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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Saturday, September 12, 2009

why's my dryer so loud?/a day in the life/worries and comforts

This title is three fold b/c I needed to write it down so I remembered everything I want to talk about. I'm home alone for a little while. I came home this morning and have been here about four hours...i took a short nap and have done some laundry...which brings me to:
answer...because I am the proud owner of a three year old boy.  ROCKS ROCKS ROCKS...everywhere.  I was trying to nap in the back of the house and I could not figure out why I could hear the dryer all the way back there....well...upon my waking, I discovered a big heavy rock in the dryer.  Sawyer is addicted to putting things in his pocket, and I'd say 90% of the time, there's a rock in his pocket.  His teacher calls him a pocket packer.  Definitely.  Every day, rocks, toys, kleenex, wood chips from the playground...just STUFF!  the kid is a hoarder.

He is also hilarious. the other day he was singing some song "What is today? What is tomorrow? I have a dairy-o, what is today? Cinco de mayo.  poop streaks in my pants."  yes, that's what he said, people.  seriously.  he also has more than once asked brandon on the elevator at the hospital, "is that a boy or a girl?"...asking OUT LOUD about another traveler on the elevator...brandon assures me BOTH times it was obvious the gender of the person.  So that's just....rude.  I get's fine to be curious. sometimes it's embarassing to his parents....but that is not curiousity- that's just rudeness if it's OBVIOUSLY a man !  or a woman!  The other day, apparently, he was in the waiting room and (I preface this story by meaning ZERO disrespect.  I am sharing it to share our AAAAAAA! moments with this please know, I am relaying the story EXACTLY how i presume it happened, and I apologize if I use a term/terms that are not "politically correct"- I assure you, it is only b/c I don't know the right term if I use a wrong one.)-- ANYWAY, he's in the waiting room and a little person walks by.  I am thinking, as I am told this story, that I know what family this person is from b/c I know of another family there and I know their story, and I was sad to hear that they are possibly STILL having to be at the hospital.  ANYWAY- Sawyer sees this person and says, "hey- are you big or little?"  yes, people.  he asks that out loud.  and I guess he asked it in an honest fashion and I guess maybe it isn't offensive but I just don't know, so it was still embarassing- and I wasn't even out there!  So, I am apologizing for him today.  Although, I suppose it might've been a confusing situation for him, i don't know?


I thought some of you might not know exactly how our days go, so I thought maybe it would be interesting for you to see a "typical" schedule of our "new" life.

