Laundry Break

Normally, laundry is another mountainous chore that is never actually done. When you have six people in the family, once everyone puts their pjs on, you've got a whole load of newly-dirtied clothes!

However, today I'm taking a break from the hospital to do a load of laundry at a nearby friend's house. I'll be staying with Little Boy tonight while Scott goes home to spend some time with Older Boy and Little Girl. Little Boy has been very quiet and stable today, content to simply rest and heal. He had an even more complex surgery than anticipated yesterday, so his body needs the break. But he's doing well at the moment, so we agreed that I should get out for a couple of hours, wash the clothes we packed for the hospital, and remind myself that the world still turns even when your child is sleeping in an intensive care unit. (That's amazingly easy to forget, believe it or not.)

It's a refreshing break to do something normal and mundane, see sunshine, breathe unsterilized outside air, and hear birds instead of monitors, breathing machines, and IV pumps.

Then tomorrow evening I'll take my turn going home, sleeping in our own bed for the first time since Monday, and enjoying some playtime with Older Boy and Little Girl.

The Tough Part

Today is day 2 of Little Boy's two-day heart repair. Yesterday went well from a technical or medical standpoint -- they blocked off 5 of the 6 extra (collateral) blood vessels in the cath lab and got the measurements they needed for surgery today.

From a parent or a child standpoint, yesterday was pretty tough. Little Boywas his typical happy-go-lucky self in the morning, though a bit on the hungry and thirsty side. When he woke up, however, everything had changed. He needed oxygen to keep his levels safe, he needed heart monitors and oxygen level monitors, he had an IV in one hand, and one leg was wrapped up in a blood pressure cuff that squeezed him every 15 minutes and then every hour until late last night. For a guy on the go, being leashed like this really cramped his style.

But I think what bothered him most was the sore throat he had from the breathing tube he needed during general anesthesia. He was under for 3 1/2 hours, which is about three times as long as the normal cath. It was so sore that it hurt him to drink, so once he got past the ravenous hunger when he first woke up, he wouldn't eat or drink much.

It's so difficult as a parent to sign a form that allows stuff like this to happen to your child. When Elli was a baby, she was very sick and it was very clear to the naked eye that she needed surgery. We were sobered by the weight of such a responsibility -- parenthood turned out to include life-or-death decisions that we had never anticipated -- but it was relatively easy to sign the forms and send her into surgery.

But Little Boy looks to the naked eye to be perfectly healthy. Yesterday's procedure made him very sick. The anesthesia made him miserable. And none of the cuddling, singing, swaying, and tylenol seemed to help him. As a mom, that made me teary a few times, because I'm used to being able to kiss and hug away the hurts. None of my tricks worked yesterday.

The procedure was absolutely necessary to do -- if they didn't take those collaterals out before surgery today the massive amount of blood pumping into the heart from all this vessels would have required continuous blood transfusions during the surgery, and the surgeon would still have struggled to see what he needed to operate on.

So I keep reminding myself of all the things I know to be true and try really hard not to let my emotions follow the circumstances. When it's your son, that is an impossible mission without the Holy Spirit's help, so I covet your prayers on this for the next few days especially.

Take a Deep Breath

...and remember who's in charge.

That's going to be my mantra for the next couple of days. On Monday I take our little one-year-old charmer down to the hospital for labs (oh yay!), x-rays, and pre-surgery physical. Then bright and early Tuesday morning, we take him back down for the first of a two-day process to restore his heart to "normal" working order.

The first day he will go into the cath lab, where they will thread catheters from the large (relatively speaking, since he's only 1 year old!) veins and arteries in his groin up to his heart. They will take the pictures they will need for the next day, and then they will insert little coils into a bunch of little vessels that his body grew in utero. He doesn't need them now, so these little coils will close the vessels up. I guess they shrivel up and resorb into the body.

If all goes well and his body doesn't start yelling "Hey! What did you do! I don't like that one bit!" he will have open-heart surgery on Wednesday morning. In that surgery, they will cut open his chest and sternum, insert a patch to widen the opening into his pulmonary arteries and close a large hole between the pumping chambers of his heart. If they see some vessels in Tuesday's cath that he actually does still need, they will also move them into a better place.

