Living Without Fear

My husband subscribes to the sermon podcast for Capitol Hill Baptist Church (where Pastor Mark Dever, who wrote 9 Marks of a Healthy Church, serves as preaching elder). This fall, they posted the audio recordings from their women’s conference "Titus Two Talks" held at Capitol Hill and hosted by Nöel Piper, wife of author and pastor John Piper. This year's topic was "Living without Fear." I can't think of a better topic for women -- don't all our worries rise out of fear of something?

Here is a link to the audio. You can listen online, download the MP3 files and listen offline, or subscribe to the podcast, using the links on that page. (To subscribe, go into iTunes, select Advanced > Subscribe to Podcast, and paste this link into the blank field: http://www.chbcaudio.org/?feed=rss2. The episodes will then automatically appear in your iTunes podcast library.)

If you don’t have iTunes, it is free and can be downloaded from http://www.apple.com/itunes

Lilttle Boy's First Bites

My 7-year-old 1-year-old

We have entered a bold new world in our family. Elli has progressed in her development (a good thing). Instead of being at the physical level of a 3-6 month-old, she is now more like a 1-year-old... but in a 7-year-old's body (a very bad thing).

In this new stage, Elli grabs everything that comes within reach, and we vastly underestimate the scope of her reach. I remember this now. But with a 1-year-old, you aren't dealing with the height and strength that Elli has. Up til recently, it was more of a nuisance. She gets her hands on food bowls at the table, pulls the tablecloth, grabs at toys left on the floor, and insists on practicing rolling even though she still can only roll one way and gets mad when she gets stuck.

Last week we decided that we have to strap her arms to her wheelchair while we tube-feed her so she won't pull the tube right out of her body. She refuses to obey us when we tell her not to even touch the tubing. So until she can learn some self-control (who knows how long that will be), we have to protect her by immobilizing her arms.

But even pulling her feeding tube out is relatively minor. This weekend she showed us just how much trouble she is now capable of getting into. Thursday night we had to rearrange sleeping quarters and put Elli on an air mattress on the floor. We didn't realize how much she wiggles and how far she can get, even with these leg splints she wears at night. Elli managed to tip over a night table, pull the lamp on it to her, and get her hand stuck inside it. It was a touch lamp, so she was able to turn it on and couldn't turn it off because her hand was stuck. She burned to blisters the entire inside of her pinky on the hot bulb.

What none of us can understand is why she never cried. Not when she burned it. And not after, which hurts worse and for longer than the actual burn does. We didn't realize the finger was burned until the next morning! (These are the things that haunt a mother.)

The next day, she wiggled across another floor to grab the power cord to a decorative lamp. She pulled the lamp down, breaking part of it, and somehow wrapped the cord around her neck.

We are praising God that we caught both incidents before tragedy struck. And we are praying very hard for wisdom and discernment to foresee and avert any other major problems until she gets through this stage. It's a somewhat frightening time for us, and will be very draining as we can no longer leave her unattended safely. I'm praying that she doesn't take longer than a normal 1-year-old to learn all these cause-and-effect and obedience lessons.

Turkey Day

My sister-in-law made these turkey placecards for our big Thanksgiving feast this year. My mother-in-law got the idea from Martha Stewart. They turned out really cute.

Little Girl (no, she didn't get a turkey eye...
but she sure enjoyed her desserts!)

Elli ate more during this holiday week
than she normally eats in 2 weeks at home!

Little Boy loved being at the table with all of us.
He's a very social kid.

Big Boy decided Mamaw's chicken'n'noodles
was the best food of the whole day.

Allison thoroughly enjoyed having her cousins over to play.

We had a great visit with Scott's side of the family this weekend. Scott and I even got out by ourselves for an evening concert. I can't say that I'm more rested because Luke is eating like a horse. But it was great to have more adults than kids for 4 1/2 days! I managed to squeeze in one nap, and part of another (don't ask).