6:30ish- ridge is ready to eat.  he's fussy and usually needs a diaper change.  all this is done, and if brandon has stayed at the hospital the night before, he is usually heading out the door to work. I'm usually there.  If I happened to be home the night before, Brandon waits on me to get there (I come as soon as I drop sawyer off @ school).  Ridge usually wakes up at this time b/c this is when his steroids are administered and he usually wakes up after receiving them  (IV)
7 ish- Ridge is usually back to sleep, but 7:30ish is when the resident makes her rounds, so usually he gets a short nap b/c for some reason, her voice always wakes him up- and it isn't that she is loud, bc she isn't.  So this is usually when our day begins.  Brandon is at work by this time, and Sawyer is at school.'s the kid and i, and usually one of the grandmas.
7ish-9ish...hanging out, maybe snoozing a little.  usually ridge is playing in bed or someone else is holding him because I'm trying to get ready.  he usually eats again around 8 or 8:30
9ish- med time....Ridge takes 3 oral meds at this time and soon he'll take 4 if we get the steroids switched to oral from IV.  Ridge hates his prilosec so sometimes giving the meds is a challenge.  he does great if brandon gives them. i like giving them, but he doesn't do as well for me.
9ish-11ish- Ridge will eat again between 9:30 and 10:00.  The doctor will come in sometime before 11 USUALLY. sometimes it is later.  We will hear at this time if there are any changes in what they plan to do for the day/week/long term/etc.
11ish- after the doctor has been in, if Ridge is having a good day as far as poop color/blood counts/etc, we might go out for awhile- either loading ridge up in his wagon, or just carrying him around.  his constant IV meds are on a pump that is portable, so we have a little freedom to get out of our room, IF i think he's doing well enough.
noonish- ridge will stay w/ someone and one person will go eat lunch, then we will trade off.  if i'm alone, which i don't think has happened at lunch yet, but IF i am alone @ lunch, we ALWAYS have great nurses who will watch him.  the other day I had to clean a room downstairs that we'd had for a couple nights, and vanessa, our nurse, just held ridge and took care of him (he did spit up all down her back...but...still, we really appreciate her holding him!) another girl at the desk also helped take care of him while i did this.  the nurses/techs/etc. are all so great and they all love ridge!
*note- throughout the day, ridge has vital signs checked, but idk what time, it's usually every 2 hrs or so.
after lunch- we will spend the day playing/walking around/talking to ridge/possibly resting but i doubt it/changing diapers/having his picc line (in his arm) flushed/maybe giving him a bath/mondays he gets his dressings changed on his lines..../ridge will eat around noon, 2, and 4, most likely, but sometimes a little sooner than those times.
4:00ish- he used to get bloodwork done at this time, but that draw has been dropped for now since he's stayed stable awhile.
5:15ish- Brandon and Sawyer arrive for part of the evening, and sometime between this time and 6:30 we usually go downstairs to eat supper, or someone brings it up, or sometimes we're lucky and someone brings us supper from outside of the hospital! Ridge will eat sometime between 5:30 and 6 possibly
6:30 pm- ridge gets another dose of steroids in his IV (keep in mind if you didn't catch above- he is constantly on IV meds, OCTREOTIDE is the name of the drug he is on consistently).  from 5:30 on, we are trying to spend time with both boys. around 7:00 or 7:30, Brandon will usually leave with Sawyer, take him home, give him his bath, and put him to bed around 8:30.  I'm not sure what Brandon does after 8:30, but I figure he goes to bed pretty early....maybe i'm wrong, I don't know b/c I am never there. Sometimes he is not there- sometimes Sawyer stays with us, or someone else stays with him and Brandon stays with me.  Occaisionally, I take sawyer home on a school night.  
7ish- ridge might eat again.  
7:30ish-9 pm- sometime in here i usually get my shower.  at 9 pm, ridge takes his meds again.  he might eat again around 8:30ish or 9:30 ish depending on if he falls asleep after the 7ish feeding.  
9 pm- ridge is hopefully asleep.  he will be weighed before he eats again in the night.  he will have his vitals checked around every 2 hours, and sometimes he sleeps through this.  othertimes, he wakes up and we have to feed him again b/c that usually stops his fussing.
so from 9pm-4 am, no telling what's going on, but often, it's not a lot of sleeping.  i wake up about every hour, whether ridge is having a good night or not.  i just can't sleep well anymore.
4 am- ridge has his CBC (bloodwork) drawn.  sometimes he sleeps through this, other times he has to eat afterwards bc he wakes up.
6:30 am- steroids are given, and our day starts again.

i know it isn't exciting, but i thought i'd let you know how it sorta goes.