The doctors are very confident that he's going to fly through this with no problems and be home in a week or less.

I, on the other hand, am nervous as our remote controls when Little Boy is in the room.

Which means I'm focusing on the wrong things. I'm focusing on all the stories I know, all the bizarre experiences we've already had in our first five open-heart surgeries. (Yes, this will be the 6th open-heart surgery in our family in the last 8 1/2 years. Even I have a hard time wrapping my head around that, and I'm living it!)

I think what happened is that I've been around the hospital too long. And unless you have something else, someOne else, to cling to when the winds blow and the ground falls out from under your feet, you lose hope and confidence in things working out well.

It's like Peter, when he walked across the stormy sea to Jesus. When he started looking at the storm and the waves and when he started feeling the rain and the wind, he lost his faith in Jesus's control of every element. And the same goes for me. When I start looking around me at all the medicine and equipment and at the pain and discomfort my son is enduring, when I start listening to the people and their stories and their best guesses about the future, I lose my faith in God's sovereign plan for the entire situation. I must close my eyes, my mind, my thoughts to all of that stuff and focus only on Him.

So, for the next ten days (and beyond), I'm going to repeat over and over, "Take a deep breath and remember who's in charge."

Drinking the Cup

I'm a bit behind in "Streams in the Desert" so I started back a few days when I sat down with my coffee and actually took a moment to read this morning. This was a tough passage to read, but it was one of those good pains that heal even as they hurt.

July 19
Shall I not drink the cup the Father has given me? (John 18:11)

To "drink the cup" was a greater thing than calming the seas or raising the dead. The prophets and apostles could do amazing miracles, but they did not always do the will of God and thereby suffered as a result. Doing God's will and thus experiencing suffering is still the highest form of faith, and the most glorious Christian achievement.

Having your brightest aspirations as a young person forever crushed; bearing burdens daily that are always difficult, and never seeing relief; finding yourself worn down by poverty while simply desiring to do good for others and provide a comfortable living for those you love; being shackled by an incurable physical disability; being completely alone, separated from those you love, to face the trauma of life alone; yet in all these, still being able to say through such a difficult school of discipline, "Shall I not drink the cup the Father has given me?" -- this is faith at its highest, and spiritual success at its crowning point.

Great faith is exhibited not so much in doing as in suffering. Charles Parkhurst

In order to have a sympathetic God, we must have a suffering Savior, for true sympathy comes from understanding another person's hurt by suffering the same affliction. Therefore we cannot help others who suffer without paying a price ourselves, because afflictions are the cost we pay for our ability to sympathize. Those who wish to help others must first suffer. If we wish to rescue others, we must be willing to face the cross; experiencing the greatest happiness in life through ministering to others is impossible without drinking the cup Jesus drank and without submitting to the baptism He endured.

The most comforting of David's psalms were squeezed from his life by suffering, and if Paul had not been given "a thorn in the flesh" (2 Cor 12:7 KJV), we would have missed much of the heartbeat of tenderness that resonates through so many of his letters.

If you have surrendered yourself to Christ, your present circumstances that seem to be pressing so hard against you are the perfect tool in the Father's hand to chisel you into shape for eternity. So trust Him and never push away the instrument He is using, or you will miss the result of His work in your life.

Strange and difficult indeed
We may find it,
But the blessing that we need
Is behind it.

The school of suffering graduates exceptional scholars.

----

May I be honest? I didn't apply to this school, came to it kicking and screaming, and have put in a request to drop out countless times, only to be denied each and every time. In my weakness and flesh, I don't want to be an exceptional student here! How far I am from saying "Shall I not drink the cup the Father has given me?". I thank God that He is a patient and persistent instructor, even when I need remedial classes because I keep flunking out.

He also provides small glimpses of the fruit of these classes in small opportunities to minister to others. For reasons known only to Himself, He has me in and out of the hospital regularly, interacting with many other parents as well as the employees of the hospital. He has me in the public school system, a place I never dreamed I would go. And He shows me, when I'm willing to open my eyes and look up from my own struggles, that so many others are out there without hope and without resource. It is in those moments when I catch a piece of His vision and can begin to concede that the work He is doing on my heart and my character is much needed, not only for my own growth but for ministry to others.

