Friday the 5th of Nov.

Marky's been sick for 3 days.....

The infamous belly pain that mysteriously comes and goes.

He actually went to school Mon. and Tues..ALL DAY.

Even had a "play date" with his FAMOUS "RUNNING BUDDY"--ALEX tues after school !

Then Tues night around nine, the pain hit. He was clutching the blankets and gripping my wrists like a vice. His toes were curled under ( a sign of pain or stress in kids, dont ya know), and he was pale as a sheet.

He stayed home from school Wed, Thurs, and wouldve today if they werent already off for parent teacher conferences.

Got a humorous call today from a bill collector for $102.30. Unpaid office visits for Mark and Sam!

I chuckled as i spoke with the very nice concerned lady that i owed her SO MUCH MONEY !

I then related to her my story about Marky's currently still UNPAID $300,000.00 plus hospital bill at PCMC, among other ginormous price tags for health !

....Just another fun day in the life..........

Have a great and HEALTHY weekend everybody.
Love , Lynette

Wednesday Nov 3rd.--

Today my niece, Brittany Beecher, enters the MTC.

She's going to Spanish speaking Minneapolis !

I was present as the Stake Pres. "set her apart" last night.

I've known her and Brooke (her identical twin) for 21 yrs.

My bio-identical and I often say to each other "we dont know where they came from !"...."certainly not our gene pool" ! "They are too perfect"....
And other things like that.

Britt even spent the balance of her last day with her "special needs" friend, Allie, reassuring her that she would be back and not to worry. That she was going away to teach people about Jesus.

Britt met this little friend in high school as a "peer-tutor" for the special needs kids and still keeps in touch with her years later.

As I sat listening to the Stk. Pres. giving Britt the blessing, I decided...

...Those redheads came to this existence already "Set-apart".

Love, Aunt Netti

Two things:

1) Sam had his IEP assessment at school this week to evaluate his progress.

His average scores were.....at or Less than 1% for all skills when compared to "typically developing same-age peers".

They recommended "supplemental testing at a future date when Sam
exhibits more cooperative, assessment-ready attitudes and achievement-
motivated behaviors" ...

They did say that " Sam is working on counting 1-10. He enjoys counting
1-7 but sometimes struggles with 4."

They did say that "Sam has a charming, socially engaging personality.
He does, however, have difficulty staying on task to an activity that he is
not interested in."

Sam was socially developed and acceptable enough to participate in: .....School assemblies only. Otherwise he is to be kept in his "special class".

That said.......... item #2 :

2) Sam and I had the Privilege of attending a "Special Needs Ym/Yw talent show last night!

These "earthly angels" had us captivated and amazed !

As I sat in the audience and watched them one by one perform in their own special way, I knew i was NOT worthy to be among them.

Yet they accepted me and loved me and smiled and hugged me.

I was allowed to attend their "assembly" !

I was in the " less than 1%" of that population. !

Would that we could all be as they are.....quick to love and accept.
Unconditional at any level. No boundaries, limits or expectations.

Less than 1% ... by whose standards !

Also, of note ....

The invitation to attend this "talent show of angels" was extended to me by Brock Dansie, who turned 18 yrs old yesterday !

He and I have known each other since approx his 18th WEEK of life !

I met him during an ultrasound on his Mom, Beth Dansie !

I was lucky enough to have viewed him many times before he was born. I knew he was special, even then !

I never saw him after he was born....until about 8 years later.!

I was shopping for a new home in a good neighborhood and was parked in front of what is now our home. An adorable little boy came quickly walking over to my sister and I, waving like crazy--greeting us like we were celebrities.

We recognized that this little guy was indeed a "special" boy....My sister, Lori said to me.." you better buy this house, ...that little boy's gonna need you . "

A few weeks later as we were moving our stuff in, Beth and Dave Dansie came rushing across the street to say....

