Glasses!

I got my glasses today, pictures to follow! Have a fun & SAFE night!!!



Please see previous post & pray for Ella!

HOPE-ing for Seven Year Old Ella Hope - DIPG Cancer Warrior

Doctors say there are no options except to keep on praying and hope-ing for 7 year old Ella Hope.
Written by Alexandra Mikaela

Ella was diagnosed with Diffused Intrinsic Pontine Glioma (DIPG) on December 7th, 2007. This specific type of cancerous tumor has taken the lives of many children. This tumor is rare, highly aggressive, highly malignant, and has not once been survived as far as we know. Receiving it means to receive a death sentence. But with this you don't wait 30, 20, 10, or even 2 years to take your last breath; It is known to kill the child in 9-12 months after diagnoses, at best. And, it only takes our children. Mainly children between the ages of 5 and 9. No adults, just our precious, innocent children.

In less than two months, it will be a year since Ella was diagnosed. And yesterday they were told that despite radiation, a trial drug (stopped after first administration due to strong side effects) and chemotherapy, and more, which, praise the Lord, has not stopped this little ball of sunshine from being her happy, "peppy" self. The tumor has grown very significantly, and is a time bomb in her precious little head. But there is a first time for everything, and no one is giving up HOPE for young Ella Hope.

Though they are preparing for the worst, there is always HOPE...even in the case that Ella's earthly life expires, there is HOPE in Jesus Christ, and there is HOPE for a cure for the children who have been diagnosed with this monster and will be in the future. Ella and her family needs your prayers! Pray for COMFORT, PEACE, and a PAIN-FREE TRANSITION if it is meant to be. Whatever you prayer may consist of, please, include Ella and her family in your prayers.

And please, never loose HOPE for a cure for childhood cancer. For someday, you may be looking at an MRI, being told that HOPE is the only chance your child has left.

Click the image below to visit Ella's CaringBridge site, learn more, subscribe to updates, view pictures, learn how you can help (there are multiple ways!), and leave messages of love, care, support & prayer

Doctor Appointment Results - Update is Up

Update on the multiple appointments recently, including today's cardiologist appointment, and my new set of tubies

Click Here

The ballerina rose gracefully en pointe and extended one slender leg behind her, like a dog at a fire hydrant...

I found this at someone's blog and decided I had to post it. You will laugh your head off!!!

http://www.losteyeball.com/index.php/2007/06/19/56-worstbest-analogies-of-high-school-students/

So here is the post:

------------------------------------------------------------------------------------------

Apparently the washingtonpost held a contest in which high school teachers sent in the “worst” analogies they’d encountered in grading their students’ papers over the years. (I place “worst” in quotes because many of these actually strike me as quite witty). The top 25 of these have been circulating around the “Sandra Bullock” (”net”, get it?) recently, but I decided to post all 56 that I was able to find. Here they are, in their order of objective funniness (in my opinion):

