We are moving again

Just kidding, Just kidding! We aren't going anywhere. But if we were and I got to pick, James would pastor this church.

It sits on a ridge in Valle Crucis, about 5 miles outside of Boone, NC. And we would live in this house, just down the mountain.

Picture ferns hanging between every other beam around the porch. Black Eyed Susan's and Shasta Daisy's growing wildly around the foundation. A tire swing hanging from the big oak. The boys running around playing, throwing frisbee. Fresh squeezed lemonade and homemade cookies awaiting them on the porch. Laundry hanging in the back yard absorbing the fresh mountain scent. Screech! Okay, I have taken this little dream of mine a bit too far.

Anyway, a girl can dream.

Our Mountain Vacay

Thanks to some very generous friends from Florida who own a home in Western North Carolina we were able to head for the hills for the better part of a week and take a break from our summer routine and the oppressive heat. Our days there were well worth the agony of driving the few hours up with our kids, who have developed an aversion to their car seats.

The temperature was perfect with lows in the 40's and highs in the 70's. We slept with windows up each night and woke to the sound of what seemed like thousands of birds singing outside our window. The only problem with this? They started around 5.30am. So that is when everyone woke!

We decided we would not be eating out on this trip. One, to save money and two, well, it just never seems to go that well when we take the boys to a restaurant. We have put those outings on hold until Timothy is five. So every morning I cooked a pancake breakfast, much to the delight of my men who are pancake eating fools! We picnicked for lunch and cooked a meal at the house every evening. This was far more cooking than I typically do at home!

Wil, who is a great eater, was delighted with everything put before him. Warms a mother's heart I tell ya. And despite my best effort at teaching these boys some table manners there was always something like this going on.

Showoff!

Each morning we went exploring to places like Grandfather Mountain where it was cold and windy at the top. So windy this suspension bridge swayed over the very very deep crevasse below.

But the view was amazing and Luke couldn't stop talking about the fact that we were at the top of the giant mountain we could see from our cabin.

A fun aside - as we were walking back across the bridge we were stopped by a photographer for a local magazine who requested to take our picture for the cover of their next issue. We were flattered and said yes. Since they don't have a website we will probably never know if we made the cover but it was fun.

We also took a stroll through the habitat. The bears were the most entertaining. Although Wil and Timothy, who repeatedly made their best bear sounds, were pretty entertaining as well.

Timothy loves to be outside. He is very observant and pointed to nearly everything we passed with his "uh uh" sounds. We have learned that when he makes this sound, accompanied by pointing, he wants answers. What is it? What does it do? Why does it move that way? We spent a lot of time answering Timothy's "uh uh" questions. Which always made him happy.

We also visited Valle Crucis. A quaint little town that is famous for being home to the original Mast General Store, which is still standing. Behind the store is a corn field. Behind the cornfield is a great playground and park with a stream running beside it and fabulous views on every side.

A little Soy Milk break and they were back at it. Wide open spaces - it's just what these guys need!

On another day we took a short hike to Linville Falls. With every outing James had a pack on his back with either Wil or Timothy on board. And often the other in his arms because they just can't stand for daddy's attention to be off them at any time.

Luke climbed root exposed trees and I answered Timothy's "uh uh's" and tried to keep him from falling into every stream we passed. And then there were the falls, as beautiful as we remembered.
Our favorite time of the day was walking up the mountain on which our cabin was located. It is home to a Christmas Tree farm, or two or three, so the smell of frazier fur and hemlock was in the air. It was a tough walk, the views were great, and the company better. It was a great way to end our days.
The Christmas trees were at various stages of development all over the mountain.
From the top we could see into town, we could see Grandfather Mountain and the many ranges surrounding him. And we could sit and rest, take in the fresh air, the smell of the trees, the beauty of all the wild flowers. And I could let my muscles calm down from the walk up. I tell ya, if I had that to hike up every day I wouldn't need my gym membership. Not that I use it anyway. But that is another story.
It was a great trip and unlike some past vacations we really managed to slow down and take it all in.