"HEY ! You're Lynette ! You are the one who scanned our little boy, Brock and told us that you thought he was "unique" (because of his head shape and tons of amniotic fluid and other stuff seen) ! " The doctor's didnt think anything was "wrong" with him.....But you were right ! "

Then began...or continued, our friendship and journey with "Brock" !

Now he is 18 and has moved on to another neighborhood and left me staring at his empty house where he used to watch out his front window for me to come home so he could wave to me or call me on the phone and ask how my day went and how everyone in the family is feeling.

My sister was wrong, I needed " that little boy"...he didnt need me !

Miss you Brock, Love Lynette

Words from Cathy Wallace --- thank you Cathy for reminding us ----....and making me cry first thing in the morning ! L

“Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.” John 14:27

It's easier said than done, yes? But, I do know that as we seek this peace the Lord will bless our lives. He has asked us to 'be of good cheer'.

Not 'be of good cheer when everyone is healthy' or 'be of good cheer when the bills are paid' or 'be of good cheer when eating cookie dough'.

Just plain old 'be of good cheer'. Keep smiling. Your heart will follow your face.

Love ya! Cathy
October 21, 2010 9:59 PM

My friend Claudia says.........

" If it weren't for Diet Coke, I would have NO
Personality at all ! "

I have nothing to add to that !

Wednesday the 20th....

Marky and I spent yesterday, my one day off this week, at the new Primary Childrens satellite facility in Riverton Utah, which is conveniently straight west from us, just about 40 blocks.

We turned in the now famous STOOL SAMPLE that he and Jonah collected (see previous blog entry).

Then Marky had to drink the nasty, chalky Barium crud. Then we waited for 3 hours while the stuff cycled through his stomach and small intestine.

The Radiologist took pictures every 45 min. or so to chart the progress.

When it finally got through and dumped into the LARGE intestine or colon, we were done.

The initial report was good. No evidence of obstruction or strictures !

Yahoo.

Of course, all these kinds of test were done initially last year when this disease process started, or manifest itself.

They were all normal then, too. It wasnt until the "exploratory" surgery that the tumor or sclerosing or fibrotic crud was found.

So a "normal" test is good.....but not re-assuring enough for me to sigh a relieving sigh of relief ! !

When I get like this, I have to remember the blessing that Elder Johnson gave Marky.....that he would live and resume his normal life.

Im holding on to that.

Thanks for all of your encouraging words and comments ! I cant wait to "log-on" and see what you guys are saying. It means more than you know and gives me charge to get through one more day !

Love you all dearly, nettie

Tonight i came home from work to find Marky and Jonah in the kitchen.

They were just hangin out snacking on stuff when Marky remembered...

"Oh yeah, here mom.." then he gets in the fridge to show me....

It was a STOOL SAMPLE !

Mark had been to the Dr. today. He sent them home with a stool sample collection kit.

Of course when the "time came", neither me nor James were home to help with the "collecting process".

So Jonah did what any best friend would do.....

HE SCOOPED UP THE SAMPLE FOR HIS COMRADE AND PUT IT IN THE COLLECTION JAR !

Jonah is 9 years old !

Jonah is a true soldier and warrior just as Marky is. Never leaves a friend behind. Always walks beside, never in front.

When Marky was in his throw up stage of the disease, Jonah would hold the "barf bucket" for Marky and gently encourage him.

Jonah used to carry Marky's TPN backpack (remember the liquid nutrition than ran thru his pic line to feed him) as they would walk around the house.

Who does that ! especially a 9 year old !

As expected, I broke down in tears as I realized just what these two had managed

to accomplish all by themselves.

What does the future hold?

Whatever it is, we are in good hands.

Lynette.....Markysmom, Jonahs grateful "othermom"

Tuesday the 12th---

Thanks for all the spirit-boosting comments from yesterday's "pity-party" everybody !

I loved logging on to blog today and seeing your replies !

I got home last night and Marky was still "floppy" and laying in bed. He has also started coughing ! Like he's getting a darn cold or somethingorother !

