up here in San Diego. Family comes to us.

Sunday: Mother’s Day. Remembered Mom. Hard day.

Today Monday: My work gave me a bereavement day. Family comes over.  I finally get to blog. (So sorry it’s gonna be long.)  

It’s been a hard week. I have really been missing my mom a lot recently. Of course I keep telling myself that she’s having a better Mother’s Day than everyone else, but still, I wish she were here. She died two days after Mother’s Day back on May 15, 2001. Mother’s Day is always hard for me. Mom’s brother, Ray, died Sunday. That was hard on my family. Charlotte, Linda and Bud are the three surviving family members of my mom’s nuclear family (parents and siblings). So no wonder this time of year would have me thinking of family. And I hate thinking of how my family is getting whittled down to nothing. So by the time Laelia is my age, how many of the people who really made an impact in my life will be in her’s?  

Then there was baby’s accident. It involved my genius idea to put a ceramic bowl filled with drying flower petals on top of the heater so the cats couldn’t get to them. Then Laelia with her new mobility shows up and kicks the heater (which makes a cool reverberating noise), and that bowl drops down and shatters on her face.

As you can see from the picture above, it fell a long ways. It happened before Charley left for work, but this was the same day that the UT was sold. Not that coming in late would make a bad impression on the new owners, but we just didn’t know. So I left work and rushed home to take her to the doctor. She was bleeding out her mouth and facial bruising was starting. I didn’t know exactly where she was hit or how bad it was so I was relived when the doctor told me it was fine. How scary! It was only the inside of her lip that was cut which caused the bleeding (that didn’t require stitches), and even though it hit her face pretty hard, it missed her eye! (Came REALLY close though!) And it looks like it didn’t hit her head, although we still had to watch her for signs of a concussion. (Which kept us all up all night.) The rim of the bowl left a mark that went from under her eye, to right down her lips all the way to her chin.

Now she is doing a lot better and the bruises are almost totally gone. It’s only when I feed her something salty or try to brush her teeth that I remember she’s hurt. And she let’s me hear about it too!

Then the next day we have to go to OT (occupational therapy) and I have to hear, “What happened?” from everyone we meet. :-/ Not fun. What else was not fun was that it was a crazy appointment because our OT was leaving on vacation, and since she’s the best, all us parents freaked and got last minute appointments. So it was very stressful. We only got one splint made, but it doesn’t work to wear at night (because it cuts off too much circulation) so we have to wait until Jill gets back from vacation to start using it (and of course she still has to make one for the right hand.) We learned that Laelia’s hands are tending to drift (little finger leads her hand to the side) so we added a new stretch that pretty much just holds her hand straight while we move the thumb to the side to straighten out the hand. Turns out it’s doing this on both hands because she’s missing the little muscles in her forearms that would keep them straight. More muscle loss?! How much muscle can this kid be missing?!

Then the next day is my funny Target story. When checking out, the lady at the counter asked me if Lali could walk yet. I just said, “Not yet.”  The lady looked so confused. “Well why not? Have you tried? Try right now and see if she’ll do it!” Of course I have this internal discussion on the merits of explaining arthrogryposis to a stranger verses dropping my kid to the floor. But the next thing I know, to the floor she goes! I let her down feet first so she of course slides to her tush and starts exploring the dirty floor. “See, she’s not ready yet.” I say and then pack my bags. The lady was mumbling something about me never letting her try because I hold her all the time, or some such lecture, but then let it drop.

Thursday began the most stressful part of our week. We thought Charley had lost his job, but thankfully that’s not the way it turned out. Still, for half a morning we were sure Laelia would not be able to go to therapy anymore and we would have no place to live. Or at least that’s what I was thinking in a panic. 

Then we had an entirely different issue down here that my family has had to deal with. Two of my family members came down which was nice since we couldn’t go up to the funeral, but the circumstances surrounding their visit are of course not good. I just learned a little more about it today, and am keeping them in my prayers.    

Well now that I’ve vented about my no good, very bad week, I remember how my mom would always make me “count my blessings” if ever I complained too much. So here goes:

-We signed up for a CF walk to support the Cystic Fibrosis foundation. It’s happening May 16th. We’re taking Lali in the stroller. To donate to my team click here. We’re on the team Emma’s Angels. Emma’s mom was very supportive and comforting to me when Laelia was first diagnosed. Even though Emma’s condition is very different from Laelia’s condition (we even go to different floors of Children’s Hospital), it’s amazing how similar our struggles are!