Kennedy

The little girl to the right, Kennedy, is on her way to Shriner's in PA. She is about to undergo the spinal surgery we thought we were facing with Wil. She has AAI, atlanto-axial instability, as well as AOI, atlanto-occipital instability. The instability between her occipital bone and the first vertebrae is so significant that when diagnosed she was placed in a neck brace until her surgery in order to protect her from a "major spinal event." Her mom, Renee, has been jumping through all the hoops for the last several weeks to prepare for this surgery. Renee by the way has three other children, Kennedy is the third, and her husband is currently serving in Afghanistan. He will, however, make it back for a short leave to be with the family during Kennedy's surgery.

Please check Renee's blog to read more about Kennedy. This little girl has been through a lot in four years, including leukemia. If you are a pray'er, please, pray for Kennedy and her family. They will be living in a hotel for a month to be close to the hospital for the weeks following Kennedy's surgery. Do I need to tell you how challenging this might be with four kids? Adjusting to the halo will be a big deal for them all as well. So, check in with them regularly and if you can leave a comment to encourage them!

The Pastor's Kid


Almost a week has passed since the following happened. I can now look at the "incident" with some humor and am ready to share it with you, our kind readers. This story is filled with parental mistakes - see how many you can find!

Last Sunday, Father's Day, Luke asked to go in to church with James. Our services are at 5 pm so this meant going in around 2.30 or 3.oo while James did some last minute work on the service and his sermon. His Father's Day sermon. We agreed to let Luke go as long as he took some things to do. He was happy to oblige and filled his backpack with various books and craft material. For the most part Luke was able to entertain himself for the 2.5 hours before the service began. He did not, however, get an early dinner which I have come to learn is very necessary with the timing of our service being what it is.

When I got to church Luke made his usual request, "Can I go to the service with you?" We have been allowing Luke to sit with us, rather than go to his class, the last few weeks. The deal is that he has to sit still (as much as can be expected) and work on his math or letters or something. He has done pretty well with this with James or me or a friend's dad sitting with him. On this particular Sunday James was preaching and Timothy was not going to allow me to part from him which meant I was going to be in the "cry room" at the back of the church. His friend's father was not around either so Luke would have to sit alone. He "promised" that he would be fine once James left his side to go to the pulpit. That he would sit and draw. And I, well, I believed him. And this kid, lemmetellya, is sooo convincing.

So, Timothy and I are off to the cry room after depositing Wil in his class and having one last conversation with Luke about what was expected of him. I could not see Luke from the cry room so I was oblivious to what was taking place during the service. During James's sermon. This Father's Day message. When the service was over and I wandered into the worship center a small crowd formed around me all with the purpose of telling me how out of control me eldest child was during the service.

You should know that James was preaching on Psalm 112. He was talking about our reverence of God. He was talking about how God delights in us, his children. He was likening this to children having a healthy fear of their own father. He shared his own delight in his kids - how much more so does the Lord delight in us? Somewhere in the midst of this Luke got bored. Boy did he get bored. The crayons and paper no longer held his attention. The adults all around him did not deter him. He was going to entertain himself and taunt the adults behind him whose hands were tied. What could they do in the middle of a worship service after all? Luke began crawling feverishly back and forth along the empty pew James left him on. Peaking over at our friend 'D' as if to dare her to get him. Then he would crawl to the other end holding up his shoe or a bible, dangling it in front of another innocent adult like a carrot. At some point our friend 'D' and our friend 'J' managed to get Luke to their pew, seat him in between them and get him occupied. They thought they had him hooked with a pad of paper and a pen. Then, in a flash, before either of them could respond, Luke scaled the pew. That's right, scaled the pew! (Please keep in mind that they are in the very front of the church) About this time James feels he has no choice but to speak to Luke from the pulpit, in the middle of his sermon. He attempts to be playful by saying to Luke, "Luke do you need me to put the fear of God in you? Can you sit still please?" He says yes and moments later one of James's friends had mercy on us and took Luke to the playground for the rest of the service.

The rest of the evening was so hard for Mr. Luke. He cried all the way home because he was told that he lost his privilege of sitting in the adult service. And when I say cried I mean wailed and groaned and gnashed his teeth. And the real torture for Luke was that his brothers, who were both so perplexed and amused by this behavior, mimicked him the entire ride home. Actually I think I was the one most tortured!