At eleven o'clock last night, the poor guy was still coughing his head off and then holding his stomach in pain. So we decided to give him a tiny bit of the magic codeine cough syrup that all of us Mom's are grateful for.

Of course, the codeine stuff relaxes the bowel, too, along with the cough...so that's a problem with a guy who is already teetering on crapstipation issues !

But he DID sleep after that. Today he is coughing again and still complaining of the belly pain.

Last night he told me I needed to take him back to the hospital cause it hurt so bad....... I just stood there, concealing my panic at the thought, and said....."just put the heating pad back on your belly and watch Ironman, for cryin outloud !" (Ironman is the DVD of the month at our house by the way)

So James is at home with the warrior again today.

Love to you guys, Lynette

MONDAY THE 11th ---

Marky is hanging in there... He made it through his "clean-out" and went back to school on Thursday and Friday ! TWO DAYS IN A ROW !

Saturday night the next wave of pains hit and he's been feeling crappy ever since. I dont know if its the "crapstipation" this time or not.
He shouldnt be clogged up with all the "maintenence" techniques we're doing. He gets two doses of Miralax a day. !!!

So James stayed home with him Sunday and Today to get him through whatever this round of pain is from !

Last night we had to give him his weekly chemo shot.

Usually he sails right through it with Scotty distracting him, making him laugh. Or Jonah by his side doing the same.

But last night he was especially anxious about it and cried with giant tears, begging James not to give him the shot !

Sam got worried and started crying cause his Marky was crying, Jonah got worried cause Sam AND Marky were crying....Rocky the dog just ran and hid....Scotty kept trying to manage the situation while James and me got it done.

James is usually the one to give the shot. He does a great job. Im too chicken to inflict that kind of pain on my own child...sounds dumb, I know, but I just cant do it !

Poor Marky is just sick and tired of it all, i'm sure...and I dont blame him.

So, today i'm at work.....eating all the cookie dough outa the freezer in our break-room (Shhhhh !) and injesting large quantities of Dietcoke to try to soothe my soul!

I'm not handling this "chronic" stuff well today...sorry Marky.

Tomorrow is another day....I hope !

Price tag for Marky's Chemo infusion's every 8 weeks:

$ 2,900.00 (includes blood chemistry)

Insurance pays...maybe 80%

Amount still unpaid to PCMC from last winter's stay:

$ 223,389.00 (just for hospital stay only,not all the Dr. fees, surgery fees, anesthiology fees)

Ins. and medicaid are arguing over who should pay and how much. In the meantime, they keep calling us asking, "how would you like to pay for that today ?"

Wonder why i sold my harp ?

Sold all the furniture last summer to help recover from Sam's follies !

Running outa stuff to sell ! The trailer is going next. Been keeping that in case we have to live in it someday !

Marky is doing better today.

Tuesday was spent up at PCMC with Dr. Pohl's team.

Seems that all the heavy pain meds from last week got his intestines all clogged up and nothing was moving through. The pain was from what I term....."crapstipation" !

So he endured a heavy duty "clean-out" day yesterday at home with the Colonel, "uncle Ken" Crocheron on duty.

Those army guys really do take care of their own !

James was at school, I was at work. So we appreciated the Colonel being on guard duty.

Marky reported in to me when I got home last night that he had "flushed" (if you know what i mean) THIRTEEN TIMES !

So off to school he went today feeling much "lighter" i'm sure !

Poor kid !

I was grateful for the diagnosis of "crapstipation" rather than a re-lapse, again ! ! !

CHILDREN SHOULD NOT HAVE TO SUFFER !

THE END

MARKY WOKE UP AT 4:30 am TODAY

WITH BAD BELLY PAIN.

HE IS RATING IT AT AN " 8 " ON A SCALE OF 1-10.

I've tried all his pain meds -- one at a time, okay !--and he is

still suffering.

we've been gluten-free diligently.

I put a call in to Dr. Pohl's camp for re-inforcements.

We'll see what happens.