1. Her eyes were like two brown circles with big black dots in the center.
2. He was as tall as a 6′3″ tree.
3. Her face was a perfect oval, like a circle that had its two sides gently compressed by a Thigh Master.
4. From the attic came an unearthly howl. The whole scene had an eerie, surreal quality, like when you’re on vacation in another city and Jeopardy comes on at 7:00 p.m. instead of 7:30.
5. John and Mary had never met. They were like two hummingbirds who had also never met.
6. She had a deep, throaty, genuine laugh, like that sound a dog makes just before it throws up.
7. The ballerina rose gracefully en pointe and extended one slender leg behind her, like a dog at a fire hydrant.
8. He was as lame as a duck. Not the metaphorical lame duck, either, but a real duck that was actually lame. Maybe from stepping on a land mine or something.
9. Her vocabulary was as bad as, like, whatever.
10. She grew on him like she was a colony of E. coli and he was room-temperature Canadian beef.
11. The revelation that his marriage of 30 years had disintegrated because of his wife’s infidelity came as a rude shock, like a surcharge at a formerly surcharge-free ATM.
12. The lamp just sat there, like an inanimate object.
13. McBride fell 12 stories, hitting the pavement like a Hefty bag filled with vegetable soup.
14. His thoughts tumbled in his head, making and breaking alliances like underpants in a dryer without Cling Free.
15. He spoke with the wisdom that can only come from experience, like a guy who went blind because he looked at asolar eclipse without one of those boxes with a pinhole in it and now goes around the country speaking at high schools about the dangers of looking at a solar eclipse without one of those boxes with a pinhole in it.
16. Long separated by cruel fate, the star-crossed lovers raced across the grassy field toward each other like two freight trains, one having left Cleveland at 6:36 p.m. traveling at 55 mph, the other from Topeka at 4:19 p.m. at a speed of 35 mph.
17. Shots rang out, as shots are wont to do.
18. The little boat gently drifted across the pond exactly the way a bowling ball wouldn’t.
19. Her hair glistened in the rain like a nose hair after a sneeze.
20. The hailstones leaped from the pavement, just like maggots when you fry them in hot grease.
21. They lived in a typical suburban neighborhood with picket fences that resembled Nancy Kerrigan’s teeth.
22. He fell for her like his heart was a mob informant and she was the East River.
23. Even in his last years, Grand pappy had a mind like a steel trap, only one that had been left out so long, it hadrusted shut.
24. He felt like he was being hunted down like a dog, in a place that hunts dogs, I suppose.
25. She was as easy as the TV Guide crossword.
26. She walked into my office like a centipede with 98 missing legs.
27. The plan was simple, like my brother-in-law Phil. But unlike Phil, this plan just might work.
28. The young fighter had a hungry look, the kind you get from not eating for a while.
29. “Oh, Jason, take me!” she panted, her breasts heaving like a college freshman on $1-a-beer night.
30. It hurt the way your tongue hurts after you accidentally staple it to the wall.
31. It was an American tradition, like fathers chasing kids around with power tools.
32. He was deeply in love. When she spoke, he thought he heard bells, as if she were a garbage truck backing up.
33. The politician was gone but unnoticed, like the period after the Dr. on a Dr Pepper can.
34. Her eyes were like limpid pools, only they had forgotten to put in any pH cleanser.
35. Her date was pleasant enough, but she knew that if her life was a movie this guy would be buried in the credits as something like “Second Tall Man.”
36. The thunder was ominous-sounding, much like the sound of a thin sheet of metal being shaken backstage during the storm scene in a play.
37. The red brick wall was the color of a brick-red Crayola crayon.
38. She caught your eye like one of those pointy hook latches that used to dangle from screen doors and would fly up whenever you banged the door open again.
39. Her pants fit her like a glove, well, maybe more like a mitten, actually.
40. Fishing is like waiting for something that does not happen very often.
41. They were as good friends as the people on “Friends.”
42. Oooo, he smells bad, she thought, as bad as Calvin Klein’s Obsession would smell if it were called Enema and was made from spoiled Spamburgers instead of natural floral fragrances.
43. The knife was as sharp as the tone used by Rep. Sheila Jackson Lee (D-Tex.) in her first several points of parliamentary procedure made to Rep. Henry Hyde (R-Ill.) in the House Judiciary Committee hearings on the impeachment of President William Jefferson Clinton.
44. He was as bald as one of the Three Stooges, either Curly or Larry, you know, the one who goes woo woo woo.
45. The sardines were packed as tight as the coach section of a 747.
46. Her eyes were shining like two marbles that someone dropped in mucus and then held up to catch the light.
47. The baseball player stepped out of the box and spit like a fountain statue of a Greek god that scratches itself a lot and spits brown, rusty tobacco water and refuses to sign autographs for all the little Greek kids unless they pay him lots of drachmas.
48. I felt a nameless dread. Well, there probably is a long German name for it, like Geschpooklichkeit or something, but I don’t speak German. Anyway, it’s a dread that nobody knows the name for, like those little square plastic gizmos that close your bread bags. I don’t know the name for those either.
49. She was as unhappy as when someone puts your cake out in the rain, and all the sweet green icing flows down and then you lose the recipe, and on top of that you can’t sing worth a damn.
50. Her artistic sense was exquisitely refined, like someone who can tell butter from I Can’t Believe It’s Not Butter.
51. It came down the stairs looking very much like something no one had ever seen before.
52. Bob was as perplexed as a hacker who means to access T:flw.quid55328.com\aaakk/ch@ung but gets T:\flw.quidaaakk/ch@ung by mistake.
53. You know how in “Rocky” he prepares for the fight by punching sides of raw beef? Well, yesterday it was as cold as that meat locker he was in.
54. The dandelion swayed in the gentle breeze like an oscillating electric fan set on medium.
55. Her lips were red and full, like tubes of blood drawn by an inattentive phlebotomist.
56. The sunset displayed rich, spectacular hues like a .jpeg file at 10 percent cyan, 10 percent magenta, 60 percent yellow and 10 percent black.

