John Testifies

I just thought you'd like to know that John is in a VERY happy mood today. Both his teachers told me he had a wonderful day. He made a new friend named Jason. And his primary teacher told me that he had the best witness today - he stood up and told everyone how he had prayed and asked God that He take his tummy pain away and HE DID! He's very excited that his stomach is feeling good. He told me that he's never going to tell me again that it hurts and that it's good as new. He must be feeling pretty good today! And wouldn't it be great if he's right? It's very exciting.
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Boys!

Ok. Things have been pretty stressful around here lately, so I was definitely not laughing tonight. I can at least see that it will be funny at some point in the future - and probably something I can razz John with when he's older.

Tonight I came upstairs to put him in bed. He was supposed to be in the bathroom brushing his teeth. Ted was reading a story to Emmalee in her room with the door closed. Instead of brushing his teeth, John was kneeling at her bedroom door - on beige carpet - trying to caulk it shut with bright blue toothpaste. Took him a while to clean that one up.

Boys!

Looking for a good home

for my dog, Casey.

Hi guys. I'm sending this to all my friends, family and acquaintances that might want or know someone who would want a great dog. He's a 2 yr. old Australian Shepherd/Chocolate Lab mix. He's very sweet, gentle, intelligent and eager to please. He doesn't have any bad doggy habits like chewing, digging, barking, or jumping up, and he is absolutely non-agressive.

The reason I'm having to find another home for him is because I got him from a rescue organization about a year ago to be a dog for my preschool age kids, but it turns out that he'd really rather be anywhere else than with the crashing, banging, yelling chaos that reigns in my house. He has a very sensitive temperament and retreats as soon as my kids come near. He would be a great companion dog for a single person, an older couple or perhaps a family with much older children. He enjoys being with other dogs and is non-aggressive toward other household pets. His greatest joy in life is going for rides in the car and he loves going for walks.

We think he might have been abused in one of his first homes because he is so very sensitive natured. He doesn't know how to play but obviously would like to. He is truly a great dog and deserves a place to live where he could be happy and be best friends with his owner. Do you know anyone who might fit this description that might be interested?

I appreciate any time or thought you could give to this.

Casey Is Strange

Casey is being freakier than normal this afternoon. He spontaneously (as Emmalee and I were sitting on the couch reading a book and John was playing quietly with a toy) went over to the TV cabinet, and started whining and shaking with his head down. I looked around to see if anything was amiss around the house, but couldn't find anything. The fireplace has given me some fits this morning. A couple of logs insisted on playing lemming and two different ones burned off and fell against the glass (and they weren't far forward, either). Then when I was trying to move them farther back, one fell apart and shot coals out onto the carpet. There's a big melted spot right in front of the hearth. I made double and triple sure there was nothing burning anywhere and the fire is currently behaving itself - yet Casey is now crammed in the corner between the yellow computer cabinet and the stereo cabinet and won't come out even if I try to coax him. He just whines and puts his head down. It almost makes me nervous that there's something going on around here - like a gas leak or something - that I just can't sense.

I mentioned to John how strange Casey was acting and mused that I'd like to know what was upsetting him so much. John answered that maybe Casey wants to go home. I said "to his new home where he won't be sad anymore?" and he said yes.

Now would be the opportune time for a new owner to appear, I think!

John's latest

The other night Ted was getting John ready for bed. John was not wanting to do it by himself and Ted was "talking him through it". Finally, after listening to a lot of detailed instructions John said "Dad, you need an electronic boy who will do what you say."

Today while driving in the truck, I handed John a McDonald's Happy Meal toy that lights up when you put it in water or push on one of its buttons. John of course, knows where the sensors are for the water to light it up so he decided to try it. He said "Mom! This toy lights up with water! I got it wet with my goober and it worked!"

Also, "I don't want to do that" is expressed: "I'm not forward with doing that." Conversely, if he wants to do something it's "I'm forward with doing that."

Emmalee also said a 9 word sentence today (I've had to start counting to see what the longest ones are). It was "I want to go in there and see John." Amazing!

