Archive for the 'prayer' Category

faith healing (because again?! people!)

Friday, May 30th, 2014

Trigger warning: Sarcasm, faith healing, more sarcasm

*ahem*

There’s a reason we don’t pray for someone’s amputated leg to regrow. Even those with the gift of healing usually draw the line there. I have never seen a group of amputees line up outside a faith healing tent and come out with arms and legs. I’ve known three faith healers (family friend, friend of friend, family member) and all three have never even offered to regrow people’s limbs. (Rude!) We humans reason (correctly) that there’s a natural order to things. Could God regrow limbs? Sure. So why don’t we regrow them through faith? Because we are not lizards (yet).

So why do people insist that God can regrow my daughter’s muscles that she literally does not have? Literally! The anterior horn cells in lots of places were disrupted during fetal development and those body parts did. not. form. And (I’m sad I have to even make this point *sigh*) that fact does not change just because you can’t see it!! (Science!)

If I was born without a liver or foot or brain could prayer create one out of thin air for me? Does God bend the laws of physics in that way any other time? (Imagine playing Monopoly and then the creator of Monopoly is all, “Randomly all properties will now be used as tarot cards. Oh you have Park Place? That means you’ll be unlucky in love. But hey you’re winning! How? No clue!”) Because that’s what you’re saying. Just realize that. That right there. You’re saying that!

If you pray, pray normal things. (Talking to unfathomable cosmic creator of all things with your mind = normal!) Okay, like I pray she works hard in physical therapy and that her goals are worked toward with patience and with grace. I pray she learns how to navigate the world with the incredible body she does have! (Because she’s different, not tragic.) I pray for wisdom for us as we make medical decisions on her behalf. I pray for technology to catch up to need. (But I’ve given up on insurance catching up to need a long time ago.) I pray for her to have this light that shines in the dark spots of our culture. I pray she grows up to help the poor and fight injustice. And today I prayed for the poor unaware bully who got her lip! (Note to bullies, don’t call my daughter “bossy.” It somehow gives her cosmic authority to take charge of the correction of your mistake, known to you as “bossing you more.”)

Heck I can’t tell you what to pray, go nuts! Pray she grows wings! Because wings!!!!

Just, I don’t know, please see arthrogryposis logically and don’t get stinking mad at us or God when the laws of physics don’t go topsy turvy at your prayer missives. My kids will do amazing things and “prove doctors wrong” but it will likely happen within the realm of reality and follow the rules of the universe.

PS: My son is also missing muscle, but not as notably so he has received considerably less offers of miraculous healings. Don’t worry, he’s not feeling left out. Unless you start offering my family faith healings *and* cookies. Which is only polite.

PPS: But but but! What about Jesus and the dude’s ear or part of St. Augustine’s leg or stories like that? Most faith traditions have miracles or healings that held some purpose. I think we could *at least* agree these are exceptions to the rule.  And I am referring to modern, has-access-to-Internet faith healers in this post.

PPPS: Chocolate chip cookies with chunks of brownies in them. No store bought crap.

Video of Laelia

Monday, September 16th, 2013

I created this video of Laelia learning to walk as a present for her 6th birthday. I used all of the videos I had of her where she is moving her lower limbs. And let me just say that there were not many videos of her even moving her lower half for the whole first year there, despite daily physical therapy and stretching. Wow, it’s amazing how far she’s come and how hard she worked. Laelia’s birthday party isn’t for a couple of weeks yet, but tonight she caught me editing, saw it was videos of her and then squealed and demanded to see it. (By the way this is my first video editing job EVER and it was really hard and I cussed a lot and now I hate technology.) So the cat’s out of the bag and I’m just going to make it public.

Enjoy.

Pray

Saturday, March 23rd, 2013

LandRblogStPDay - Copy - Copy

Guys my heart is breaking! Please, if you pray, please pray. The orphanage my sister is adopting from is right outside Lubumbashi where rebel fighters have just attacked! The last time rebel fighters attacked (they attacked Goma), the militia killed all the women and children they could find… *after* savaging them. My nephew is in this city! Right now the orphanage itself is six miles outside the city and spared, but pray it stays out of harm’s way!

