i have lots to say but my refrigerator is smelling up the room right now....

Brandon's home for lunch. I was gonna try to get a post in while he's here.  He opened the fridge. whatever is in there is stinking it up. gag.  nothing old is in there, so i have no idea what it could be. i don't know if i can handle it.  sick sick sick.

Icko.

Okay, moving right along.  If my enter key will work.

My college girlfriends and myself are reading a book together right now.  Or I think most of us are reading it anyway.  Anyways, my pal Weird Emily sent us all a copy.  And I'm delayed because of our last hospital stay, but even though I'm behind some of them in  my reading, this book is just great.  It's by Jane Rubietta, and it's called "Come Closer."  Lots and lots and lots of good stuff in it.  Last night, while I was actually getting to enjoy a bath, sans a three year old with a raisin up his nose, and sans an almost one year old splashing around from the sidelines, I read the next chapter.

I'd just shared a few things with Bdawg, and this chapter was perfect for those issues, as well as all the junk we're facing/we've faced the last year.



stupid enter key. i guess we need a new keyboard. anyone got one for an imac that they are ready to get rid of?  it doesn't have to be wireless, ours right now isn't. 

maybe the problem is with blogger, not the keyboard. idk.

Anyway, so last night I was reading a chapter entitled "Come for relief."  Let me just share the good stuff, or the stuff that was the "goodest" to me.

"some days are like [this]: plowing uphill hauling a watermelon of fear, sin, regrets, and other leftovers.  I'm not much fun on those days."

"Heavy-laden.  Everyone is, and it reaches far deeper than tiredness or too much to do.  With all the weights we carry about, we should be professional body builders competing in the Ms. Olympia contest.  We feel it in burning shoulders, stiff necks, aching backs, breaking hearts, and thundering sighs.  The weight wedges itself between us and our loved ones as we wonder, "How can I possibly give adequate love and care to these people right now?  I haven't an ounce of emotional energy for them."  So we avert our gaze, pick up our packs, and keep trucking."

"What do you gain by hauling around those weeds?  Colitis.  Migraines.  Fear of intimacy. Loneliness and isolation. Unhappy children.  A disgruntled spouse."

" [God sent his Son] to show us how to live, really live, in the midst of a world that demands perfection and performance."


From the Message Bible, which I'm not a huge fan of, but is interesting to read sometimes: "Are you tired? Worn out? Burned out on religion? Come to me.  Get away with me and you'll recover your life.  I'll show you how to take a real rest.  Walk with me and work with me-- watch how I do it.  Learn the unforced rhythms of grace.  I won't lay anything heavy or ill-fitting on you. Keep company with me and you'll learn to live freely and lightly."  Matthew 11:28-30

So I'm reading that, and I'm wondering, if Jesus won't lay anything ill fitting or heavy on us...on me....where the heck does it come from?  He's willing to take our burdens.  He WANTS us to give them to him.  I found great despair and great hope at the same time in this thought.  I know God didn't GIVE us these hard times, but he ALLOWS us to go through them.  yeah yeah yeah, consider it pure joy....these trials are a testing of your faith....I know.  It's a hard pill to swallow that God won't lay anything heavy or ill-fitting on me.  I know, the Message isn't a translation, it's a paraphrase, so they might have gotten it wrong there, I don't know, I haven't done the original language word study with my Zondervan concordance and I probably won't.  Anyway, God won't lay it on me?  Well it's there.  And it's heavy. And I promise it's ill-fitting.  So while those words tasted bitter in my mouth, truth was sweeter- God DIDN'T lay that on me.  I don't know why under heaven he has allowed us to walk through such fire without totally taking it away, bc that's what I want, I want it to just go away.  But someone else created this ill-fitting circumstance.  This thorn of the flesh.  All I can do is try to cast my burdens onto the Lord, though, bc He is strong enough to carry them, and I promise you I am not.  Jane Rubietta paints a picture of hefting all of your concerns onto a bowling ball and then throwing it down a giant hill with a huge thrust of energy.  How relieving that would be.  That's how we are to cast these concerns on to God.  But as I was reading that, I kept thinking, I can't.  I CAN'T.  I don't know how to give it to him.  So I'm reading a little poem at the end of the chapter.  It states :"Give it up. Give it over. Everything.  Whatever binds you, whatever stops you, whatever weights you haul around with you.  Pass me the ball and chain and let me carry them for you while you breathe deeply." Later she quotes Galatians 5:1 "It was for freedom that Christ set us free; therefore keep standing firm and do not be subject AGAIN to a yoke of slavery" (emphasis mine).  And then she asks us to imagine casting all the junk we're carrying onto the bowling ball and hefting it over the edge....and I note, in my book, "I don't know how to let it go."  So then I read further, where she has written a prayer...I'm kind of mumbling along, trying to mean it, but not really feeling it.  Then I get to this: "My bag overflow, and the bottom is ripping, and I long to set it down.  But I am afraid to let go, and I am afraid I am too weary, too discouraged, to even come to you, [God].  Could you, please, come to me? Amen." 

So that is what I asked.

Are you weary?  So much so that you just don't even know how to relinquish those worries?  Me too.  So I hope this was comforting, uplifting, whatever to you. because it was to me. 

i have the most boring life on planet earth.