That Was One Fast , Action-Packed Year

Happy birthday, Little Boy! I can't tell you how delighted we have been to watch you grow and defy the doctors' predictions about your condition. We have relished every moment of this past year: every smile and giggle, every milestone, every snuggle and kiss.

I wish you didn't have to celebrate by having heart surgery next week. I promise that if when I have heart surgery, I will allow you to drag me out of bed the next day and make me walk laps around the unit. ... but only if you want the job!

That Mother

**Edited at 8pm... see end.**
This afternoon, I had to take Elli along with her three siblings, to an hour-long pediatric physical therapy (PT) appointment. Have you ever been to a pediatric PT department? It's chock full of colorful exciting things like tumble-forms, round balls, peanut balls, barrels, swings, mirrors, gymnastic mats, wedges, and much much more. All super-child friendly. All super-expensive. And all designed to help kids who are learning or re-learning essential skills like sitting up, rolling over, crawling, walking, jumping, climbing stairs, and more.

They aren't meant to be played with by able-bodied rambunctious bored siblings.

But try telling that to said able-bodied rambunctious bored siblings!

I packed a backpack full of fascinating (I thought) toys, and instructed the kids that they were not to play with the toys at the session. They could only play with the toys we brought from home. I also added an element of bribery: they would not get stickers unless they cooperated and followed my instructions.

Well, that was about a successful as bathing a cat.

They still ended up playing with most of the toys within arm's reach, jumping from wedge to cushion, trying to swing from the ropes, and tossing basketballs while I was distracted, filling out forms and answering the therapist's questions. When I finally had a minute to address them firmly and insist that they sit down, Little Girl grabbed her markers and a coloring book. Older Boy pouted in the corner, and Little Boy puttered with the markers, pretending to color.

Ahhh. They were finally quiet. I took the moment to gather my sleep-scattered thoughts.

Then Little Girl turned around. She had created purple tiger-stripes across both arms, and polka dots on her legs. Little Boy had also colored his arms and legs.


Older Boy discovered the "tattoos" they were giving themselves, and got in on the marker action before I realized what he was doing.

And you know, I was a teeny bit dismayed, but then I thought, "Hey, it's all washable. And they didn't color the PT equipment. No big deal."

As my four circus clowns children and I paraded out of the physical therapy department, I overheard a mom in the waiting room say, "Oh my. Look at all that marker! I mean, don't look at them! And don't get any ideas!"

It's official. I have become That Mother.

**P.S. Remember how I thought to myself, "It's all washable"? We just finished baths, and it wasn't. I just spent half an hour scrubbing the purple spots on their faces (Little Girl added to her warpaint after the photo!). What was bright purple is now faint purple... still there. **

Elli Is Potty-Training!

I can hardly believe it, but my oldest is really interested in potty-training. We have tried it a couple of times before, even saw a specialist when we discovered that she was having some physical challenges in that area. But each time we ran into the big problem of timing -- she wasn't able to tell me she had to go with enough warning for me to get her where she needed to go. It's WAY more challenging to potty-train a child who can't speak and can't walk. She depends completely on me hearing her use her computer to tell me she needs to go (if it's working and within reach) and then physically moving her to the toilet, dealing with the clothing, and then putting her back in her wheelchair. It was frustrating to both of us, so we stopped.

This summer, she has been telling me when she needs to be changed, and I've also noticed that she stays dry for hours at a time. So we bought some underwear and yesterday we gave it a try. She did great -- she told me she had to go and actually went! I then got all cocky and laid her on the floor, with her computer in reach, and walked away. Turns out she wasn't done yet, and even though she told me, I didn't believe her. (Sometimes she says things with the computer because they are new or sound funny to her!)

So today we tried again, and this time I promised to put her on the toilet each time she told me. She stayed dry all morning, including through a shopping trip, and then went when we got home! She loves wearing underwear instead of a diaper -- it's much cooler during this hot summer. Plus I'm sure it just plain feels better on her skin.

I'm so excited and proud of her for being interested in doing this, and for succeeding at it. I'm not sure how we're going to manage toilet-training when we're away from home, but we'll cross that bridge when we get there. I know that I'm going to insist that her physical therapist start working with her on transfers -- if there's any way for her to help physically that would make this all so much easier. Right now she's a completely limp 42-lb girl, so it's a very strenuous task.