Now remember my sister is not adopting a child currently in the orphanage, but one of the next children to arrive there. So there’s a good possibility that my nephew is in Lubumbashi that is being attacked right now. That means that most likely my nephew is right now becoming orphaned and suffering abuse and trauma at the hands of the militia before being transferred to the orphanage. My sister’s heart is super heavy this morning.

Reminds me of something I read in the book 7 about Jen Hatmaker’s adopted daughter, Remy:

“During the first week of October, I suffered inexplicable sadness for our Ethiopian kids, yet unknown to us. I couldn’t quit crying. I couldn’t stop worrying. [...]

‘God is prompting you to pray for your children for some reason.’ [...]

So Brandon and I prayed desperately for our kids. Were they losing a parent? Were they suffering? Were they tender and lonely? [...]

[Three weeks later]

I went back to those dark days of prayer. It was the week she was brought to the orphanage. Shipped twelve hours north of her village, her people, everything she knew to a crowded orphanage with children and workers who spoke a different language, it must’ve been devastating. She must’ve felt so alone. At age five. Except Jesus never leaves His little ones, His most vulnerable. He was there in the scary van ride north. He was there in her confusion and fear. He was there as she was assigned a bed and communal clothes and had her beautiful head shaved. He was there that first heartbreaking night. And He made sure we were there in spirit, too.”  (pages 198-201)

UPDATE (from my sister): “Thank you to everyone who prayed this morning and this afternoon. The news reports no more fighting in Lubumbashi, as the militia group was stopped by the local army and peacekeeper forces. Please continue to pray for the people of DRC, our child, the orphanage owners/workers, and our future trip there. Only God can provide safety and peace in such a wartorn area.”

The hard times and the good

Tuesday, September 18th, 2012

Peek-a-boo!

Today was the day I was going to write about my son’s one month home. He’s been with us one month. I have so many pictures of this trouble-maker, you have no idea. And videos. And accomplishments. And joy. And love. And a high number of just his finger. (Stop pointing at the camera, my love, and keep doing the cute thing you were doing. I give up. Cameras are too cool and must be pointed at.)

But life is happening and it’s too much to find the time to write. I will share–believe me these picture demand to be shared–but not until next week. I hope next week. After we’re back home from medical travels. (Oh I’m not looking forward to having Mr.  Trauma  back on a plane. God help us.)

You see today is hard. Today my husband is sick. Today we missed the school bus. Today Roland has an appointment to get casts and we’re going to the appointment but refusing the casts… again… because our son is not ready. Tomorrow we fly to Philadelphia and Delaware for medical treatment for both kids. We arrive so late that we can’t get into the three Ronald McDonald Houses and must get a hotel. Today I called the rental car company and found out our reservation wasn’t put in. Today I feel defeated, busy and stressed.

But where my focus really is, even if it shouldn’t be, is that today is the last day of work for me. I had to leave my career. It was work-from-home, but my position required coming into the office for some much-needed meetings, and I just can’t. I don’t know when I could as my little one learns he is safe and that we won’t leave him. My family demands so much right now. I was pulling all-nighters to get my work done. Leaving my job to care for my family has made me feel like the biggest quitter ever. Six years I put into my company. Six years. I won’t even have more free time if I do this, just a couple more hours sleep a night… when Roland lets me. Oh and I’m good at what I do. I get a sense of self from what I do. A sense of pride. And we rely on my income. I don’t know what we’re going to do, although I know we have a few months to figure it out. Today is hard. Not just because I have a ton of work to do for my company before I leave everything in other’s hands, but because this was my life. The life I liked.

“If this life I lose I will follow you.”

This life is a blip. A blip. One tiny speck on our timeline of eternity. In that perspective it’s easy to lose this life to gain so much more. Is my son worth it? Damn right he is. Damn right.

(Yep cussing on the blog. First clue that I’m overly emotional.)

And I haven’t packed for Philly yet. In fact (shocker) I haven’t unpacked from Ukraine yet. Heh.