I also worked on some Christmas stockings. I made Elli and Big Boy each a stocking a few years ago, but I'm two behind now. The kids are old enough to notice, plus I only have one backup stocking (a pink "baby's first Christmas" stocking -- Big Boy won't let me get away with using that one for Little Boy!). No, I'm not knitting them. They are sewn stockings that look like jester's slippers. Photos coming when I finish them!

Movie Review: "Martian Child"

I belong to a group for parents of special needs children in our school district. Today another member emailed us a movie review for the newly released "Martian Child." I intend to go see this movie at my first opportunity -- which truthfully may not happen til it comes out on video! But I wanted to share this with you as it speaks to one of the toughest questions I get asked as the mom of a special little girl. If you get to see this movie before I do, let me know what you thought!

By Dan H. Kent
(You can find the original posting of this movie review here.)

There are comments that people make to parents of special needs children like, "I don't know how you do it," or, "We feel for you." These are well-meaning, caring remarks. And they are appreciated. With the limitations of language, how else would someone express their compassion? Alongside a statement like this, there sometimes seems to be an unspoken, yet innocent, question. It is: "How can you love that child?"

I don't mean to be cruel to say this, or to imply that people are heartless or lack feeling. The opposite is true. But as the father of an autistic child, I believe that sometimes, just sometimes, there is a lack of experience that is difficult to overcome. A gulf exists that can make it difficult for the parent of a "normal" child or for anyone else, to understand the love of a special-needs child. And given all of the effort and frustration that comes with the raising of a special-needs child, the special-needs parent might, if the question were actually put to him or her, find the question difficult to answer, except to say, "How can I not?"

In the movie, Martian Child, David (John Cusack), a young widower still mourning the loss of his wife, considers adopting Dennis (Bobby Coleman), a child who lacks social skills and apparently believes he is from Mars. When David first encounters Dennis, the child is in a large cardboard box, observing the playground through a hole in its side. This is an apt, if obvious, metaphor, as children with emotional needs are truly separate and apart, don't know how to interact (though they often want to), and observe their peers as though from a distance. Dennis is a damaged child, suffering from the knowledge that he was abandoned by his true parents.

Near the beginning of the movie, David's sister Liz (Joan Cusack) expresses her concern that the child will be too much for him to handle and will ruin his life. Beyond Liz's concern is her utter incomprehension as to why he would even want to try. As the movie progresses and David is dealing with Dennis's problems during the trial period of the adoption, she even suggests that he should return the child to the agency. Although she is a parent herself, she does not understand David's love.

David persists, however, and with the help of his close friend Harlee (Amanda Peet), a true father - son relationship develops, and Dennis benefits from his new father. True to life, Dennis is not portrayed as being "completely cured", but he improves somewhat, and the viewer knows that he will to continue grow.

This movie answers the unspoken question. It does so, not with words, but scene by scene, through the interactions of the emerging relationship. The viewer comes to understand the emotional relationship of the two.

John Cusack is completely authentic in his role. He is tormented, concerned, caring, anguished, and enriched. In short, his is an authentic portrayal of the father of a special-needs child. Bobby Coleman aptly plays the role of Dennis, and is convincingly emotionally disturbed. The twist, his belief that he is from Mars, is adequately explained. Despite the insertion of a few inexplicable scenes, such as the child's ability to "taste color", and a dramatic, but excusable, Hollywood conclusion, the screenplay by Seth E. Bass and Jonathan Tolins, and the movie, directed by Menno Meyjas, is a worthy journey of emotion for those willing to experience it.

(My sincerest thanks to Dan Kent for writing this review.)

Thanksgiving Funnies

Little Girl came up to Scott yesterday with her hand like the above photo. She said, "Look Dad! This is Oobi as a police officer!"

(The "hat" is a refrigerator magnet.)

Big Boy couldn't let her have all the attention. He immediately spotted the other magnet beyond his reach on the fridge, asked Scott for the "other hat," and joined in the fun.

