Sunday, August 29, 2010

Two Wonders I Confess..............

We celebrate Communion, aka  The Lord's Supper depending on your church affiliation ,  or also called  the Sacrement  too, on the 5th Sunday of  a month, which fell on August 29. I prayed and sought the Lord all week for exactly what part of  this worship service He had for our body musically. Thinking of the cross where Jesus died, thinking of all He endured from the moment of His arrest up to that  moment of actual crucifixion and then those three long hours before His triumphant  words "It is finished",  God took me on an incredible muscial journey. The song  whose words  touched me the deepest  of  all those God gave me for today's service was the hymn  "Beneath the Cross of Jesus" ...... And from my stricken heart with tears  Two wonders I confess
The wonder of His glorious love     And my unworthiness...........
As I read them I wept. AS I wrote them out, copied and pasted  I wept. As I presented them to our team for practice, I wept. When we sang them this morning, I thought I would weep again, but only the desire to share that incredible sentiment as I sang  came out of me.   God ministered  to each of us this morning in this service as we sang, read the Word together, shared the Lord's Supper and prayed. I am sharing the words to the music God gave me for today with you.  Please as you read, or sing,  worship the Lord in the beauty of Holiness!


LET IT RISE
Let the glory of the Lord

Rise among us

Let the glory of the Lord

Rise among us

Let the praises of the King

Rise among us

Let it rise

Chorus 2

Let the songs of the Lord

Rise among us

Let the songs of the Lord

Rise among us

Let the joy of the King

Rise among us

Let it rise
REPEAT from *
Oh let it rise
Oh let it rise



I Stand In Awe of You

Verse 1

You are beautiful beyond description

Too marvelous for words

Too wonderful for comprehension

Like nothing ever seen or heard

Who can grasp Your infinite wisdom

Who can fathom the depth of Your love

You are beautiful beyond description

Majesty enthroned above

Chorus 1

And I stand I stand in awe of You

I stand I stand in awe of You

Holy God to whom all praise is due

I stand in awe of You
Verse 2

You are beautiful beyond description

Yet God crushed You for my sin

In agony and deep affliction

Cut off that I might enter in

Who can grasp such tender compassion

Who can fathom this mercy so free

You are beautiful beyond description

Lamb of God who died for me


Beneath The Cross of Jesus in Key of C (hymn)


Verse 1

Beneath the cross of Jesus

I gladly take my stand

The shadow of a mighty rock

Within a weary land

O blessed shelter from the storm

The sinner's sure retreat

O glorious place where heaven's love

And heaven's justice meet

Verse 2

There lies beneath its shadow

Upon the farther side

The darkness of an awful pit

That opens deep and wide

And there between us stands the cross

Of Him who died to save

With His own life-blood my lost soul

From that eternal grave


Verse 3

Upon the cross of Jesus

My eye by faith can see

The very dying form of one

Who suffered there for me

And from my stricken heart with tears


Two wonders I confess


The wonder of His glorious love


And my unworthiness

Verse 4

O Christ beneath that shadow

Be my abiding place

I ask no other sunshine than

The sunshine of Your face

Content to let the world go by

And count its gain but loss

This sinful self my only shame

My only hope Your cross


Lead Me To The Cross in key of D 

Verse 1

Saviour I come quiet my soul

Remember redemption's hill

Where Your blood was spilled

For my ransom

Misc 1

(PRE-CHORUS)

Everything I once held dear

I count it all as loss
Chorus 1

Lead me to the cross

Where Your love poured out

Bring me to my knees

Lord I lay me down

Rid me of myself

I belong to You

Oh lead me lead me to the cross

Verse 2

You were as I tempted and tried human

The word became flesh

Bore my sin and death

Now You're risen

Misc

(PRE-CHORUS)

Everything I once held dear

I count it all as loss
Chorus

Lead me to the cross

Where Your love poured out

Bring me to my knees

Lord I lay me down

Rid me of myself

I belong to You

Oh lead me lead me to the cross
Misc 2

(BRIDGE)

To Your heart

To Your heart

Lead me to Your heart

Lead me to Your heart

Chorus

Lead me to the cross

Where Your love poured out

Bring me to my knees

Lord I lay me down

Rid me of myself

I belong to You

Oh lead me

Lead me to the cross


How Deep The Father's Love For Us in key of D

Verse 1

How deep the Father's love for us

How vast beyond all measure

That He should give His only Son

To make a wretch His treasure

How great the pain of searing loss

The Father turns His face away

As wounds which mar the Chosen One

Bring many sons to glory

Verse 2

Behold the Man upon a cross

My sin upon His shoulders

Ashamed I hear my mocking voice

Call out among the scoffers

It was my sin that held Him there

Until it was accomplished

His dying breath has brought me life

I know that it is finished

Verse 3
I will not boast in anything

No gifts no power no wisdom

But I will boast in Jesus Christ

His death and resurrection

Why should I gain from His reward

I cannot give an answer

But this I know with all my heart

His wounds have paid my ransom

Friday, August 27, 2010

"I Stand, I Stand In Awe of You!"

"Holy God from Whom all blessings flow, I stand in awe of You!" God is doing some miraculous things to our family dynamics ! As Daniel looks up at my face with his sightless eyes, he knows me. He laughs with me and talks in his sweet roar of baby talk and I get so wrapped up  in the moment that I forget to make those precious moments into "photo ops" . Please forgive me. When I find a sister or brother handy during the next smiley talk-ey session, I will assign them the fun job of taking photos. As I worked on the last of my preparations for Sunday's Worship music, I was singing to Daniel and he sang right back at me with a huge smile spread all  across his face. It is more precious than I can even begin to express. I know that his brain is so limited in its ability to move his body, make his vocal chords produce inteligible sounds, let his muscles relax voluntarily, cause his throat to recognize the presence of food and swallow it, but I can see that he knows and remembers quite a   bit. Its basics, but it s obvious he remembers . His changing table no longer terrifies him when I pick him up from bed , cuddle his and place him there to change his diaper and clothing. He really seems to know that this is an OK place and Mommy will quickly pick him up off of it after she's done messing with him. He still  hates lotion ,even if its warm, hates wipes  but less  so since I bought him an electric wipes warmer, hates having the crud wiped from his eyes or the crevices of his arm pits or chin, but calms down much more quickly than he used to. When I stroke his cheek and tell him "That's all" as I finish a task, he calms down.  The changes are so easy to recognize for anyone who has seen the earlier days home in June and July compared to this month. Feeding is still, for now, the worst of anything because he doesn't swallow, and I have to encourage that reflex to kick in, but he turns for my voice immediately when he hears me  anywhere, and his facial expresssion changes noticibly when he knows its me  or someone else touching him. It is wonderful  to know that he knows me!!



