Monday, March 17, 2014

Does it End?

Day 24 out of 76 in the hospital this year.  One-third of 2014 has been spent in Denver.  Away from family.  Away from my son's last full year at home.  Away from my husband.  Friends.  My dog.




One cant help but ask when will this all end?

Does it end?

Not really.  This side of heaven, there will be always some issue surfacing.  Some crisis around the corner or problem to wade through.

Jesus himself warned us, "In this world you will have trouble,"  John 16:33.  

      This is a sinful, fallen world.  We have illness.  We have disease.  We have sin and the consequences of that sin.  We have free-will and the consequences of our choices.  We have trouble.

But Jesus  doesn't leave us in that trouble.  He continues in the same verse, "But take heart!  Don't get discouraged!  Chin up!  Rejoice!  I have overcome the world!" 

    Okay, I added the superlatives.  But sometimes we need to read things in different ways to get a clear picture.  

Jesus did not want us to be bogged down in the muck of the world, but he wanted us to know that trouble exists.  Problems exists.

And He is greater!

Romans 12:12 lays out exactly what to do when trouble comes.

     "Rejoice in hope, be patient in tribulation, be constant in prayer."


Jesus Christ himself is our hope - he has overcome this world!

Patience in tribulation - this will not last!

Constant in Prayer - worry about nothing but pray about everything!  


Does it end?  Yes.  Eventually.  And until this - God is MORE THAN ENOUGH!



Monday, March 10, 2014

March Frustrations

Three days - Ashley will have the baclofen pump removed.

    Frustsration.  All the troubles.  The pain.  The two months it worked.

20 Days in Hospital - to date.
   
    Frustration.  I am away from home so much.  Our friends and famlies lives keep moving forward.  David's job goes forward.  Chris marches towards graduation.  And we sit in a hospital.

Blog - leave well enough alone!

    Frustration - now google and blogger have combined in a conspiracy specifically aimed at making my life more complicated!  Grrrr.


Okay - perspective.  It's the little things that drive us crazy when stressed.  When life is out of our control, we just want to have one thing we can count on!  Today, mine was blogger.com.  I just wanted to get on and manage some posts.  It has driven me crazy.  To a headache!  I want to throw something.  Even now, I"m posting through a backdoor app!  

Not in my control.

Truth - nothing really is except maybe our hairstyle.  That's why women will change their hair when stressed - we WILL control something!

Peace somes in CHOOSING to let that control issue fall from our hands. 

To quote Disney:

LET IT GO!


Sunday, February 16, 2014

. . . and now it's February

January saw 5 days in the hospital.  Three ER visits.  

February 5 was surgery for a baclofen pump revision.  Back to Denver!  Dad drove us up and stayed.



That Wednesday, TEAM Ashley pulled together and over 90 people across the US wore purple - her favorite color and also the color for Pediatric Stroke Awareness (CHASA.org).  So cool!

Chris, Ruthie & Drew rockin' the Purple!


Surgery was long - 4.5 hours!  Re-opened both incision sites.  Changed the Catheter.  Flat on her back a total of 6 days!

Twice, we've been ready to go and something has gone wrong.

       Valentine's Flowers from Dad


May I add right here - seeing cerebral spinal fluid leaking from your child's back like a water fountain is a little disconcerting. And regardless of what the NeuroSurgeons may say, see a lump of spinal fluid on your child's back is scary.  They may tell me it's safe but I really don't like the idea of spinal leaking from my child and pooling in a pocket.  

Ashley has been quite the trooper - frustration to the point of tears only once.

It's been hard on our guys.  THe first week we were here, my dad and M2 stayed in Durango.  They were there in case we came home while David and Chris were in Chicago on a college trip.  When we were obviously not headed home, they went back to Phoenix.

David and Chris were at TIU last weekend for the University's Midnight Classic Soccer event.  They had fun.  Chris is already making friends!  It's so good to know he is going where Christ has called him!

Having Dad and Mike there was It good for David - he wasnt alone in the evenings -  and Chris was happy for meals!

Things are not easy.  Ever, it seems.  But chin up!

Tomorrow we are back into the OR for a procedure - a blood patch.  Under light anesthesia they will do a blood patch to hopefully seal her spine.  Another day down and then maybe home by Wednesday!  Whoot!!!!



Marilyn has been here every step.   You can't imagine how humbling it is for someone to tell you that God has called them to be your support.   To know they truly believe that God has called them to sit in a hospital, sleep on a couch, eat the same food day after day, night after night is something special.  God loves through people.




We've developed a daily schedule.  UP.  Bible Studies.  Straighten room.  Breakfast.  Reading.  Walking.  Movies.  Art.  Laughter.  Doctors.  Nurses.  --- all part of our day!



We look forward to the Pet Visits and tonight the DU Soccer Team is downstairs for an event.  We look forward to little things!  Coffee from outside the hospital.  Food, too.  Movie times.  

But we really look forward to going home!!!









Tuesday, January 21, 2014

Again.

2014 is off with a bang!

1/3 - Chris fell skiing so it was off to the er. Tore a ligament between two fingers!  

Me- forever to kick bronchitis 

Last Wednesday - abdominal pain around her pump, back pain and a growing lump on her bed led to a night with Ashley in the Durango ER and an early morning drive to Denver. Then 4.5 days in the hospital. 



Truly not up to posting details yet. 

Emotional exhaustion right now. 

I am sitting in a hot bath in a hotel across the street where we hope to rest before driving home in the morning. 

For a few days. 

To clean house. 

To organize school work. 

To make meals. 

To pack again. 

Then back to Denver for surgery to revise the catheter insertion. And more days on her back. And start again. 

I miss my husband. We agreed years ago that we would always do our best to assure each child had at least one parent. We've spent so many nights apart. 

I miss my son. His senior year. He's doing an internship at our church and I'm so proud of him. I've seen his office via FaceTime.  I miss our book discussions. And I miss making him eggs in the morning.   I am missing so much of his last year at home. 

I miss my dog. And my pillow and my coffee.  I miss choosing from more than two shirts and two pair of pants a day. I miss my giant tub and steam shower.  I miss cooking. 

I miss my cable tv. And computer and radio.  I miss my friends and just having lunch with them and talking ably God snd kids and dogs and husbands. 

I miss singing at church. I miss the piano. I miss music in my life.

I miss my family in Oklahoma. I miss my best friend. I miss my parents. And my aunties.  And my adopted aunt and uncle. I miss my Best Cousin. And Texaa cousins. 

I miss my daughter. That little cherub born 15.5 years ago. Who wanted to dance and be a cheerleader. Her giggles and sighs. Not her tears of pain. 

Some days I feel like I've missed my life while driving to and from and sitting in a doctors office or hospital room.  Or by the phone for test results. 

Or those rare occasions I let myself just sit on the floor and cry. 

Not a pity party. You know me too well. But my good friends know I am good at smiling. 

I don't want your pity. My pity. 

But it's truth.

Life can suck. 

And hurt. 

And you can't change it. 

Beach family rule #1 - Suck it up buttercup. 

Truth - I never miss God. 

He's always with me. 

I just wish he were with me at Home. Or Disney World. Or Hawaii. 

But mostly Home.