worries:  i'm tired. i'm tired of having to do this, and i know some of you wonder how we keep our faith and our spirits up and know, it isn't always like that and it certainly isn't easy.  we do KNOW that God is in control, but we do falter.  i don't guess i ever wonder "WHY ME?" or have a pity party, but I am kind of in a place where I am ready for God to just say, ENOUGH.  BE STILL.  IT'S OVER.  I know, He probably isn't ready to say that.  But I'm ready to hear it.  I am home today and I see things all around me and I just think things like, "my kids are supposed to be here.  they are supposed to be playing and laughing and our family is supposed to be lazy-ing around on this saturday.  together. all four of us. in this house. on this couch. watching this tv. making brownies in this kitchen. growing up together. loving on each other. here. HERE."  it's so frustrating.  i'm being real with you, so i hope you seeing my faith in it's reality isn't too disheartening. i know a lot of you read the blog and comment on how strong we are- but we are just normal people.  i am normal. i am tired of it. i am ready for it to all end. but i want it to end MY way.  i want GOD'S way to be MY way. I want it to happen now and in the way I anticipate it happening.  I know some of you will tell me to let go, some of you might think I just need to trust God- that's okay.  I want you to know that just because i WANT it to be my way, i still KNOW that it will happen in God's timing and in his way.  I still have laid my baby in his arms and am trusting in his will.  I still am human, though.  I am not "taking" my baby back- I don't know what to do with him if i take him back- he is fully God's.  And so am I- so are we.  But I am having a human moment and a human day and i just want God to FIX IT.  When Ridge is doing badly, and when he's doing well, i still want it to just BE OVER.  With a GOOD ending.  With what I HUMANLY perceive as a GOOD ending.  I know you all relate- especially you parents- to what I am talking about.  God is good, and he is faithful, and I know he is watching over us, and I don't doubt him or his strength or his ability.  But I am not perfect and I do falter and while I praise God for what he is doing and will do, I still want to know why it's not over.  I am READY to see God act, and I am READY for him to receive glory, and i am READY to give him all credit and praise. I am READY to be done.  I sometimes wonder how I can go on.  I know I can. But i still wonder.

So those are some worries.  Here is some comfort.  Forgive the long passage.  I haven't had a ton of time to read the Bible lately, I'll be honest.  praying w/o ceasing, yes.  sitting down to comprehend God's word is not always easy with a baby on your lap or a baby crying.  no excuses, i'm still the one who hasn't made the time.  but today i had some time and i took it and here is what i read.  it's lengthy, so skip it if you don't want to read it, but i'm typing it anyway.

Isaiah 45-- most emphasis, I've added myself, other than LORD...This is written about Cyrus, whom God had chosen to rebuild Jerusalem...God speaks of overcoming the things in the way, and of bringing people to Him through the rebuilding and overcoming of those obstacles.

This is what the LORD says to his anointed, to Cyrus, whose right hand I take hold of to subdue nations before him and to strip kings of their armor, to open doors before him so that gates will not be shut:  I will go before you and will LEVEL THE MOUNTAINS; I will BREAK DOWN GATES OF BRONZE AND CUT THROUGH BARS OF IRON.  I will give you the treasures of darkness, riches stored in secret places, so that you may KNOW that I am the LORD, the God of Israel, who summons you BY NAME.  For the sake of Jacob my servant, of Israel my chosen, I summon you BY NAME and bestow on you a TITLE OF HONOR, though you do not acknowledge me.  I am the LORD, and there is no other; apart from me there is no God.  I WILL strengthen you, though you have not acknowledged me, so that from the rising of the sun to the place of its setting men may know there is NONE besides me.  I am the LORD and there is no other.  I form the light and create the darkness, I bring prosperity and create disaster; I , the LORD, do all these things.  You heavens above, rain down righteousness.  Let the clouds shower it down.  Let the earth open wide, let salvation spring up, let righteousness grow with it; I the LORD have created it.  Woe to him who quarrels with his Maker, to him who is but a potsherd among the potsherds on the ground.  Does the clay say to the potter, "what are you making?" Does your work say, "He has no hands?" Woe to him who says to his father, "What have you begotten?" or to his mother, "what have you brought to birth?" This is what the LORD says- the Holy One of Israel, and its Maker:  Concerning things to come, do you question me about my children, or give me orders about the work of my hands? It is I who made the earth and created mankind upon it.  My own hands stretched out the heavens; I marshaled their starry hosts.  I will raise up Cyrus in my righteousness: I will make all his ways straight.  He will rebuild my city and set my exiles free, but not for a price or reward, says the LORD Almighty.  This is what the Lord says:  The products of Egypt and the merchandise of Cush, and those tall Sabeans- they will come over to you and will be yours; they will trudge behind you, coming over to you in chains.  They will BOW DOWN BEFORE YOU and plead with you, saying, "surely God is with you and THERE IS NO OTHER; THERE IS NO OTHER god." Truly you are a God who hides himself, O God and Savior of Israel.  All the makers of idols will be put to shame and disgraced; they will go off into disgrace together.  but Israel will be saved by the LORD with an everlasting salvation; you will never be put to shame or disgraced, to ages everlasting.  For this is what the LORD says- he who created the heavens, he is God; he who fashioned and made the earth, he founded it; he did not create it to be empty, but formed it to be inhabited- he says: I am the LORD and there is no other.  I have not spoken in secret, from somewhere in a land of darkness; I have not said to Jacob's descendants, "seek me in vain." I the LORD speak the truth; I declare what is right.  Gather together and come; assemble, you fugitives from the nations.  Ignorant are those who carry about idols of wood, who pray to gods that CANNOT SAVE.  Declare what is to be, present it- let them take counsel together.  Who foretold this long ago, who declared it from the distant past?  Was it not I, the LORD? And there is no God apart from me; a righteous God and a Savior; there is none but me.  Turn t me and be saved, all you ends of the earth; for I am God, and there is no other.  By myself I have sworn, my mouth has uttered in all integrity a word that WILL NOT BE REVOKED:  Before me, ever knee will bow; by me every tongue will swear.  They will say of me, "In the LORD alone are righteousness and strength."  All who have raged against him will come to him and be put to shame.  But in the LORD all the descendants of Israel will be found righteous and will exult.