So there you have it. The pastor's kid, at five, already developing his reputation of being rebellious.

But he is sorry. He is very very sorry. He said he will "never jump over pews during a church service when dad is preaching again, especially on Father's Day."

Random Findings

My day, apart from hanging with the boys, consists of picking up clothes, washing clothes, folding clothes, putting away clothes, ironing clothes, cleaning sticky spots off the hardwood floor, spot cleaning the sofa, carpet, and rugs, doing dishes, unclogging toilets, pulling toys out of the umbrella stand, fireplace, and trashcan, and. . . well you get the idea. I am moving around the house. A lot. In and out of rooms, in and out of closets, up and down the stairs and definitely in and out of the laundry room. As I do this I make many interesting discoveries. Here is a sampling from one day:
This rotting banana peel was found in Luke's closet. Thankfully, it appears to have been there for only a few hours. When I asked Luke why the banana peel was in his closet he shrugged his shoulders and responded, "I don't know, seemed like a good place to put it."

What is all that noise in the dryer?! Oh, it's a ?, a washer, rocks, a nail (!), a marble, rubber bands, and a toy magnet - presumably collected by Luke and put in his pockets. Pockets which I failed to empty before washing.

I exit the laundry room to find my beloved Pirate's Booty was scavenged by Wil and Timothy who polished off the bag and ripped it open to lick the crumbs. They scampered off when they heard me coming around the corner. Little Rats!

And before I can clear the table from breakfast the youngest Rat dumps a full cup a milk. And he laughs and laughs. Evidently watching liquid fall from a cup - which he is experiencing a lot lately - is hysterical! But not to Luke who was filled with angst when the milk hit his morning craft.
Later in the day I went to empty this little coin bank of Luke's, a silver Noah's Ark. It was a gift he received from a family friend when he was born. He has a much larger piggy bank from his uncle Ricky so I thought I would transfer the coins in here to the larger bank and move this one to Timothy's room so that he can start putting his own coins in. Here is what I found in this coin bank:
Acorns, but of course. What else?

What I didn't capture on film from this day was the contents of the bathroom trash can emptied into the toilet. Compliments of Wil. Swift action was necessary so there was no time to grab the camera.

What random things do you stumble across during your day?

I'm Speechless

Those are the words that rolled off the tongue of Wil's neurosurgeon today.

I mentioned here - or somewhere - that I was really praying that once the scans were reviewed by Dr. S we would hear something to the effect of, "I have never seen anything like it - the gap is gone."

Essentially that is what we heard today. Dr. Smith called on my cell as I was about to enter the grocery store. In a nutshell here is what he told me. "I can't explain it but the width that was so clear on x-ray, that was so impressive, no longer looks threatening. AOI is not an issue but most noteably the 7 mm gap revealed on xray at the AA joint ranges from 3.5 - 4.2 with flexion and extension. To be frank with you I am a bit speechless, I fully expected to be contacting you to set up a surgery date."

I asked him if the xray may have been misread. He said, "no, not by Dr. L or me. I really can't explain it but am happy to give you this good news."

He wants to see Wil back in one year to repeat the MRI and CT scan but for now he has no restrictions!

We praise God for His mercy on Wil and are humbled today by this gift from Him.

Today's Hospital Adventure

We arrived at outpatient surgery at 7am with a hungry Wil. Poor guy he repeatedly signed "eat" and "milk" but we could do nothing for him. But thankfully a children's unit has plenty to preoccupy hungry little one's waiting on procedures.
There were cool games with Wil's favorite animals - cows and sheep.
We did a little reading in between seeing the nurse and waiting to speak with the anesthesiologist.
But Wil, being his father's son and all, became bored with Baby Einstein and moved on to loftier subject matter.
And then Scan time arrived. The anesthesiologist and his team are getting ready to sedate him here.
or not. He really wasn't too interested in what they were doing. Thankfully sedation works pretty fast.

