30 Days of Nothing

My husband and I still need to talk about this (it's been a little crazy lately, what with the seizure, trip to the emergency department, and unplanned admission to the hospital this week), but I am thinking about taking part in an exercise in self-denial and contentment called "30 Days of Nothing." You can read more about it here, and why it's a great idea here.

I really like her observations about our sense of entitlement. I catch myself thinking that way all the time. Things like, "I've worked hard today, so I deserve to take it easy" or "Things have been really crazy so I need to splurge a little." But nowhere does "You deserve it" appear in Scripture, outside of discussion of judgment and hell.

Denying ourselves certainly doesn't make us holy -- I think convents, monasteries, and the priesthood scandals in the Catholic church prove that. However, the Bible does say, "If your eye causes you to stumble, gouge it out. And if your arm causes you to sin, cut it off." So sometimes, in areas where we find ourselves especially weak and unable to resist temptation, we need to engage in radical amputation. This month of purposefully choosing not to consume certain things sounds like a good idea for me.

Neither Party is Moral

Normally, if I respond to comments, I do so in the comments. But so many of you wrote that I decided to write a few thoughts here instead.

More than one of you protested that voting for Democrats is immoral. I have wrestled with the moral values stuff for years and have concluded that neither party is more or less moral than the other. It seems to me just as immoral to leave babies and children to suffer a living death or to actually die after they're born because their mothers have no social supports, live in poverty, use drugs, and beat them as it is to kill an unborn baby. It is just as immoral to commit adultery or purgery or use God's name in vain or covet your neighbor's possessions as it is to be a homosexual. And why is it that so many pro-lifers are pro-death when it comes to the death penalty? It is horrifying to read over and over of people who have been released from death row after more advanced science exonerates them.

Others point to the spending habits of Democrats. One line really jumped out at me in Heather's comment: "Obama would put us all in the poor-house to save third world countries." She did write that she is very unhappy with Republicans, so I do not know her position on the Iraq war. But most of the Republicans I know around here support that war, which has put us in the poor-house to save a third world country (something Obama voted against).

You can't have it both ways, justifying your own messianic campaign to save one country while vilifying others for their pet messianic projects! The Republicans, led by Bush, are the ones who led us into a war with Iraq that has cost us trillions of dollars that we don't have -- we and our children will be paying that back. I can't even comprehend that much money. How much good could we have done here at home by investing in schools, bridges, services for unwed mothers and the disabled? That doesn't even factor in the cost in human life -- in casualties, physical injuries, and mental anguish -- in our armed forces.

I read about the other smaller parties, and none of them are good fits for me. I do not believe that the Founding Fathers meant for us to take as literal unchanging truth the words of the Constitution. I believe they tried to write something with principles that could be applied to any age and situation, not with specific details and regimens and prescriptions to be used no matter what. So I cannot support the Constitution Party.

I am not Libertarian either. I believe that people are sinners, selfish, and greedy. By nature, they will always do the wrong thing. They will not take care of their poor, their sick, their disabled... on their own. Libertarian views assume goodness at the heart of man: that people will all automatically and without coercion fund their schools, parks, police, fire houses, charities, city services, armed forces, and more. I think this shows a fundamental misunderstanding of how people really are. We need authority to make us to do the good that needs to be done. We need government.

That leaves me with the main two parties again. I agree with many of you -- neither is a slam-dunk. Not even close. That is why I am still undecided about the presidential election. McCain's choice of vice-president will tell me a lot.

I am also reading the words of both candidates for president (The Audacity of Hope by Barak Obama and Unfinished Business: Afghanistan, the Middle East, and Beyond--Defusing the Dangers That Threaten America's Security by John McCain and Harlan Ullman. These are uncensored by journalists or tv editors or talk show hosts (all of whom have to make extreme statements to keep their ratings) -- no sound bites, no exaggeration or overstatement, no pulling out of context. I want to see for myself -- not taking someone else's word for it -- what their ideas and thought processes really are. I encourage you to do the same. THEN make your choice.

Why I Won't Vote Republican This Year

I wrote my Republican representative to the U.S. House of Representatives this morning. I asked for a meeting to discuss their opposition to the S-CHIP reauthorization and reform bill introduced last fall. And I wrote a letter of congratulations to Senator Joe Biden as he joins Barak Obama in a bid for the presidency. I am still undecided regarding the presidential election, though I lean heavily towards Obama/Biden. However, I am steadfastly Democrat in my home state, converted completely just this week after seeing what Republicans (who have been in power for several years now) have done to Medicaid and the waiver programs established to support parents like us who desire to care for children with disabilities in our homes (and not send them to live in institutions).