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Last night the kids were discussing Thanksgiving food with great relish. Suddenly Little Girl declared, "I'm going to eat the turkey eye!"

Big Boy exclaimed, "I'm going to eat the turkey leg. It's bigger than Little Boy's leg!"

----

Happy Thanksgiving!

Jazz, Suburban Feline Predator

I've always been a cat-lover. Knowing this, my husband gave me a cat for my birthday the first year we got married. She was a stray taken in by a sympathetic coworker of his who simply could not provide her a permanent home.

We quickly learned that this cat was not your typical shy, retiring wall-flower, content to sleep in sunbeams, purr on your lap, and watch the world from the window.

No. "Jazz," had a taste for the street life. She lusted for freedom. Action. Fresh air. But most of all? Blood.

We did our best to convert her to the joys of the indoor life. We bought toys and catnip. We played games with yarn and laser pointers. Our family even came with a ready-made playmate -- a 75-pound dalmatian. For two and a half years we attempted to contain her inside our various apartments, and pursued her doggedly when she managed to escape. Which she did. Often.

She utterly refused to be tamed. Instead, she began a tenacious campaign to win her way outside. First, she stalked the exits of our homes, taking advantage of every unguarded moment.

Second, she created her own indoor fun. She chased the aforesaid 75-pound dalmatian around the house, attacking his spots as if they were bugs. She scrambled to the top of our Christmas tree, tossed the tree-topper to the floor, and then leaped to the floor, trailing Christmas lights and half the ornaments. She scaled window screens like Spiderman (looking for a way out?). She broke into our bedroom at night and attacked our feet while we slept. Repeatedly. Even when we made sure our door was completely closed. (I still have no idea how she did it.)

She tried to dig a hole to China under our bedroom door. That's when we made the agonizing decision to remove her front claws. I hated to do it, but we weren't financially prepared to support her destructive tendencies in our rented apartment. Had we let her keep shredding the carpet, we would have been forced to shell out at least $250 when we vacated that place!

Of course, once we got her front paws de-clawed, we believed we had no choice but to keep her indoors. However, she became increasingly defiant, seeming to sense our renewed determination.

Finally, after leaving a sleeping but medically-fragile baby in her crib in a vain attempt to "rescue" our prodigal cat in the wee hours of the morning (we needed two of us to "herd" her back to the apartment), we decided that we were going to have to let go. It's rather like being parent to a rebellious teenager. At a certain point, you have to stop protecting them so they will suffer the consequences of their poor choices and hopefully gain some sense.

But not Jazz. She has street smarts, apparently -- not sense. Ever since that night, she has spent the majority of her nights wandering the streets doing who-knows-what. Every morning she paws at the door like a dog, begging for re-entry, her breakfast (dinner?), and a bed. We've moved twice since then, but she has never once failed to return home.

Having won that battle, she apparently has decided that we deserve special thank offerings periodically.

So she has taken up a new hobby. Hunting. Without front claws. It's truly amazing because she is quite successful. And for some crazy reason, she chooses to present her kill to us at the worst possible moments.

For example, one fall morning shortly after Elli returned home from a major surgery, I was expecting a friend from church to drop by. This friend hosted a weekly prayer meeting in her home and her home was always spotlessly clean and tidy. I think she's one of those people for whom this comes naturally. (I am not one of those people. I like a clean and neat house, but I have to work very hard at it, I have yet to find an easy-to-maintain system, and I'd much rather write or run errands or garden or do anything else. But I digress.)

It was a nice day, so I had the sliding door to the back yard open slightly. I suspect that the dog, who had long ago decided if you can't beat 'em join 'em, was somehow convinced to bump the door open for Jazz with his snout.

I heard a strange flurry of activity in the kitchen as I was racing around trying to make the house presentable. It was one of those sounds that, despite it's unknown origin, inexplicably fills your heart with dread. Just as I peered around the corner...

*knock knock knock*

...Horror! There flapped a bird, under the kitchen table, shedding clouds of feathers, struggling to elude Jazz, who batted at the bird periodically, when she got too bored.

