Laelia Sky Wesley

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

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

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

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

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

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. :)  

So my arm is killing me and I went to urgent care where they gave me muscle relaxers and said I had “muscle problems.” I argued, but the doctor gave me the you’re-an-idiot look like I was a pansy. She handed me a booklet called Neck Owners Manuel and sent me home. Okay. Then I went to a *real* doctor who was amazed I could sleep at night and he diagnosed me with acute tendinitis and bursitis. I got the most painful cortisone shot of my life (where they move it around under the skin… okay I *was* a pansy for that), but my arm and thumb are still asleep–been asleep for five days and four hours.

I’m not allowed to hold my child or lean over her. So Wednesday Laelia’s grandma, Christina, flew down here on the next plane out. I called my dad to say I desperately needed help and couldn’t move then his wife shows up in San Diego about five hours later!   

I called the breastfeeding hotline and just got the go ahead to breastfeed again… only now Lays wants her milk in a bottle. The formula we used while I was on the muscle relaxer made the baby’s stomach really upset. She threw up a ton all over her daddy and fussed all day long while making noises in her diaper.

Actually I got sick as well with bad diarrhea. So between baby and me, we were pretty fussy.

I also have missed work this whole week and feel worthless.

So bad day. But it got worse.

We switched orthopedic doctors today (Friday). This new one also does not believe Laelia will walk either, but actually explained the physicality behind that belief. Whatever went wrong inside me, made it so that her muscles didn’t grow normally. The doctor said her AMC is like Polio, we don’t have a cure and don’t understand why she doesn’t work right. So even if she were able to be straightened out, she doesn’t have the muscle to walk. Even if we did a muscle transplant, the muscle wouldn’t work. Even if we could get her to stand, she would not be able to do so once she got to be around 60lbs since she won’t be able to hold up her own weight and her muscles will not grow with her. She also does not have the arm strength to use a walker or wheelchair. She’s not quadriplegic since she can twitch fingers and slightly bend elbows. Once again we find ourselves crying out to God and stunned with grief at the thought of a little girl who won’t dance on her wedding day or who can’t go to the bathroom without assistance. 
 
I guess our other doctor knew this but just didn’t want to break the news? Our new doctor actually went and got Laelie’s x-rays out and explained them to us. Based on the x-rays, she will need major surgery very soon on her feet. But I’m just not up for that. I liked my pseudo-hope and now I feel like it’s gone. Like it says in Proverbs 13:12, “Hope deferred makes the heart sick.”

I got an email from another AMC kid’s mom. It was titled, “Don’t believe them!” Her daughter does a lot more than doctors thought she could. I told her that meant a lot, but I wish one bloody doctor would tell me that! I told her, “I used to be so happy with every little gain she made, but now I’m depressed because so many doctors have stretched her life before my eyes and what I see is a power wheelchair and help going to the bathroom. I want to hope again and I want my joy back.”  

Back at the ranch…

Blissfully unaware of what was going on around her, Laelia discovered that her voice had an upper register last night (Thursday). During the depressing yet informative doctor’s appointment this morning, she made lots of high pitched meowing noises. We were discussing heavy, stinging facts of her condition and the whole time Miss Noisy Pants made every sound in the book.

Mad like insane. It’s insane to have a little girl with nerve endings in terrible pain located in limbs she CAN’T EVEN USE! Why does God hate my baby girl? This is the worst pain she’s ever been in! Doctors have told me everything from, “Give it a week, then we’ll know if it’s really hurting her,” to “I think she just wants you to pick her up.” Argg! I’m worried that I’m giving her too much Motrin. It shouldn’t be this way. How come all the stupid abusive people or drug addicts or polygamists get all these healthy children that are perfect and I have a paraplegic in terrible pain who can’t sleep or eat? How can a window washer fall 47 stories and be moving more arms and legs than my daughter can? And she only had one little in-the-womb accident no one knows the cause of! Although people look at me like I sat there punching my stomach all during my pregnancy, I didn’t even have so much as a fever! I’m so mad! She just screams. We’re so upset. I watch my husband cry out of the depth of despair. What terrible thing did we possibly do to deserve this? Some people have been so mean. The whole world is just screwed up. And during the worst pain of my daughter’s small life, I am throwing up with a fever and body aches and can’t lift my head let alone her little body into my arms. I hate these shoe braces! Why God? Why allow all this crap?

