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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

Wednesday, November 24, 2010

what are you thankful for?

well.  thanksgiving is upon us. i am up super late tonight because i can't sleep.  bdawg's going hunting in four hours and i will take ridge duty at that time...and be tired all day i am certain!  if only i could sleep! i'm just not tired at all.  i should be doing something productive.  like blogging. :)

okay. so thanksgiving is upon us.  well....what do you have to be thankful for?

i am thankful.  i am thankful that we are in a much different place than this time last year, in so many good ways.  i am thankful that God has given us wisdom in certain arenas of our life, and that while things aren't always fun, God has protected our family from major illness this year.  I am thankful for a 4 year old who knows more memory verses than many adults.  I am thankful that he has finally learned how to write and pronounce most of his alphabet (I say finally, not because he is late in doing this, but because we have worked very hard on it!).  I am incredibly amazed that he is starting to read.  I am thankful that he is such a great helper at home.  I am thankful that Ridge is consistently going about two weeks without needing a blood transfusion.  I am not sure if this is bc every two weeks he seems to either be getting teeth, or having a runny nose, etc that causes him to bleed some, or if the disease is just kind of on a two week cycle.  i do know that two weeks between transfusions is a big deal.  that means in a month we are for sure getting single digit transfusions (usually anywhere from 2 to 6 in a month).  i am thankful for an 18 month old with more normal looking poop than bad looking poop.  this time last year i blogged a lot about poop.  i don't have to blog about that as much anymore.  and i am thankful for that.

i am thankful that the Lord has blessed us in so many ways.  he has blessed us with a community and a church family that loves us deeply.  he has blessed us with people that have not forgotten us-- in either word or deed or both.  so often we have people tell us they are praying for us, or people call/text/email/send cards saying they are praying for us.  or people give generously  above and beyond what we would consider needs-- but what they consider to be something they need to give to us.  God is good.  so so good.  he has blessed us with people across the board who might not understand everything about ridge's disease or all the weird rules we impose on our family to protect ridge's health-- but even if they don't understand, they still behave understandingly.  of course there are times we struggle in this department because we know it is a frustrating situation we put friends and family in sometimes.  but we are thankful for the understanding we are shown, because we know this is just a season, and it will pass.  i am thankful for good friends who allow me to lay all my burdens down, lay it all out there, and they just listen, or pray for me, or offer advice if i am needing it, but they do not judge or chastise or say i'm weird.  i am thankful for my friends-- be they near or far, family by blood, by marriage, or by self-proclamation :)

i am thankful that the first time i cook a thanksgiving meal, it will just be the four of us enjoying it.  because it might get really messed up. :)  i'm kidding on this one, because it is insanely sad to think we will be with no family on thanksgiving day.  because of travel being far away, and overexposure of ridge to a lot of people/possible illness, we just do not feel like that is the right decision this year.  hopefully next year things will be even better.  but i am thankful that this year, it appears as of now, that we will be HOME on thanksgiving.  and that beats the hospital, even if we are alone.

i am thankful for a husband who truly is a helper.  i am thankful for this because i know he is a rare gem. :) i am thankful that though, most assuredly, this last year has made building our relationship ridiculously difficult, bdawg and i are still standing. the other day,  i was reading  a blog i follow regularly, and a line written regarding marriage, especially in the event of a very ill child, was something to the effect of this: "we will get through this.  we will make it.  we might make it by the skin of our teeth, but we will make it. "   (that isn't a direct quote, but if you want a direct quote, head over to MckMama's blog).  I'm not trying to make things sound more grim/bleak than they are-- i'm just telling you that you don't know how difficult it is to even feel like you know your spouse (or your children for that matter) when all you are doing is making sure your baby stays alive and is getting the care that really only you know how to provide.  so i am thankful this year that even with the semi-hell we have walked through the past 16 months, i still have someone to hold my hand and wipe my tears away.  because no one else could do that as well as bdawg, bc no one else understands.  and for that, i am thankful.

i am thankful for the light.  the light at the end of our tunnel.  it is small, and some days it flickers instead of shines, but it is there.  and we are slowly slowly walking towards it every single day. and i am most thankful, regarding this light, for the day that we reach it.  that will be a day that we don't even know is happening the day it happens....but a few days, weeks, months later, we will look back...and we will realize all this darkness-- the turmoil with illness/bleeding/transfusions/central lines/fevers/vaccinations, the turmoil with MLT ruling our life and leaving our normalcy in the dust, the turmoil with splitting time evenly between a "special needs" child and another very special child, the turmoil between finding a normal marriage, i could go on and on and on...we will look back, and we will see, that it is all gone.  it is behind us.  and we will be thankful.