Panic gripped me as I stood there, midway between the front door, where my friend stood waiting, and the disaster in my kitchen. "What do I do? What do I do first?"

Despite the awfulness of being caught in that moment, I surprised myself by choosing not to leave my friend standing on the front porch. I let her in, begged her to please disregard the half-dead bird flapping about in my kitchen, grabbed a huge pile of newspapers, scooped up the unfortunate bird with newspaper-scoops, and carried it at arm's length to the farthest reaches of the yard. Jazz was banished outside for the next 24 hours. Not that she cared.

That was a few years ago. Since then she has chased a fully-alive bird into our new house, where I chased it around, praying that it wouldn't defecate, finally caught it between the mini-blinds and a window, and managed to open the window -- without hurting it or getting pecked myself -- to let it out. She has offered up countless moles and voles, chased a mouse up Scott's pant leg, and even killed a (small) rabbit. But fortunately all these she killed and bestowed on us, the great gods of food and warmth, in private.

Then, just a few weeks ago, I was in need of much help again -- we had a storm of doctor's appointments in preparation for Luke's heart surgery. Another friend had agreed to watch some of the kids for me that day while I took Luke to the hospital.

When I answered the door, I noticed an odd expression on her face and Jazz prowling around the bushes like a lion in Africa. I thought my friend was unsure if the cat stalking her feet was ours. But then she glanced down and to her left, casually remarking that my cat had brought me a gift.

In horror, I looked down too and saw the still-warm chipmunk laying there, very much dead. Jazz had managed to kill a chipmunk. A chipmunk! With no front claws!

This time, I only needed two magazines to safely scoop up the unfortunate animal and drop it into our dumpster.

There's no questioning it -- Jazz is a great predator. And clearly has a keen sense of timing. If only I appreciated her skill more.

The Truth about S-CHIP

I have been watching Washington with interest in recent weeks, as the Senate passed and then President Bush vetoed a bill to both renew the S-CHIP (State Children's Health Insurance Program) and add $35 billion in new funding to the program. Work continues on this bill as the Congress attempts to find a bill that both they and the White House can agree on.

At the time of the veto, President Bush's press secretary, Dana Perino, said "Congress's bill goes far beyond Schip's mandate by covering some higher-income households and adults.''

A recent Yahoo! news article explained,

"Schip, which now covers about 6 million children, was created to help families with incomes too high for Medicaid, the U.S. insurance program for the poor, and too low to afford private coverage. Over the years, some states have boosted income eligibility, reaching a high of $72,000 for a family of four in New Jersey, the most generous state.

The measure offered today would permit states to continue enrolling kids from families with incomes up to $62,000 for a family of four, or 300 percent of the U.S. poverty level."

What I haven't heard is someone asking and answering the obvious question. Why would a family with an income of $72,000 and only 2 kids need to apply for supplemental insurance? It is intellectually dishonest to attempt to evaluate this legislation without answering this question.

As a "professional" (what better way to express my 7 1/2 years - and counting - use of pediatric health care) consumer of health care and user of both private and state resources to pay for it, I can give you three answers to this question, right off the top of my head.

First, private medical insurance doesn't cover nearly what it used to. Copays are higher, co-insurance is higher, maximum out-of-pocket amounts are higher or non-existent, and lifetime maximums are more and more common. What this means is that even when you have private insurance, you still have to pay a significant amount out of your own pocket. If you reach your lifetime maximum, which is very easy with a life-threatening illness such as cancer or a traumatic injury, you're out of luck. All expenses from that point on are your own responsibility.

A family can reach their lifetime maximum (the most an insurance company will pay out for a given individual in their lifetime) in an extremely short time in the case of illnesses like cancer or conditions requiring multiple surgeries. And you can bet that a person who reached their lifetime max would NOT be able to find any private insurance company willing to insure them for any amount of money. And you can also guarantee that their medical bills will continue -- conditions don't magically resolve when the insurance runs out!