Charles here.

We got Laelia’s casts changed again today. My wife asked the doctor how far the knees could get straightened out. We hadn’t seen a ton of progress, and we were wondering if her legs would be straight enough for her to walk.

“Oh,” the doctor replied, “we haven’t been trying to straighten out her knees. We just need to anchor the casts there while we straighten out her club feet. The legs tend to stay in whatever position we move them to without a lot of flex room, and the question right now is whether she’s going to be spending most of her time on her feet or in a wheelchair. Right now I’m thinking that she’ll be wheelchair-bound, so her knees are at about the perfect bend to accommodate that. But we can straighten them out with surgery later if it looks like she’s ready to walk.”

Alexis and I both had understood from other sources that the general treatment for these kinds of legs was to get them totally straightened out, and that’s what we thought we had been doing. How did we miss this?

And is the doctor right? Is my daughter never going to be able to walk, even with braces or crutches?  She (the doctor) tossed off the comment so casually.My wife and I were both just blindsided by it.

I feel like I can’t give up on my daughter so easily without even giving her a chance to prove herself. If doctors can straighten the knees, then they can bend them again if necessary. I’ll do research, but it looks like we may need to prescribe a new course of action for our orthopedic doctor.

The doctor might be right for all I know; our daughter could be bound to a wheelchair for the rest of her life. But I can’t believe that–not yet, anyway. God, protect my daughter. I need to know that whatever happens to her happens because You allow it to happen, and not because You fell asleep at the wheel or didn’t love my daughter very much. Heal her, if You are willing.

Laelie got her casts Monday night. The next 24 hours were the predicted hell. Now we’re getting use to them a little more. I drew on them so I could tell which way her hands went. I didn’t realize that her arms curled in the wrong way until we had the casts. (Just one more difference, *sigh*.) Instead of resting at her sides with palms facing towards the body, they face away. Drawing little hands on the casts help us not to hurt her when positioning her.

After getting the casts she would wake up in the middle of a deep sleep to scream thinking we are doing PT on her, but it was just the constant pull of the casts. She cried for hours and then whimpered after she was exhausted. It wasn’t until Tuesday night that she started to act normally again.

I’ve been sick. This is my first time out of bed for any length of time in a couple days. We thought I had a breast infection, but it turned out to be a bruise that made breast feeding painful. The lactation consultant said to try massage and pumping and now the blockage is gone. I was also sick to my stomach for a long time. I just needed sleep, but baby was hungry and doesn’t take a bottle very well yet. We think she either had another growth spurt or she just needed comfort on Monday and Tuesday because she ate every hour… which was painful.

I miss holding her hand. We would hold hands and she would try to grip my finger or thumb evey time we breast fed. I miss it so much I cry.

When doing the casting the doctor and assistant just kept asking if we were sure this is what we wanted. I hated that. No, we’re not sure. We don’t know anything. The occupational therapist, who has studied arthrogryposis more than any other medical professional we know, said this was best. They didn’t use to do it this way, but saw better results with extreme cases. The doctor just kept saying how she had never casted all four limbs before and poor little baby. The assistant said he had done it once before, but not on a baby. They offered to just do one arm and not the other for no reason other than “poor baby with four limbs in casts.” Then they explained that she wouldn’t be able to move her arms if we did this. (Duh!) But she doesn’t move her arms anyway! Ever! Just her fingers. And it’s not like I don’t miss holding her hand! I didn’t choose this! I didn’t wake up one day and decide to be mean and put my daughter in four tons of plaster! We’re just trying to do what’s best.

After listening to all the input, I decided (at the last second) to only cast up to the elbows. The doctor casting her seemed happy about that. But now we have the possibility that these casts will slip down. Which would suck and we’d have to start over. I think I made the right choice since it is a little bit easier to get clothes on her since her elbows have a small passive range of motion. That said, she is still wearing clothes for kids four times older than she is in order to get them on her.

I just hope this works.