because above all else, God has been faithful.  we may not have always been so, but He has not changed.  He has seen us through our darkest days.  He has carried us when we needed it most, and He has most assuredly rejoiced with us as things continue to improve.  And if darkness shall rise up again before we are finished with this, he will carry us again.  He has said it is over, and I will trust that.  I will be thankful for that.  We have a lot of things that we could grumble and complain about, and sometimes we do.  I know there most definitely is someone out there facing a darker night in their life than we have faced in ours.  So for the most part, even if we want to, we try not to complain.  Because the Lord has proven himself faithful to us.  And the petty things that once filled our lives with worry seem so .... petty.  We have been given new perspective.  And while I hope I don't complain about those petty things when all of this MLT/turmoil is behind us...there are some days  I long to be able to only have that stuff to complain about again.  I am thankful, though, for new perspective.  For realizing it isn't such a big deal if I have to go to the grocery store 3 times in one week...because at least I can go to the store instead of eating hospital food.  It isn't such a big deal if I can't afford to buy those new jeans or this or that for whoever in my household...because at least i'm at home even thinking about buying that stuff.  It isn't such a big deal if the dishes mount and the laundry piles and i am stressed to the max trying to get things done, because at least i'm in a place where i can do those things and not stuck in a hospital room.  it isn't such a big deal that my bathroom is dirty or my floors need vacuumed, because at least i'm home enough to get those things dirty.  i could go on.  perspective.  i am thankful for a new one.  no matter your story, whether it be like ours or much much different-- there has to be someone out there who is hurting more, who is more desperate, who is needing the hand of God to just reach down and snag them right up out of their pit.  God is faithful.  He knows what he is doing.  And he will prove himself over and over to you and me if we will allow him to.  So....think.  What do you have to be thankful for?

May the greatness of our Lord be at the forefront of your mind this Thanksgiving week.  Be blessed.

The Carys

Friday, November 12, 2010

what's going on tonight....

it is getting late and i am just sitting around wasting time. so i figure i could do something somewhat worthwhile and offer an update.  our updates are pretty much the same every two weeks, bc ridge's MLT seems to be cycling in two week spurts.

Tomorrow will be two weeks since his last transfusion.  He started having darker stools on Wednesday, yesterday they were better, today they were even worse than Wednesday. I anticipate he will need blood tomorrow (Saturday) but I am not sure.  This stage is difficult because you don't feel at peace with what's going on but you also don't want to rush in to the hospital when it's too early for something to be done.  Frustrating. 

I was speaking with a friend of mine from Alabama about her little girl, who also has MLT, and who has gone 16 weeks without a blood transfusion (she is a couple of months younger than Ridge).  It looked like she would be needing to get blood this week/weekend, but the lab was wrong and so, hopefully, she will make it another week-- another sixteen maybe!-- without needing blood again.Anyway, we were talking about gratefulness...and the lack of it too.  It is so difficult to appreciate the time you have  at home when things flare up like this. It is also so difficult to NOT appreciate the time you have at home in comparison to the time you have MISSED at home.  We are so incredibly grateful to be in our home.  I am greedy and want to be here all the time because of all the time we have missed.  I want to be able to go buy groceries as needed, and to go to church every week and then some, and to not feel like if I go do something without the kids that I am wasting that time bc sometimes it feels that way-- like, I have this day at home. If i go shopping/to dinner/to the movies (which none of those things barely EVER happen, but still!), am I wasting this night? I could be at home!  It is very hard to space out time for yourself/your friends/etc because in my heart I know I need that, even WANT that, but there's that nagging fear in the back of my mind that we won't be home much longer so I need to enjoy time at home.  It is a very conflicting position to be in.  So back to my discussion with my friend-- anyway, when she thought her daughter might need blood she said she wanted to be clear that she was not ungrateful for the sixteen weeks-- she is very grateful.  i said the same about our two weeks-- i am so so grateful.  but again, i am very greedy about our time at home. i want to be home, not in the blasted hospital.  so it is hard for me to say , "THANK YOU, LORD for these two weeks."   Because as the diapers change, what I am saying is, "NO, LORD!  Fix it! Stop it! We don't want to go back yet!"  I hate this feeling.  I hate not being able to just take a breath and say, "it's okay.  we've had our time at home, we will go stay in the hospital for a bit and be back for a couple of weeks."  But I can't say it! That isn't how I feel! I don't want to go back ever ever ever!  EVER!  I probably won't even want to go to ANY hospital!  EVER!  For anything! (Of course, I will.  But I won't WANT to!)  And I beat myself up, but I just don't know if it's even bad that I feel that way.  Of course I am grateful and thankful that the Lord has brought us to where we are.  I am not turning my head or heart or whatever to what He has done for us and in Ridge.  I am very aware that He has saved my son's life and He has brought some normalcy back to our life.  I am very aware of his provisions for us.  I am also very aware that we are home two weeks at most and then we are back in the hospital.  And those two weeks at home are still spent constantly monitoring POOP.  And monitoring blood levels.  And giving medicine.  And flushing the central line. And setting up home health visits/dressing changes/medicine deliveries.  And filling prescriptions.  And germx-ing hands.  And praying we don't get sick. And setting up clinic appointments for checkups/labs/infusions of pentamidine/whatever whatever. 