So instead of writing about all the joys of the first month, I’m going to leave you with some of the beauty in the pain.

I’ve talked a lot about the first three days of non-stop, mindless screaming from our new little son. (It helps that I’ve spoken with another family who adopted out of his orphanage and some of my  suspicions  were supported.) That was hard. But by day four, I don’t know, I was filled with love for this screamer. It could have been the wonderful prescription medication I was on, but something was different that day. We had just settled into the uncomfortable knowledge that this could be our life now. It could be our life for months or years. And we needed to function despite that. It’s scary when after three days you have no light at the end of the tunnel. Three days is long when your child is screaming at top volume, but it’s longer when you don’t know if it’s just three days or a lifetime.

Want to see a glimpse of day four? Turn your volume down and click here. By day four I loved this little boy. By day four his screams were not high-pitched anymore, and he seemed to be asking for comfort instead of reacting to an unseen terror. I held him on the couch after not showering or brushing my hair or teeth for three days. I held him and whispered love to him. I was able to smile–a small miracle. My husband took a video. We wanted to capture daily life.

Then, and I cry as I remember this, then this happened: This. For the first time ever he came back to us. Back out of the world he was in. I can’t describe how for three days his eyes were just blank, unfocused. Then he started to make eye contact. Then he didn’t thrash when I touched his face. He came back. He came back.

And he made kissy faces. “More kisses mom. Yep right there on my forehead. Perfect.”

When I wrote the blog post about (not) living happily ever after, I was being very honest. I thought maybe people would not want to adopt after reading how we were adjusting. Then THREE people emailed me after that and said that they read the post and were definitely going to adopt. One started the process. Another picked an agency. A third is definitely, seriously considering it a few years down the road. Wow. Wow. Really guys? After I post about screaming? Welcome my fellow crazies! Haha!

They get it; it’s about people.

Now do me a favor and click here. Read  this story and then you can tell me that we’re all crazy. (We won’t argue.) Go ahead. I read that link and cried my eyes out. It speaks truth to me. It lets me know I’m not a freak show for wanting to go back and get another one, or support others getting theirs even though I know it’s so hard. Just read it. (Despite the amazing support we’ve received, we still have the same crowd mentioned in the story.) Do me a favor and just read it. I didn’t write it, but we sure lived it.

See you in a week, friends. Hold onto this promise from me, incredible joyful stories are coming. Just give us one more week or so of hard. Pray for us.

Recovery

Thursday, February 23rd, 2012

Standing kid!

Happy kid!

Sorry I have not posted sooner. We’ve been busy bees over here lately (including dealing with an outbreak of bees in our living room). Laelia’s recovery has gone a bit better than I expected mostly because I expected the worst. It’s been three weeks since knee surgery and she’s still a bit tender. Laelia’s  been getting physical therapy every day (at home by me) and doing  hundreds of steps a day using her crutches. In order to do that I had to redo her heels. She’s straighter now, and that has made her slight leg difference more noticeable. Three attempts later I think we finally found a good height for both heels using wooden dominoes and duct tape. Of course this will all change again in a couple weeks when she gets her leg braces.

 

On March 5th we’ll be in Philly getting casts  off and putting  KAFOs on. She’ll have to wear the KAFOs (leg braces) 24/7, even to bed. That will be hard, but we’ll get through it.

Laelia got a card in the mail the other day from all her Cubbie friends at Cubbie club. So cute! She also got cards from her school friends. Laelia was approved to go back to preschool, but only for two hours a day (and no bus service there).  Her friends had missed her! It was so adorable!