Other things are happening  as we continue to pray for our sweet Liberian children. Our son  was able to graduate from the kindergarten school he attended last year. I recieved a few photos yesterday and they just rang my chimes!!! In several of the photos was another , older boy named Charles we'd also met last year in Liberia. How super to see him too, and to know that the children are learning, and progressing. Its  a blessing to be a part of that, even from far away. Our hearts ache for the day, that incredible ONE DAY, when I am able to go and get them , sign all the necessary documents that will make them ours officially for all of life, and board a plane with them to bring them home to waiting sibs and nieces and nephews, and a Great Gramma who once couldn't understand adoption of anyone older than "infant" but is now our greatest advocate and supporter.
The A/C is still out of order as far as I know. Its been cool for a couple of days so I have been able to keep it turned off and use open windows. (We've killed 4 flyswatters while committing  Flyicide but  the fresh "FREE COOL AIR  "  has been wonderful! )  I am still hoping  that having 32 people in the house for dinner on Sunday  gave our unit a serious need for a rest and that it is not "dead beyond help". Its supposed to hit the 90's again this weekend so we'll see if we have  cooled air or not...................... .
School has started for the University and for the public  ( OH!!!  I  just caught a typo  here which no one mentioned to me) high school . Our home school will NOT  start until after Labor Day, as is our tradition. Youngest bio-babe Jael is a high school senior, while Esther, Malachi, Hannah and her husband Jon are all enrolled at the university! Caleb starts Drill Sergeant school at Fort Jackson , SC on Monday. When our new school year starts we will have 2 high school freshmen, an 8th grader, 6th , 4th and 3rd grader beginning our 19th year of being a home school family. It looks to be an exciting year as we integrate some new curriculum into our old trusted favorites. We are all excited and "almost " ready " to start the year!
With   Charles (above)
Receiving his  his diploma (below)


I think the school photos made him nervous  so I'll share some happier faces  to close out this post!
I love my daughter's  sweet smile in this shot of the 3 of us

We sent  a new jacket with a dear friend. He LOVED it and posing in it made for a handsome photo!

Wednesday, August 25, 2010

I love this photo!

My mom walking down the aisle at Malachi and Sopheak's wedding.
She does not walk without her walker very often, but isn't she radiant here
as Charlie walks her in? Since her stroke she  has very little use of her  left side
and is not very steady even with the  hemi-walker. Charlie  was concentrating
hard on helping her stay stable all the way to her seat!

Family, watching my blessings grow!!

From two weeks ago back only three years....................how we've changed and grown!
                                                                          August  2010

Starting with my mom The Great  Gramma, next to her is Jon, next to him is Hannah holding Mady's hand, behind Jon is Isaiah, behind him is Tiffany, behind Hannah is Caleb,next to Hannah is Baby chalrie reaching for Pappa Charlie, in front of the Charlies is Naomi, behind the Charlies is Rachel, behind her is Bryden,
next to the Charlies: Malachi with Noah behind him and Sopheak with Isaac behind her, I'm holding Daniel, behind me is Blake,next to Daniel is Esther, behind him is Jael, behind Esther is Casey, next to her is Leah, behind Leah is Gideon.    Jon, Hannah, Blake , Mady and Charlie go together,  Caleb, Tiffany and Bryden go together, and of course Esther and Casey go togther.

                                                             4th of July 2010  Malachi and Sopheak were still in Cambodia



                                                                    September  2009 Caleb was home, Joshua was going to Kuwait, the rest of us were welcoming Baby the GRAND  BABY Charlie David born September 14. Courtney had left  the family and was not part of this celebration. Dana the mini-Schauzer is also  no longer with us



                                                                           December 2008
               No baby Charlie, Casey was fairly new to the picture, Sopheak was in Cambodia, but not far from Malachi's heart. Caleb had just left for Iraq, Joshua was already there 









                                                      October 2007 Welcoming the Daddy back form Iraq. Here he met Jon , the now  serious beau of Hannah, for the first time. Caleb and Courtney were still together.


                                                   June 2007 Joshua came for a visit. Gideon was sleepy, Charlie was in Iraq. Malachi was a fuzzy-top and Hannah had just met Jon. There was no Casey on the mind of Esther and Sopheak was still "just a friend"

Monday, August 23, 2010

Photos

Lets try this again. I'm not having much "luck " getting these to upload or go where I want them! ** UPDATE fuss:   OK  now its cutting off words and parts of photos. GROWL!!!


This is from the Cambodians ceremony but I like the photo
Sopheak getting ready


Hannah helping Sopheak with her veil, she decided against it
Rings tied onto the Ring Bearers' pillows

Zach, Malachi, Josh and Ben

 The Great Gramma


Zach walks me in...see?  I have shoes on!

Jenny as Mother of the Bride comes in with her son the Best Man

Jenny as stand in Mother of the Bride and I light the family
candles for the Unity candle ceremony later
Bridesmaid  Jael with Zach
NO PHOTO of bridesmaid Leah...camera froze

Maid of Honor Esther  Best Man  Josh
 Naomi, with  Mady hiding behind her

Stand in Dad  Rich Kirby escorts
 the Bride to her Groom


Rich presents Sopheak
 on behalf of Leng and Borrha

Linda singing MASTERPIECE, dedicated
to Sopheak and Malachi
from both sets of very proud parents

Saying their vows to each other
Happy bridesmaids watch their big brother and new sister!

Exchanging  of the rings






The kiss before the lightingof the Unity Candle
and the Pronouncement of
MR AND MRS  SMITH
Their song? " I've Got a Feeling
Tonight is
 Gonna be a Good Night!"


What a wedding party!! 
Malachi, Esther, Jael and Leah





That beautiful window and all that sun
 are causing
some adjustment
and  editing probs  but its happening.
I just don't have the edited photos yet!

How much prettier
could two sisters be?
My guys!
Isaac, Casey,
Malachi ,Daniel
 Isaiah, Jon, Noah,
 Gideon, and Caleb


Hannah and Jon with
 their children
Blake, Mady
and Charlie
Caleb, Tiffany
and Bryden



AND THEN there was  the FREEDOM CONCERT
Charlie Daniels with his "Fiddle"
doing
 "The Devil Went Down
to Georgia"
 WOW!

Sean Hannity with former
OK Congressman  J C WATTS,
 someone I really respect
almost all of the time.
 All those bright and
colored lights
 really distort skin tones!


Lt Col. Oliver North bragging
 on
Hannity's generosity.


