My photo
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, December 5, 2009

trying to grasp it all....

I apologize the playlist has changed for the night.  for awhile. for i don't know how long.

One of our nurses had part of this song posted as her facebook status the other day.  I have had it in my head since then.  I've loved it since I first heard it months and months ago.  And it is what I need right now.  I need it to play and play and play and play and play. So it is.  I hope you love it- whether it's an old favorite or this is the first time you've heard it.

I don't know where to go from here.  Do I want to be excited that we might be going home this week?  yes...but I am so scared.  I am excited.  but I am so scared.  more scared than bringing my first newborn home three and a half years ago.  I watched Sawyer run across the living room in his birthday suit tonight and I realized I have an incredibly cute son-- I have 2 incredibly cute sons-- but I can not believe how the time has flown with Sawyer.  He is growing.  He is a light in our life.  And I hate time passing so quickly with him, but I can only pray it passes quicker with Ridge.  i want MLT to be behind us.  I am glad that we are about to embark on some new territory- learning to really live, in the "real" world with this disease, disorder, whatever it is.  inconvenience?  not that RIDGE is an inconvenience- heavens, no.  That little boy is another light in our life.  I hate watching him get pale, watching him get or knowing he's getting an IV, imagining sticking him to check his hemoglobin levels.  I fear that I will not change his dressings right or I will not flush his central line enough or I will contaminate it and he will get an infection. I fear getting him around too many public places or too many people in general and him getting sick and possibly having a bleed at the same time or in some sort of correlation.  I want to be rid of the disease.  I want to have it instead of him.  I want it to go away.  go away forever. 
I know we were chosen to walk this road.  It is a narrow road.  A road less traveled.  It is our road.  We have a few families who walk it with us, and we don't know really any of them, other than one lovely soul who has been such a blessing to have to talk to. 
I heard a Jeremy Camp song tonight as I was taking a bath, in my house, with no 3 year old present, for the first time in four months.  "well I will walk by faith Even when I cannot see because this broken road
Prepares Your will for me"


How can He love us so much?  How can I, we, RIDGE, be among the incredible few who walk this road?  I have my days when I want to scream WHY GOD.  WHY WHY WHY am I living through this? Why must I watch my child go through this? Why do I not get to have two normal healthy kids like what seems to be 99% of America?  WHAT WHAT WHAT?  I have my share of transgressions, I do.  But really?  REALLY?  This is my road?  This is my lot?  IS IT?  I have those days.  I have those moments.  And sometimes, mixed in with those very emotions, I remember, that for whatever reason, the Lord has set this path before us.  He set it out long before we were here.  And he will help us take every step we need to take. Because he loves us.  OH how he loves us.  So much.  And he will bring us through this....through the fighting, the striving, the tears, the joys, the sorrows, the bleeds, the sticking, the line clotting, the line breaks, the hard times, the good times, the birthdays, the Christmases, the events we have to miss because we are in the hospital or because we are too afraid to travel too far away for fear of Ridge's condition.  He will take care of us.  He will hold us as I lose my paycheck. He will provide when we see no way to pay the medical bills or the bills that are just regular people bills.  Sometimes, I think we truly will have joy in joyful situations.  It won't just be fake or going through the motions.  Because that's how it feels now.  I found myself wrapping Christmas presents and thanking God that Christmas is not about any of that junk because I had no joy in buying most of it or in wrapping it  (sorry family and friends- you are mucho loved...but "it" just seems so insignificant in light of LIFE)....I pray we will always, from now on, see the big picture.  That it is life, it is what God has set before us, it is compassion, it is helping our fellow man, it is LOVE that matters.  

And His is a love that I can't do without.  Because it is all that is holding me together.  And if you could see me in this very instant, "held together" is not even close to the term you would use.  I feel broken.  I feel out of place. I feel like I want to run away.  I feel like for four months I have literally been living in a dream.  Not a nightmare per se because it hasn't all been horrible.  But none of it has been real.  Not a second of it.  I don't know if I want it to be real.  I want it to seem like a dream for the next three years, four years, six years, however long it takes to get out of the "bad" part of MLT.  I will gladly sacrifice a few years of our life to get to something "normal."  It doesn't work that way.  I want to see the beauty in the "ashes"...I want to praise from the mire.  I want to rise above it all.  I want to escape the fire crawl out of the lion's den whole.  

If His grace is an ocean...we're all sinking. He loves us.

1 comment:

Melanie said...

You all are in my prayers, and clearly you are in His care.