Laelia’s new legs, Mommy’s new faith

 

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.

 

5 Responses to “Laelia’s new legs, Mommy’s new faith”

  1. Laelia’s new legs, Mommy’s new faith says:

    [...] unknown wrote an interesting post today onHere’s a quick excerptI 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, … [...]

  2. Robin Clark says:

    Hooray for the muscle clinic! A lady from Foothills Methodist recently emailed me to let you know about going to Children’s (as you will be) and also suggested Shriner’s.

    As far as faith and God’s will is concerned: Your daughter’s wholeness is God’s concern. You show faith by asking him for it and expecting his blessings. Praise God.

    Robin Clark

  3. Bethany Bassett says:

    I really liked reading your thoughts on this. When I was pregnant with Natalie and we found out she had gastroschisis (a hole in her abdominal wall causing her intestines to develop outside her body), a lot of people told us they were praying for God to heal her. Some relatives actually called us from a prayer meeting to say that God had already healed her before she was born, and we just had to have faith that it was done. It was so strange for us to deal with, because, like you said, God doesn’t often manipulate the rules of the universe. In our case, he used a team of doctors to put our baby girl back together, and because of all the prayers, Natalie recovered from surgery in record time. I think you will absolutely see some amazing results over the years from medicine and technology and your own determination, but maybe God’s greatest gift to you all will be the emotional and mental strength to get through every day. (Thinking of you guys, all the time, and praying as best I know how…)

  4. Jody Piper says:

    How interesting…I googled a phrase “Godworks plasia” because I had a vivid dream about that phrase…and I teach Human Anatomy and Physiology so I actually know what plasia means and what amyoplasia is. To make a long story short, I googled the phrase and got your blog with the phrase about “…God working within the natural laws of nature,..but still able to do miracles through medicine and technology” and had to read your posts. Your daughter is adorable and your statement resonates with me, who as a teacher of biological sciences and a Christian, often struggles with how to explain my beliefs in both science and in God. I too think of God working through medicine and technology and truly believe he blessed my husband and I with twins through in vitro fertilization after we struggled with infertility and prayed for children for 10 years. Thank you for your message and maybe, as one of my students pointed out, maybe ‘God Works through growth or development’ and maybe others will grow or develop their faith through your blog! Thanks again and I will include your daughter in my prayers. May God bless you and your family.

  5. admin says:

    Thanks for all these wonderful comments! I just wanted to share this link to a blog written almost a year in the future.

    http://www.laeliasky.com/2009/04/17/laelia-adorable-rambunctious-independent/

    It shows how God did work in our lives. He used science (gadgets to help her feed herself or get a drink) and he used people and he helped me through my grief. (I re-read this blog and remember trying to be logical as my heart felt like it was being ripped from my chest.) My prayers have since changed–now that I’m no longer desperate for him to change all his natural laws by magically growing muscle that never developed in my daughter just to stop my hurting. Now I see her as a person and not a disability. And that change means the world to me.

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