<><><><>
Lynyrd Skynyrd, who did a really energized
 crowd pleasing set
 of old and newer music
 from their repertoire.
God and Guns was good,  I really just wanted
 to hear
 "Sweet Home alabama" and record it for Esther.
We   did!!!
Daniel and I  danced while Charlie video'd.
  FUN DATE
WITH MY HONEY,
wonderful room at Renaissance Hotel
 later and
 really good artichoke, feta cheese,
 chicken
 and roasted red peppers and chicken
pizza too~

My husband says I thrive on Chaos. IF this was chaos, I am UBER THRIVING!!!

What  a whirlwind of  a week and weekend! Doctor visits and eye doctor appointments, catch up on all that I missed last week with wedding busyness, start wedding work for Esther's November 6 wedding, carve out big  nich for BIG DATE with my husband, and plan for big BBQ get-together on Sunday with my dear bloggy, but now   -face-to-face friend,  Laurel  and her family who are on a multi-thousand mile road trip with a 15 passenger van towing a pop-up camper. 
So, four children still have perfect vision, four still need correction, two of those are happily outiftted with contact lenses, Charlie got really nice looking new frames to go with his new stronger prescription and we'll see what my exam shows this Friday! Naomi's standard bloodwork all came back looking great, but the Hep B stuff won't be back till today or tomorrow sometime. Those are the numbers over which we pray and continually commit her life to the Lord . She will have a liver  ultrasound the same day that Daniel sees the pedi-gastro doc  about his Mickey button surgery. THAT  too will be very telling. Hep B can hide out very well for a long time seeming to do no damage and then WHAM. We trust that  God is preserving Naomi's liver until she is healed completely and the virus is cleared from her body.
For Christmas  I bought Charlie  a pair of tickets to Sean Hannity's FREEDOM CONCERT at the  Tulsa  BOK  Center. We've been looking forward to this event  all year. The concert is primarily a fund raiser for THE FREEDOM ALLIANCE  Scholarship Fund, a program started by Lt Col. Oliver North to provide college funds for children who have  lost a parent in the war or whose parent is 100 % disabled. GREAT CAUSE!!!! Musical artists and celebrities donate much of their time and  ticket money to this Fund as well.We were treated to,  of course the host  Sean Hannity,  of TV and radio talk  fame,  the Charlie Daniels Band, Michael W. Smith, Lt Col. North, former OK  Congressman J.C.  Watts, former OK (and Dallas Cowboys)   football  star Barry Switzer, and  rock band  Lynyrd Skynyrd. WHAT a cross section of folks!
I have to say those old guys in both Charlie Daniel's  Band and L. Skynyrd  were amazing!!!!!!!!!!!! Like their music or not ( and I don't like most of Skynyrd -type music) some of these guys are easily in their  late 60's and  their 70's  and still going STRONG!!!!!!!!!!!!!! The drummer for C. Daniels band played a solo ,  a long  solo, that was I believe the most talented drum solo I have ever heard.  Charlie Daniels himself is no spring chicken but he really puts on an incredible show!!!  What a talented man!   Micheal W. Smith did a super set of his older songs, a new one scheduled to be released this fall which was a tribute to his wife, and of course "There She Stands" which he wrote at Pres. Bush's request  after 9-11. He also led the whole crowd in singing GOD BLESS AMERICA and that was simply WOW!!!!!!!!!!!!!!!!!!!  The tributes, recognition and appreciation for all of our troops, past, present, future and their  families of all was so moving!! Each of the artists had the service members stand to be recognized and thanked, and the crowd of many thousands was as enthusiastic the last time the cheered and applauded  as they were the first.  It was a very special night! We took Daniel with us and he had a blast! Loud music  and rhythm really "move "  him. He roared  his little talk, and smiled  and laughed, shared my Diet Dr. Pepper with a straw as a pippet,  and in general, impressed all those in the seats around him with how good he was.
One of my favorite Daniel moments was when Charlie was holding him  and Daniel picked up his head for the very first time! I don't know if he suddenly realized his head was 5# lighter, or if he'd been workin' on this accomplishment for a while in secret, but Charlie just broke out in tears of excitement!!!!! Daniel only did it twice, but it was  unmistakable that he DID IT!   The other special Daniel moment was when I was sitting outside the Center waiting for Charlie to bring the truck around for Daniel and me (my hip was about done for the night after a lot of walking to get to the concert, and all that dancing. I was not up to a three block walk to the truck) A cab driver had pulled up and was waiitng for a fare. He was an older Black man, he looked over at Daniel and me, got a strange look on his face and then came over to speak to us. He asked if Daniel had "water on the brain" and we talked about that a bit. He told me that he had a nephew years ago who was also born that way  but who didn't live very long. We talked about the adoption, and Liberia. He smiled so tenderly at Daniel and told him how wonderful l it was that he was home safe and sound now with a mommy and daddy to love him and care for him. He thanked me for adopting Daniel. That was really special. Several people asked us vague things about Daniel during the night.I'm sure we made quite an unusal site: Charlie carried Daniel in the front pack a good part of the time, I danced with him the rest. I know it probably looks like we are the grandparents who got "stuck "  babysitting for the night every  time  we take Daniel  out, so every little chance we get,  we talk about being blessed to have been able to adopt him! Nobody is STUCK  here except maybe  "stuck on blessing!!!!!"
Esther's wedding is coming together nicely. She has been planning and day dreaming of this event for a VERY long time. We are just now getting in on the  details.  She is our cowgirl so its fitting that she wants  an outdoor wedding with the open barn doors as her "arch" under which  to say her vows. It is SO Esther that she wants to ride in to the pasture on her beloved horse, Sugar. Charlie and Casey are designing a dismount platform for her now. She asked me  if I'd sing at her wedding  but told me to choose the song; she was not going to tell me what to do. I listened to a lot  of music last week and "thought" that I'd found my song...UNTIL...we were driving to OKC for Naomi's doctor appointment on Thursday. A song came on The House FM, my favorite Christian radio station and I was sure I'd never heard it before. It jumped out at me and I KNEW that I KNEW . This WAS the song for Esther and Casey!  Saturday at my beloved Mardel  bookstore after buying the last of our new school year's curriculum, I went CD soundrack searching. I knew the song had "Love" in the title, it had to, but that was all I had to go off of.  THERE IT WAS: "Love is Not  a Fight" by Warren Barfield.  I played it for Charlie as we drove home, and he agreed it was THE SONG.
So at home I decided to Youtube  it and lo and behold, this song is from FIRE PRROF  the movie which I have seen about 4 or 5 times. HOW  did   I,     who loves music like  I do,  
miss that  song????????????????
Naomi and Rachel said   later  they knew  when they heard it on the radio where it came from.
Anyhow that will be my musical offering to my daughter and her new husband.If you have not heard it  or have not caught all the words, please listen as you are reading. Its is powerful for the start of a marriage!!!!
And, if you are still reading, our Sunday was SO FUN!!!!  There were 32 of us in and out for the after noon between my kiddos, their spouses and kiddos, their friends, my mom, and Laurel and her bunch!! Wanna see 8# of hamburgers and 5# of hot dogs disappear  with tabouli, baked beans, saurkraut , brownies and ice cream,  along with gallons of various beverages?  You should have  seen how lovingly and  enthusiastically we did it!! And the clean -up?  Great team effort there too!! The kids thoroughly enjoyed the comforts of our wonderful pool as the temps for the day were well over 100 degrees and the house was not much cooler.
Last fall when Laurel and family came it was later in October and we celebrated our new freindship with a bonfire. We got some great photos that time.  While she and I were both so busy chatting and having fun, we both forgot to take any photos whatsoever yesterday. Lots of laughs, hugs and grat conversation between the 9 of them (one was a friend they were taking to YWAM  school in Texas) and the big bunch of us, but no photos. As Laurel's  tail lights diappeared to the east of our drive way that realization hit me. TOO late! Laurel have a great time today with Michelle and the rest of the Riggs bunch and later with Amy and the Block bunch!!!
I am hopefully taking my kiddos bowling this afternoon, taking Daniel and Jael to  the chiropractor and  then adding to my  last Saturday night's white chili, replacing  the chicken which got snitched out of the pot, leaving us with "too many beans Mommy".
Jael started her first day as a high school senior, Malachi, Esther and Hannah started back at OSU and I hold out starting our Lakeview Christian Academy until AFTER  Labor Day thank you!