Could it be that I'll only have one in diapers during the day? That hasn't been my reality in nearly 6 years, and I never expected it could really actually happen!

Tag! I'm It

I was "tagged" to do this. It's after 3am and I can't sleep, so I thought I'd go ahead. You have to give one-word answers.

1. Where is your cell phone? purse
2. Your significant other? bed
(not sure what happened to #3!)
4. Your mother? bed
5. Your father? bed
6. Your favorite thing? sleep
7. Your dream last night? none
8 Your favorite drink? water
9. Your dream/goal? sanity
10. The room you’re in? kitchen
11. Your hobby? reading
12. Your fear? lost
13. Where do you want to be in 6 years? prompt
14. What you’re not? asleep
15. Muffins? bagels
16. One of your wish list items? vacation
17. Where you grew up? Arizona
18. The last thing you did? drink
19. What are you wearing? PJs
20. Favorite gadget? remote
21. Your pets? cat
22. Your computer? ibook
23. Your mood? frustrated
24. Missing someone? no
25. Your car? van
26. Something you’re not wearing? socks
27. Favorite store? no
28. Like someone? yes
29. Your favorite color? green
30. When is the last time you laughed? evening
31. Last time you cried? afternoon

I'm tagging Dea, Arielle, Kat, and Amy.

One in 278

I find this statistic astounding for two reasons.

One is the incomprehensibly high number of children affected by this condition. It is, at this point, impossible to reverse the damage that results in CP. And even though the doctors try to comfort us parents with the fact that it isn't a progressive disease, that is really only a half-truth. The body was designed to be ambulatory -- to walk. When a person does not walk their entire life, their body develops differently. Their hip sockets fail to form correctly, resulting in hip dislocation and often in hip reconstruction surgery. Their bone density is low, resulting in fractures. Their spines curve, causing a ripple effect I have yet to find the end of. The dominos tipped over by CP continue to fall long into adulthood.

The other reason this statistic is so astounding to me is that no-one seems to be aware of it. It took an incredible amount of effort to get the Centers for Disease Control to even do the "prevalence study" required to generate this number! If that many children are so profoundly and permanently and visibly (it isn't like a person with CP looks normal!) affected by something, why aren't newpapers, television stations, and internet media screaming about it? Why isn't more money being invested in research to identify the causes, verify the efficacy of treatments, and discover cures?

It reminds me of a bumper sticker I saw once: "If you aren't outraged, you aren't paying attention."

Basking in Today

"Who of you by worrying can add a single hour to his life? ...do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:27, 34

I've always had a tendency to live my life ahead of itself. I find myself constantly thinking ahead, making plans A, B, C, D, and E; anticipating every possibility, trying to set things up just right so that everything flows seamlessly and according to my plan.

Obviously, this causes a great deal of stress, particularly because the process of trying puts me through all these different scenarios in my head. Then, inevitably, what really happens is different than any of the scenarios I created. So all that effort and strain and lost sleep was futile. Worry did nothing to change what actually happened. Worry didn't help me in those moments -- God's grace helped, just as He promised. On the contrary, worry created all these false moments prior to it. And worry robbed me of the joy of the days leading up to the actual event.

Over the past few years, I've gradually begun to see this for what it is -- failure to obey Jesus' command in Matthew 6 to not worry about tomorrow but focus on today. Through many many failed attempts to anticipate the future I began to realize that I was trying to play God -- I was trying to control what would happen. And since I am not God, I failed every single time.

But recognizing sin for what it is-- that is only a first step. The next step is to stop sinning and start doing the right thing.

A month and a half ago, I was preparing for my son's heart surgery. The preparation part was fine, but I was also anticipating all the many ways it could go, including how it could go horribly wrong. I found myself in tears on the floor more than once, thinking about how easily we could lose him.

And then his surgery was postponed for two whole months. Within days, we also learned that our daughter's heart surgery was also postponed until sometime next year.

Suddenly the summer we thought we were going to have dissolved and new one began to take shape with a whole new set of uncertainties. It was a firm reminder from God that I am so very not Him and so very much within His plan, not the other way around.