Tell me... (a poem by ME)

Tell me...

How do you soar like an eagle, when surrounded by turkeys?
How do you jump in quick-sand?
How can you escape what you cannot escape?
Living with those you cannot stand?

Tell me...
How do you fly without wings,
The will to be free, with your feet tied to the ground,
How do you reach your potential,
With everything holding you down?

Tell me...
But then again, don't.
I don't want to hear what you'll say.
I've heard many opinions throughout the years
But right now, my opinion, is that only God knows His ways

(C) Alexandra Mikaela 2008 ALL RIGHTS RESERVED
You MAY: Send nice comments =)
You may NOT: Copy this in any way shape or form in part or in whole; redistribute it in any way shape or form in part or in whole (including, but not limited to, by posting it on another website or printing it without express permission); sell it in any way shape or form in part or in whole; claim it as your own, claim that you wrote it in part or in whole, in any way shape or form in part or in whole; or in plain terms, do anything with it.

Prayer Request!!!

I just heard my mom on the phone talking with the new insurance people, and they told her they don't have dental. I know I didn't hear the whole story, but I have many cavities because it is very hard to get to the sink or even just to have time to set everything up in bed, and weak teeth as well...and I'm pretty sure she said they don't have vision coverage either, and today I go in for glasses...with my disease I could possibly go blind and we really need prayers about this new insurance. I'm trying to put my trust in God but I need some help, so please pray for my trust in God, for my health, my appointment today, for my mom to get through this, and for the insurance to work out for God's divine plan!!!

---------EDIT----------

I have just found out my rhuematologist will not be covered whatsoever and he is the only peds one in the state. This is devastating. Last year alone we paid over $13k in co-pays alone, and then we found another stack of receipts that would add a lot more to it. Right now we have no idea what we are going to do or how. We are at a total loss here and need all the prayers we can get. I take that back- there is NOTHING we can do right now...only God can, so we need your prayers for an insurance intervention!

Last night I asked my mom what circumcision was. So she drew me a picture, and explained it. I said, "Like peeling a banana?" and she said basically, yes.

This morning my mom asked if I wanted a banana with my breakfast. I said, "sure", and she got me a banana.
As she went to leave the room I called out, "wait, Mom, I need you to circumcise it for me!"

"EEEEWWWWWWWW"

Depression

Today I want to tell you about my experience with depression. I really don't need to say too many words of my own, but rather I'll quote the words of Job, chapter 6.
I know now that it wasn't God shooting my down with arrows, but this is all how I felt then.

Job 6

Job's Reply
1 Job replied,

2 "I wish my great pain could be weighed!
I wish all of my suffering could be weighed on scales!
3 I'm sure they would weigh more than the grains of sand on the seashore.
No wonder I've been so quick to speak!
4 The Mighty One has shot me with his arrows.
I have to drink their poison.
God's terrors are aimed at me.
5 Does a wild donkey cry out when it has enough grass?
Does an ox call out when it has plenty of food?
6 Is food that doesn't have any taste eaten without salt?
Is there any flavor in the white of an egg?
7 I refuse to touch that kind of food.
It makes me sick.
8 "I wish I could have what I'm asking for!
I wish God would give me what I'm hoping for!
9 I wish he would crush me!
I wish his powerful hand would cut off my life!
10 Then I'd still have one thing to comfort me.
It would be that I haven't said no to the Holy One's commands.
That would give me joy in spite of my pain that never ends.
11 "I'm so weak that I no longer have any hope.
Things have gotten so bad that I can't wait for help anymore.
12 Am I as strong as stone?
Is my body made out of bronze?
13 I don't have the power to help myself.
All hope of success has been taken away from me.
14 "A man's friends should love him when his hope is gone.
They should be faithful to him
even if he stops showing respect for the Mighty One.
15 But my friends aren't faithful to me.
They are like streams that only flow for part of the year.
They are like rivers that flow over their banks
16 when the ice begins to break up.
The streams rise when the snow starts to melt.
17 But they stop flowing when the dry season comes.
They disappear from their stream beds when the weather warms up.
18 Groups of traders turn away from their usual paths.
They go up into the dry and empty land.
And they die there.
19 Traders from Tema look for water.
Traveling merchants from Sheba also hope to find it.
20 They become troubled because they had expected to find some.
But when they arrive at the stream beds,
they don't find any water at all.
21 And now, my friends, you haven't helped me either.
You see the horrible condition I'm in.
And that makes you afraid.
22 I've never said, 'Give me something to help me.
Use your wealth to set me free.
23 Save me from the powerful hand of my enemy.
Set me free from the power of mean people.'
24 "Teach me. Then I'll be quiet.
Show me what I've done wrong.
25 Honest words are so painful!
But your reasoning doesn't prove anything.
26 Are you trying to correct what I'm saying?
You are treating the words of this hopeless man
like nothing but wind.
27 You would even cast lots for those whose fathers have died.
You would even trade away your closest friend.
28 "But now please look at me.
Would I tell you a lie right here in front of you?
29 Stop what you are saying. Don't be so unfair.
Think it over again.
You are trying to take my honesty away from me.
30 Has my mouth spoken anything that is evil?
Do my lips say things that are hateful?"