How to tell others

I'm trying to figure out how best to present my son John's condition to the world. I know that it should be in a factual, unapologetic way - but how do I determine who really needs to be told and how do I present it? I don't want everyone looking at him and me with pity in their eyes. I want them to see him as John, not "that poor autistic boy".

A technical description...

Quote regarding an air purifier: "It runs to testicle machines with lots of wires."

I think he meant "technical."

P.S. The reason we were discussing air purifiers is because his is all apart on the counter because it can't seem to purify all the Play-doh that got stuffed into its vent.

Nights Winters Years

Carolyn and I try to tell real-life stories to John. He loves stories of all kinds, and we want to intersperse the fairy tales and childrens books with a little bit of family history.

Carolyn was upstairs putting Emmalee down for a nap when I started to tell John stories about some of my Thanksgiving memories.

I began, "When I was a little boy, I would go with Aunt Carrie, Aunt Annie, and Gramma D every Thanksgiving to Great Gramma Emma's house."

He stopped me: "Where is her house? I want to go. I want to see her."

I was completely blindsided. Carolyn and I have told stories of her father and my grandmother before, and he's always listened with interest, but he's always understood that these people "aren't around any more."

Tears welled up in my eyes immediately, and a lump developed in my throat.

"We can't go to see her, John."

"Why not?"

"Great Gramma Emma died. She's in heaven now with Jesus."

He put his head down, and thought seriously for what, in John terms, was a long time. He was pondering what I had said.

"But I want to see her."

"We will," I said. "When we get to heaven, she will be there waiting for us."

"But I want to see her now"

"We can't. But we have pictures, and we have stories and memories."

"I want to see her house"

"We can't do that either."

Later that day, he told Grandma Karen that he was afraid that Great Gramma Emma would not be able to find us when we got to Heaven. She reassured him that we would be able to find each other when that time comes.

He's still pondering that huge, adult concept of death and what comes after. He's not hurting -- the loss is too far removed from him to cause him pain. But he's puzzled, and trying to understand.

The questions of a child very quickly point out the essence of our faith. In the adult mind, there are many thick layers sitting atop it. There are esoteric debates over terminology. There is emotional baggage. There are memories, hurts, dogmas, wishes, points of contention, confusion.

But explain it to a child, and the heart of the matter is very clear.

John Update

We spent 6 hours at Riley Children's Hospital on Saturday -- Carolyn, John and I -- because John's abdominal pain had still not been diagnosed, and because now he had a fever. His cardiologist had warned against complacency with unexplained fevers; risk of an infection traveling to the heart is still elevated. Our family doctor's office had referred us to Riley Emergency on Saturday afternoon. The doctor at the family practice wanted a CAT scan of his abdomen looking for "growths" or tumors.

Karen watched Emmalee while the rest of us went to Riley. Carolyn and I were pretty sick while driving to Riley. It was such a heart-sickening sense of deja vu.

But, thankfully, we emerged 6 hours later feeling better. It was a rough ordeal for John -- another blood draw, another X-Ray ... but we at last had some answers. Big sigh of relief. And a bit of a chuckle and shaking of the head in disbelief.

As it turns out, John was just feeling poopy. Did you know -- preschoolers can get constipated?

With John's gastroenteritis (stomach flu) in March, and his sinus infection, he was on various medicines over the past couple of months. These medicines, and the original stomach flu itself, messed up his system. It disturbed the normal flow, shall we say. An adult can articulate, and
even diagnose, the problem. Not so a small child.

How could we go this long without knowing it? Because he continued to go to the bathroom -- #1 and #2 -- every day. Did you know that was humanly possible -- to be stopped up and still go? Apparently it fooled the doctors at our family practice. It took an abdominal X-Ray to reveal the cause.

I was sure I would see the black-and-white image of some ingested toy causing all this problem. A Robin Hood action figure firmly wedged in the appendix. Something like that. But no, just a backlog.