He will be out in no time. We were grateful they did not have to intubate. The goal was general anesthesia through some breathing contraption but if he put up a fuss they were going to have to intubate. No one wanted that considering the whole reason we were there was neck instability. Only one issue came up that we had to push on a bit. The neurosurgeon that ordered the scans did not order a flexion and extension view. I was given good advice by Renee to make sure that we get those views, otherwise we will end up having to repeat the scans. Dr. Betz also wanted those views. At first the tech said, "if Dr. Smith didn't order it we can't do it." We politely pushed this point explaining our reasons. Reminding them that we don't want to have to repeat these costly tests, etc. After discussing it with the Radiologist they agreed to do flexion and extension. So yay, small battle won. And again, many thanks to Renee for giving us the heads up on that one!


On the other side of it Wil was happy again. Well, once he got something to eat that is. He was downright crabby when he woke up. But we won't show that side of him. :)

And now we are back in waiting mode. We took two copies of the scans with us. Dr. Betz should receive his copy tomorrow afternoon and once he reviews it will contact us. Our neurosurgeon here should be in touch with us some time next week. We are told if we don't hear from him by Tuesday to call. Hopefully by the end of next week we will have some idea of our next step.

And then Sunday we leave for vacation to Boone, NC. Ten days and counting!!

Scans

Tomorrow morning Wil has his CT and MRI. This should answer a few more questions for us about our next steps. We will also be sending copies of the scans to a doctor at Shriner's Children's Hospital in Philidelphia. This doctor was recommended to us by a friend from the Down syndrome community, Renee, who has a daughter, Kennedy, about to undergo spinal fusion for AOI and AAI. Dr. Betz has a great deal of experience in spinal fusion and has agreed to review Wil's scans. We are so grateful to him for that. And to Renee for pointing us toward him. If you have some time please say a prayer, or two, or three for Kennedy. If you take some time to read her story you will quickly see that she has been through a lot in her four years.

We will likely not get any definitive answers tomorrow but when we do I will let you know.

Did I mention. . . ?

that Wil is walking!
We are so stinkin' proud of this boy! He continues to work
hard. He reverts to his bear crawl when time is of the essence
but for the most part he has found the strength and balance to
to walk on his shapely little legs.

Running and Riding

One week ago we headed to the mountains so that James could torture, I mean, challenge himself physically. The weekend was all about his races and we - Luke, Wil, Timothy and me - were his support team. Getting him to his races and cheering him across the finish line. The first race was the Rock2Rock, a challenging run up, over, and down a mountain. The race begins and ends at a beautiful camp for boys called Camp Rockmont. A camp we hope our boys will attend one day.

It was a grueling race, just as James remembered, but he finished in good time improving on is time last year by several minutes. He placed 38th out of the 130 or so that ran. And this is the best picture I got of him crossing the line - a certain 20 month old kept pulling on my shirt tail.

Wil and Timothy enjoyed cheering as the runners crossed the finish line. Luke on the other hand was completely uninterested because the runners wouldn't stop to talk to him, so he found someone that would. Pretending to be a bull with horseshoes is much more interesting than watching a bunch of people run.

James talked a fellow pastor from our fair city into driving up for the race. He was smiling at the end even though he predicted he would be limping for two days following. He also enjoys torturing, I mean challenging, himself athletically. I am glad James has friends like this as I have no interest in breaking a sweat.

After the race we joined our friends, who graciously allowed us to invade their home for a little homemade spaghetti, good conversation and a good nights sleep (Thanks Renda and Doug). James, however, had to delay his meal because I left the stroller in the parking lot of the camp. Yup, just drove off and left it behind the van where I had intended to fold it up and put it away - with James's wallet and a few other less valuable items in it. We really like to complicate our lives and find ways to do so no matter where we are. Thankfully the stroller and wallet were right where I left them.

The next morning we were off to the bike race. A metric century covering 67.9 miles of the beautiful Blue Ridge Mountains. The race started and finished at Carrier Park in Asheville.


There is James in red as they head out to the two lane road that starts the course. And as I watched them ride away I wondered if I would see James again. Just kidding, kind of. I was a little worried that his muscles would fail him after the run the evening before. And then there is the fact that he had never ridden 67 miles, or any miles for that matter, at this elevation. But he did great and came rolling back into the park around 4 hours eight minutes later.