Below is part of the letter I wrote to the Obama/Biden campaign. Please consider asking your U.S. senators and representatives to support the reauthorization and reform of SCHIP.

I've grown increasingly dissatisfied with the GOP over the course of the last ten years.

What sealed the deal for me is the outrage being perpetrated on the disabled in our state. We have four children, two of whom have severe medical conditions. The oldest and the youngest were born with congenital heart defects and both have needed multiple heart surgeries (we're at 6 total between the two of them, with a 7th coming up next year). Our eldest, our daughter E___, suffered a brain injury during her first year and now is struggling to overcome severe cerebral palsy and a host of other complications. She is in the 3rd grade, has a great sense of humor, and continues to amaze and astound the doctors with what she overcomes.

We are very blessed to have great health insurance through my husband's employer, but even a good policy doesn't cover all of E___'s needs. She needs a touch-screen computer to speak, but that isn't considered medically necessary, so we had to find grants to cover the $7500 cost so that she can communicate with us. She needs a handicapped-accessible home, but insurance doesn't cover modifications to a home. Nor does it cover diapers since she has been unable to potty-train. Transporting her in a wheelchair requires a van with a ramp and tie-downs. We have a makeshift system that, cobbled together, cost $3500. We are trying to find a way to pay for a new van with a really good system for her, but the conversion alone is $23,000!

SCHIP funds are used in my state to help fund a waiver program which looks at each specific child's needs, without considering the family's income or insurance. E___ was awarded the smallest waiver about 4 years ago, which provided her with a Medicaid card and a few thousand dollars to make modifications to our home, vehicle, and pay for 5 hours a week of assistance in our home. As you can see by doing a little math, the money doesn't go far at all because the cost of everything is so high. Medicaid is also getting some bad press in [my state] for denying the claims of kids like E___who need wheelchairs and other medical equipment.

Republicans, as you know, have refused to reauthorize or increase the funding allotted to SCHIP, leaving children like my daughter trapped in their homes, trapped in equipment that is too small or no longer helps their bodies (and in some cases actually hurts them), and without safe transportation. I had thought that it was simply a lack of funds, but it turns out that the problem is MUCH more insidious.

E___ was just given the "Cadillac" of waivers, the ____ waiver, and because of her extensive needs, qualified for $119,000 of funding support per year. We were initially told that we could use that money to purchase a van and the conversion system we need for her, no questions asked. Now we are being told that we can use no more than $10,000 per year on equipment for the van (which, as I mentioned before, costs $23,000), and nothing for the van itself! The bureaucrats in [my state's capitol] have put all sorts of artificial limits on the use of this money, I can only assume so that they don't have to actually pay out! And when I add it up, these limits effectively puts about $50,000 into a virtual "no-man's-land" where it's labeled as E___'s waiver money but in reality is completely inaccessible to her!

I hope and pray that we can get sensible, thoughtful, reasonable people into our state and our nation's capitol to remedy this situation and provide real, tangible, makes-a-major-difference-in-the-quality-of-life help for children and adults like my daughter. People who are trapped inside bodies that don't work, but who have minds and spirits, hopes and dreams, just like ours. And who deserve the same opportunities and kindnesses that anyone else does.

Best wishes to you!

Joy

Once Again, Government Makes No Sense

As I have mentioned before, Elli is interested in potty-training, and is doing moderately well at it. So she really needs two different "diapers" for her -- Pull-ups for daytime so we can more easily get her on and off the toilet, and large very absorbant ones for nighttime. We have to give her a large amount of formula shortly before bedtime, so for now, staying dry all night will be a physical impossibility.

Because Elli has a Medicaid card, is over age 4, and has not so far been able to get out of diapers, we are able to get them paid for by Medicaid. This is a huge financial help, because the larger the child, the pricier the diaper because you get fewer in the package. Also, most people don't plan on paying for diapers after their children are 4 years old!

I called our local pharmacy yesterday to see if there was any way I could get her both types of diapers. The owner, Jane, got on the phone with me. She is a very nice lady who has worked with me to get Elli meds and supplies since Elli was born. She explained that, in theory, the answer is yes. I'm allowed to get 300 per month, and I usually use half that.