Okay, there are a bajillllllllion ways I could start this post.  But I choose to start it this way:
   For every one of you who has ever said I should write a book, I used to think, "No way."  But tonight, the scales have dropped from my eyes, and I have seen the light....the light that has exposed the truth-- I have enough material to write a book.  Any gaps that baby ridge's story has are EASILY filled by sawyer.  and gaps being filled is an excellent way to describe what sawyer does.  I'd also like to say, this post is going to make you laugh.  Possibly spit-milk-out-of-your-nose laugh.  I warned you.  In a very appropriate phrase, I warned you.
  before i go on, if you want to catch your breath and gain a lot of composure, bc you are about to lose it with laughter, check out the photo blog's new pics.
   ooooook.
so, tonight, after my sister in law and her hubs left our house to head back to tx, i finished proofreading a senior paper for our pastor's son.  normally, when i finish a project on the weekend, i move on to another one.  but tonight, i wasn't feeling it.  so i held ridgey, and kept feeling.....i can't believe it.....bored.  for the first time in a LONG time, i felt free enough to feel bored at home.  and while i am thankful for that, i also wanted to do SOMETHING.  now, i have a lot to be doing, but none of that was my priority tonight. i wanted to hang out with the fam.  so...i mentioned, several times, bc i was competing with march madness and two children, "I'm bored."  finally, bdawg passed me the remote and said i could rent a movie or whatever.  i fed the baby instead and decided that gave me at least an hour and a half before he'd eat again, so i was gonna take a long bath all alone....that's like my life long dream.  well, i always take a bath alone.  but just because no one's in the tub with me does not mean that no one busts in the bathroom saying, "MOMMY!" or "he won't stop crying, i gotta leave him in here with you." or whatever. And I get it, that's part of being a parent. I can take it.  But tonight, it looked like there was hope on the horizon.  I lit my little candles, got my book all ready, drew up the bath water.....i was ready to go.  I got all settled in, but before I did so, I told Brandon I'd be out in a while, and if Sawyer wanted to finish that trail mix in his bowl on the bar, he better do it. 
  i had been in the bathtub all of about five seconds fifteen/twenty minutes (I know, call me a lush if you want, but if i'm gonna be in solitude in the tub, i could sit and soak for two hours.  i like to read, i like to nap, i like to just sit and have QUIET!  ask my sister in law who endured a trip back from Babies R Us today-- i took the scenic route on purpose and enjoyed every minute of it-- not only bc I was with her but bc I was WITHOUT kids for awhile. i love the boys, i do. you know that. but....well, no buts. i'm just sayin, i like hanging out with adults, too.) SO anyway, in busts BDawg with the Ridger.  I said, "You have GOT to be kidding me." and HE said, "No. Tell that to the other one who just stuck a raisin up his nose."  anyway, I responded, "I guess take him to the ER if you can't get it out."  So Ridgey splashed his hand in my bathwater.  Ridgey ripped up the magazine beside the bath and put pieces of it in my bathwater.  Ridgey was all smiles and livin it up.  The whole time I'm hearing some sort of barbaric yelling going on in the other room and I am trying my hardest to imagine calm....serenity....a nice relaxing bath time.  yeah yeah yeah.  so i finally get out, it's quiet, so i assume brandon and sawyer have headed to the ER.  So I start getting ready for bed, and bdawg busts in with Ridge's meds for the night. I ask "did you get it?" He says, "no, but I gotta give Ridge these meds" so I say, "i'll give the meds, you get the raisin." To which I remember, he's already taken the tweezers (eek!) and been unsuccessful...what's he gonna do?  I'm the queen of google, but my husband isn't the King of it...but this time, he came through- he said, "well I read you're supposed to pinch one nostril shut, breath in their mouth, and hopefully it will blow out the other nostril.  So i've done that several times, but he keeps breathing it back in.  I could see it, but now it's so far in there I can't see it at all."  So...I sent him away. I gave Ridge the meds, I was all ready for bed....so Ridge and I just chilled in our bedroom, looked at some old pictures, facebooked from the ipod....just hung out.  All the while, I'm hearing things like, "stop breathing it back in!" and other yelling I can't decipher.  Finally, Sawyer AND Brandon come in the bathroom/bedroom.  The raisin is still MIA.  So we're discussing what to do.  I suggest ER, Brandon says, "well, apparently this is pretty popular (not that I doubt that), and raisins top the list." I told Sawyer he's gonna have to go to the hospital to get it out, and he says, with a huge look of terror, "Are they gonna have to cut me? are they gonna cut my nose?" the tears are in the works, and I quickly do damage control with "no no no- no cutting! it will just be scary, but it won't really hurt."  to which brandon has to apologize because apparently in that barbaric yelling, things like, "if you don't be still we're gonna have to go to the dr. and they are gonna have to dig through your ear and cut your nose off to get that raisin out." were said.  So, with good reason, the kid is terrified.  Okay, crisis averted. So I look at sawyer and I say  (you better get ready for this, people), "WHY did you put a raisin in your nose?" and without missing a beat, he replies, "I thought it might tickle." pause pause pause (while brandon and i stifle our laughter bc we don't want sawyer breathing too much and getting that raisin stuck somewhere) "but it did NOT tickle."  
i have one funny kid.
Bdawg and sawyer left for the ER, exam was done on the kid's nose by two docs, no raisin to be found.  conclusion: he probably swallowed it.  watch for signs of infection in the next few days.
my conclusion: sawyer wanted the insurance company to know we had another kid.



laugh it up.

finally have an update....

on the photo blog.  

The reason that's in magenta is because you can click it to go see that update.  But you probably knew that.

better!

finally! friday to tuesday....and i finally feel ALMOST back to normal.  i'm trying to type this blog while dancing to old school new kids on the block and keeping ridge bouncing in his exersaucer....he's still getting mad.  we'll see how far i get.  i look like an idiot, i'm sure.