-Got to be with friends and family this week.

-Laelia is more mobile than ever before.

-Charley still has a job!!!!!!!!!!!!

-My job has been flexible.

-Charley gave me an hour massage when I was feeling down. Just because! Then I used the gift certificate that the president of my company gave me for another hour massage, only a professional one this time. But I still liked Charley’s better. :)

-And best of all (because I’m weird like that) my cousin Charilyn and Charley and I got everything done on my housework to-do list!  Hey, that stuff makes me happy.

~~~

There, happy Mom?!

How to make: Cut a plastic hanger to correct length then duct tape a Velcro strap (or modified thumb splint as seen above) to hanger at a slight angle. Tie to screaming child’s wrist until she calms down enough to learn to use it. Enjoy!

I took a couple quick videos while Chelsea was over. This is the first time Laelia had ever worn these and look how good she does!

Laelia is able to play with toys at eye level!

Laelia can pick up a toy and then bring it to eye level! 

Ideally I am hoping she can use her shoulders to plant the sticks in the carpet then lean back a little to bring her hands up! (It doesn’t really work on hardwood floors since it slides around… but maybe if I add puddy to the ends…)  She definitely shows the potential to plant and lift in the second video. Although she had only been wearing them for a couple of minutes, she still figured it out pretty quick. She could even maybe feed herself using these!

I got this idea at the Fellowship of San Diego on Sunday. Charley and I were on nursery duty hanging out with the toys and toddlers. We left Laelia playing by herself with a long plastic toy filled with beads while we wrestled the other kids.. I mean, “lovingly cared for them.” ;) And since Laelia is not generally one of our adorable troublemakers, we ignored her for the most part. So it was a suprise to glance over a little while later and see her holding her toy upright! With her hand at eye level! Then just when I was about to beat myself up over not bringing my camera, David Powell pulled out his cell phone and took this.  

Let’s just mention that before stretch therapy she was not able to lift her arm that high in the first place! And without biceps, this is not something I imagined she could do! But it all makes sense. She used her leg to anchor the bottom and then just reached out and used her body to bring the toy upright. Then she watched in awe as all the little beads swirled around to the bottom. My child the genius!

So I ran around the house when we got home looking for other long toys. Then I thought of the Muppets and how Kermit’s arms were held up by stiff wires. Then I thought, What if I can get some sticks or something so she can use the same motion with the toy to get her arms up in the air anytime she wants, but use something as thin as wire so it doesn’t get in the way! I thought of using drum sticks, but they were too heavy. We planned to go to Michael’s (you know the craft store) but they were closed early on Sunday. I actually got kinda panicked about it, like if I didn’t make this thing in my head RIGHT NOW it would disappear forever. Then I actually prayed that God would help me. The very next cabinet I opened a hanger fell out! It was the perfect weight and length and everything! I don’t know when I had shoved a hanger in that cabinet, but it fell into my hands right after I asked for it!

So even if she doesn’t master these contraptions, it was still a cool idea. And it’s nice to feel like God cares about the little things. And it’s exciting to see her hands up in front of her eyes!

So now what to call them. Arthrogryposis Helpers? Amyoplasia Applications? Biceps Shmiceps? Um, Kermit Arms? Laelia Limb Lifters? I could go on, but I’ll spare you all.

So I have good news! We discovered on Saturday that there is a set of splints that do stretching! The company that makes them is Dynasplint Systems Inc. Their ad says, “Regain Your Range of Motion!” and “Stretch Beyond Your Expectations!” The consultant I talked to convinced me when she mentioned they were, “Pain free!” (Music to my ears!) It sounds wonderful (although probably quite expensive) and perfect for our situation! And the way this all came about is a rather interesting story.

It starts with Charley’s job. Charley (you all know him as Charles, but, hey, I met him in high school so he’s Charley to me ;)) works for San Diego’s Union Tribune. That’s a newspaper. You know, it’s like a news report delivered to your door in paper form. Still with me? Here I’ll help you out by providing a link: LINK!Okay, so it’s quite antiquated. (Although maybe the link was insulting to your intelligence. :)) Believe it or not, the employees at the newspaper are not oblivious to the fact that the newspaper has fallen on hard times. We got our official letter from James Copley, the owner of the Union Tribune, and have been warned about the hard times ahead. In fact, it’s looking like many people are about to lose their jobs (possibly by the end of the week). Many more will take pay cuts. And the newspaper itself is up for sale. Charley is hopeful that he will retain employment since he works in IT (the computery side of things). However, we’ve had our 401K matching cut off, our insurance go way up (along with copays), and there are a couple of months coming where employees will have to take a couple days per month of leave without pay. This means that our insurance is pricier and we’re starting to worry about losing it all together. Besides what that means for Laelia (since she is dependent on this insurance for medical care and therapy), it also means that we are starting to use what we have while we have it. Which led us to make dental and eye appointments out of the blue. (Even though I hate both of those things!)