Regardless of whether you meet your annual out-of-pocket max (the most you should have to pay of your own money for copays and coinsurance in a calendar year), you still have to pay your prescription copays. Our prescriptions copays last year totaled $1,000. This year will be higher as Elli was much sicker and Luke was born with his own medical issues. And we have a really good insurance plan!

Second, private medical insurance does not cover "educational" expenses and frequently denies claims for medical equipment considered "preventative" -- needed to prevent complications down the road. For example, many types of speech therapy are considered educational rather than medical and are not covered. We've had to appeal for standers and walkers to get our daughter bearing weight while standing. She needs to do this to increase her bone density and decrease osteoporosis, injuries, and the need for surgery when she's older. Even when private insurance does cover these items, the copays are significant.

Third, medically-complicated patients bring with them many hidden costs that are not covered by medical insurance. Some of these hidden costs include modifications to the patient's home (e.g. wider hallways, ramps, accessible bathrooms), diapers and wipes (imagine instead of getting rid of your diaper bill, it goes up as diaper size increases and the number in a package decreases), vehicle adaptations, childcare/respite care (because you can't find just anyone to watch a medically-complex patient and you have to take breaks), home care nursing or personal aides (a single adult may be physically unable to safely transfer larger children and adults from bed to wheelchair to exam table to stander), and special diet needs (e.g. formulas, thickeners, feeding equipment).

So, even if you are that family in New Jersey with two children and an income of $72,000 a year, you could very easily find yourself in financial ruin if someone in the family receives a catastrophic injury or diagnosis. I know many families personally who have just resolved themselves to the reality that they will never pay off their medical bills. They are forever in debt to the hospital with medical bills totaling over $1 million dollars and no end in sight.

We have been very fortunate. One of us is employed by a large, self-insured company that has, for the most part, covered the bulk of the children's medical bills. Our out-of-pocket costs have increased significantly in the last 7 years, but as long as we stay within our network, we have been able to manage it with some careful planning. (We had a scare earlier this year when our insurance and our local children's hospital didn't come to a financial agreement until the last day of their contract. If the hospital had suddenly become an out-of-network hospital, our out-of-pocket costs would have quadrupled.)

We've had to look to state programs, funding in part by the Schip, for help with many other expenses, including those listed above. Qualifying for that assistance is rigorous, requiring documentation of diagnoses, income, resources, etc. And the process for gaining approval for and payment of an item through these programs is frustratingly long and full of red tape. So the states are not just handing out money indiscriminately!

The Schip program is one of the truly legitimate uses of our tax dollars, I believe. It's one way that we can help take care of those struggling with life-shattering events and illnesses. The money goes to states to create programs that fit their populations. Our state desperately needs additional funding for its programs, and I'm sure we're not alone.

It would be nice to see our government spend some money to take care of its bread-and-butter citizens -- the ones who work hard, pay their taxes, try their best to raise responsible children, but are struggling with tragic circumstances-- for a change.

Eat Your Heart Out, Eddie Bauer!

This photo just looks like a catalog cover to me! Little Boy is wearing a handsome handknit sweater from my friend Brooke. The colors are just perfect, and the sweater has enough growing room to last all winter! He's posing on a handknit blanket made for him by Elli's home health aide, Julie.

By the way, isn't it amazing that he can have such a beautiful smile just 10 days after open-heart surgery? He's been giggling at us too. It's very healing to us to see him doing so well so quickly.

New Look Coming Soon!

In the next day or so, you'll get to see my new blog makeover. I'm really excited about it. After almost three years (hard to believe it's been that long) of tinkering myself, I finally decided to get the help of someone who knows how to work with Blogger.

If you like what you see, drop Ro at The Blog Cafe a line -- they have over 100 premade blog designs ready to be installed, plus a super-reasonable custom blog design service as well.