Our two biggest issues during Laelia’s recovery were hair and eating. Okay so physical therapy and pain management are the real two issues, but those were expected. Eating and hair were  just hard for no reason.  She hated taking her medicine. I hid it in everything: yogurt, ice cream, smoothies, pudding, apple sauce, etc. It had a strawberry flavor already so that limited the things I hid it in. Giving it to her straight made her throw up (a gag reflex), and putting it in her food just made eating suck.  Laelia was too darn smart about it too. She would finally eat only the yogurts I brought her so she was eating like five yogurts a day. After a week (we gave her meds for six days)  she said, “I knew the medicine was in the yogurt, Mama.” Then she rattled off  every food item I’d ever hidden medicine in. I asked her if she knew because she could taste it. She told me, “I  didn’t taste it, but I knew because of your face. And you made me eat every bite.” But the reason she never confirmed it with me was because she was afraid if she knew it was in there for sure she’d have a gag reflex and  throw up. Smart kid.

With her hair we just started spending money on really good conditioner and calling it a medical expense on our budget. It took 40 minutes to get the knots out everyday. The reason is that she would sweat because of the casts and being confined to a bed so much. Then she would roll back and forth on her head, for comfort and some out of boredom. It just made her hair a tangled, knotted mess that stuck straight up. I had regular conditioner and special conditioner and spray/leave-in conditioner. We had to take the microwave off the kitchen  counter to fit our daughter on there length-wise and then wash her hair in the sink so her casts wouldn’t get wet. Here’s some before and after shots.

That last picture there (post beauty treatment) is  Laelia showing Uncle Phong her untangled hair. Uncle Phong is engaged to Laelia’s Aunt Linda, although in preparation for their engagement and eventual wedding we’ve had Laelia calling him “uncle” for probably longer (and earlier) than anyone was comfortable with. Hehe.  :)  (Click here to see the website my husband did for them to celebrate their engagement. I feel that link should come with a warning of sorts. Eh you’re on your own.) Laelia is going to be the flower girl in their wedding! She’s practicing walking now, and soon we’ll add throwing flower pedals while walking to her physical therapy regimen. ;)

And for those of you who were praying she’d get over her cough and be able to do surgery, we can finally share one of the reasons the timing was so important to us. My husband is donating his kidney to a person who really needs it and may die without it. If Laelia’s surgery was postponed then Charley’s surgery would have to also be postponed. Obviously that wouldn’t have been a good thing. But everything worked out. So here’s our new timeline for life events since Laelia’s surgery worked out.

New timeline:

March 4th – Laelia and I fly to Philly

March 5th – We get her casts removed and her KAFOs.

March 6th – Physical therapy in Philly and KAFO adjustments.

March 7th – Fly home from Philly.

March 12th – Doctor appointment for Charley.

March 20th – Kidney removal surgery for Charley.

March 20th until around April 20th (or 30th) –  Charley’s recovery.

Early May – We hope to travel to adopt our son.

Early Summer – We bring our son home.

The cough that prayer cured.

Monday, February 6th, 2012

Future Doctor

We are back from Philadelphia with a princess in full leg casts. For those of you following  the story, our daughter had surgery on both knees to try and straighten them. (Because of her arthrogryposis her knees are stuck in a bent position.)  They did some releases in the back of her knees to straighten them as much as the contractures would allow, then they inserted eight plates into the fronts of her knees to stop them from growing. That way when the back of her knees grow, but the front of her knees don’t, it will straighten the knees over time.

As most of you already  know we almost didn’t have surgery last Wednesday. In fact we were ready to go home every day we were there. And people were praying. Lots of people. And everything worked out. But it worked out in this miraculous way.

When I was a little girl I read this boring  biography of Hudson Taylor. (Note:  NOT boring if you’re  NOT  ten years old and it’s NOT required reading.) He’s the guy  who prayed a lot and God provided, often last second or in a way that would make a good movie.  Our last week seemed like that.

For reasons we cannot share yet, we needed this surgey to happen now. We had no idea what God was doing by delaying it. From all we knew it couldn’t be delayed or a lot of things would go wrong. So all we could do was pray this was happening for some great reason half the time and  beg the surgery would  just  please work out the other half of the time. You see our daughter had a cough.

Thursday night I was lifting Laelia by her stomach and she coughed. But it wasn’t just one cough. It was a coughing trip. I thought I had squeezed the wind out of her or something. Then she finally said, “I just coughed like So-and-so at school!” Needless to say I yanked Laelia out of school the next day, cancelled the bus and mailed the form I was suppose to send with her that day. She had a very slight, occasional yet persistent cough all day.