Ridge has a nasty cold, really snotty.  hopefully this will not cause him to have a bleed.  illness often makes these MLT babies/kiddos bleed.  I've been wearing a mask and sanitizing my hands like crazy for the past six days or so.  he doesn't seem to have caught the gi issue i had.  Ridge...has the wave down.  He can wave wave wave.  He likes to bounce. he likes to stare out the window and yesterday he thought it was hilarious when he was INSIDE looking OUT the window-- because i was OUTSIDE cleaning the windows, looking IN.  and he was laughing it up.  this morning we went on a long walk outside in the fresh beautiful spring air.  a little sun.  a little sprinkles.  a lot good.  he finally crashed after about an hour of walking.  good for me. good for him.  my spring flowers are working on blossoming...if they can jump out from all the leaves on top of them.  i love spring.  ridge turns one a month from yesterday.  he can't talk yet, but he jabbers a lot.  so i guess he CAN talk.  but nothing i understand.  we have been avoiding public-ness for a long time bc of germies/illness, which means even church.  but with easter coming up, i think if we are all well and not at the hospital, we will try to don our new easter duds and go celebrate with our church family.  by nature we aren't an Easter/Christmas only church going family-- we are an every sunday, try to be there for most things, family.  so this disease and low immune system of ridge's has really been odd in that respect.....sorry that paragraph just rambled rambled about so many different things.

sawyer is doing well.  i'm praying every day we don't bring any bugs home (as in, viruses) from school....i've recently learned of a family with a little girl about 3 months younger than Ridge with MLT and they also have 2 other older children.  They have begun homeschooling their kids to limit the amt of germies that come home.  Seeing as to how sawyer is only 3 (almost 4!) and will only be in pre-k next year, we are all signed up and enrolled and hoping for a pre-k slot, but also praying about homeschooling.  for those of you who don't know, I have teaching certificates pre-k through 12th grade.  i need to renew them, i think....reminder.... anyway, i am beginning to wonder if i did all that studying and prepping to teach lower grades for a reason-- because as far as public school goes, high school has my heart.  so i wonder-- i don't doubt-- God knew this day was coming....anyway, i have great faith in our public school system, and i long to be back at work, but not yet knowing if i can do that next year, or the next....or at all  (i am trying to have faith that it WILL happen, i WILL be back in a classroom working with highschoolers in AP calc....YUKON high schoolers...bc there's nowhere else i want to be!)...anyway, this is just something we are praying about.  it will seriously cut the germs down by multitudes in our house, and i would get to spend time with sawyer that never before would i have gotten to spend with him, since i would not have chosen to be a stay at home mom.  who knows- i'm not saying it will happen, i'm just saying i think it's a great thought.  so keep us in your prayers! sawyer's doing well.  he seems to be outgrowing (for now, i know) the rebellious stage and is pretty much obedient most of the time. he loves to hug on me and scratch my back and lots of times over the last several days has told me he's sorry i'm sick.  he loves picking out his own clothes, so i've rearranged his closet where he can reach his school clothes  (picture this: sweatpants with a church shirt...bc this was frequently happening).  he told me the other day, "when you get better, and aren't sick anymore, we need to get the clothes out of my closet that are NOT cool."  WHAT?  how does HE know what's cool?  so i promised we would. i can't WAIT to see what HE says isn't cool...i'm sure the Toy Story shirt will definitely be cool.  whatever kid.  :) love that boy.


so that's not a big update.  we're doing well today. ridge goes for another pentamidine injection tomorrow. pray that goes well. we stop his octreotide for an hour to do those, so it's a tad nerve-wracking to me, but last time it went great.

take care!

spring...BREAK?

I don't know how much of a break any of us got around here this spring break.  I am not yet back into the swing of things being home.  We came home from the hospital on Wed. afternoon, I worked on jewelry and an apron yesterday while daddy and Ridge watched March Madness and Sawyer went to the zoo with Gibby, et al. I wasn't feeling great yesterday and by last night I knew I was really not feeling well...at all.  I climbed into bed with Ridger, trying to avoid contaminating him, and around 2 AM I had to go lay on the couch.  I woke up several times in the night, and while the thermometer assures me I didn't have a fever, I know I did.  So I stayed in bed all day.  I germ-x'd my hands a gajillion times and wore a mask when I fed Ridge.  I am pretty sure I have the same exact thing I had two weeks ago, the same exact thing that landed Ridge in the hospital, at least that's what we THINK landed him in the hospital.  So pray that I get better, but mostly pray that Ridge doesn't catch this.  I hate going to the hospital. I hate living with this.  I try to keep a good attitude, but I am really in a place right now where I don't like having to have this abnormal life.  It's swallowing me whole it seems and I just want everything to go away.  So please pray we have another good stay at home. Pray Ridge will be healed of this stupid disease, and pray that someone somewhere out there in this day and age will please find a cure for this ridiculous disease.  We have so many resources at hand in our society, and in the world at large.  We have great minds all over the world working to find cures for cancer and other diseases that plague many, and I don't doubt that one day, hopefully, they will.  But MLT isn't a known disease. It isn't popular. You probably won't ever hear of another kid ever that you actually KNOW having an MLT diagnosis.  So it probably doesn't rank uber high on the list of diseases we need to find a cure for.  Pray for understanding of the makeup of the disease, the way it works, and how it could be treated.  What Ridge is being treated with now is managing the disease, but he is on some meds that he probably can't be on long term.  Well, he CAN if it's choose that to live, but I mean, things that are less than ideal.  This isn't normal to me yet.  Ridge is almost 1 year old, and this is still not normal to me yet.  Maybe it's because I'm sick today or maybe because I'm tired or maybe both or maybe something else completely, but I am just not able to shake it today.  I want my son to live a normal life. I want him to be free of this disease.  I want the other 30 kids suffering from this to be free of it as well.  I want it to be over.  So please pray for our peace, please pray for the doctors and great minds out there to find a medicinal cure, but if you haven't prayed this in awhile, or if you pray it every day- please, tonight, pray for a miraculous healing in our son's life.  I know God doesn't have to give us that.  But I'm asking you to pray for it anyway.

xoxo-
the carys

what a life

Here's the low down on what's going on in the Cary household.