I have a day off, which i had planned to sleep through--i've been "on-call" at LonePeak ER since Sat. --not many "call-backs" but i'm not good at sleeping when i anticipate the phone to ring anytime. I'm ridiculous like that !

So i will keep watch today over the little warrior, wringing my hands with worry....at what next !

Make-A-Wish Foundation® of Utah » Marky’s Army Jeep Wish

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CHECK IT OUT !

HERE'S SOMETHING COOL ABOUT PRIMARY CHILDRENS HOSP.--

When Marky was admitted last week, we were back up on the 3rd floor.

This is where we spent most of our "tour of Duty" last winter. He got to know alot of the staff.

So when we got settled in to his room, he wanted to go visit his "old friends" !

He really believes that he is a celebrity up there.

The nurses and Staff at PCMC treat these kids like they are celebrities !

I rolled him up and down the hallways to each nurses station as he looked for familiar faces.

These nurses and techs all waved and high 5'd him like a hero !

I was affected by each of them. They dropped what they were doing and acted like Marky was the only one they cared about at that moment. They crouched down to talked to him at HIS eye level. He was "king" to them.

Ive watched them do this to other kids too. What a group of Angels that minister to these children in need.

There is also a group up there called "the Pallative care team".

They are a team of advocates for the patient and family. There's a Chaplain, a social worker, a nurse and maybe someone else i cant think of right now.

They kind of rally around "long-term-er's" that are spending lots of time up there.

"Orly" is the first name of the social worker guy on that team.

He is like batman. He seems to be everywhere, on-call, waiting for any opportunity to rescue.

He has some magic power that he uses to cruise the listings of new "admits" . When he sees one of his "kids" on the list, he magically shows up with a smile and something funny to cheer up the afflicted!

He's a cool guy that has kind of an "unruly" look about him. Untamed hair thats longer than short. And he is usually wearing some kind of kid likeable t-shirt with spiderman or a super hero on the front ! He talks about the latest video games and the "level" that he's made it to on Mario.

He never stands over the bed either. He grabs a chair and scoots right over to Marky. Makes eye contact.

I'm going to try that. ...not standing over, but "scooting" over ! I think this is a life lesson.

RIDICULOUS THINGS ABOUT GLUTEN --

1. Its in everything thats tasty.

2. Its disguised as lots of different alias's in everything thats tasty.

3. Its produced from wheat ! And thats supposed to be GOOD for us !

4. Lack of gluten in bread is just plain dissappointing.

5. Lack of gluten in donuts is like eating a solid sugar coated rock.

6. GLUTEN MAY HAVE BEEN WHAT ALMOST TOOK MY MARKY FROM THIS WORLD !

Sunday with Marky--

He's doing better today ! He felt great on Friday- like his old self.
Yesterday, Sat, he felt so good that he went up to Park city with his
Buddy Jonah to hang out with their family.

2 hrs later came the call........Bad Gut Ache !

James buzzed up the canyon to retrieve him. They were eating at a place
called "Flippin Burgers" ! They even had gluten free hamburger buns !

Jonah's mom, Jen is always on the lookout for places that Marky can eat . She is a huge advocate for him.

I think he may have had some anxiety of being away from "the nest" which set off the pain....who knows.

We got him home and dosed up with pain meds and heating pad.

He's back up today feeling good....so far.

GLUTEN IS DUMB !

The Little Warrior is home from the battle field !

He made it back to his bunker this afternoon.

The battle field assessment and de-briefing report alledges but cannot confirm or deny: new meds to settle down the suspect celiac disease, heavy pain killers temporarily and an emphasis on Gluten free dining.....FOREVER !

He will continue as before on the Methotrexate injections once a week (given at home) and Remicade IV therapy every 8 wks up at PCMC.

An MRI done this morning didnt show anything significant, thankfully. And the Biopsies done during the scope were mostly good too, according to James who was there to hear it all from the Docs.

I worked my 12 hr shift today and missed the whole hooplah. But was there in spirit, as most working moms are relegated to be.