Before we even had the casts on them, a little boy at church asked me if her hands were broken. I didn’t know what to say, but someone else was there to field the question. Other kids were asking why she was that way. I have been thinking about it and have decided finally how I would respond. I would say that God didn’t make her this way. He made her perfect. She had an accident. Just like people have car accidents and need fixed by doctors. Only this accident happened when she was still in her mommy’s tummy. Now this accident was no surprise to God, but he allowed it. Now we’re trying to fix her, but she’ll never be like other kids. And that’s okay. Because being different is okay. And being different doesn’t mean you did anything wrong. That’s just the way it is.

Charles here.

So as Alexis mentioned, we are making some progress with getting Laelia some help. She still needs regular PT/OT appointments (pray!), but she has casts now, making her about three inches longer than she was before. It’s nice to see some progress.

I’ve been trying to do some physical therapy exercises with her uncasted joints each day, just trying to get them moving around within their range of motion, but I don’t really know anything about how hard I can pull, or how often to do it, or how many reps to do each time. Hopefully that information will come with future appointments.

I feel like I’ve been pretty good at being content throughout my life. Now that Laelia is born, I find myself not even wanting to pray for contentment. I know that I can’t spend my time living for some future day that may or may not come; I need to rejoice in the blessings of my daughter and my family right now. But praying for contentment feels so much like just giving up. What if God actually gives me contentment, instead of changing things? So instead I’m praying to God that I would desire contentment–and in the meantime, can’t He just fix everything right now?

My mood is definitely improving. I wondered about sharing this next part, but if I can share about my depression I can certainly share what’s going on in my spiritual life. It seems when people go through these major life changes they seem to then “find religion.” It’s comforting. It’s understandable. It’s not me. Nevertheless, Charley’s been reading me the Bible at night as if pumping the words into me will make the depression magically disappear. He’s definitely the only one that would get away with that. He was reading me Luke 18 where requests failed to be made to God and Jesus asked, “When the Son of Man comes, will He really find faith on the earth?” When Charley read it, I said, “No,” without realizing I even felt that way. My prayers just seemed to be bouncing off the ceiling because I had no faith that God would answer them. I studied the Bible academically in college so I knew a lot of verses on prayer.

“Call to Me and I will answer you, and show you great and mighty things, which you do not know.” (Jeremiah 33:3)
“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” (Matthew 7:7)
“The effective, fervent prayer of a righteous man avails much.” (James 5:16)

But I forgot about the conditions of prayer. People don’t just get sports cars because they ask for them. So I researched those conditions put on prayer (in between feeding, burping, bouncing and diaper changes).

I have to have faith.

“If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; he is a double -minded man, unstable in all his ways.” (James 1:5-8)

I need to let God know my requests even though he already knows.

“Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God.” (Philippians 4:6)

I need to stop killing people. Okay…

“When you spread out your hands. I will hide My eyes from you: Even though you make many prayers, I will not hear. Your hands are full of blood.” (Isaiah 1:15)

I need to not be a hypocrite or terrible person.

“Woe to you , scribes and Pharisees, hypocrites! For you devour widows’ houses, and for a pretense make long prayers. Therefore you will receive greater condemnation.” (Matthew 23:14).

I need to mean it, not just stay a bunch of words.

“And when you pray, do not use vain repetitions as the heathen do. For they think that they will be heard for their many words. Therefore do not be like them. For your Father knows the things you have need of before you ask Him.” (Matthew 6:7-8)

And (the hard part) I need to pray for God’s will to be done no matter what my request. Meaning I need to want God’s will first and my wants second. Even if my wants are for my daughter. Because if my requests don’t align with a perfect plan I cannot see, then they would be bad for her.

“Father, if it is Your will, take this cup away from Me; nevertheless not My will, but Yours, be done.” (Luke 22:42)

“In this manner, therefore, pray: Our Father in heaven, Hallowed be Your name. Your kingdom come. your will be done on earth as it is in heaven.” (Matthew 6:9-10)

So I decided to have faith. I started praying that God would heal my daughter and started to believe that he would. Maybe not fully, or in the way I would want, but he will heal her to some extent. I think he wants her to have this condition and that it’s part of a plan. I think the whole situation sucks and have told him as much, but I’ll have faith anyway. Even though God knows I’ve been mad at him, he still gave me a lot of joy and hope and faith these last few days. So I’ve been feeling better.