Which leads me back to my story. So we went to the eye doctor Saturday to use up anything our remaining insurance would give us. Yes, I have astigmatism. No, I don’t wear my glasses like a good girl. Yes, I should go to the optometrist. No, I won’t! It’s sad considering that I’ve worked at three libraries in my day, and Charley is really disappointed that I never had a sexy pair of librarian glasses. (He was really pushing the upturned frames with the pearl chain. Ugh.)

So we were getting ready for our local (walking distance) optometrist appointment when we realized that neither one of us had gotten a sitter for Laelia. So we dragged her along so she could make friends with the nice optometry people. Well I put her on a chair where she could show off her excellent balance, and one optician complimented her good sitting abilities. So I told her about the Bumbo chair that I got at my baby shower. Those things hold the baby in place so they learn to sit up. Well then she mentioned that it wouldn’t work with her daughter, what with her casts and all!

Turns out that the optician, Holly, had an adorable little five-month old with club feet and spina bifida. So we learned about her little one, Annabelle, while Holly and Laelia played together. Laelia got to be an encouragement to someone, and that made me very happy. Laelia was on her best behavior too! … Well most of the time.

Then a patient came in the office for contacts or something and Holly introduced us. Her name was Kim and she was an ankle and foot sales consultant for Dynasplint. She ran back to her car and brought us flyers and brochures. They have splints for everything Lali needs: elbows, wrists, knees, fingers, even shoulder rotation! What caught my eye was the knee splints (since we tried those awful KAFOs that slipped and didn’t work because we had the Dennis-Brown bar in the way). I mean I can’t tell you how many times I have wrapped up her knees in stockinette as make-shift knee braces when they had these wonderful things available!

Dynasplint Knee Extension Splint

So that’s how we found out about these nifty gadgets. They don’t just splint your joints, they stretch them! I sure hope we can get these with our insurance or something! Like I said in a previous post, the more we stretch her the better off she is! And these would be like continuous stretches throughout the day! Of course I wouldn’t cover her whole body with them since she needs THEM ALL. But I would just try to get some for her knees (or maybe just the left knee if it’s too expensive). Or her right wrist that we’re having problems with. Or her inverted shoulders! Those are her most painful stretches! (I hope they have all this stuff available in infant sizes!)

Right as Kim was leaving she hugged Holly and said something about how she knew God brought her here for a reason today.

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.

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) 

Me and my church peeps!

Laelia holds court at Sunday brunch. 

I have continued to be impressed by the support we’ve received from the little church down the road.  We have just really been shown kindness and generosity since the first time we stepped through the front door after determining that my pregnant tummy needed some churchin’. :) Actually one of the first people I met was Brenda, who through some preternatural ability asked if I was pregnant even though most of my family had no idea by this point. I wondered aloud on the car ride home if I looked glowing, fat, terrified or if someone finally guested why I was gracing a church’s pews for the first time in a long while. Actually I’m surprised they didn’t kick me out after my pregnancy hormones and constant all-day morning sickness for 17 straight weeks made me totally irascible.

Then there’s something about grieving the loss of a fully-functioning child where a church can either alleviate grief or complicate it. In this case, my new-found church was a balm. Still I wasn’t ready to reach out for help until recently. I have understood for a while that the government was not going to help me get into Together We Grow. In fact, the system had changed in the last few years to exclude children like mine from getting help with almost anything, especially day care. I have heard, “She has fallen through the cracks of the system,” so many times in the last few months by so many sympathetic people who work within the system itself. It got to where we would get evaluated by a new program and immediately start to wonder what stupid technicality they would use to kick us out. (Note about her muscle clinic on Wednesday: It turns out she needs to be one of forty muscle conditions to qualify to stay in the clinic. We’re hoping amyoplasia qualifies her.) So when I finally decided that I cannot do this anymore, and I was out of ideas, I barely had to reach out before people responded.

