Monday, December 15, 2008

I keep telling myself I've been too busy to blog, but the truth is that I've run out of words (those who know me well can quit laughing now).  Really, I feel kind of numb.  Paul and I have been saying that for months now, but I mean it this time.  It is the only explanation for hearing that Lilah has "developed pulmonary hypertension, has some fluid around her heart, has to go back on continuous oxygen, and will probably need a feeding tube" and not crying.  She is much better this week.  The oxygen has reversed the pulmonary hypertension, and the fluid is reabsorbing.  Most importantly, she acts like she feels much better the past few days.  It's so sad to me that, while I haven't come to 'expect' these things, I have kind of steadied myself to take them as they come.  I am learning it's one of the keys to survival of this game.  

It's like the game on that Japanese game show where the contestants are trying to make it to the top of the grease-covered mountain and these humongous balls come randomly rolling down.  There is no way to predict what is next or what it will do to you....some balls injure, some knock you flat, some knock you off.  It's impossible to know how the game will end.  But, I'm putting on my helmet, stretching out, and yelling "arragotchee" (the contestants yell something and pump their fist over their head before they begin.  I can't remember the actual word in Japanese...I made that one up.)  All this to say that the rollercoaster of good news/bad news sucks, but that sweet face is always worth it!
God continues to bless us richly in the midst of sadness.  We are so thankful for the sweet, loving way that Lilah is cared for by her doctors and nurses.  These people are amazing-they are kind and compassionate and friendly faces in the storm.  Lilah's doctors are hers because they 'happened' to be on-call when the crisis broke:)...a reminder to us of His sovereignty.  I'm sure it sounds crazy, but He has given us a great joy in this time as well.  The Lord is teaching us what truly matters...and there is a lot of freedom there--freedom to let all the other "stuff" go.  Most importantly, He gives us hope.  A hope to experience His goodness in this life, and the promise of restored, everlasting life.

Here is how you can pray:
1.  We are traveling!  I'm so excited...it feels really 'normal' and I can't wait spend Christmas
    with my family and have a change of scenery.  Pray for health for all of us and a peaceful visit.
2.  That she is comfortable.  It's sad enough that she has all these problems, but it kills us that
she could be in any pain/discomfort (from lung issues, reflux, etc.)
3.  For our insurance to approve a nurse to help on occasion. It stresses me out to
think we are the only ones who can care for her and it's more than a 'babysitter' could handle.

Paul and I are humbled by so many of you who have been praying for Lilah and our family. Thank you, thank you, thank you!

8 comments:

notes from em said...

we are praying, praying, praying.
such a sweet picture of Lilah. SP thinks that she is excited to see her, and that is why she is smiling.
I LOVE your Japanese obstacle course description of how you feel. I can see that, really see how you are feeling challenged. Let us know how we can keep you in top competing condition. ;)
love you

J. K. Jones said...

Still praying in West Tennessee. You all are on our church's newly-formed e-mail prayer chain.

We will miss you at Christmas. We'll try to call.

daisyeyes said...

Thanks for your honesty and for sharing. Lilah is SO, SO beautiful and so lucky to have you and Paul...as is Garrett. Have safe travel and may the Lord bless you with great rejuvenation as you get a change of scenery! Merry Christmas...

Amy said...

Gina-- first of all, the picture at the top of your blog is beautiful!! Secondly, thank you for being so vulnerably honest in your blog... your perseverance through this trial is such a huge testimony and encouragement to so many people who are reading your words. We continue to pray for Lilah and hope you guys have a fantastic and "normal" Christmas!!

Elizabeth Myatt said...

You make me laugh amidst this whole terrible ordeal. I'd be on your team any day. How you and Paul continue to rise to the occasion and "suit up" amazes me...those balls better watch out...the Burches are a tough team! Also, a beautiful new pic of the fam at the top...is that snow outside? and did a new camera take it?

Jessica said...

thinking about you all, praying, praying, praying, and wishing you all a blessed holiday. your children are beautiful. xoxo

The Leonards said...

We too are praying and won't stop! So glad you are going to your parents'...
The picture at the top is WONDERFUL! We love you all!

Elizabeth Browning said...

You are all a constant in my prayers. Your children are just adorable! Adorable! I hope you have a healthy, safe and blessed Christmas!