Out of the mouths of 5-year-olds

Last night Scott put the kids to bed. They started talking about the holidays coming up and asked which one was next. He explained that we celebrate Thanksgiving next, and then a month later we'll celebrate Christmas. He asked if they remembered the Advent book we read last year. Big Boy got very excited about this -- it has pieces that pop out and stand up to create a 3-D nativity scene.

He said, "I know a song about that." But then he paused and cleared his throat very deliberately.

Scott gave him a quizzical look.

Big Boy, with a shy smirk, explained "That's what singers do before they sing."

Then he sang "Away in a Manger."

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On the way home from running errands today, we drove past McDonalds (actually, we passed two of them, but the kids must have missed the first one by some miracle of the cosmos).

From the back seat I heard Big Boy comment, "I'm banished for chicken and fries. I'm really hungry."

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Big Boy had the infamous 5-year well-check today. I decided to tell him this morning, before we left, that he would get shots. He was alarmed, but I explained to him that these shots will keep him from getting really sick. The kind of sick that would put him in the hospital where they would have to poke him with needles lots of times. (Having just arrived home with an baby whose limbs look like pincushions, I can speak with some authority on the subject. If you are anti-vaccine, that's fine. But you're barking up the wrong tree if you want to argue this with me. My kids deal with enough already for me to knowingly let them go unprotected against preventable illnesses.)

Big Boy agreed that one shot sounded better than that. He has seen enough of what Elli and Little Boy have gone through. But he was still anxious (Of course! I'm not looking forward to getting my flu shot either). So I promised to hold his hands and let him squeeze them as hard as he wanted to.

When we arrived at the doctor's office, the kids immediately noticed other kids leaving with suckers as well as stickers. They perked up right away.

So with the lure of candy before them, they bravely marched after the nurse when Big Boy's name was called. He did great today, even doing the vision and hearing all by himself. And both kids got their shots without screaming, fighting, or cutting off the circulation to my fingers!

As Big Boy pulled his shirt on, he said, "Mom, those shots really did hurt."

But they both marched out with stickers proudly affixed to their jackets and suckers firmly planted in their mouths. What a relief to have that over with!

A League of Extraordinary Trick-or-Treaters

This year was certainly extraordinary. Two of us spent the evening at the hospital, while the rest made the best of it. Sam commented on it this morning.

"Mom, next time can we all be home and give out candy and then everyone go to the other houses?"

I told him I hoped very much that we could do that next year. But I was very careful to make no promises. That's one thing I've learned in the past 7 1/2 years -- don't make promises you can't keep.

Here's Luke in his costume.


It was very important to the kids that he still wear his costume, even at the hospital. So Scott pulled this leopard-print outfit over his head and arms and put the cat hat on. He had too many things hooked up to get his legs into it, but we were able to take pictures for the kids... and the nurses loved it.

(P.S. Luke got discharged from the hospital today! This is a record for our family. We decided that he is one of those smart kids who learns from others -- he's showing us how Elli was supposed to do it! [She spent 7 weeks in the hospital for her first heart surgery.])

And here are the older three, ready to go.


Spiderman is Sam's favorite superhero. He encountered another Spiderman, minus the mask, while out in the neighborhood. Scott said they both froze, eyed each other up and down, and then announced to each other they were Spiderman. Then Sam yanked off his mask and finished the night without it. Hmm... think the boy is influenced by others?

Elli is Dora the Explorer (I love the cut-out hair!). We went to Party City for her costume, and this is the one she picked. They had an overwhelmed number of choices, and it was tough for me to narrow it down to the ones I thought she'd like... but she chose Dora over Tinker Bell and the other princess things. I'm all in favor of that -- being an explorer is much more achievable and admirable than being a princess.

Anna is a Princess-Doctor. The doctor bit was a last-minute enhancement she came up with on her own and insisted upon. She also decided not to wear the crown -- she squashed a soft flowery sun hat onto her curls instead. (Sorry - no photo. That was an even later last-minute enhancement that we didn't capture!)