I wrote a note about needing help with Laelia’s stretches in the afternoons (one of the biggest things I was counting on Together We Grow to provide), and put my note in the offering plate at church. A few days later the church secretary/office admin, also known as Chelsea, responded. Not by saying she’d pray for me, but by coming over three days last week and doing Laelia’s stretches and PT in the afternoons!

Also last week I emailed Phyllis from church about possibly being Laelia’s respite provider, since she had experience as a social worker and I thought her kids were adorable. The next thing I know she’s applying to the YMCA and putting Laelia’s name as the recipient.

Then two weeks ago (I’m not going in any order here), I met with Rana who invited me to a workout/Bible study on Wednesdays with daycare provided. Brenda (the same as mentioned above) came over to my apartment to learn Laelie’s stretches so she could do them while I’m working out!

So last Wednesday I worked out for the first time in a billion years. :) I felt relaxed knowing my baby was getting her stretches, and I wasn’t going to have to do them! When I went to pick her up, Brenda told me that when Laelie started to cry (and remember she cries 100% of the time with stretches), all of Lisa’s kids who were also in the nursery started to sing to her to make her feel better. Awwww! They also walked up to her and said, “Don’t worry baby, we love you.” It’s kids like those who are going to be sympathetic to people with differences. And kids like those that will make kids like mine not feel so isolated.

Then a few days ago, Chuck and David came over (bringing Chinese food) and installed another AC unit in our living room that’s removeable so our apartment manager won’t fuss.

Then today Lisa gave us a cool toy to help Laelie with her PT. (Lisa has been amazing ever since Laelia was born.) And Michele gave us a whole bag of baby oatmeal (I will never have to buy baby oatmeal as long as I live) since Lacy is mastering solids (what Charley calls “people food”) :) much faster than Laelie. She also gave us some toy instraments to help with Laelia’s OT. And also several other people asked about the baby.

I’m trying to remember the conversations Charley and I had about moving back to Placerville, since we at least had my family up there and really only a few friends down here. Now it’s like we have this amazing support group and I don’t know what we’d do without them.  

I’m so happy my pregnancy hormones (notice I put all blame on the pregnancy) didn’t scare anyone away.        

This is the picture I took out of the dictionary right next to the definition of precocious.

Have you ever wondered what it looks like to type up a blog? Well here’s the picture. Laelia is happily tummy-down in my lap the whole time. When she was little I could get away with holding her upright, but now she just stares at the screen so down she goes. Over her legs and behind her head is the keyboard, and if I bend over it too long, she will try to bite my tummy with that one tooth of hers.

Laelia got some new KAFOs this week. I call them her “legs.” Come on, honey, time to put on your legs! Her daddy took her to Scope and they affixed a Dennis-Brown bar on there too. Now her knees and feet are taken care of. Finally! The only problem is that it falls off (slips up), and pinches her thighs even when they’re on correctly. Nevertheless, it’s a step in the right direction.

They have been slipping a lot making me constantly mess with them. When they do slip off completely, I am forced to put on her old shoes or watch her feet get worse. The last picture of her foot I took before we got these KAFOs was this one:

I hate this!!!

That’s her foot bloody with skin peeling off. They are also bruised. It makes me crazy. Now I have to wait until Charley gets back from Idaho to call up Scope and make them fix stuff. Because I’m *cough* fired and stuff.

In other news, it’s becoming clear that Laelia is missing biceps and deltoids. So Jill, Laelie’s OT, referred us to a muscle clinic through Children’s to be sure. I called the number and got the coordinator’s voice mail. I explained that Laelie had amyoplasia (a-no, myo-muscle, plasia-growth) and could she be seen by the muscle clinic people? Well I got two calls on my voice mail at work. One after the other and from the same department. The first one was from the lady who was the official coordinator and who was going on vacation. Her message was not very positive. She couldn’t get me in the clinic, but here were some numbers to try, and this whole thing would be a hassle, and I could call her back when she got back from vacation in mid June. Oh great. But right when I was getting discouraged the very next voice mail was from another lady in the same department who was handling the first lady’s job while she was on vacation. OF COURSE the muscle clinic could see me. My baby had amyoplasia? Well then we can get in as soon as the 11th! Is there anything else she could do for me? Etc. Etc. What perfect timing! I can see God manipulating events here.