This is taken from the NIrV (New International Readers Version)

Eventually though, after my begging and pleading for the Lord to end my life, and He did not, I was filled with confusion, and hate. Why, Lord, would you do this? I thought you loved me? I know you love me, but if you do, why do you leave me to suffer? I cry and moan myself to sleep, and I wake to a place of pain that I cannot escape from!

Then because I saw no answers, I decided He had abandoned me. How could my eternal father here my cries and not at least let me know He was there? He showed me plenty of signs...but I could not see them past my physical and emotional pain. So I turned away from God. I knew He was there, but that night I told myself He was not. I declared that I was an athiest. Well, it was no good because I suck at being an athiest...really, you should have seen it! I'm sure God's angels were lined up & paying admission to see my attempts and denying the Lord and not being a Christian! Heck, I should have charged admission! But none the less, for me it was no laughing matter. I had given up on God and made myself alone.

Of course through all this I never could have killed myself. Even if I said I didn't believe in God, I did, and feared I would go to hell.

Of course, then I realized that if I didn't believe in God I very well may go to hell just the same. Which of course I didn't want to do that, so instead I tried to forget the whole thing and went back to being miserable.

Anyways, when they put me on a higher dose of anti-depressants, things got a lot better. They got even better when the doctor finally gave me some pain medication that my mom and I had been fighting for for years. A LOT better. But there were still some loose ends to tie up, and though right now my relationship with God is okay, I'm still working on it daily, and probably will be for a loonnnggg time.


My name is Alex and I have a trust issue.
*Hi Alex*

Yeah, so I think that's the big loose end I need to be working on right now. Throughout my life I've never been able to trust anyone because as long as I can remember I've been lied to, used, and let down. It's a traumatic thing on a four year old, let me tell you! It's just hard to fathom trusting someone when you've generally forgotten how to trust. God was the only one I trusted until my depression. Then I lost that and have no idea how to trust again. But anyways, that is my story with depression in a nut shell, excluding some personal details that are too depressing to think about right now. But heck, I'm sure you've already heard enough depressing stuff from me even without all the details.

Anyways, I'm going to go now...I have a happy ending waiting for me in the book of Job ;)


Job 8:21~
He will your mouth with laughter, Shouts of joy will come from your lips

Ever been so worried and disappointed about the next day/what you have to do the next day, that you just don't want to go to bed? That it just seems if you fit more stuff you want to do in today that it won't be as bad (though you know you'll just be more tired and make things worse)? Tonight is one of those nights. I have to have a semester done in about a week because I'm so behind due to appointments, being sick/etc. I know that tomorrow I'll go to church and then have to work all day, non-stop. I know I should pray about it and trust that things will all work out, but right now...well, I just don't want to! I'm like a little two year old refusing to take her nap, when I know I have too. I just...am afraid! I'm a control freak and don't want to loose control, for fear I'll loose all control and mess everything up.

Does anyone have some encouraging scripture that can help me? (And please, don't send me one that says "just do it"...my conscious is already telling me that.)
I want a promise...and I want to know that promise will be kept, not another broken promise like I've dealt with so many times with my father.

I've got to go or my mom will kill me for being up! Goodnight!

Alex

I know, I know, this is my fourth post today...

I'm still not sure who all reads this (if anyone), but I just wanted to let everyone know that I've decided I don't like the layout and am going to mess around with it some more. Sorry!

Blue Butterfly

This message is from Preshie (aka Baby Miracle)'s carepage, which I deeply encourage you to visit (name: babymiracle OR http://www.carepages.com/carepages/BabyMiracle)

I just love this...it's so beautiful!