In practice, however, the answer is no. Medicaid only pays providers like her $0.46 per diaper. The problem is that prices have gone up, and she cannot buy them for less than $0.54 per diaper. So if she were to supply me with a case of pullups, she will actually lose about $10 per case.

As she put it, "I'll supply them at cost -- I'm a good sport. But I can't afford to lose $10 on each case."

I asked her if there was any way that she could legally bill Medicaid for what they will pay, then bill me for the difference. She said they had a rule against that at one time, but she would call and see if they have changed it. We both know it will take forever for them to adjust their reimbursement rate to reflect the price increases.

She talked to someone in our state capitol this morning, who asserted that no, Medicaid still would not allow you to bill a family for the difference in cost vs. reimbursement rate (which doctor's offices do all the time).

Not only that, but she told me that if I decide to buy pull-ups at her pharmacy myself, they actually will require me to sign a waiver stating that I am waiving my right to that benefit!

So they won't reimburse at a rate that anyone can supply the service at, nor will they allow someone to make up the difference by billing me, but they will make me waive my right to this benefit when I purchase the supplies myself.

You just can't make this stuff up!

The Allergy Detective

Two weeks to the day after his open-heart surgery and one day before his Papaw's surgery, Little Boy decided life just wasn't exciting enough. He decided to pop out some hives all over his body. This after running low-grade fevers for 4 days. I called the pediatrician, who said to give him Benadryl and let him know if it got worse.

Yesterday, he was digging at his ears and still running a fever. He only had two little hives on the back of his neck, so I thought maybe this was getting better. I took him to see the doctor about the persistent fever. He said everything looked fantastic -- no obvious signs of infection. I walked out with no explanation for the fevers, but assured that he was being a normal one-year-old.

Today he woke up covered with welts. Oh yeah, and that fever. But he's drinking formula, eating Cheerios, crawling around, playing, acting fairly normal.

I just don't like these persistent hives, so I called the pediatrician's office again and asked where I should start trying to find the source of the hives. Should I work on stuff he's eating, or work on environmental things like laundry detergent?

The physician's assistant asked what has changed in the last week.

Well, everything really, since he was in the hospital! He had a blood transfusion in surgery, then spent a week in a pretty hypo-allergenic environment and drinking their brand-name formulas. Now he's home, where I just changed my detergent, I feed him store-brand formula, and we have a cat who likes the outdoors. We eat all sorts of things because up til now, no-one has anything more than seasonal allergies.

At first, they recommended switching to Dreft or Ivory laundry soap to see if that helps.

Then they talked to the doctor, who said hives are a common indication of illness. So they do go along with this mysterious fever. He said keep giving him Benadryl and expect the hives to last a week or more. If anything gets worse, bring him in.

I'm glad to avoid another trip to the doctor, but I have to confess, my suspicious-mom radar is beeping a low-level alert. You'd think after having two relatively healthy kids, I'd be more laid-back about stuff like this.

Accessible Vans: The Choose-Your-Own-Adventure

Since we learned that God has provided funding for a new wheelchair-accessible van, we've been researching our options. The funding will be available at the end of this week, but we're finding that the decision is dizzyingly complicated. In fact, it reminds me of the old "Choose-Your-Own-Adventure" books I used to read in junior-high. I used to keep my finger in all the places I had to make a choice, so I could backtrack and try something else!

The first decision is to get a full-size or a minivan. The full-sized van would easily seat all 6 of us, car seats and all. But I've heard from many parents that full-sized vans are not only gas-guzzlers, but are difficult to park. They will be too tall for our garage and most parking garages and too long for street parking. They are higher off the ground, requiring a lift instead of a ramp to get the wheelchair in and out, which is more expensive and also makes loading and unloading slower. This is a big negative for a busy mother of four who already has to allow 15-20 minutes just for loading and unloading the kids when calculating travel time anywhere. In addition, one mom I talked to said she didn't feel her son was safe riding a lift that had to go up so high to get into the van.

In addition, if I am completely honest, emotions are definitely involved. I just don't like large vans! To me, they are just plain ugly. Seriously... just look at this picture! Even though they staged the photo in a beautiful fall scene with a heart-warming family, the van is U G L Y ugly. I don't think full-size vans have changed much in appearance in 20 years!

So, despite Scott's observation that fitting 6 people into one would be simple, until I smash into a brick wall of impossibility, I refuse to consider a full-sized van. Fortunately, Scott is very patient with me. He knows I'll do most of the driving in the new van, so he's willing to accommodate my fickleness for now. So, I am we are trying to find a minivan that will seat all 6 of us.

