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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

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.


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