Stop for a moment
Posted Oct 1, 2008 10:30pm

Hello all,

I know you have all lost loved ones at one time or another.
The Lord gave me this song today... and I wanted to share the words with you...

When we lost Tasa.. (Carol's beautiful 15 year old niece) I saw an outpouring of love like I had never seen before. I have lost all my sisters (4) both parents .. all my grandparents... and have come to realize it's a transition.. not an end.

Tasa opened the doors for our Preshie.. who is alive and well. We pray each day.. we are gifted with one more. We have no expectations... but are thankful for the 'moment'.

The song... stops you for a moment.. to see that some of the most beautiful and precious moments happen when time is gift that has been opened and is now closing.

God bless all of you who pray for Preshie.. for all of us who are involved in THORN's work around the world.

For some of us the thorns.. are very different.. (disease, accidents etc.)
but loss and letting go is something we will all face.

In Samoa... there are the most beautiful blue butterfly's. They have always captivated my spirit and have come to be a guiding light.. a kiss from heaven, just when I need one.

I hope you like the lyrics... the music is beautiful.. but since it's still in my head.. you'll have to wait to hear it.

I love you all... Kristin

UPDATE: THE MUSIC is done!!! Now all I have to do is get in the studio and sing it.. and find a way to post it to youtube ... Love u all K

Blue butterfly
Words and Music by Kristin Taylor

When I see a butterfly dancing alone
I always remember when I carried you home
Your fragile wings, wrapped around me
I knew any moment that you would break free
and fly away... from the pain

When I see the thorns cling to the rose
I treat them more gently, avoiding pain I suppose
Their buds open up, their beauty so grand
Then the pedals they fall in the palm of my hand
and blow away... and there I stay

Life is a long race
We'll all visit this place
Things are much clearer
as endings draw near
No time for battles
No time left for lies
It's the end of the dance for my blue butterfly

I saw a dove... set free from the cage
It's the end of a chapter...
so I've..... turned the page

Copyright Kristin Taylor/ LandSong Inc
10414 Deepbrook Drive
Riverview, Fl 33569
October 1, 2008

Passed into law today (DS Awareness)...

Thank you for letting me know this...I am so happy to hear about this new law!

This is a must read from a fellow blogger, Embracing Life as Household 6

Click Here to read!

Lots of love,
Alex

Shower Day Depression

No, it's not the various rain showers lately that has me depressed, it's the soap-and-shampoo kind of shower that has me feeling that way.

It's probably the following facts that take it's toll on me:
a) I can't stand in the shower
b) The water/washcloths/sponges hurt my skin
c) I just had [minor] surgery on my toe which was throbbing the entire time
d) My mom has to help me
e) I haven't been able to shower on my own in so long that I have to learn how to do it all over again, just like I am having to learn how to walk all over again
f) I have to sit in a wobbly, slanting, hard shower chair that I almost always almost fall off of (at least once a shower)
g) I have to look at myself (in all it's obesity)

There are plenty more reasons, but I don't want to sound like I'm unnecessarily complaining...you'd really have to have gone through it to fully understand. To be thirteen years old, almost 200 pounds from reasons completely out of your control, and having to learn how to take showers (and walk) again, having to have help from your mother, and all the rest of the stuff, it's easily depressing. Before my mom came to help me with my hair/back/etc, I found myself rocking back and forth, softly whimpering "Old McDonald", not able to use a sponge or washcloth, trying to scrub myself, just crying my eyes out...

I'm doing better now, but it sure takes its toll on me and brings back some unpleasant memories. To feel so helpless, and in a way, hopeless...well, it's just, like I said, depressing. At that moment, I just felt so hopeless...so worthless, and just started wondering what the point was; would I really ever make a difference? Would I really ever impact someone? Or was I just here...to live, and eventually die, with no one besides my mom and a few dear friends remembering me?

Sorry, I don't mean to depress you, but sometimes you just need to let it out in order to get over it.

I've got to get going and try to re-inspire myself...Off to flickr!
Lots of love,
~Alex~

Why an angel had to die...

Today as I read about another little angel lost, I decided to write a poem, instead of totally loosing it (which I still may) at the thought of yet another precious life cut short:

Fly high butterfly
Dance with Jesus in the sky
As every day goes by and by
We ask the Lord why oh why

...Why an angel had to die.