Our good friends  have a  son who has the same condition as our daughter  and who also fly the same 3,000 miles to the same doctor in Philadelphia. He  had a cough once before surgery. He was fine and then the night before coughed just a couple times before surgery. That was all it took and his family was sent home to California. One slight cough and surgery was cancelled. Now Laelia had one slight cough. This was bad.

Saturday morning I called up Shriners to break the coughing news. Turns out I needed to run this by the anesthesiologist but  they weren’t  in on the weekends. I talked to a few people, was transferred six times, and finally the on call/charge nurse said to come on over. 3,000 miles and three airplanes over. So we did. And we prayed.

Sunday morning rolled around and we boarded  three planes with  the coughing monster.  The weather had changed and we  had hoped it was just allergies. She never had a runny nose or watery eyes or upset stomach or fever or  sore throat or anything else. And she would be happy and hyper and fine and then once an hour double over and cough her head off. And it was a cough with a little something going on. Not a dry one. But still I’d forget about it until she’d do it!

Monday our appointment was at 2:00, but everything at the clinic ran late and  we didn’t end up seeing anyone for three hours. Three hours! Finally we saw the doctor, his fellow  and the nurses and told them in person about the cough. I guess no one I had spoken with on Saturday had passed the word along.  At first the surgery was cancelled, and we started  making alternative plans (that sucked). The nurse coordinator outright told us  Laelia would  not be getting surgery. It looked like Laelia and I would  have to live in Philly for several weeks at one point.  But they had to get the anesthesiologist involved for the final determination.  Being after hours (now almost 6:00 pm),  we had to come back the next day when he’d be around. So in other words, because of our late appointment we had one more night  for the cough to get better.

And it didn’t.

So Tuesday morning she woke up coughing this horrible cough. She saw the anesthesiologist with the cough and he had her cough several times while listening to her chest. She was borderline with no other symptoms and even though we could hear something in the cough, they couldn’t hear it when listening to her chest. He had to pass us along to the head anesthesiologist who would make the determination on whether or not we’d be having surgery. Right before we met with him she coughed this wet, awful cough.  We planned to  pack our bags  home that  afternoon and try to get flights back that evening.

Then  we met with the head honcho anesthesiologist.  He asked her to cough. She didn’t want to. He asked her again. She coughed for him. And it was this beautiful dry cough. Then another beautiful, dry cough at his request. Then another!  She didn’t cough again through our entire appointment with him, including a trip to the PICU for surgery instructions. I thought she was cured! It was a miracle!

As soon as  we left the hospital she  started back up coughing again. It was like everything she’d experienced for days was just put on hold until she could pick it back up again when  we left.  The same ugly cough was back! Surgery was scheduled for the next morning at 6:30 a.m. She  had one more night  to stop coughing or it would be cancelled. But at least we were no longer going home that night. We held out hope it would just go away. Maybe she would stop coughing!

Of course she kept coughing. She coughed all night. I couldn’t give her  allergy meds  since we may have surgery the next morning. I just waited it out with her and held her hand. I didn’t even know if I should prep her for surgery and scare her needlessly.

I had a very small panic attack that night which defied logic because I was ready to go home and at peace  with surgery being cancelled. My panic  was obviously  not listening to how rational and peaceful I was. Charley noticed I wasn’t breathing and his reaction to that was to hug/smother me. I’m lucky  to be  alive. :)

(Note: I’ve never had a panic attack in my entire life. I think this was brought on by being woken up in the middle of a nightmare about not breathing and then my heart was already racing so fast it was just downhill from there.)

We arrived at the hospital  at 6:30  sharp (3:30 a.m. California time) and she coughed in the waiting room. Once again I mentally packed my bags thinking we were going home.

Then she coughed up the elevator and through her dress change and during her vital checks. In fact she coughed up until the anesthesiologist entered the room. Then she was fine, as if she’d never had a cough in her life. And it was his decision to proceed with surgery after checking her chest for the tenth time.