Sigh.  It's just a lot to do! 

I think this attitude is prevalent in most of us.  We struggle with whatever our circumstance, until that circumstance changes for the better (or the worse I guess).  But when it changes for the better we think we will be forever grateful and never gripe about this or that again, but then we do.  Or we find something new to gripe about.  I'm not really griping, I'm just sick to death of living like this!  So that is probably griping-- but seriously-- who would want to do this DAY AFTER DAY AFTER DAY!?!?!?  I will press on-- bc really, what else ya gonna do?  I get that. I'm okay with it. I just want it to be done. Finished. Over. FOREVER.  FOREVVVVER.  like this much forever:

yep. like that.  So I'm praying that I can say Thank You a lot more... i say it about a billion times a day when the labs and levels and poops are good.  But it is really difficult to have the same attitude when they aren't.  I still say it, and mean it, but I chase it down with "But can You please make it stop?  For longer than two weeks???!?!?"

So in other news, our church family housed a benefit concert for Ridge this week.  Blake Bolerjack and Soul'd Out Quartet were the stars of the show.  All four of us were able to attend.  It was great to all get to be there.  Some family members were able to come, and some friends, and lots of people from our church.  Several people who were unable to attend also made private donations to help Ridge's medical bills.  Our pastor was able to bring the total donations by the house today, and again, just as before with our community's generosity, other communitys' generosity, etc etc etc, I was floored at the provision of God.  The amount of money itself was humbling-- and of course hospitals are very proud of themselves, and find themselves very able to take an amount we find immense and apply it to something very small...which is why families like us need the love and support of family/friends/community/church family...anyway-- again, the amount of money that was given was humbling...but thinking upon who all was in attendance at the concert, and upon the private donors' names...and knowing who many of you are and that you have your own struggles....that is humbling.  That in your love for us, and in your love for the Lord, and in your knowledge of our struggles and a desire to be used of God to help meet the need of getting Ridge, and our family, through this.  Gosh. I can't even type about it because I can't make sense of it in words.  The outpouring of love that we have felt from so many people we know is indescribable, but this time I want to recognize our church specifically because the love that we have been shown from so many of you who don't even know us well-- and so many of you who do know us well-- it is just unbelievable.  God is good.  And please know that not for one second do we doubt his hand at work in our lives-- through a lot of things-- but this time, through you.

Thank you so much!

Things you can pray for this weekend/week:

That Ridge would stop bleeding, quickly.  We will still probably need blood, but that doesn't mean we have to keep bleeding! 

That the cycles would start being longer than two weeks!

That Ridge would start sleeping better, in his bed, through the night, so that we can get more rest.  We are exhausted.  Sawyer is in a "scared" stage, so if Ridge is asleep, often Sawyer wakes up and then the rest doesn't get had anyway.  So pray for both boys' sleeping patterns.

I'm sure there's more but my eyes are heavy.


Tuesday, November 9, 2010

what to do on a thursday night

If you're hanging around Thursday night with some free time on your hands, we'd love to see you here:

The proceeds from this concert will go towards funding Ridge's medical bills.  Our church, along with Blake Bolerjack and Soul'd Out Quartet, graciously arranged all of this.  We love our church so so much!

If we are all home, we are planning to be there in person-- of course, Ridge will be at a distance, and we will be praying we avoid sickness-- please pray that for us, as well.   He is teething still and as he cuts teeth, in the past, he has bled. We are wanting him to make it through this tooth with little to no incident. Join with us in praying for an uneventful tooth cutting! We hope to be at the concert, and if that happens, we hope to see you there!

Tickets are $10 in advance and $12 at the door.  A love offering will also be taken at the concert, and the church has received several donations from people unable to attend-- donations for which we are incredibly grateful!