Ridge has been having a rough go of it.  Black is back, and he threw up once yesterday.  Hemoglobin doesn't go up more than 1 gram after transfusing, and we're used to 3 or more grams.  They aren't giving him a lot of blood, which is also a little annoying.  But there's probably a good reason, but I know he's received more than this much before....After transfusing, he is dropping his hemoglobin rapidly again.  Today, however, even though his transfusion only took him from 7.9 to 8.9, and his first morning lab he'd already dropped to 8.5, he has stayed at about 8.3 all day, which is new.  His pneumatosis intestinalis is back but didn't get worse from yesterday to today...this is still concerning, however.  If he does not stop bleeding, and if the pneumatosis gets worse...or maybe not and, maybe OR...he will have to be NPO (no food by mouth) for 1 to TEN days and on IV antibiotics and increased octreotide.....scary times, friends.  we don't wanna go there.

Sawyer is sick with a 103 degree temp and a sore throat.  My throat has also been sore, but I have a gigantic ulcer I think to blame on the upper inside of my cheek.  I also had some bad tummy bug or ate something wrong yesterday and was sick through the night and part of the morning.  Just awful.

Today at school, a lot of teachers, as well as Sawyer's class (which he couldn't attend bc of his outrageous fever), all wore their TEAM RIDGE shirts. A friend sent me some pics via email- it was good to see.

I have had  a hard time being separated from family this go round...all 4 of us should be together, no matter where we are....and it is hard that we are all sick except brandon and we can't really be together.  I've definitely had some meltdowns in the last couple of days.  Meltdowns for missing Sawyer and missing Brandon, and missing being home and being normal.  Meltdowns for having to live with this in general.  I know we have friends and family who will do anything we ask of them, so this next statement won't sound logical...but this road is so lonely.  We are blessed with people who pray for us and with us.  With people who would, and do, take care of Sawyer, or bring us meals, or do pretty much anything we ask.  With a community and with coworkers who rally behind us.  But it's still lonely, because for all of you good listeners out there, I know that even though you try and even though you want to, you can't understand how this all feels. If that sounds unappreciative, please know that isn't how I mean it- you bend over backwards to love us and to be an ear for us, and to let us cry on your shoulder or yell or vent and you are understanding.  And I couldn't make it without being able to have these meltdowns to some of you.  I just know that before living through this, I didn't know a family's pain and desperation in situations like this-- yes, I hurt for them, prayed for them, and would've done whatever they asked of me.  But I couldn't feel their pain.  And I guess, I am grateful that most of you can't.  It's hard enough to feel this for my child. I guess I wouldn't want to have to feel this despair (at times) for every hurting family- it would be too much to handle.  Anyway, it still gets lonesome.  But for all of you who go the extra mile for us, know you make it much more bearable.

Music has always been able to speak my thoughts better than I myself can speak them.  Tonight, as I was driving back to the hospital, I heard this song, which I'd heard a bajillion times before but never really listened to.  Totally how I feel right now.  Verbatim.  So I will leave you with the lyrics, and I will change my playlist so you can hear it.

Thank you for the love.  Thank you for the prayers.  Thank you for being givers of hope for us in moments of my lackluster faith and my despair.  You are Ridge's cheerleaders, and we couldn't walk this road without people like you.

xoxo


Hold My Heart, Tenth Ave. North

How long must i pray must i pray to you

How long must i wait must i wait for you

How long 'till i see your face

See you shining through

I'm on my knees

Begging you to notice me

I'm on my knees

Father will you turn to me yeah?

One tear in the dropping rain

One voice in a sea of pain

Could the maker of the stars

Hear the sound of my breaking heart?

One life is all i am

Right now i can barely stand

If you're everything you say you are

Would you come close and hold my heart?

I've been so afraid afraid to close my eyes

So much can slip away before i say goodbye

But if there's no other way

I'm done asking why

'cause i'm on my knees

Begging you to turn to me

I'm on my knees

Father will you run to me yeah?

One tear in the dropping rain

One voice in a sea of pain

Could the maker of the stars

Hear the sound of my breaking heart?

One life is all i am

Right now i can barely stand

If you're everything you say you are

Would you come close and hold my heart?

So many questions without answers

Your promises remain

I can't see but i'll take my chances

To hear you call my name

To hear you call my name

One tear in the dropping rain

One voice in a sea of pain

Could the maker of the stars

Hear the sound of my breaking heart?

One life is all i am

Right now i can barely stand

If you're everything you say you are

Would you come close and hold my heart?

Hold my heart

Could you hold my heart?

Hold my heart

i LIKE getting blood!

so.....ridge likes to pose while he's getting his blood.  he was quite interested in it all this time.  especially the lovely tube/vial/whatever of blood.  he was shakin that baby like crazy till i took it away from him.

for those of you who don't know, ridge started bleeding again monday morning, or at least that's when the signs of it showed up. so we are in the hospital, and hoping to get out soon! he's gotten one transfusion, and they will check his blood levels again later today to see if he needs another.  thanks for the prayers!

something to talk about....