God already knows what he is going to do.  I trust that.  I know it might not be what I want it to be...I hope it is, but I know it might not be.  Either way, it is good.  

Have a blessed day.


Anonymous said...

Alisha...sometimes the most difficult thing to be is "real".....especially when we are trying so hard to show our faith to be strong...the very thing getting us through whatever it is we are facing...What I read in your blog showed "humanness"?...Of course!...We ARE human!...But even more so what I saw was even a GREATER FAITH than I realized you have...You are feeling every emotion and every feeling and having every thought any of us would have in your situation...In fact, we who love Ridge and you have those EXACT SAME feelings and desires right now! the midst of ALL those human expressions of emotions and those honest, very real thoughts on your blog...was "I TRUST YOU, LORD!"...THAT is what I read between almost every line and that blessed my heart, Alisha...It encouraged me in my own personal faith...and it will be an encouragement to ALL who read your blog today...In fact, I wouldn't be a bit surprised if God uses your words and what is squashed between every single line to reach out and touch a heart that needs Jesus Christ and needs true, honest, open, real faith...Faith that trusts, believes and hopes...but also a faith that cries out to the ONE WHO holds all time, all illness, all His most capable and loving hands! You are a "Servant of Jesus Christ"...just as you said on your information page, Alisha!...You are showing that more and more every day!...So God's plan in all of this isn't JUST about our sweet Ridge and what He has planned for him....but it is also about what He is doing in and through you and Brandon...Thank you for your lengthy, informative, real, and faith-filled, praising blog today! I love you so much...and I am praying for you, my sweet niece! A. Deb

Corie and Jason Orr said...

Alisha, your aunt Deb said exactly what I felt in reading your blog today as well. I think about you and your family EVERY day and pray many times throughout the day for Ridge to be healed and for your family to have strength. Do know, though, that you provide the rest of us strength to go on through your words and your faith. I think of the desperation that you must feel as a mother. Justyn is 6 months now and has a little cold and I feel bad for him with just that. I still cannot imagine what you are going through. I do thank you for keeping the blog up to date and giving us all beautiful messages that God has provided to each of us. What God is doing through you, Brandon, Ridge, and Sawyer is really amazing. I'm sorry that you have to endure such pain and exhaustion through the process, but know that there is some good coming of it, even if it is hard to see. God bless you and your family and please let us know if there is anything that we could do to help make your journey easier. Take care!