Wednesday, August 18, 2010

WHERE DID I SPEND MY WEEK??????????

Obviously it was not posting in my blog! Whew, wedding plans and wedding details that blew up like clay pigeons at a trap shoot were EVERYWHERE! Dresses that were ordered in the "right sizes" were not, dresses thatwere "guaranteed" for expedited delivery were NOT, the soundtrack for my solo ,  which  should have been easy to find was NOT. The daybefore the wedding should NOT have been filled with shopping for dresses that didn't come, but it WAS. BUT  BY GOLLY, it got done! Right up to the five minutes into the rehearsal I was shopping in case the dress we really wanted didn't show up so  Esther had SOMETHING lovely to wear for her position as Maid of Honor. She was working, Hannah wsa working, Sopheak was babysitting Charlie.  MOM  for sure had the time! God is good and the Mom somehow had 75 minute hours when the rest of you still hd the standard 60. Caleb and new wife Tiffany  with son Bryden got in Friday mid day from Kentucky. When everyone met up at the church for rehearsal, Tiffany jumpoed right in to helping Hannah decorate the arch underwhich everyone would pass at the entrance f the church. With turquoise tulle  and oddles of white silk flowers, it was very pretty! Thanks to both of them for their beautiful work! My dear friend Jenny and I decorated the pews of the church with white silk roses tied in turquoise ribbons , I sewed the ring bearer pillows to match and decorated the flower girl's baskets too. Simple but so pretty!
THE WEDDING. It was  L O V E L Y!!!!!!!!!! Malachi and Sopheak were beyond precious and the whole service was nearly picture perfect. Our friends Jenny and Rich stood in for Sopheak's parents and Rich walked Sopheak down the aisle and presented  her to Malachi. Two of  their boys   are Malchi's best pals so were best man and grooms'men, two of their boys are adopted from Liberia and served as ring bearers. Their daughterwas our wonderful photographer. With Naomi and our grand daughter Mady as flower girls  and Leah, Jael and Esther as bridesmaids, it was a wonderful , international around the world family celebration!  A dear friend of Sopheaks' who also knew Malachi has obtained his studnet visa  and is studying in Texas.  He flew in for the  wedding, our dear friend Polina here in town who is alos Khmer, was  thrilled to have so many people with whom to converse in Khmer! Missionary kid   friends form Cambodia who now live in OKC  came up as well. WHAT FUN!!!!!!!!! 
The wedding ceremony was so beautiful, the reception was casual and fun.not wihtout its glitches  but fun andI so appreciate all our friends who popped into the kitchen to help put food out and keep it miving. I am so sorry to all of them foe what I think was my BIG goof...............three pounds of sliced meat (98 slices of hone y ham) never made it out for the guests. I found the meat in the fridge as I as cleaning up............. but itseems to have been OK.  The cheese cake  instead of traditional wedding cake was a big hit. I served lots of  fruits and sauces for toppings  as well as a triple chocolate grooms' cake........no shortage of goodies even if the han was MIA!
Sopheak and Malachi had asked me to sing, but the song they requested didn't have a sound track available. The karioke vrsoion was  so  Elevator Music I summarily rejected it.  Our family  song   however "Masterpeice " by Sanid Patti was the perfect fit  and that is what I sang. After their poignant vows I do not know quite HOW I was able to sing  but that song was my deepest heart felt gift to both of them from all 4 parents and it went well.
In between wedding festivities there was the death of Riblet, and  the ongoing trial for cusotdy of Jon's son  Blake.  THAT was Thursday.  I was  really sad that Ribelt died. She was  such a cutie , but it seems that Worthless  goat is able to care for one baby and Todd is thriving.  we put him back with hr "jsut to see"  and she took him and let him nurse!!! I was so glad to be able to be with Hannah for that afternoon of trial and testimony! I was doubly glad that Charlie was able to be with her too!!!! Not  finally decided as we'd hoped,that case resumes on October 7, but I feel confident that Jon is going to prevail as custodial parent of 12 1/2  year old Blake. He NEEDS to be!!!!
Daniel has had another milestone  in that today he was fussy  to tell me that he was hungry!! He has never done that before ever!!!!! Feeding was no easier, it never is, but HE TOLD ME!!!!!!!!!!!!!!!
I do not know what all God has in store for us as Daniel's family, or for Daniel as the miracle baby who got out of Liberia  during a suspension, but God has sustained him for a Purpose  and that is undeniable.
His sweet smile  when he is not irritated  can rally light up a whole house...not just a room!  Even when he is irritated, I know that he is sensing "something" and reacting. That is important!!
Wedding over its back to "regualr life". Tomorrow Naomi and I will go to her pedi-gastroenterologist for a check up and lab work to test her Hep B  viral load numbers. Her count has been climbing , her doseage was increased in May so now we'll test to see if the increased dose will be  of any benefit to my sweet 8 year old daughter.  If not, I don't know  "what".  her options are very very limited. God knows that too, and I trust Him completely. Daniel will see his pedi gastroenterologist  on Sept 7. Trustfully we will schedule Daniel's Mickey button surgery for his feeding tube.TRUSTFULLY surgery will be scheduled for shortly after our consultation!!
So the rest of this week? Pay bills, finish praise and worship music for Sunday and  have  a worship practice on Thursday night, set up some curriculum for our new school year and Friday I HAVE A DATE!!!!!
In November  2009   I bought Charlie tickets to Sean Hannitys' FREEDOM CONCERT  in Tulsa. He has wanted to go for seveal years but there was not a concert close  enough. These tickets were his Christmas gift and he has been waiting  all year for his Christmas present!  I splurged and got  REALLY, I mean   
 R E A L L Y     good tickets! Daniel will go with us but those Row 2 seats on the floor should have plenty of room for his  jogging  stroller.  I am shifting gears to prepare for Esther's wedding in early November as  I set up school  and  prepare for Daniel to have "Mickey button"  feeding tube surgery in September too. I can not wait fo that surgery!!!!!!!!!!!!! I hate how yucky feeding time is for Daniel and me  and I look forward to a simpler less traumatic time of meal delivery after his next surgery! God has been so good to help us get through  the feedings for now, butit is still VERY difficult.
Photos to follow from the wedding. The edited photos are not    ready yet but  I do have the raw and inedited. They are REALLY VERY GOOD as they are!!!!