I really don't have a lot on my bloggy plate right now.  Ridge is doing the same, other than I think  his platelets must be lower than they normally are bc this morning as i got him dressed SUPER early for us- 6:30 AM bc his diaper leaked pee in the bed- I noticed a large bruise on his shin.  He is also more mobile now, so that could be all that it is, in combination with his "normal" low platelets.  I don't know.  After changing him that first time this morning, I went to change the bedsheets, and when I went and retrieved him from the living room where Sawyer was watching Toy Story, I discovered he (ridge) had pooped his diaper, and IT was all over the clean outfit I'd just put on him. super.  So I changed him AGAIN and we got back into bed and slept another couple hours.  Upon waking, I noticed another bruise on his cheek.  All that to say, I think the platelets are low.  He'll get lab work this coming week, so we will see.

Sawyer and I have been sicky this week. Ridge hasn't seemed to catch it I don't guess.  I've had no real symptoms except horrible headaches and upset stomach.  Sawyer had issues with both ends....so who knows what the heck we have, had, whatever.

So since I have no real updates,  I don't have anything life changing to leave you with. this weekend will be filled with crochet for me, and hopefully a little jewelry making, and I am also hoping to get the boys' birthday invitation made.  They'll be having a joint party, Lord willing we're not in the hospital, in May.  And heaven knows I need to clean my house this weekend but I'm sure that will get put off.

Anyway, that's all I've got for you.  Anyone out there have anything they'd like me to write a post on?  I'm takin suggestions, so comment or shoot me an email.

have a good one.

finally! i really didn't disappear!

I haven't really felt like blogging. I also haven't had a ton of time.  But this morning, I realized it had been like a week since our last meeting, so I thought I should stop letting you down. :)

Not a lot of updating for us.  Ridge is super crawler lately.  He is doing really well with it, and no major issues with him running out of line yet- I am worried about that, but so far I have been able to keep up with him!  He is loving his baby food. 

We are all home today because Sawyer barfed at school.  Sawyer has spent the day resting and watching movies but has acted fine, so I am hoping he doesn't have a bug...but we shall see.  None of the rest of us has thrown up, so that's good.

So all in all, things are good.  Ridge's hbg has been fluctuating in the 10s some.  But yesterday, he was back up to 11.6 and today 12.6, so that is SUPER!  We had an ER trip this weekend because his central line clotted off- that was weird and frantic, but it all worked out and we didn't have to be admitted. 

Ridge is the happiest little thing- his smile is like one of those smiles that you think would make your face break off, but it doesn't. He always smiles that big.  And then you can't help but smile.  He's so sweet.  And mean. And fun.  And growing growing growing, at least in achievements.  We have two really great boys.  We are very blessed.  It's hard to remember that in the every day moments sometimes.  Sometimes I get really frustrated with myself, and this was true before THIS part of our lives even came to be, but I get frustrated because it is so easy to be overwhelmed.  In our case, with Ridge, and with it seeming like there is something EVERY day, and that there is never a day to just stay around in PJs and not worry about having to get out or people coming over to change dressings or deliver meds or us having to go to a dr. appt, etc etc etc.  It just always seems like it's something.  Again, this was so even before Ridge was here, but i didn't write this blog then, so we just have the here and now to work with.  So ANYWAY, it just becomes stupidly overwhelming.  Because you know what all of that hubub is called? LIFE.  it's life. it's my life.  It's the life God has blessed us with, and for whatever reason, we are the ones who are getting to live it.  But because I am selfish and stupidly human, I still get overwhelmed.  Oh yes, there are a lot of joyful moments, but there are a lot of sad moments, and lot of "I can't do this!" moments, and even the occaisional- I'm admitting it- "WHY ME!?!?!" moments.  I know I don't always approach the table set before us with as much grace and fortitude as I should.  I KNOW it but I sometimes just don't care.  But I am so so thankful that even when I just "know" things can't get worse and that we are never going to make it, blah blah blah, really, deep down, I KNOW that it's going to be okay. It's not going to be perfect.  It's not going to be a fairytale.  It's not going to even be normal.  But it is going to be what it's going to be.  God is going to take us through this.  I'm not always going to have the right attitude, but I'm not always going to have the wrong one either.  So, I want to share something with you.  If you don't have time to watch this, or can't bc it's blocked at your place of employment, or whatever, I posted the lyrics below. 


Let the Waters Rise
Mikeschair


Don't know where to begin
It's like my world's caving in
And I tried but i can't control my fear
Where do I go from here

Sometimes it's so hard to pray
You feel so far away
I am willing to go where You want me to
God I trust You

[Chorus]
There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees
So let the waters rise
If you want them to
I will follow You
I will follow You
I will follow You

I will swim in the deep
You'll be next to me
You're in the eye of the storm and the calm of the sea
You're never out of reach

God You know where I've been
You were there with me then
You were faithful before
You'll be faithful again
I'm holding Your hand

[Chorus]

God Your love is enough
You will pull me through
I'm holding on to You

God your love is enough
I will follow You
I will follow You




yeah. so that's pretty good stuff.