The good news is that most minivans can be modified. The bad news is that not all can be modified the same way. So, we've had to look at van makes and conversion options simultaneously, bouncing around just like a choose-your-own- adventure.

Each minivan has its own unique characteristics: one is taller, one is wider, one is deeper, one has a cleaner line from the door to the back row. (This is important when you consider maneuvering a power wheelchair in and out.) We first tested the back row to see if any minivan could fit all three car seats/booster seats in one row. None could, not even the widest. So we knew we'd either need a van with a seat in the middle row next to the wheelchair or a van with 3 seats in the middle row.

We checked out the two minivans with that 3rd seat in the middle row. In one, the third seat is half a seat and not a long-term option. The other van is not currently being converted to rear-entry, which is the only way this will work.

We were back to square one. I remained undaunted. Optimistic even. I knew it would be tricky to find just the right arrangement for us.

We tried looking at the conversions next, thinking maybe we could back our way into a van that way. Conversions seem to boil down to three main types:

You can get a lowered floor van with a side-entry folding ramp or lift. This equipment does not block the window or create the big blind spot we have now, and they require less space out the side of the van (5 1/2 feet instead of 8). But the ramp still blocks one sliding door for passengers who don't need wheelchairs. Side-entry also requires a lot of maneuvering to get the wheelchair in and out because we need a seat next to the wheelchair. We're having a tough time picturing Elli mastering the driving skills required for this any time soon.

You can get a lowered floor van with a side-entry in-floor ramp, which frees up the sliding door. This is the best side-entry option for us. But we've heard these are more prone to mechanical problems, can get dirty because they stow beneath the vehicle, and they reduce the clearance you have beneath the van significantly (watch out for speed bumps!).

You can get a rear-entry ramp with a lowered section of the floor. You can park these vans in any standard parking space, and Elli could drive straight in and out -- no maneuvering her chair. But you have to swing a back bench seat up and out of the way to get the wheelchair in and out. In our case, this means we'll have to take booster seats in and out every time we drive with Elli. Also, our first-choice minivan does not offer the rear bench option.

So you can probably tell that so far, we have neither settled on a conversion nor specific van make. We have test-driven three different vans (Honda Odyssey, Toyota Sienna, and Chrysler Town & Country) -- more on these experiences in another blog post -- and have looked at all our side-entry options.

Tuesday we meet with a rep from the company that does rear-entry conversions. I am really hoping that the rear-entry option will work for us. If it doesn't, that sound you will hear Tuesday evening is me crashing into the wall of impossibility. And once I recover, we'll have to start over from the very beginning looking at full-size vans.

God's Provision for a Van

We're currently driving a ten-year-old van that has been jury-rigged to accommodate our daughter's wheelchair. It has been a very reliable vehicle, but it is showing its age in many ways. It entered our family by virtue of my father-in-law's mechanical prowess. He found it 5 1/2 years ago on the "tow line" at an auto auction (which means it was not driveable but was really cheap), replaced the engine, sold it to us for what he had put into it, and then repaired and maintained it for us. Scott has done a fair share of work on it too, replacing almost the entire air conditioning unit with the help of a family friend.

Three and a half years ago, I learned I was pregnant with our third child. Within just a few months, I could no longer lift Elli or her chair in and out of the van safely (we were putting her in a car seat and then stowing the chair in the back of the van). In God's providence, Elli had just that year received a slot in a new waiver program that gave us a little bit of financial help making accommodations for a wheelchair. This turned out to be just enough to purchase a very inexpensive ramp (only $3,500!) into the van. The ramp is 6 feet long, and when folded up it completely blocks the door and the window on the passenger side of the van. But it allowed us to roll Elli's wheelchair into the van, anchor it to the floor, and drive with her in it. This took a tremendous physical burden off me.

Because this is a makeshift system, we've run into many challenges over the past 3 years. We've had to learn to drive the van with that huge blind spot out the side (I learned to adjust the mirrors and trust them -- they can completely eliminate the blind spot if adjusted differently). We've learned that not all handicapped parking spaces are van-accessible, especially when you need 8 feet clear to get the ramp down and the chair off of it. Sometimes we've had to double-park, or back the van out and then load or unload her in her chair because we didn't have room or someone ignorantly parked too close. We also have to remove part of her chair's push-bar to get her in and out of the van because the roof is too low.