Wednesday, August 11, 2010

and then there were two.....but blessings abound!

Little Magggie goat did't make it through the night. "Worthless goat" renamed Trina  and then yesterday stripped of her new name and reinstated as "Worthless goat" did not tend to her babies. At all. Won't nurse them, won't stand still for them to latch on, found kicking her babies more gratifying than letting them nurse. I found them mid-day in the barn and  I really thought that  Maggie was already dead. Riblet and Todd seemed stronger than magie but not by much. It was over100 degrees in the shade,and with no fluids or calories, I am sure  that three little goats in fur coats were feeling the temp to be much hotter. I borught them in, made some electrolye and goat milk mix, fed them with a syringe so I could log what they took in, and placed them in the bathtub for safe keeping so I could take the boys to tennis and go eat.BAD MISTAKE. Sick dehydrated newborn goats with intestinal issues  STINK UP A ROOM. We gently bathed the goats, prepared a large caged place for them outside under a tree, put towels down for softness and hoped for the best. Maggie's best was to let go and stop striving.  We have done well all day with syringes and baby bottles, the remaining babies are pretty frisky and the intestinal issues seem to be slowing down. It was too hot in the back yard so they were moved again. This time to my concrete floored laundryroom. Its well ventilated so I hope they will do well and not stink us out of that NECESSARY place!
I did not fall off my ball, did not sink a rake deep in a cake, and did not go to the political reception. Neither did the candidate for Governor, Mary Fallin,   since  SOTHOR Nacny P called all the Representatives back to Washington to pretend to have an honest election about more bailout money, but I digress.   I had dinner with my family instead, did some more wedding shopping and planning, and messing with needy goats, She's already got my vote and there is nothing Jebb Bush and I can do for each other anyhow, right? I don't need a  "Mutual Admiration Society" .
Got lots of wedding things done today, lots of details ironed out, and took Sopheak  ( and BabyCharlie) to OKC  Airport to pick up her friend Hak who is currently a student in Texas  but is also Khmer. He knows both Malachi and Sopheak so its a special reunion for the three of them. I had not seen my little Charlie Man for almost two weeks , now that Sopheak is babysiting him and I was missing him big time. I could tell from the huge smile he  gave me when I came to pick them up that he was missing me too!! He ran to me and cuddled so sweetly. THAT made for a great day even if everything else had been junk in a trunk.  It was NOT.
We had a fun day and I even got to spend some time in our pool with the kiddos.  STILL do not have the sound track for my wedding song.........................but I  got to swim!
Church is started with decorating  (THANKS   JENNY  ABBY and ANDY for your help!) and so is Fellowhip Hall. I'll go work tomorrow morning before I go to court with Hannah, Jon and Blake. TRUSTFULLY tomorrow is the last and final day of the custody "thing" and when we come out of court Blake will be in Jon's custody.
It was just a fun family filled day. Got to see and/or  talk to all my big in-town children, got to get things done AND have fun together. I love the bond between Hannah and Jon wiht Malachi and Sopheak as I see it growing. Love having Malachi and Sopheak back home and entertaining their friends too.
Living  a  super blessed week inside of a SUPER BLESSED LIFE! No everything is not perfect, but my God IS and His way is perfect. On His path for me, life is perfect! Blessed be the Name of my Lord!

Monday, August 9, 2010

But that is not all!

"But that is not all!


Oh, no.

That is not all...
"Look at me!

Look at me!

Look at me NOW!

It is fun to have fun

But you have to know how."

This Calico Acres Mamma, tender of goats and children KNOWS how to have fun and has no intention of getting up on a ball OR of falling offf............. I love "The Cat in the Hat" and all I could think today as wedding dresses came Fed -Ex and didn't fit, re-ordering was not going  so well,  things were not getting done very efficiently or completely,  and the "To-Do" list was  not getting shorter, the girls came running in from the goat pasture to announce that "Worthless Goat" had had twins!! We had no real idea that this overweight goat was pregnant, not really. I knew there was a "Ribs as guilty party" chance that she could be...........but nah.............he's a big  goat, she's very small and fat...Let's just say I  obviously underestimated hormonally driven ingenuity. I ran to the barn and saw not two but THREE new born baby goats! Tiny baby goats, cute cute cute tiny  day old babies. They must have been born yesterday after the boys did the morning  feeding  and milking and went missed by the girls who tended the herd last night  after dark because the babies  were all cleaned up, dry and frisking around in the barn. Two sweet does and a buckling now have joined the farm family. Oh, and "Worthless Goat"?  We've changed her name to Trina....playing off the tri/three thing....
                                                    INTRODUCING....
Riblet and Maggie


Maggie looks  just like her mommy
Riblet  looks  JUST like her Daddy

                                            Todd, named by Naomi here with his sisters. He is much larger than they are but he is still a very small goat   What a fun and unexpected treat the babies were!

 Got the misfitting dress ordered, and it "should "  be here two days before the wedding. My sound track for the song Malachi and Sopheak asked me to sing? Still out there somewhere, so I'm practicing with the original artist. I do have the table and chair count and the number of pews in the auditorium so I know how many to deorate; that's some progress, yes?? Got all the eye doctor and chiropractor appointments set up for this week, and a designated driver for me while I go to OKC and  pick up a friend coming into town for the wedding.
OK maybe I am juggling up on a ball.  I won tickets to a  reception tomorrow night in OKC at the former  OKC mayor's house , for the winner of my political party's  Gubernatorial primary. Not only will Charlie and I  get to meet Mary Fallin , but JEB BUSH is going to be there too.......I'm trying to hop on my ball and get to OKC without dropping the cake and the rake and the gown.    Bets  anyone???