just blabbing

We're up and ready. It's 10 AM. The bed isn't made. Ridge had lower hbg than he usually does today. What's up with that? He was 10.7 which is still well above transfusion number for him...but it's still frustrating.  It's also frustrating that it's so hard to think: We've been without a transfusion and mostly been home the last six weeks, so this is no big deal.  Instead, it's easy to think: oh PLEASE don't let this mess start up again. Can we just be done with it?  That's a frustrating crossroads, bc while it is probably a human attitude, it is a somewhat ungrateful one.  That is where I am right now- praying to just be grateful for every moment and to continue to be changed in and by the grace of God, who has been more than good, more than merciful, to us.  But as a parent who has raised one, for the lack of a better word, "normal" child for three and a half years, I know what it SHOULD be like with Ridge right now. And it's frustrating. And I don't think anyone can fully understand that until they've walked it.  Because we ARE home, but it's NOT normal. "But it is what it is, and whatever it takes." (thank you, Scott Hamilton, for that quote in your interview in In Touch magazine....I told you, people, one of my vices is those types of magazines. But that was actually a neat interview...).  Little Ridge is so cute and we are so blessed to have him around and when he's not fussing to be held and spoiled even MORE, all he does is make us smile.  So, I'm a work in progress.  Who isn't?

I've been thinking a lot lately about diversity.  Of course when I think about the word itself, I always think of "diversity in the classroom" and other type trainings I've been through that have nothing to do with the reason I'm thinking of diversity right now! A teacher by trade, always.   Professional development that stuck (good job YPS and ERPS! :)). 

but no, I'm not thinking of a classroom.  I'm thinking of the people who surround me.  I have a diverse group of friends.  Young ones, older ones, even older wiser ones, all great ones.  I have friends who share some of my same neuroticisms, if that's even a word.  I have friends who don't share ANY of those neuroticisims.  I have messy friends, and clean friends, and rich friends, and poor friends, and working friends, and stay at home friends, and I have Protestant friends, Catholic friends, Jewish friends, and friends I don't maybe even know exactly what their religion is.  And my faith shapes who I am, as I am sure, their faith shapes who they are.  And I love that we can be different and still be friends.  Or be the same and still be friends- because sometimes that's even more difficult!  I am not wanting to get in a big debate here, so please don't read more into this post than is actually there.  All I'm saying is, regardless of our differences, or similarities, something allows a friendship to bust through.  And I love my friends. And I've made lots of new ones through this journey we're on right now. And I love them too!  We are so blessed.  And today, I just wanted to give a shout out to anyone who calls me "friend."  Some of you have proven more than your weight in salt for us through this trial.  Meals, visits, money, prayers, cards, calls, giving me business, etc. etc. etc.!!!  From all over this nation (and maybe even further!), we have some GREAT friends!  And no matter if you are one of my "same" friends or one of my way "different" friends-- you rock! Love you all.

thought for myself today....might not like it....

warning/caution/whatever:  this post isn't entirely for the faint of heart or the virgin-eared. if you have some beef with Derek Webb or his music, I'd skip reading today's post.  i'm not saying i agree with everything that comprises derek webb's beliefs....or yours....so don't worry about me going there today.  some of the lyrics shared here might bother some of you. the playlist is set to where you have to hit play today, bc i don't want the song to just start if there are words you don't want to hear/your kids to hear...feel free to skip the blog until i get a new post up...bc this is what i'm sharing today. i apologize if i offend you- i'm just sharing my heart today and in no way do i want my choice of music/lyrics to be offensive, so i'm just warning you.  my intent is not to offend.  but sometimes, that happens anyway...so i won't apologize for being honest with myself and with you....but i do want you to have warning!

thanks to a different derek for reminding me of this song today.  i was reminiscent for a moment, enough so that i purchased the album for my itunes collection. 



so i'm sitting here....reading these lyrics...listening to this music....trying to decide what words to write and knowing that really if i said nothing, some of you would have already taken enough from just that to be moved in some way today- good or bad, i don't know.  but i'm going to share my reflections...and you may or may not take any insight from it, and that's fine too.  this is gonna be a long one, so brace yourself.
 
Wedding Dress
derek webb


If you could love me as a wife
And for my wedding gift, your life
Should that be all I’d ever need?
Or is there more I’m looking for
And should I read between the lines
And look for blessings in disguise
To make me handsome, rich, and wise
Is that really what you want?
[Chorus]
‘Cause I am a whore I do confess
But I put you on just like a wedding dress
And I run down the aisle, I run down the aisle
I’m a prodigal with no way home
But I put you on just like a ring of gold
And I run down the aisle
I run down the aisle to you

So could you love this bastard child?
Though I don’t trust you to provide
With one hand in a pot of gold
And with the other in your side
‘Cause I am so easily satisfied
By the call of lovers so less wild
That I would take a little cash
Over your very flesh and blood
[Chorus x2]
Because money cannot buy
A husband’s jealous eye
When you have knowingly deceived his wife
[Chorus x2]



Last night, I was driving home from running a few errands.  I was thinking about everything we've been going through the last almost year....I couldn't word my thoughts correctly...but...yeah, this kinda sums it up. yeah.  

i mean, has my faith been taken, destroyed, ripped to shreds through all of this? no way. my faith is still there.  i don't doubt God's providing. I don't doubt  God knows what was and is coming.  I don't doubt his ability.  My faith, be it ever so small sometimes, is there.  It's THERE.  But is it always active?Does it always impact the decisions and actions our family makes? the decisions I make- let's leave it at that.  Let's just talk about me and leave everyone else out for now.  Because really, that's what we all need to do sometimes, look at what the heck is up with US.  This post doesn't just deal with our/my MY struggles since Ridge was diagnosed with this nightmare.  Because the truth is, if i didn't struggle with hypocrisy before, this song never would have been written.  because all of us who follow Christ have issues like this.  again, if we didn't, this song never would have been written.