It was like something out of a movie. If I had reached the right person who told me to stay home when I called Saturday night there would be no surgery. If our appointment had not been three hours late and I’d met with someone who listened to that awful cough on Monday there would have been no surgery. If she had coughed during our Tuesday appointment with the head anesthesiologist there would have been no surgery. If she had coughed during OR prep for the anesthesiologist’s final check then no surgery.  When it really mattered, she became a perfectly healthy kid. But the rest of the time she was coughing!

Surgery went well. She opted not to have the knock-out meds and waved goodbye with such bravery  as they wheeled her  into the OR. She admitted she got scared and cried when they put the mask on her face, but overall she  was very good.

Back in the waiting room  I let out a breath I’d been  holding for six days. I was relieved for a brief moment before it hit me that my daughter was in surgery. But five hours later and she was out. Her epidural had worked, her cough had cleared and they had gotten a few degrees of range in her knees! In the coming two years the plates  in her knees will hopefully  get her even straighter!

No cough!

Epidural working!

One of the first things Laelia said after waking up from surgery was, “The next one to have surgery will be my brother. I’m gonna hold his hand and make sure he’s alright. I’m going to give him his medicine too!” (She seemed a little thrilled with that thought so I gave her a look. She quickly amended,) “Because I love him.” :) Someone is happy that this is her last big surgery for a while. :)

The first day after surgery everything went right that could go right. Everything. Then the day after that things went wrong. Laelia’s epidural had slipped a bit. The doctor recommended they pull it out and see how she did. We’ve made some stupid decisions before, but this one had two hard  days of consequences to it. She was in constant pain. And they threw every medicine they could think of at her. She had IVs in both hands and was on morphine, Valium, Tylenol, Codeine, something for the itching, something new for the panicking and something strong to help her sleep. As the first hard day progressed and they could not get on top of the pain they finally started doubling all doses.  She went 35 hours without sleep because of pain.  She made the nurse cry. She made us cry.  She was darn pitiful. Finally, since she was eating, drinking and pooping, I asked them to  discharge her and we would be right  down the road and come back if there were any problems. We took her back to the  Ronald McDonald House. Just being outside the hospital worked wonders. She got her first real sleep and so did we. Four solid hours. She woke up a new girl!

For as hard as her recovery has been, it is not as hard as the surgery she had  a year and a half ago when her epidural failed. That was much harder.

Sunday night we took two long plane rides home. We’d only been home  about twenty minutes before she threw up all the contents of her stomach, including her pain meds. She had a painful, sleepless night last night and a  painful morning all morning. I finally snuck enough pain meds into her food to get her resting again this afternoon. She is refusing pain meds and it’s hard to get them into her!  It’s my four year old verses my sanity! She  cries and cries that her legs hurt, but when I offer her pain meds she won’t take them and spits them out. Also they have me doing physical therapy with her already (if you can imagine this please say a prayer for me and for her) so just add that to the torture. All and all it’s been a hard week.

But we knew it would be  bad going into it. What we didn’t expect was any of the good times. It was downright thrilling to have to make the pediatric crutches Laelia uses longer because she  had gained a couple of inches overnight! Laelia was also praised for being the sweetest little thing in the PICU. And she was so diabolical even through her pain. She had a speech about what hurt and what she wanted done about it that she threw at anyone entering the room–even the janitor!  She directed her menu like a queen. When she was transferred out of the PICU she had me first take her to every floor of the hospital on her way to her recovery room  so she could tell them all that  she had just had surgery in an attempt to get presents out of the Shriners staff who seem to always walk around carrying goodies. (If it weren’t for all the medical stuff this place would be Kid Heaven!) She walked out with a monkey from the OR, a bear from PICU, a doll from the therapy floor and a doggie from somewhere.  It is a privilege to be this little girl’s mommy.  She is a  joy!

Today Laelia stood up tall by herself with the help of crutches and her casts.  She looked at me and  asked through  gritted teeth, “Mama? Am I tall enough for the big  rides at Disneyland?”

That little player is determined to get a trip to Disneyland out of this thing too. :)