A Milestone Morning!

This is so huge to me!!!


This morning when I started to put Daniel down on the sofa so I could get a cup of coffee and prepare his car seat to take him with me taking Jael to work, he CRIED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He almost always cries when I pick him up. He is so tense and his arms and legs are so stiff, especially , his right arm and left leg, noticeably more than the other combination, and picking him up, even when I speak to him and stroke him first, causes him to be scared, to tighten up even more, and to cry, even if only a tiny bit or a huge protest. If I cuddle him and repeat " That's all, that's all " to the things that scare him or startle him it seems to help , but this morning he CRIED WHEN I PUT HIM DOWN!!!!!!!!!!!!!!!!!!!!!!!!! I was so stunned and amazed that I picked him right back up again...AND HE STOPPED CRYING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It was wonderful!! I am used to him being irritable, it comes with the disorder, I am used to having to sooth and calm him for a while before he knows its me and that everything is OK, but after that, he is usually just "there" demonstrating little emotional presence until I do something that scares or ticks him off.
     TODAY WAS TRULY A MILESTONE !

This whole weekend he has exhibited more personality than we have seen since bringing him home . He "talked and talked " Friday night when Charlie, Daniel, and I went out to dinner and I thought he was just responding to the noise levels in the restaurant. Daniel LIKES noise, even more noise than can be heard frequently at our house, he likes noise, but even when we got home, he was still smiling and talking : "roaring" is a more apt description of what he does but he was quite animated and quite verbal all weekend.

Even this morning when I got him out of bed he didn't fuss but a tiny tad and he started to talk to me right away. That is a first as well! He seems , I believe he is HAPPY! Not just "there" or irritated, scared, crabby, complacent, but HAPPY and recognizing touches and voices that are triggering HAPPY! Yes I eventually had to put him in the car seat, and he protested, but only a little bit after which he went into complacent mode till we got home and I took him out again.

I am praising God for whatever is going on inside Daniel's brain ! His eating situation is the same, and that is miserable for us both, but this alert and animated personality with an expressed preference for me to hold him, an expressed knowledge that he has been put down and an expressed dislike for it..........

OH MY HEART!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Be it the shunt taking pressure off Daniel's brain stem, or a healing in progress, or soemthing else, I know that God has ordered all of Daniel's days, and all of mine as his mamma. This day is particularly precious and one I will ponder  in my heart for a long long time!!!

Saturday, August 7, 2010

Meeting friends When Cyber space becomes Air Space!

Meet my friend Kellie and her sweet awesome son Sutton! We've been "Cyberfriends" for several years, we've spoken on the phone  numberous times, shared prayer requests and praise reports back and forth in an online prayer and fellowship group but have never met "Face to Face" until today. Kellie and her husband  had a   family wedding to attend which was  so close to our home town, we really wanted to be able to greet each other in real live  huggy- person fashion.  WOW!!! I have the greatest friends on earth, I really do!!! Having lunch with Kellie and her menfolk was so special. Charlie and Shannon seemd to hit it off quite well, and Sutton was super sweet with Daniel too.Tortillas, chips, salsa, fajitas  and lots of tea  and Dr Pepper added to our animated lunch. Malachi and Sopheak came by too, Esther was our server.......before I knew it there were physical challenges being offered and bets taken over whether or not Kellie could indeed eat her weight in cheese and just who was more serious abour their tortillas. Our time together came to an end far too quickly, but was a get together I hope we will be able to recreate here again  and in Kellie's own neck of the woods!!
Pumped high on friendship,  I finished off my afternoon at the feed store buying farm supplies, returning those skirts and blouses we really didn't like  back to Belk,  buying  Mady's dress while thye still had ONE  in her size, returning  some unneeded wedding items to Hobby Lobby, buying additional needed items, on to Lowe's for a few things for Charlie, Walmart for some food, Wendy's for some pre-made dinner salads, pick up Gideon, go home  , cook dinner , feed Daniel, fix errors in my church music over head copy and send them off, play with Daniel while Malchi and Sopheak took most of the other kiddos to their house for movie and popcorn night, Esther popped over to ride horses with Naomi,  Played with Daniel some more. He has been more alert and happy today and more verbal than I have ever seen him!!! He has chatted and laughed and roared and had what seemed to be  a really great day!!! When we have his Mickey button and feeding tube, his life will be almost always happy. If  continued therapy can loosen up his tight limbs so that touching them  or stretching them to take off or put on clothing ceases to cause him the extreme irritation and pain we see now , I bet he will be laughing and talking even more! What a joy to have him so responsive. WHAT A JOY!

Friday, August 6, 2010

Wedding plans, birthday busyness, and doctor stuff too!