Treatable. Unthreatening. Uncomfortable, but mundane. Whew, big sigh of relief. Thanks for all who showed their concern for John. Hopefully he's on the road to feeling better.

It's Hard To Make A Stand

John likes music. He's been enjoying a Sheryl Crow CD lately. One of the
songs on it has the repeated line: "It's hard to make a stand..."

John was cutting out comics from the Sunday paper, just for fun, right
before bed last night.

The CD ends, and Carolyn says, "John, it's bed time."

He looks at her. "No! It's cutting time!"

She persuades him to go upstairs to his room. Once there, he starts to
play with toys instead of getting ready for bed.

Carolyn again chides him, this time to the tune of the Sheyrl Crow song.
It has the same number of syllables: "It's time to go to bed..." to the
tune of "It's hard to make a stand..."

He looks at her, and counters, in the same tune:

"It's time to play with toys..."

John Update

Not much of an update, but such as I have I will give thee.

The symptoms continue. They are not constant, but he does have them at least once a day. He's not unhappy or out of sorts.

The blood tests all came back normal. Carolyn is going to try to get him in to see the doctor today for a hernia check, and for a urinalysis.

We will keep you posted.

John Update (Stomach Pain)

Here's the news on John's health.

Today's News:

We're taking John to get some tests run at the Hospital tomorrow. He has not really been his energetic self since he had his bout with stomach flu in March.

Periodically he has complained of stomach pain. >From time to time he says "I don't feel good." We find him putting his head down for a brief break while at play. Even at his swimming lessons he made his way to the side of the pool and put his head down.

Lately, he has even grimaced while telling us his stomach hurt. And, he says, his back hurts. He complained of his chest hurting right after the flu, and the doctor thought he heard some bronchitis. But by now he has completed a 15 day course of antibiotics, and has no sign of bronchitis or upper respiratory infection.

When he complained of his tummy and chest hurting, he was checked for Mono, and the accompanying enlarged spleen. Because his dad was diagnosed with it recently; it was considered a possibility fhat these mysterious abdominal complaints were related to Mono. But the tests were negative.

Have you ever heard of a 3 year old complaining of back pain?

We're taking him to the hospital to get a complete metabolic lab done tomorrow. It means drawing blood, which is traumatic. They are looking for things like a thyroid problem, etc. We have no way of knowing how serious the pains are, except to judge John's behavior -- and he is clearly not his happy post-surgery self.

Your prayers are appreciated. We will keep you posted.

Mr. Lion

Mr Lion certainly has an auspicious position in John's life. He's the chief of all stuffed animals. Others may come and go from his bed, but Mr. Lion is always there. Lately John's been attempting to prolong his nighttime ritual (Can you sing me one last song again? Can you sing another one last song?) But I tell him no, it's his turn to sing Mr. Lion to sleep. Mr Lion's favorite song, by the way, is Twinkle Twinkle Little Star.

Little Sister

John loves having a little sister. She smiles whenever he walks into the room, and he just beams. It's been an adjustment for him, but he's doing great. And she's such an easy-going baby. Smiles all the time. John was never that way.

Open-Heart Surgery

John came through his open-heart surgery just fine. He underwent surgery yesterday to repair a large hole between the left and right ventricles of his heart. He was in surgery for about 4 hours. He's in intensive care, but may be moved out of ICU as early as this evening. Mostly he wants to get up and explore, and would -- if he could just free himself from the wires and tubes attached to him.

Thanks for all your prayers on John's, and mom and dad's, behalf. Please continue to pray for a complication-free recovery. I'll send further updates as time permits.

Before I was a mom

Before I was a Mom

Before I was a mom.............
I made and ate hot meals.
I had unstained clothing.
I had quiet conversations on the phone.

Before I was a mom
I slept as late as i wanted
and never worried about how late I got into bed.
I brushed my hair and my teeth everyday.
Before I was a mom
I cleaned my house each day.
I never tripped over toys or forgot words to lullabies.

Before I was a mom
I didn't worry whether or not my plants were poisonous.
I never thought about immunizations.