This short stay at Primary's I know is largely due to the many sincere prayers from all of you on Marky's behalf. I fully acknowledge God's healing power and tender mercy with each day we are graced with.

Love to all of you, netti

Wednesday evening--

Marky just got back from his Endoscopy thing.

Dr. Pohl showed me the pics of the tour through his GI tract.

Several areas of bleeding lesions which are generally associated with celiac disease.

He is mostly convinced that this was all triggered from the gluten challenge.

He even suspects the possibility that celiac disease triggered the auto-immune response that triggered the fibrotic sclerosing retroperitoneal spindle cell tumorous whateveritwas crap that took over his life !

All of Marky's old "teams" that swarmed around him during the last "war on terror" up here are back coming in to see him.

After all, he IS a legend up here, "the Miracle Marky", the "wonder boy",

the "LITTLE WARRIOR" !

One group of Docs is ordering a bunch of other lab tests to rule-out some more stuff. He will get an MRI tomorrow, too.

So we will hang around up here for at least another day or two.

Blessings are continuing to come to our little warrior as he fights the good fight......again.

Wednesday 11:30 am--

Marky is resting with some IV Morphine on tap.

He is scheduled for an EGD (scope down the throat) at 12:30 today.

They'll look around again to see if anything has changed.

The doc thinks it may all be related to his recent "gluten challenge", even though the blood tests dont manifest it.

They will do an MRI on his belly tomorrow sometime to try to get another look for clues.

I am able to sit up here w/ Marky today. My work load was light today so i got to leave at 9 am and come up. James has gone home to rest and take care of Sam when he gets home from school.

Thanks for your prayers

Markys pain returned last night with a vengence.

He was actually admitted to Primarys as an inpatient this time for more agressive pain control and tests.

James took him up there and I stayed with Sam and Scott.

The Dr. said they would likely do some kind of scope on him today to see anything .

Last night before they left, Bishop Rupp happened to be here dropping Scotty back home after home-teaching.

We invited him in to give Marky a blessing before he went up to the hosp.

We all sat at the foot of the bed while Bishop Rupp layed his hands on Markys sweet head.

Shortly after Bishop started with his prayer, our "angel Sam" very softly crept across the bed and got up on his knees next to Marky and PUT HIS HANDS ON TOP OF THE BISHOP'S .

He assisted reverently until the bishop was done.

I was amazed at the sight of this dear heavenly angel helping to minister unto his brother.

A task i'm certain he came to this earth to do.
\
All that the bishop said after he took his hands down from Markys head was ....
...."Thanks for the help, Sam ".

It was a moment i will treasure all my days.

Wish you couldve all been here to see and feel .

Love you all. Netti

Tues. AM--

The CT scan showed a small amount of ascites (fluid hanging around in places it doesnt belong) in his abdomen....otherwise nothing significant.

His pain was progressing as the night continued and he received two doses of Morphine.

The docs are uncertain of the cause of these current symptoms.
perhaps its the "undiagnosed" celiac disease. Or maybe the nasty sclerosing fibrotic crap raising cane again.

If you remember, non of the diagnostic scans ever showed any of his disease before.

Only the exploratory surgery.

At 1:00 this morning we left for home with prescriptions in hand.

A round of steroids, some kind of non-narcotic pain meds and something else i cant remember.

I had to be at work at 7 am today, so James will manage the care of the boys.

UPDATE at 8 pm, Monday night----

So far, the blood work is turning up with nothing significant---thankfully.

Marky is still drinking the icky contrast for the CT scan. They will get him in for that within the hour most likely.

His pain is still quite bad. They gave him some Zophran--the wonder drug for nausea.

His eyes crossed within minutes after the good stuff hit the capillaries !

Thanks for all the calls of concern and support.

Sam is at home with a fever, trying to share the spotlight with Marky, i guess. James is tending to him, along with Scotty.

Thanks to all the neighbors that are pitching in with offers to help.

Will update after the CT results. Probably will be a couple more hours.