Now I’m praying for a cure. I know lots of people in my situation have prayed for cures, so I guess add me to the list. I think I had a faith-related question answered for me recently. I haven’t been praying for my daughter because I had lost my faith, especially in that area. I found out that a high percentage of people believe in medical miracles, but my question was, “Why doesn’t God heal amputees?” It’s an old, and Googleable question. Now that I’ve dusted off my Christianity and shoved it back on, I’ve thought more about this question. I really think God works within the laws of nature that he has set up. He very rarely bends those laws, and even then, only under very specific conditions. In general, God sets up these laws and helps us through the natural consequences of these laws. For instance, he’s not, as a general rule, going to change gravity to help you avoid getting hit by a bus. (Yes, I did get that example from Ron.) But he may steady the driver’s hands or use your own adrenaline to help you jump out of the way. Plus, as I can see my grandma Lucy saying, we wouldn’t want him screwing with gravity every time some dummy jumped in the road anyway! God just seems to be doing a lot of healing through medicine or technology or working within the body’s own amazing system. This explains why someone may be cured of cancer, and prayer can be an integral part of that healing process. But with amputees, I don’t see his motivation for healing people there. It would be changing drastic laws put in place in the universe. And what grandiose purpose would it serve? My daughter is not an amputee, but she is definitely missing some nerve endings and muscles. If my daughter was fully healed right now I might think she was misdiagnosed to begin with. (Wow, I just realized that.) So maybe God won’t heal her, but he may use this muscle clinic (and future technology) to maybe help my daughter someday lift her arms.

I know we can ask things of God and he will hear us, and do things for us if it’s within his plan or will, biblically speaking. People have told me that if I was mature in my faith, I would reach this point of wanting God’s will above my own. Which sounds great, but it means that if my daughter’s full recovery is not on the list of things God wills, then I should want his will to be done over her being whole. And when it comes down to it, I don’t want that. I want my daughter to be cured. I guess my faith will continue to be rudimentary then. It would take Jesus-like faith to do something like that–pray for the Father’s will to be done instead of walking away from faith and living a normal, torture-free life!  That’s something beyond me. (Although I bet his mother prayed like I do.) I just hope people with more faith than me continue to pray for a cure for kids like mine.

Faith: My faith has changed. I obviously didn’t stop believing in God all together as is evidenced by my anger with him. I never stopped believing that God was strong, powerful and mind boggling–that he created my daughter (in a manner of speaking) and knew she would have AMC. But I stopped believing he cared. After these days of one bad event after another… Watching Laelia attempt to do something she can’t… Stares of strangers… Uncaring professionals… I wonder if God is all that loving or kind. So I tend to nod when people talk of God as being just or pure or powerful, but emotionally tune out any “eye on the sparrow” talk. And just as logic and emotion can be at odds, emotion and truth can be at odds. But watching God’s behavior affects what I think about his character. Maybe recently I should say his lack of behavior. Although that’s not entirely true. Sometimes I feel he’s there for me and sometimes he’s not. His whim I suppose. Or my filter. I don’t know how to succinctly explain what I mean. All I know is that my daughter is a joy and all the things I want, I want for her. If God cares for her, why not help her? I mean Jesus didn’t have AMC! .. Of course, as I was reminded recently, humanity was a bigger disability.

Hope: I had no idea how completely hope drives out depression. I also had no idea how much power I had given doctors to crush that hope. After Friday’s doctor’s visit, I gave up on my daughter’s future for 10 solid hours. It was scary. I took the doctor’s view of having a stump with four dead branches for a daughter–a dark thought for sure. Hope came back after one email from another mom. (Don’t believe them!) A few days later two moms, Sue and Ginny, from a church I used to attend in northern California, GCBC, got on a plane just to be with our family and gave me more hope. (Don’t limit her!) I realized I need this hope more than oxygen. It’s the only thing that keeps me going. 

Poo: I love my daughter and I adore my husband. I don’t know what I would do without either one of them. It’s hard to believe God is uncaring when I see my husband’s goodness or my daughter’s beauty. Right now I watch Laelie grin through a diaper change and remember the first weeks when those were painful for her because of bent and twisted legs and feet. Sometimes I think the greatest of these joys is being able to poo. :)