Before I was a mom
I had never been puked on
pooped on
spit on
chewed on
peed on
or pinched by tiny fingers

Before I was a mom
I had complete control of
my thoughts
my body
and my mind.
I slept all night.

Before I was a mom
I never held down a screaming child so that doctors could do tests or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.

Before I was a mom
I never held a sleeping baby just because
I didn't want to put it down.
I never felt my heart break into a million pieces
when I couldn't stop the hurt.
I never knew something so small
could affect my life so much.
I never knew that i could love someone so much.
I never knew i would love being a mom

Before I was a mom
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a Mother and her child.
I didn't know that something so small could make me feel so important.

Before I was a mom
I had never gotten up in the middle of the night every ten minutes to make sure all was ok
I had never known the warmth
the joy
the love
the headache
the wonderfulment
or the satisfaction of being a Mom.

I didn't know I was capable of feeling so much.............
before I was a mom.....

Good news on John

We went back to Riley on Tuesday and it may be a while before you hear from me again on John because he won't need to see the cardiologist for another year! Yea! He's doing so well that the Dr. feels we can wait that long to see if the heart will heal itself even further.

Once again, the Dr. didn't back down on the percentage chance that John will have to have heart surgery - that still stands at 90%, but he was very impressed with how well John is doing. He's growing like crazy (less than 15 months old and already over 34 inches tall), which is a really good sign. Plus, the tests show that the blood pressure through the hole in his heart isn't as much of a problem.

The great news for mom and dad is that starting in May, John will be able to play with other children. I'm so happy for him and for us. Now that we don't have to be quite so protective, life should assume a more normal quality. The enforced isolation was hard to work around sometimes - and he's starting to need the socialization.

Just thought you'd all like to know. Thank you for your prayers and concern.

Sicks Weeks

For six weeks around January, I couldn't take John anywhere because of the flu that was going around. Since then, I've resolved every week to come down for lunch and haven't made it. There was also a week in late Feb. where he was very sick because of some antibiotics he was on. He had to take them because he fell and split his chin open on the kitchen floor while demonstrating his new walking skills. Got three stitches! His Dad has a scar exactly like it from when he was about a year old too.

Not Walking Yet

The snow is beautiful. We're going through our firewood like crazy. I've kept the fireplace going ever since our weekend away. I got hooked on it, with having one in our room. =) It keeps it nice and cozy while the snow is falling. It's been wonderful.

John's doing great, but he's not walking yet. I don't think that it's because he's not capable. I just think crawling's easier. He has the balance and the strength, I just don't think he has the motivation yet.

Little booger.

John Update

I just wanted to let you know what the latest is on John's heart. Ted and I took him to Riley Hospital for Children on Tuesday. He had spent the night at Riley a month ago after getting a slight cold. Due to his heart condition, his lungs started filling up with fluid and they put him on some medicines to control it and regulate his heart. Tuesday's visit was a follow up to that.

His cardiologist was very pleased with Tuesday's test results. He said the blood pressure numbers on each side of the heart are improving. That's exactly what they're looking for. He also was pleased with how well John is doing in general. He's eating well and growing like crazy. That's unusual for a child with such a large hole in his heart. He said there is still a 90% chance that John will eventually need heart surgery. However, we may be able to wait quite some time (years, maybe?) before he has to have the surgery. The bigger John is, the lower the risks. There's also the chance that John will fall into that 10% category and have the hole close enough that he won't need the surgery at all.

The great news for us is that his doctor thinks that in a few months, John could be doing so well that we can take him to open-play situations like the church nursery. Right now, we still have to be very careful to keep him out of situations where there is a high risk he could be exposed to
bacteria for colds, etc. We go back in April for another run of tests to see if John is continuing to improve.

We are so grateful to God for keeping His hand on John. We are so grateful that he is doing so well and that we have an excellent hospital nearby that was able to quickly diagnose and control the fluid that was starting to build a month ago. We are also grateful to many of you for keeping us in your prayers. Thank you so much.