The boys were happy to see him. Not for the same reason I was, they just wanted his food. You gotta love the "me" world of toddlers. Dad is famished from a long, grueling bike ride and they want to eat his food. And you gotta love a dad who shares it with them. They did work hard in supporting him throughout both his races. And Luke? Again, no interest. He stayed back with our friends where he had a captive audience and learned to flip coins.

So it was a whirlwind 24 hours but James got a great bike race under his belt before the big one coming up in a few weeks. And hopefully exposing the boys to the rigors and fun of training and competing will instill a love of the outdoors and athletics in them. And hopefully one day Luke will understand that these races are not all about winning. When asked about his quick trip to the mountains he replies, "Weeeell, dad lost both his races!"

A World without Down Syndrome?

Not long ago pregnant women over 35 were considered "at risk" of having a baby with Trisomy 21, Down syndrome, and encouraged to receive an amniocentesis or cvs to "rule it out." An amniocentesis, as well as chorionic villus sampling (cvs), are somewhat risky because they take amniotic fluid or tissue samples from the baby which can increase the risk of miscarriage. Many women opt out of these tests because they are not willing to take that risk.

Over the last 15 years screening tests have been developed that look at different markers in the mothers blood that, combined with age, give a "risk" ratio of having a baby with Ds. If the risk is high then the mother is encouraged to receive the diagnostic tests. These have traditionally been done around 18 weeks. More recently another marker, a plasma protein, was found to give indication of Down syndrome in the first trimester. Additionally all women are now presented with and encouraged to receive these screening tests. These blood tests are not diagnostic, they are just screenings, but many doctors are not explaining this and women are terminating pregnancies out of fear they will have a baby with Down syndrome. Doctors also are not providing an accurate picture of a child with Down syndrome. These two combined have really skyrocketed the abortion rate for those that receive a positive on these tests. The latest statistics make me heartsick. Of those that receive a positive on the above tests, 95% are aborted. Ninety Five percent!

And now there is a new test on the horizon. With this test on the market the future for kids like Wil is bleak. It is a diagnostic test that is non-invasive and apparently very accurate, at least preliminary results are indicating this. And it can be taken as soon as a positive pregnancy test is received. So women will be able to find out if they are pregnant with a child that has Ds before they even have their first bouts of morning sickness, first ultrasound, a growing tummy, or any time to bond and feel the baby they are carrying, before anyone even knows they are pregnant. This will be appealing to many many women who would have normally opted out of other diagnostic testing that was too invasive.

I simply do not understand what is fueling this drive to eliminate an entire people group. What is so scary about having kids like Wil in this world? Why are people with this kind of compassion a threat? Take a moment to read about the impact that Shellie Eyre had on her classmates. I'd say we need more people like this, not less.

It grieves me to know where we are headed. It grieves me to know that so many parents-to-be are grossly misled when receiving a positive pre-natal screening or diagnosis at a time when they are confused and scared. It grieves me to know that so many people in powerful positions believe that my son, and so many precious individuals like him, are such a burden to society that they should not even be born.

Dreamnight at the Zoo 2008

This time last year our family attended our first Dreamnight at the zoo. It is a really nice night designed to create a fun, safe environment for kids with special needs and their family. Everything is free, including dinner, and there is something going on around every corner. From a steal drum band to hoola hoop lessons to a dance floor. And of course there are the animals. Last year was nice but we left early because Luke started feeling bad which turned into round 15 of stomach virus for our family. This year everyone was well and, apart from the 100 degree heat, it was great fun for all the boys.
Like last year there was much fanfare at the entrance including bubbles and a tunnel of welcoming, smiling, and cheering volunteers that made the night possible.

You can't see it here but we were standing in front of big fans blowing mist. The young man and girl to the right are two sweet teenagers, also with Down syndrome, that were having a blast together. We ran into them at least three times during the evening and they were always laughing and cutting up.

Watching the bubbles. woooooooo.

Timothy enjoyed the merry-go-round although he was a bit skeptical.

And the big hit of the night? Dancing. Wil is not loosing his balance here. He is dancing. And he is dancing with confidence. Here he is slapping the ground and returning to stand as everyone follows the lead of the DJ. He had a great time. And his balance is really improving!!

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