I'm a very slow learner, but this was almost as clear as writing on a wall. I realized that He had given me the gift of more time to get it right.

So I've given back my pathetic attempts to create the future and anticipate everything.

By His grace, I've worked hard to put the future out of mind and enjoy each day.

Instead of imagining how things could go wrong, I've been reading and studying more about the God we serve.

Instead of crying at the possibility of loss, I've dragged my mind back to the here and now and focused on enjoying each little smile, hug, silly antic, exploration of the kitchen trash, and even the dirty diapers.

I still have a long way to go. Treasuring the opportunities to teach my children through their many quarrels and discontents is very difficult. Looking at my daughter's beautiful smile or my son's dazzling blue eyes still occasionally bring tears to my eyes.

But I have discovered many blessings in just enjoying each day as it comes. I'm more relaxed and able to respond to the children more calmly and lovingly. The unexpected hasn't been quite as difficult to adjust ourselves to. Things that would normally have irritated, frustrated, or angered me are more likely to amuse me now. My sleep has been longer and more peaceful. And I've even let go of some of the chores that normally would have prevented me from seizing opportunities to just play with the kids and take advantage of the summer's less structured schedule.

And here's a paradox: each moment that we've wallowed in this summer has glowed brighter and more beautiful in the knowledge that we do not know many days we have with one another.

Somehow, I think that is the way God wants me to carry the experiences He has brought us through over the past 8 1/2 years and the realities we live with today. They should remind me to bask in each happy moment and soak up every drop of joy possible. They should not overwhelm me with grief at a loss that is yet to come.

Each day has enough trouble of its own.

When God allows a new challenge or a new pain or a new loss... if He brings my children back to Himself before I go, that will be the day to grieve.

Not before.

Supernatural Geography

We put up a huge map of the world in our dining room about a week ago. My husband wants to mark off where the missionaries are located that our church supports. We'll add their pictures and most recent letters to help our whole family pray for them regularly and specifically.

The kids are quite fascinated with the map and have asked what many of the different colors and shapes mean. We're delighted that they are so interested. But we've also been stumped a few times already.

Today, Little Girl asked, "Were (where) is 'nited States of 'Merica?" (We've been talking about cities, states, and countries, and she's learned our country really well.)

I pointed to the continental U.S. and to Alaska and showed her where our city is. She pointed to a pink area (Russia) and we talked about how you have to cross an ocean to get there and it's really far away. Older Boy pointed out Australia, so I told him what it's name was.

He said, "Wow Mom. That's far away. It would take a long time to drive there."

I explained that all the blue on the map was water, so you can't drive to Australia. I said we could take all day to fly there or we could take many days in a boat. Little Girl and Older Boy announced that they want to go there with me some day. (Yes! I can't think of anyone better to go with than my family!)

Then Little Girl asked about Africa, so I explained that it had many countries in it. Then I pointed to the Middle East and showed them where Israel is. I said, "This is where Jesus lived, and David and Samuel and Joshua and those people we read about in the Bible."

Obviously making connections to her Sunday School lessons and Bible stories, Little Girl started scrutinizing the map and asked, "Mom, were is heaven?" I know she expected me to point to another shape on it.

"Uh... well..." I stammered. "Heaven isn't on here."

Older Boy jumped in, "Where is it then? How far is it?"

I decided to be honest. "I don't know."

(Fortunately, they were satisfied with this... for now.)

Five Things

Five things I was doing ten years ago
I was living in a new city and trying to find a church home.
I had just begun my first "real" job as a technical writer for a computer hardware and software company.
I was learning hard lessons about youth and arrogance.
I was planning a wedding.
I was counting down the days until our long-distance relationship would transform into a marriage (he was still living 500 miles away from me at this time).