We know that death is not a period,
But a comma in the journey Home
We will see you again someday,
Until then, in Heaven you roam.

Alexandra Mikaela 2008 All Rights Reserved (seriously)

In a galazy far, far away...

...There was Sam!

Grandma Lois came over today, which was a nice treat, and Sam and Mom (and Grandma for that matter) rushed around getting Sam's project for school done. I got to go outside and take some pictures, the best of which I'll edit in later or post tomorrow after I've backed them up (glances over at the special ks) and size down and watermark the ones to remain on the computer (again glances over at the special ks). In the meantime, here are some pictures of Sam and Grandma I took today (only about half of them! Sam decided my camera was "kinda cool" and that "maybe" he wouldn't mind to pose for a few pictures)

Alexandra Mikaela 2008 all rights reserved!

What time zone is God?

Well, it is 2:08 am.
God just showed me and amazing charity, and a child, and a blog, and a God-sent!
I have been so inspired and am being pushed...to God!
I can't wait to get my hands on a bible about now! (Okay, I'm also utterly TERRIFIED as I haven't picked up a bible "just because" in sooo long, and for a ton of other reasons)
But anyways, as I sit here typing, not even remembering if my birthday party is tomorrow or not (???), at 2am, I sit here amazed, and thinking to myself why the heck God showed me this at 2am! Makes you wonder what time zone God is in, though!

Ecclesiastes 3:
1To every thing there is a season, and a time to every purpose under the heaven

Now I'm going to bed...'cause in my time zone it's way to late to be up, none the less on the computer!

"Then Sings My Soul" Saturday

Well, my first TSMS post is the same as the person who started TSMS... "I Will Praise You in This Storm" by Casting Crowns...

Praise You in This Storm

words by Mark Hall/music by Mark Hall and Bernie Herms, performed by Casting Crowns

I was sure by now, God, that You would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say amen
And it's still raining
As the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
And as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

Chorus:
And I'll praise you in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
And raised me up again
My strength is almost gone how can I carry on
If I can't find You
And as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise
The God who gives and takes away

Chorus

I lift my eyes onto the hills
Where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
Where does my help come from?
My help comes from the Lord, the maker of heaven and earth

Chorus


I don't take the song literally as a storm involving rain, lighting, thunder, etc.. My storm is my disease and all that goes along with it. As I'm laying on the table with machines all around me, in so much pain I have to remind myself how to breathe, this is the song I sing. For so long I asked, "what Lord, what did I do to diserve this? I thought I was a good kid! Why?" and I've even had moments where I've denied His existence (though I knew He had to be there, but denied that He was there for me, that He is loving and merciful). But I NEED to believe something, and I'm miserable without God, because somewhere down there I believe He is loving, and merciful, and forgiving, and I WANT to believe it...I NEED to believe it! So...though my heart is torn... I will praise Him in this storm

The parts I really relate to are:

But once again, I say amen
And it's still raining
So often I used to (and still occasionally) think to myself, "Okay God, I've prayed, I've gone to church, I've been born again more times than I can count, so when are You going to kick in?"


For You are who You are
No matter where I am
(or in my case, no matter what faith problems I'm having!)

And every tear I've cried
You hold in your hand
(a real reasurance!)

how can I carry on
If I can't find You?

(So many times I think to myself, "Am I really doing everything wrong like everyone is saying? And if so, what do you expect from me? I'm trying! Are you listening??? Can you hear me now? Can you hear me now?"



I think I may change the rules a bit and do this tomorrow, too...I have a lot of songs in mind!

Tomorrow Warrior Jeremy Turns One!!!

HAPPY BIRTHDAY JEREMY!!!
MySpace.com/Pray4Jeremy

Jeremy... God has a plan for you, I know

But we can't understand it, we love you so
Such a little angel, so small, so sweet
Ten fingers on your hands, ten toes on your feet
But why you had to be born with cancer growing inside,
We just cannot fathom, we want to know why
Why YOU Jeremy, must suffer this fate
You're our little hero, your enemies great.
Oh God above, we need you now
I don't know what to say, I don't know how
To tell you what I mean to say,
Help me Lord, what do I pray?
Whatever your will, we don't understand!
Comfort us Lord, hold us in Your hands-
Oh Jesus, we need You, to get through this
We love him so much, why must this cancer exist?!
We know that Your Will is perfect and just,
but God, we love him! We love him so much!
What about pre-school, and painting, and fun?
Why my Jeremy, why my son?
Jesus did know wrong but He suffered the cross,
you understand my pain, you know loss,
So please Lord, help me this I pray...
Help us, guide us, show us the way
And if he leaves for Heaven above,
Please let my baby see how much he's loved.