So, we've been making a mental list of all the things we will need in our next van. But each time we look into the cost, we get sticker shock (you can add $10-12,000 to the cost of a van for the modifications needed for her) and determine that our own payed-for van will do just fine for now. By God's grace, we have focused on being content with what we have and have prayed that God would keep our van running for one more year.

This past year, we looked in greater detail at the options available so we'd have some idea what we were aiming for, money-wise. With four children, all either in car seats or booster seats for another few years, the options aren't straightforward and are all expensive. We have been slowly working to get our family to a place financially where we could afford to purchase the kind of vehicle that will serve Elli into her teenage years, but we knew that it was going to take more than a year to have cash in hand and/or room in the budget for such a van payment.We had a long talk and agreed that we would change our approach to the van. Instead of praying for one more year, we decided to drive the van until it died and trust God to provide us a way to replace it whenever the time came.

Little did we know that God would provide so soon! Last month, we learned that Elli was going to receive a waiver with much more financial assistance. This would provide us with the funds to pay up to $10,000 towards equipment and modifications to a van. We would just need to pay the cost of the vehicle itself. We were both so thankful that we had practiced patience!

Then, two weeks later, they did a needs assessment of Elli. Because Elli's needs are so complex, she actually qualified for much more per year than our case worker had ever seen before. Like enough more to pay for the van and the modifications needed in full.

We will be able to choose exactly the system that will suit Elli and the rest of the family the best, without having to compromise or make do because we can't afford something!

Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen. (Eph 3:20-21)

Slander on the Internet

Little Boy is still in the hospital. He had a truly-major surgery last week, even bigger than we had been told. So all expectations on his recovery had to be adjusted. Not surprisingly, his heart is taking awhile to heal. The doctors are not concerned and have told us that this isn't a complication. He's merely a slower healer. He actually looks fantastic: he is eating, drinking, and even crawling around. (It makes me cringe to watch him, but I know he won't do something that hurts!) I have given up predicting when he might be released though.

Since we're still traveling back and forth between home and hospital, and not sleeping well on our nights at the hospital, I don't have much time or brain-space to blog. But I found an interesting article about spreading slanderous stories on the internet and thought I'd share it here. It sparked quite a bit of discussion (see the comments) and is very thought-provoking.

Should You Pass On Bad Reports? by Tim Keller and David Powlison

I thought it was such a timely and thoughtful call to think carefully about what I email and post on my blogs. As believers, we ought to be above reproach in every way. Unfortunately, spreading stories and talking about people as if we would never do such a thing is a huge weakness for most Christians.

May God help us better reflect His mercy and grace to our fellow brothers and sisters! May we always remember 1 Corinthians 6:9-12, "Or do you not know that the unrighteous will not inherit the kingdom of God? Do not be deceived: neither the sexually immoral, nor idolaters, nor adulterers, nor men who practice homosexuality, nor thieves, nor the greedy, nor drunkards, nor revilers, nor swindlers will inherit the kingdom of God. And such were some of you. But you were washed, you were sanctified, you were justified in the name of the Lord Jesus Christ and by the Spirit of our God."

The Darndest Things

I'm taking my first turn at home since Little Boy's heart cath on Tuesday. I miss him to pieces, but I was missing the other kids terribly too, and I hadn't slept well in days. So I came home last night, slept like a rock, and have been enjoying a real break from the ICU life. I have been saving up some funny things the kids have said and thought I'd share them today.

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Last night, I walked into the house, and Older Boy spotted me. A big smile spread across his face, and he ran to give me a big hug.

"I MISSED you, Mom," he said. "We had to wait a hundred million waits for you to get home."

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Today at lunch, Little Girl was munching on caramel corn. All of a sudden, she said, "Mom, I can't figure out how to get jelly beans into my tummy."

Knowing that she has the mechanics of eating down, I was a little confused. "Why's that, honey?"

"They stuck on my teef a wot."

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Julie brought some dinner for Elli last week. The next day, we still had some leftovers so I asked Older Boy if he'd like some.

"What is it?" he asked.

"Lasagna," I answered.

He thought a minute, then said, "I like you-zohn-yuh. I'll eat some."

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Scott reviews a child-friendly version of the Westminster Shorter Catechism with the kids at bedtime. He was asking questions about Adam and Eve, such as "How did God make man?" (The answer is "God created man male and female.")

Scott asked, "What did God promise to give to Adam?"

Older Boy answered, "Email and a female."