Love, Netti

GOT MARKY UP AT PCMC ER :

GETTING IV FLUIDS, TESTING HIS BLOOD FOR ANYTHING.

WAITING FOR A DECISION ON WHAT TO IMAGE AND HOW TO IMAGE IT....ie CT scan or Ultrasound.

He's having "pain in his liver" as he describes it, and severe nausea.

I feel relief knowing that he will be taken care of now up here. No more ringing my hands wondering whether to bring him up here or not.

He tried to go to school this morning. Made it till noon, then came the call....."my liver hurts, mom".

We will wait and let the experts do their magic.

keep ya posted......love, lynette

UPDATE: Doc just came in and ordered a CT abd/pelvis. Marky gets to drink some "contrast" to make his intestines show up. Then wait 2-3 hrs and do the scan.

Saturday---

No change in Marky's status.

He's no worse. That's good

No Better. Not so good

His buddy Jonah came over last night to cheer him up and play a little.

Jonah keeps a vigil over Marky and reports any signs of anything when it comes to Marky's condition.

He is a devoted friend and is so amazing to watch as he worries about Marky.

Im working again this morning. When i get home i'll assess the patient and try to decide whether to take him up to PCMC.

Something is not right. Can feel it in my gut. And his eyes are sunken and glassy. He feels like throwing up all the time. His headache is better, no spots anymore. Just complaining of "crappiness" and nausea and his liver hurting.

Ive been nervously eating all the cookies at work and raiding the fridge for Diet Coke ! ......What else can I do !

Friday the 24th of September:

Marky's been ill all week with a headache --seeing spots, and nausea.

He says his "liver hurts".

We've been on the phone every day with the Docs up at PCMC trying to figure out what to do.

He had his Remicade infusion last Fri. and has been feeling crappy ever since.

They drew a bunch of blood for lab work and it is all looking good, they say.

So we are all pacing back and forth ringing our hands with worry.

ESPECIALLY ME !

I asked him last night if he thought I needed to take him up to the hospital.

His reply was....." you probably better , cause my liver hurts" !!

I grabbed Scotty and we all knelt in prayer. Scott prayed for him to feel better and all that other good stuff. (I always make them pray in times of peril---I tell them that God listens to a child's prayer WAY BEFORE a dumb adult's ! )

I did not take him up to the "mountain" yet. Still wringing my hands. But have another call into the Docs at Primary's.

Keep ya posted.

Pray for Marky, please..........Lynette

Marky is back in "Theatre"....

We are spending the day at Primary Children's getting his Remicade infusion therapy.

We have been up here since 0930 this morning. it's now 1500 hrs....(thats 3:00 military time, for you civilians) !

He's been a trooper, of course. Mostly bored. He has to lay in bed the whole time.

On the other hand...."mom" has been much less manageable. ! ! !

The anxiety accompanied with hauling a child back up this hill along with its all too recent memories is bringing out all the coping skills that were waining at

best in the first place !

Large quantities of chocolate covered almonds is the "coping skill" du jour for me !

Marky has been pinching me everytime i try to cry !...a technique that has served us well since the introduction of the "pinching diversionary tactic" was suggested by my co-worker, Angela !

Every time the tears are threatening.....you get someone to pinch you ......takes your mind right off whatever it was you were getting ready to cry about !!!

Marky and me are getting to be quite the team at it !

On a lighter note......

This is picture does in no way do justice to the mess that our littlest "Angel" Sammy had waiting for me when I got back from work tonight !

It is an entire box of Nestle's quik dumped on our couch by the "destroying angel---sam" !

We just barely got that Nesquik chocolate decadence last week when i got a decent paycheck ! We hadnt had any forever !!! Its not a necessity...just a treat...

Now our dog Rocky is trying to lick it up off the couch !

Sam is a gift !

Sunday the 29th of August --

Today ive been invited to tell the "Story of Marky" to a group of Primary children in Sandy.

Marky and I will go and do our best.....how could words possibly do justice to such an extraordinary journey, let alone cram it into 10 minutes!