WHEW!! Busy week for sure! Dress shopping on Wednesday was pretty much yuck. Fun , but yuck.  We didn't have time to go to OKC  or Tulsa to a mall; we were limited to the stores here in town. We got a late start on our only day to go shopping at all, an unplanned run south of town to drop the boys off at their pals' house popped into the schedule,  and just  as we were loading up stroller and baby and girls girls girls, the phone rang with  a  "There's been an accident" coming from my friend to whose house I had just taken the boys!  Deep breath. Isaiah had  hit his head in the pool and was bleeding quite a lot. My friend Lynn didn't think that it needed stitches (being a super experienced mom of 6 boys herself!) but probably steri-strips, of which she was out.  She thought  that I really needed to assess it myself anyhow. SOOOOOOOOOOOOOOOOOOOOOO,  we finished loading up, I told the girls that we'd take steri-strips, go check on Isaiah and IF he needed stitches, we'd take him,  and shop after. IF he was Ok, I'd dress his head and we'd be on our way. THANKFULLY, he had a gash that was truly not quite  stitch-worthy and my criss-crossed steri-strip job seemed to be ,at least temporarly, sufficient. We dosed him with Motrin for headache, I hugged him, kissed his forehead , thanked God for safety even in an accident and THEN, we girls  hit the road! First stop; Mexico Joes for lunch so we could request to be in Esther's section and hang out with her too. She had to work on my only day to shop, and I had had to care for Hannah's childrenon her only day to shop. This was my best compromise motion.
Shopping for bridemaid's dresses,  decorations for the church, shoes for the little girls were our order of business. Without going to a bridal store and ordering dresses, it is super challenging to find three dresses of the same style and color in three very different sizes. The ONE dress we found did not fit 2/3 of the girls in an attractive fashion whatsoever. The next option, a fun -print skirt which we found in all three sizes,  but finding a fun blouse...............not such great fortune. The end result was not what we'd hoped for. Next skirt option with blouse ,OK, but no one was really happy.   Decorations at Hobby Lobby.....we have selected the "wrong color" for this summer apparently. Since when is turquoise  NOT a popular summer color???
I found just enough tulle netting and ribbon  to decorate the wedding arches and we will color in with white flowers. I think we have enough ribbon to tie single white roses for the pews and for the girl's bouquets. HOPE!!!!!!!!!!!!!!
Then on to Sopheak's other mission:  A BATMAN SUIT for Malachi for his birthday (yesterday)  Our costume store had one, for more than she planned to spend, but she knew he REALLY  wanted that suit. HE'd been looking all over Cambodia too. We split the price, got his suit and had good success finding shoes for Naomi and Rachel at JC Penney.  Online later that night I found dresses at Dillard that were much more to everyone's liking so I ordered those. I am the "Return queen" anyhow so a trip back to Belk will beon today's schedule!  AHHHHHHHHHHHHHHHHHH
So Malachi's birthday yesterday. His requested dinner was family all together, grilled chicken, mashed potatoes, green beans   and chocolate cake. Gotta brag jsut a smidgen here. My  cake turned out amazingly delicious! Chocolate layer cake, with a semi-sweet chocolate filling, chocolate butter cream frosting, drizzled with more of the semi-sweet filling as a glaze, and for  fun, a Batman toy and his morotcycle as a topper!
Today is music organizing and food planning. NOT SURE  how many people I am planning for, and I have a pretty wide range.Hoping for more RSVP info today. Several friends suggested that  I text message and request a reply.  Its all coming together and we are excited!!! We met with a photographer yesterday  but then had an offer of a gift photogrpaher almost simultaneously!
The "Something old"  is also going to be  the "Something blue" when Sopheak wears my mother's reset diamond ring. The diamond was HER MOTHER's  engagement stone, my dad had it reset for my mom years ago  in a white gold setting with saphirres around the diamond. Hannah wore it for her wedding . ( My mother is 83, her parents were married for a while before she was born so that stone is nearly 100 years old!!!) Hannah gave the "Something borrowed" with her  wedding tiara; the "Something new"  is of course the wedding gown. That is not a Cambodian tradition so we had fun explaining it to Sopheak who really liked  the little rhyme and the tradition.
We are still working diligently to find a pediatric gastro-enterologist for Daniel so we can schedule a consult and "Mickey button" feeding tube surgery. THAT  has not been so successful , I am not happy to report. Our current insurance program  requires a physician ordered referral. I can't just make my own appointments and the ones I have requested have NOT happened as promised. Making  follow-up phone calls to ask "Why?" "Why not?" "When?"  is not one of my favorite activities, especially when I am super busy with the rest of my life and I know I have DONE  my job. Lord please keep me patient and compasssionate and POLITE!!!!! Oh yes, I can be absolutely none of  those things far too easily!! There is a very good reason why I have a framed "Fruit of the Spirit" painting over my office corner!! I need to be reminded that JOY  is love's strength, PEACE is love's security, LONG-SUFFERING is love's patience,
GENTLENESS is love's conduct,  GOODNESS is love's character, FAITH is love's confidence, MEEKNESS is love's humility, TEMPERANCE is love's victory, and that "against such there is no law."
Please pray with me that I do  continue to ( and better and better ) exhibit the Fruit of the Spirit which is within me and that I do not allow the "stuff" of life to blow my testimony with  family, doctor's offices or wedding related persons? We do not need a banging gong or clanging cymbal  where God's love should be flowing freely. I do not want to be that gong or cymbal, but a sweet sweet sound in the ear of my God and my world!!

Tuesday, August 3, 2010

One more reason why I believe in NUCCA Chiropractic!

Many of the members of our family see the Chiropractor for a variety of issues. Our Chiropractor belongs to NUCCA, National Upper Cervical Chiropractic Association, which practices gentle manipulations of the first cervical vertebrae alongwith several wonderful  deep massage tools called "Activators". When more than a dozen "traditional doctors" were not able to diagnose, treat, or help our daughter Hannah, it was Dr Matt who assessed her issues, began to treat her and the results were amazing! After 8+ years of headaches diagnosed as non-migraine, migraine, sinus, non-sinus, eye related, not eye related, digestive issues not resolved by gall baldder surgery ( on a 16 year old) pyloric sphincter surgery three times,   ultimately black outs which caused   a serious car accident and a voluntary surrendering of her driver's license.Dr Matt was the one who was able to bring healing to Hannah. She has been symptom free for 5 years! Dr Matt has done wonders for Malachi who was in such a messed up spinal situation that short games of basketball put him in such hip and back pain,  he thought that he'd have to quit the sport he loved   in high school. After seeing Matt for several months of treatments, he too is a changed person! To his honest credit  when  I stopped responding  to being  adjusted , he x-rayed and he diagnosed the  arthritis in my hip joint and told me that chiropractic  would likely no longer be beneficial to me, but deep muscle massage, Glucosamine with MSM,  good hydration and calcium supplements, and NSAIDs like Motrin  would help. Until the arthritis spread in my hip socket when I had hip  pain being adjsuted did help remarkably. ONLY Matt was able to help unlock my knee last year when it locked up for 9 days. It took him a full hour of working on my knee but without puling , jerking or twisting he freed up my knee. He has helped Isaac and Jael as well. When we started  talking about bringing Daniel home, Matt asked me if he could provide care for Daniel to see if he could help him and he believed that he could do him some good. When Daniel first came home  he was  irritable , very tight, ver rigid. We saw Matt right up to the day before the shunt surgery.We were told that Daniel could start his stretching exercises with me about a week or so after his surgery and Matt affirmed that this would be a good time to resume chiropractic adjustment as well.
I shared yesterday how Daniel has been more irritable since his surgery, tight and not sleeping well, cranky and unhappy. We saw Dr Matt today. He noticed immediately that Daniel was as tight and irritable today as he was the first time he saw him and started adjustments. The results were not all immediate, but he did begin to relax and stretch back out like he'd been prior to surgery.
TONIGHT
 MY BABY BOY WAS LAUGHING  AND SMILING
AND  TALKING TO ME AGAIN!!!!!!!!!!!!!!!!!!
I cried like a baby when he let out with that first coo-sound and smile !  All  Icould s ay was "Thank You Lord" and "BABY  Mommy MISSED you!!!" I had called the neurosurgeon earlier in the day to discuss my concerns about Daniel's status. The thought was perhaps a shunt malfunction, but none of the symptoms indicated that, perhaps ear infection independent of the shutn surgery, a virus making him feel sick  and irritable, constipation, etc etc. thing by thing we eliminated the obvious possibilities. Daniel SHOULD be feeling better, not worse for having the surgery done. I agreed!
Daniel took a nap this afternoon, ate reasonably well ( we still need that Mickey button and feeding tube ASAP...another story for another post but the kids all saw him laughing and being  happy again and recognized how different he is since seeeing Dr Matt this afternoon. When I picked him up after his nap he smiled, was not touch sensitive and didn't have a protest over diaper change time either!!  I've not heard a "Cat cry" or that whiney complainey cry Daniel has been doing since surgery either. .
How thankful I am that Daniel IS  feeling better!! How thakful I am that we were able to get the right care for the issue!