Five snacks I enjoy
Popcorn
Ice cream
Banana and peanut butter
Tortilla chips and guacamole... actually, anything with guacamole
Coffee

Five Things on My To-Do List Today
Make something to bring to the church picnic after church
Bring the music for the new song we're singing at church
Take the DVDs back
Pick up Elli's prescription at the pharmacy
Run to IKEA for a new chair

Five Things I Would Do If I Were a Billionaire
Pay off our house and build a fully-accessible one for Elli
Establish a program to help middle-income families with medical expenses
Start a foundation to provide financial help to couples who are struggling with infertility
Fund research into cerebral palsy: causes, treatments, prevention, and cures
Run for president

Five Jobs I Have Had
Teller at a credit union
Lifeguard
Trimmer/prep at a plastic mold in a toy assembly factory
Trainer and technical support person for the new computer system at a small moving company
Adjunct professor of writing

Five of My Bad Habits
Picking at the skin around my fingernails
Staying up too late
Spending too much time on the computer and too little time in prayer and Bible study
Piling papers up instead of putting them where they belong (mostly because I can't decide or remember where they belong and I'm too busy)
Trying to do too many things at once

Five Places I Have Lived
Ohio
Arizona
New York
Indiana
Hawaii (does a 1-week honeymoon count?)

Five People I Would Like to Get to Know Better
Arielle
Michelle
Kathy
Kristin
K.C.

Five Random Things About Me
I didn't like or drink coffee until just about 5 years ago
Most of my college friends are shocked to learn that I have 4 children and love it. Apparently I didn't seem like the type when I was in school.
I don't like to shop. (But my husband does.)
I don't have it all figured out or all together. Not even close. I have tons of questions, very few satisfactory answers, and most of the time feel like I'm hanging on by a thread. Seems that's right where God wants me.
Now that I've almost finished this, I think doing a meme is a pretty self-absorbed activity. *sigh* Why do I tend to only see these things after I finish?

Comedy at the Dentist

We went to the dentist today and they informed Older Boy that he has two teeth that are just starting to get loose. They won't fall out tomorrow, but they are on the way.

Tonight, as we were setting the table for dinner...

Older Boy: "Do you want to know why I asked for corn on the cob for dinner tonight Mom?"

Me: "Why?"

Older Boy: "Because I want my tooth to fall out NOW."

Me: "How does eating corn help your tooth?"

Older Boy: "Cuz if you eat anything hard, then your tooth will fall out."


-----

The dentist appointment was 11am today. They were so good with Little Girl, who was going for the first time. They told her she had beautiful sparkling teeth when it was all done.

This evening, around 6pm, Little Girl asked, "Mom? Are my teeth still spark-oh-wee?"

-----

Little Girl is now obsessed with the idea of her teeth falling out. Every bite she took tonight, she announced, "My toof didn't fall out yet. ... No loose teef yet. "

No matter how we reassure her that teeth don't fall out til you turn 6, and no it doesn't hurt, and getting adult teeth doesn't hurt either, she constantly checks to make sure nothing is loose.

It's Always the Middle of the Night

I always seem to discover new wrinkles in Elli's health in the wee hours of the morning. Maybe it's because I'm less distracted or less focused on the task at hand. Maybe that's just the way this world works.

I'm up at 12:53am debating with myself about the urgency of my latest finding. I've been watching it for the last few days, watching it worsen. And tonight it is so bad that I'm now fully convinced that a doctor needs to know.

But which one? The doctor most appropriate just left the team he was on, and I have no idea who is taking over. Well, I have a name. Or I did. In a letter that I probably sorted through yesterday and pitched as irrelevant. Drat. I always do that. Reason number 1294 why I don't get rid of paper.

OK, so maybe I just pick someone. They'll tell me who to call if they aren't the right one.

But when should I call? Tomorrow is the worst day I could possibly pick to call -- the hospital launches a whole new computer system for the call center and scheduling tomorrow.

I could page someone. But I really don't think this is that urgent. It can certainly wait until normal waking hours. But it can't wait too long or she'll get seriously ill. I wonder if they'll do surgery? Maybe we can change some things around or bring in some new equipment...?

Should I email them instead? (If I email, I can do it Right Now and feel like I Did Something.) Again the question of who, plus the fact that it is actually almost 1am and perhaps that's a little weird.

Ok. This is getting ridiculous. (Or I'm just now realizing that fact.) I have to go to bed. Surely six hours won't make that big of a difference. Except that I get a front row seat to the "Big Bang" as they are affectionately referring to this computer system switch-over. It's a good thing I stocked up on popcorn Saturday.