I will tell the children of one of the pivotal experiences in the journey of Marky...

One Sunday, our bishop Jeff Rupp, invited all the dear Primary children in our ward to kneel down together in the primary room. He then offered a humble prayer pleading with the Lord to heal sweet Marky.

He also visited EVERY class and meeting during those couple of hours in our church building and invited each of them to kneel in prayer as well.

A whole community of people binding their faith and love together for the sake of this child.

I was not there, as I was with Marky at the hospital that day. But as the story was told to me by so many... I have no doubt that God heard these humble people, especially those little primary children.

Soon after this event, one of President Monson's associates, Elder Kenneth Johnson, came and administered a beautiful blessing upon our Marky. He blessed him that he would someday return to his daily life. And be riding his bike with his friends.

I remember sobbing, and doubting. Wondering how any of this could ever be, as I watched my boy laying listless in that hospital bed, barely hanging on to life.

That very night, late, around midnight, a Doctor i hadnt seen before stuck his head in Marky's room. He introduced himself and said he'd heard about Marky and had to come see for himself!

He said he had seen something similar to what Marky had. And started talking about the treatment that Markys other Doctors should think about trying.

I begged him to please....."Go write the Orders in his chart, right now" !

I knew the Lord had sent him to us that night.

Marky had been laying in that hospital for weeks and weeks with everyone scratching their heads not knowing what to do.

I told this Doctor that the Lord had sent him to us, I told him that he was an answer to our prayers. I hugged him and thanked him profusely as I cried with gratitude.

It was within 2 days that Marky started getting better. He was responding to the treatments.

A true Miracle that I cant deny. Even with the prominence of my cynical streak, (which i think is just a defense mechanism for disappointment), I witnessed a great event.

It is evidence that we are not alone in this world. That God does hear our prayers.

You are ALL answers to our prayers. With the many kind deeds and words offered by so many of you throughout this "trek" of ours.

We are so grateful to each of you for helping us get our little Marky back to " riding his bike with his friends" !

Love, lynette

Wednesday the 25th of August:


Today, maybe, I can get enough composure to log in to Blog !

Monday was, for most of us w/ kids, the first day of school !

I had the day off, thankfully. It was Scott's first day of High School at Alta High ! And Markys first day of 3rd grade !

I dont know which one of them i cried most about !.....Scotty, my first born, off to scarey High School, or Marky.........ACTUALLY ALIVE AND GOING BACK TO SCHOOL !

Fortunately, my husband James understood , or at least sensed, that he should just leave me be !

After getting them all out the door and delivered to their schools, I sequestered myself in my room and cried. I qued up my best "chick flick"....Pride and Prejudice...of course, and burrowed in for a few hours.

I believe that the therapeutic value of even a couple of hours of this curled up, fetal position, chick flick, crying nonsense is beneficial , even though it accomplishes little in the way of productivity and rarely changes the outcome of anything you were "curled up" about !

I did however dump out the "unmatched sock vortex" drawer on the bed as I sat there and tried to make it look like i was doing something important, should James peak in on my ritual !

Before the "curl up", I had driven Scotty to The front door of Alta High. Of course, I had my camera to record the monumental event of the FIRST DAY OF HIGH SCHOOL !

I insisted that he pose in several places showing the "Alta" logo in the background. He was rolling his eyes in every picture !

Finally, He said....."Mom, ENOUGH ALREADY", and I reluctanly watched him toddle off to the den of lions !

i MAY have driven around the school a couple of times, just incase he came running back out !

Then I had a great idea !...I called him on his cell phone to see if he had enough money for lunch and snacks !!!!

This always works with kids ! Offer money and they always come running ! And he did ! I got one more look at my little Scotty before his innocense was shattered ! reluctantly, i drove on home to face the next torturous chapter of the day. Taking Marky to 3rd grade !
Sam will start KINDERGARTEN next week!