By: Me!

Please, please, please visit Jeremy's site and listen to his story HERE He is fighting a brain tumor of unknown type that, according to doctors, should have killed him long ago. Every day, hour, minute, and second is a miracle! Jeremy hasn't given up yet so neither are we! We love you baby J!!!


A prayer for today (by me):

So many things we don't understand, and our faith needs a helping hand. So here today we ask, we pray...comfort us, help us through the day. Amen

Thick Skinned

I have cat hair under the keys of my laptop (one of the cat's favorite seats), so I was fishing it out of the keys today...

Mom: Alex, pick those toothpicks up off the bed! The last thing I want is to have toothpicks under the sheets tonight poking me and have to pull apart the bed again!

Alex: I am!

...

Alex: Um, mom, speaking of toothpicks... *points down to foot, with toothpick sticking out of it*

Mom: At least it wasn't me!!!

------------------------------------------------------------------------------------------------

YES, I picked up the toothpicks, but I did a lot of moving around on the bed, so they came out of their neat little pile. Anyways, moral of the story: never set toothpicks down on your bed! (And having a thick-skinned foot doesn't hurt either!)

Have a great day!!!

A day of REST~

So, as you probably know, Sunday is biblically to be the "day of rest". It's set aside from reading the bible, catching up on sleep, going to church, etc, etc.

Near every Sunday we *attempt* to get up and go to the late service at church. Now, take into consideration, that what my mom has, and what I have, are all auto-immune diseases, affected by changes in just about everything, including the weather. Not trying to make excuses, but generally speaking, we attempt to get up starting 7am, press snooze, and repeat until we miss church. That aside, onto the story...

So, today, we managed to get up, slowly got ready, and I even brushed my teeth (yet another story for another day)! Sam decides he's too sick to go, and not ready to pick a fight, my mom gives in, though we know good and well he could and should go. My father of course, jumped at the excuse not to go, though even if Sam wanted to go, he wouldn't have. He'd rather go to a Messianic synagogue (not that he's Jewish) and put on a show for everyone....oops, I was attempting to post a non-judgmental, godly blog, but darn it, he just makes it so hard sometimes!

ANYWAYS, we get there, and are swarmed by a hungry pack of church-goers! LOL, okay, so everyone came up to greet us with hugs and punches *er, pats* on the back. We greeted everyone, listened to the sermon and sang some songs. My hands were burning the entire time (they were actually very hot to the touch, and red as well), but we got through it and at the end the pastor asked me to come up and say the....umm...what do you call it? Well, I came up to the front and said "Go in peace, serve the Lord" and everyone else said "Thanks be to God". Which to me is kinda odd, because it's like saying, "You are released" (like you've been in prison and are like "be good now!") and saying "woohoo! thank you Lord! we can leave now!!! YEAH!" Anyways, basically I was the celebrity of the day.

I was about to pass out once we left the sanctuary, and didn't stay to chat long. Just went home, my mom with tears in her eyes. I got home, and took the term "day of rest" litterally...I slept until 6pm, and boy did it feel good! Even if you agnostic, athiest, or just a "Sunday morning Christian", you have to admit...it's a pretty neat commandment to be told to go home and take the day off!

My mom was busy working, my brother playing, my dad, well, being my dad, but I, well, I had my first "day of rest" in a long time.

I thought this would make a good blog, but once I have to explain the backgrounds of everything (like how our diseases have to do with getting up in the morning), it kind of changes the whole jift of things =( Oh well, whatever floats my boat I guess! =p I was also going to write more, but I think I'll go do more of that "resting" stuff...I like Sundays!!!

The worst is over...

...I hope =)

I think I'm almost done working on the page design. I may work on the heading more though...but hopefully the worst is over! What do you think? I have to fix the bottom too...forgot about that! oh well =/

Night night, don't let the kiddo's *er, bed bugs* bite!

Alex

PS- credits have been updated!

Please bear with me...

I'm trying to convert to XML on here...this may take a while!

So when this looks completely horrible, you can blame the fact that you can't use widgets in html! Or you could just blame me =) Either way, please ignore how this blog looks for the next, well, however long it takes to get this done (or die trying)

Alex