Is it not enough that I've been redeemed by blood? by a life?  is that not enough?  why do I (and anyone else for that matter) expect any more?  I don't have a some RIGHT to expect financial provision, health, good fortune, whatever.  YES, my God will provide all [my] needs according to His glorious riches in Christ Jesus (I'm sure that's paraphrased).  But what if he didn't?  should it matter?  I have been bought with a price. And that's great that I can just claim my faith with convenience. Good job.  "run down the aisle" and then flit away.  To whatever- whatever the world can offer.  Does that mean money is bad? Does that mean ANYTHING we desire is bad? no. well maybe some things are bad.  But I believe we are given passions and deep desires to do certain things and i think those desires, if not blatantly out of line with scripture, are from the Lord.  At this point, someone is thinking "Delight yourself in the Lord, and He will give you the desires of your heart."  right.  i mean it- right.  But that verse is often misunderstood I think.  if we are delighting ourselves in the Lord, we will be given all these things we desire?  yeah, i don't think that's what is meant.  i think it means if we are truly DELIGHTING ourselves in the Lord, he will give us the DESIRES of our heart- the desires themselves will be given by the Lord.  here's what i'm saying.  i have things i want/desire.  so...if i just begin delighting myself in the Lord, he will give me those things?  no.  no no no.  maybe sometimes, but that's not what i think that verse means.  if i begin delighting myself in the Lord, those things I want/desire may totally go by the wayside and i may forget all about them, bc he will actually GIVE me the true desires of my heart- desires i didn't even know were there.  

i can't tell you what else i'm chasing after, because i don't even know what it is. God's been good to me to give me time at home, to give me a passion for creating things, to bless that and to give me a peace that if nothing comes of it, that's fine.  I just enjoy my time at home and my time creating things and that's all it is- something I enjoy and can hopefully glean some success from.  I enjoy writing this blog but I won't ever be famous from it, and that's fine by me. I hope to go back to work in a year or two but I don't know if I will get to, and I have a peace about that.  But I'm not skipping around hand in hand with my savior all day long either.  I have peace about some things, I have a lack of peace about others.  So while I don't know what I'm chasing after, I am fully aware that I'm flitting around.  Because, really, it must be so difficult for us to just swallow ourselves and say, whatever befalls us, YOU are all we need.  Like Job 1:21  "Naked I came from my mother's womb, and naked I will depart. The LORD gave and the LORD has taken away; may the name of the LORD be praised."

So know this.  I have faith in my God.  he will see me through and he wont' change even if  my faith falters.  I am in his hand and I can not be removed.  But I am soooo not perfect.  And things WAY less satisfying than our Lord are settled for  in my life.  Often, my faith is weak at best and is shaky and I live just like everyone else.  "everyone else"....but we are better than that.  We are children of the King. No, scratch that, we are not any better than that.  There is none not righteous, no not one.  We're all dirty sinners.  But many of us have cast that sin to Jesus and let him take it.  So let him take it.  I'm talking to me as much as I'm talking to you. Whatever satisfies you, or seems to satisfy you...whatever you are setting for....it is not okay for me to be deceived by the things of this world.  It's not.

The things that plague us and are important to us in a moment- like a job, a purchase, a relationship that for some random reason has gone awry, health- yours or someone else's, a marriage in limbo, a struggle to conceive, whatever it is- lay it down. some of those things are plaguing my own life right now...the consumption i am giving them is ridiculous. the energy and effort i afford to them makes them, often, my Lord.  we have something so much greater to satisfy us. 

I apologize for the ramblings.  If you are still with me, I have to close with this.  If this post has done nothing for you but take up lots of minutes of your day, I'm sorry-- but it has been therapeutic for me.  So I close with part of Hebrews 12.  Emphasis added, by me.

 ¹Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. ²Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. ³Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart.
 ⁴In your struggle against sin, you have not yet resisted to the point of shedding your blood. ⁵And you have forgotten that word of encouragement that addresses you as sons:
   "My son, do not make light of the Lord's discipline,
      and do not lose heart when he rebukes you,
 ⁶because the Lord disciplines those he loves,
      and he punishes everyone he accepts as a son."^[a]
 7Endure hardship as discipline; God is treating you as sons. For what son is not disciplined by his father? ⁸If you are not disciplined (and everyone undergoes discipline), then you are illegitimate children and not true sons. ⁹Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of our spirits and live! ¹⁰Our fathers disciplined us for a little while as they thought best; but God disciplines us for our good, that we may share in his holiness. ¹¹No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.
 ¹²Therefore, strengthen your feeble arms and weak knees. ¹³"Make level paths for your feet,"^[b] so that the lame may not be disabled, but rather healed.


In no way do I think Ridge's disease is a punishment from God.  But I do think this hardship, and others we are facing *some of which are probably discipline from God*, is a way to test our faith.  It is a way to be taken through the fire and emerge more whole than before. 

It's a beautiful day here today.  A beautiful day...to run down the aisle and run and run and run in sweet fellowship with the King.

Not Me! Monday-- three hilarious surprises.

can i please start off saying that i am NOT having to retype this bc blogger had some failure with my posting it? so disappointed bc it probably won't be as funny the second time around.





 


before i begin, if you missed my last post with the video of Ridge getting his blood checked and his octreotide changed, you can find it here-- i'd been promising it, so i want to make sure you see it if you want to.