Monday, August 2, 2010

Consume me from the Inside out!

God put that song on my heart some time ago to teach to our church body but  He also put a  check in my spirit about the timing. Last week when I thought I had sensed where God wanted me to go with the worship music for Sunday He began to "trouble my waters" and when my elder called me to talk about the service  and what God was  stirring in him,I knew that God was not done with what I'd put together mentally or on my computer page. THIS WEEK "Inside Out"  WAS  to be a part of our worship. Do you know this song? I LOVE IT!!!!

"From The Inside Out "
Verse 1

A thousand times I've failed

Still Your mercy remains

And should I stumble again

Still I'm caught in Your grace

Everlasting

Your light will shine when all else fades

Never-ending

Your glory goes beyond all fame



Verse 2

Your will above all else

My purpose remains

The art of losing myself

In bringing You praise

Everlasting

Your light will shine when all else fades

Never-ending

Your glory goes beyond all fame
In my heart in my soul

Lord I give You control

Consume me from the inside out Lord

Let justice and praise

Become my embrace

To love You from the inside out!!!!!!

Everlasting

Your light will shine when all else fades

Never-ending

Your glory goes beyond all fame

And the cry of my heart

Is to bring You praise

From the inside out

Lord my soul cries out




OH YES  LORD....the cry of my heart is to bring You praise.from the inside out OH MY SOUL CRIES OUT!!!!! LORD!

The flow from "I'm Coming Back to the Heart of Worship" to "the old hymn "Take My Life and Let It Be Consecrated Lord to Thee" to that song  and into "Spirit of the Living God Fall Fresh on Me" was purely God's creation..............not ME, not YOU, not US, but "all about You Jesus" bringing Him praise because we are , we have, we will be consecrating  our lives to Him alone   so  that we  can  pray
 "Melt me, mold me , use me  fill me!!!!"
SO how does that affect or influence my life when I am not thinking about leading praise and worship? More and more it is EVERYTHING! Kari Jobe posted a comment on her Face Book page theother day which SO aptly described what I was feeling. She said that the more she is involved in worship the more RUINED she becomes because God's presence is so wonderful and awesome!   R U I N E D  is the word...ruined for silly worldly things that don't matter a fig toward eternity, RUINED for wanting to be in God's presence ALL the time, to have God's presence in everything I do or sy. and in this I fail so miserably but its my desire: to be ruined for the earthly "Stuff" because God has set my feet on "Higher Ground" That's not to say disinterested in the goings on about me, NOT AT ALL! I believe we are to be good stewards of ALL that God blesses us with from ciitzenship in our wonderful country to how we care for our things AND all of the HUMANS whom God puts into our lives, our jobs, callings, gifts, funds, our time................because its all part of the life that God has given to each of us : TO ME.  I want to be interested in all the goings on of my  husband, (many ) children and then other family/friends... . I don't always do that so well, or what I do is not perceived as well as I intended it to be manifested: hurt feeelings and anger result. HOW do I let You fix that  Lord?? Consume me from the inside out  so that I am as sensitve to all the needs of all the people you've blessed me to  love on. Melt  ME...MOLD me, FILL me.....USE  me because I am so flawed and so inadequate unless I am consecrated  to You! Please Lord help me to lay down my ME STUFF every day, as often in a day as is necessary for the sacrifice which is ME to be consumed for Your glory and Your purposes! Amen   yes and  very amen!
Daniel is different" since his surgery. He has not really smiled since he came home  from the hospital two weeks ago. He is more easily aggitated and irritated. Sunday he woke up at his regular time but was so on edge that he cried literally ALL day..............lightly or with gusto, he cired , fussed, complainedand cried for about 8 hours. He has a slight fever, nowhre that I touched prompted a more impassioned fuss than if I didn't touch him. He could not fall asleep; eating was its usual difficult time of no swallow...poke or prod, a bit of swallow and then back wash.....with some extra back wash . ONLY me holding him, thumping on his back relaxed him and helped him to not be crying non-stop. I mean thumping HARD...... I thought, but it calmed him and after being  awake for 9 1/2 hours he fell  asleep...till 11PM and yes he was awake and fussy till 5:30 this AM. He has not slept in the bed with me before last night butthat was what he needed: very close contact and constant thumping on his back. He had a better day today for which I am very thankful, but no smiles again today...only the absence of irritation. I miss his sweet smile. I wonder if the surgery was harder on hin than we'd anticipated, I wonder if he hurts somewhere, if he is feeling "used up"  and worn out already. I wonder how long it will be until he gets his feeding tube ( Mickey button) in so that feeding does not have to be  the yucky thing it is right now.....................the more I read about children with his diagnosis, the more I wonder how much time  he "lost" by being totally untreated for over two years. Even children who are treated from birth tend to not live very long.........................I do not "go there" in terms of all the "what-ifs" of life, but in my spirit I have sensed  for quite a while that Daniel will probably not be with us a long long time , unless God chooses to intervene in some way...which  we would welcome and expect and not be surprized about, but we have thought all along that God was going to use Daniel   just as he came home, for his whole life as an object lesson of God's own uncondtitional love for us.  I  think that God would want to show His people that WE  are  all essentially Daniel in the spiritual sense, needing someone to do everything for us, flailing our arms quite often, and   making some noises,   frequently complaining,  acting in a purposeless fashion................yet God loved us  and sent His Son to die for us., as individuals.  I can't "do" anything for  Daniel , but what God can do to each of us  ON THE INSIDE goes beyond anything : any box that anyone has ever put God in!  I think we have no real clue because we are so busy flailing  about,  but God has  the Plan.  THAT is the path I want to be on, stay on and lead others to find. If I do not invite God to consume me  so He can use me, I will not be able to do any of what I know God has called me to do, certainly NOT  'bring Him praise'! Lord I am desperate for YOU!!!