Another day of miracles ! Who wouldve thought my littlest angel that began this earth life with so many trials would ever be riding the bus to kindergarten !

My neighbor, Dave Dansie, stood on our driveway one day about 5 years ago and said...."You just wait, little missy (anyone is "little" next to Dave), pretty soon, that little guy is gonna grow up and be going off to school before you know it !"

I thought, yeah right Dave ! Sam was so sick and laden with complications of many kinds in those early years.

I hate it when guys are right ! But, glad Dave was right about just this ONE thing !

Sitting here staring into Sam's beautiful eyes reminds me of a quote by another "lucky" family member of a child with Down's Syndrome....

He's not here to LEARN....he's here to TEACH

One of our little Sammy's latest M.O.'s (mode of operations--for you non-military's) is to grab the 2 people he's in between and pull them together and make them either hug or kiss each other, then they have to kiss him, or he kisses them !

He does this at church, and other places, when i'm holding him while talking to ANYONE !

So great, and such a lesson to learn, on so many levels !

This is a picture i thought was amazing:

Sammy's chest opened up at age 6 mo. to save his life !
Marky's belly opened up at age 7 yr. to save his life !

I FIGURED OUT HOW TO POST PICTURES GALORE !!!

No need to label each one! Just look at his face !

Hey you guys !

MARKYS IN THE DESERET NEWS TODAY !! Check it out in section B-4 ! Click on the photos if you look it up "on-line" !

THE WISH HAS COME TRUE ! ! !

We're still speechless from the outpouring of love and generosity for our
dear Marky on Friday the 30th of July.....and all the countless hours leading up to the BIG DAY !

How to describe such an event:...... cant be done --

However, Friday morning, the whole family took Marky out for an early birthday (sat the 31st was his BD). While we were out playing, the Wish
Granters transformed our backyard into a "command post" !

THE JEEP IS SOOOO AWESOME !

On the west end of the yard is a "bunker" with piled up sand-bags to "take cover" behind ! There is a medic tent with a real army cot and a medic's bag with bandages and cool stuff in it for the "wounded".

The middle of the yard is our old play set that was transformed into another bunker with camouflage netting and ammo crates full of "faux" army grenades ready for launching !

THE JEEP is strategically placed in the North-East corner of the yard to hold off any insurgents that may dare enter the premises !

It has been improvised with a solar powered battery that enables the headlights to work and a bunch of other cool stuff. The steering wheel turns/ as do the tires. The Jeep is lifted slightly on permanent jacks to allow the wheels to turn !

Its all "kid-friendly" modified and weather proofed for war conditions of any kind !

Crates of cool army stuff were brought in complete with uniforms, hats, grenades, weapons of war, army packs, "brain buckets" (metal helmets), even military issue decks of cards to play with while they await "orders" from the "Chief" !

As we entered the backyard and saw at least a hundred people there waiting in the sweltering heat, Marky's jaw dropped ! We were ushered to the center of the yard.

Capt Adamson called the group to attention and signaled the color guard to "present the colors" . The solemn crowd reverently watched as the Hill AFB soldiers respectfully payed tribute to our flag and the freedoms that it represents. The national anthem was played as well. What a thrill !

Capt. Adamson then turned to Marky and read the "Oath of Enlistment" to him as Marky repeated all the covenants back ! The Capt then had Marky sign the document and present him with a Captains Beret to don !

There was hardly a dry eye.

There were tons of soldiers dressed in full uniform . Three Colonels, Captains, Seargents, a whole platoon of guys were there to pay homage to our "Little Warrior" !

Channel 4 and 5 were there to cover the story (which was aired). The Salt Lake Tribune put him on the FRONT PAGE ! Reporter Robert Kirby, whom i am a big fan of, covered the event and wrote a huge spread that was printed on Saturday ! ( you can check it out on-line) ! What an honor !

The Make-a-Wish foundation spared no detail for this little warrior!

We are SO grateful for all the time and love that went into creating this dream for Marky ! Thank you Thank you Thank you !

Love, Lynette