Okay, so there are some seriously funny things that did NOT happen around here this last week.  But first, credit to MckMama for starting the tradition of Not Me!'s....if you want to read some more, head on over here. (REVISION: mucho apologies for a non working link! how annoying! i don't know what the deal was, but NOW the link works).

All right.

The first thing I have to share is how last night, after working fast and furious on some of these:

i did NOT decide, at like 11:00 when my baby was NOT awake and NOT just jibberjabbering away, that I wanted to sneak some girl scout tagalongs as a little bedtime snack.  when i was NOT doing this, i did NOT find that someone had already, earlier, beaten me to the snacking. this was not made obvious by the evidence seen here:

in case you aren't seeing what kept me laughing for several minutes last night, that sock monkey doesn't usually reside in our pantry. though he is still in that same spot.  the tagalongs, however, are not.  i'm not saying where SOME of them went.

The same person who did NOT leave that sock monkey in our pantry also did NOT try to be a helper by super sanitizing/power cleaning/hotter-than-bon-jovi heat dry the dishes in the dishwasher (by NOT pushing ALL the buttons)....and upon NOT doing any of that that same three year old someone did NOT invent this by accident:

the baby spork. 

won't be washing THOSE spoons in the dishwasher again.  bdawg was quick to point out the pink spoons escaped unscathed.  while the only blue one....well, it's no good.

and finally, the last thing i did NOT do just this morning...warning: if you are uncomfortable with the topic of breastfeeding, the rest of this post is sooooo not for you.  don't say i didn't warn you!

this morning, as i got ready in my cute new blue flats....and my cute little mustard colored cardigan, and my cute necklace i got last year for my birthday....i did NOT forget anything. i was (seriously) ready on time for our first consult with the hematologist.  and with all my togetherness, i totally would neverrrrrrrrrr forget something.  and if, on the off chance i did, i would realize so when leaving my driveway, NOT upon arrival to the parking garage of the hospital.  and because i have breastfed one baby for a year and this baby for almost a year, i would never ever ever have the item i forgot be.....

breastpads.

maybe some of you don't need them. i do.  maybe you don't know what they are- suffice it to say, leaks happen.

and i would ALWAYS be so prepared that i would have backup breastpads in the car....so that if i were to look in the breastpump bag emergency bag or the diaper bag or the console or the glove box or the pockets on the seats, i would NOT have come up empty handed.  at which point, i would not have decided to just pump a bottle while still in the car to avoid the risk of leakage for the entire hospital to see...and while doing so, i would not have (seriously at this point) worried about anyone in the parking garage or walkway in front of it seeing me, and i definitely would NOT have used a diaper as a breastpad during all this process.  upon feeling rushed and not being very successful with any of the above, i had a eureka moment.  at this point, i asked bdawg to go get two of THESE from the back of the car....and then, i did NOT use the two of THESE as breastpads.

yes. lavender scented. yesssss.  i'm really, for reals, NOT kidding. i'm not.

and i'm also not kidding when i say...

they worked.

hope you had a laugh on me.

painstaking!

ha ha ha....FINALLY i have some video to upload.  but it has taken FOREVER to get it ready!  yesterday, I made a conscious effort to have b-dawg help me video checking ridge's hemoglobin and changing his meds.  last night, i went to plug the camcorder into the computer, only to find out we didn't know where the usb cable was bc we have never done that with our camcorder!  so bdawg found it.  i hooked it all up....but our camcorder, while only a few years old, is old enough that not everyone was wanting a MAC back then, and the software to upload the video is only compatible with windows.  we don't have windows anything on our MAC!  thankfully, our laptop is a sony, as is the camcorder, so we were in luck. i thought.  so i got it all hooked up.  put the cd in to install the viewing program.  apparently, it was already on our computer, so that was a 10 minute waste of time. i got it all hooked up and began importing the video clips.  estimated wait time: about an hour. WHAT?  so i left to go to hobby lobby to buy some more yarn and jewelry findings to make more of these and these and these:

speaking of THAT, i wish i had a picture on the laptop of the newest turquoise endeavor- it's the hugest necklace you've ever seen! or i've ever seen, at least.
and speaking of all of that, maybe you know someone/someplace, maybe you even own someplace, that might want to sell any of this stuff?  if so, email me and i'd love to get an order ready for you!  seesawridgeproductions@yahoo.com or you can become a fan of seesaw ridge productions on facebook and let me know there what you need.

okay, moving on. so i get back from hobby lobby all excited for my videos to be uploaded.  but the camcorder had shut down- battery died.  GREAT.  so i start over, and this time, it's going NOWHERE.  so i just give up, wake up this morning and start on it straight away.  while it's working it's magic, i look through my media files, and there, in all of their glory, sit TWO copies of every video except one.  WHAT?  that's ridiculous. so without further ado (well a little ado bc i'm going to actually pause right now and go enjoy some yummy breakfast burritos bdawg's been cookin' in the kitchen...)

well...that was good breakfast, but getting this video to cooperate is proving to be impossible. i've been working an hour without any luck.

i think...maybe....it's working. or not. OH MY GOSH.  This has taken seriously since about 5 pm yesterday.  It's 11 AM today. I'm about to have a meltdown.  haaaaaaaaaaaaaaaaaaaaallelujah!!!  got it!

i apologize ahead of time for a few things: 1) my zebra pajamas. 2) sawyer's even worse pajamas. 3) that my hand is blocking the view in some of the video.
make sure to pause the playlist in the bottom right of the blog screen so that you can hear the video and not the regular playlist/music.




hope it's not too "educational" (i.e....boring)