Friday, May 16, 2014

Wrestling with God (and He continues to offer songs, people, direction, and peace)

Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding
Oh, these song lyrics!  This "Glorious Unfolding" song must have been recently released for radio broadcast, because I've been hearing it on my favorite station, (90.3) for the past two weeks.  God has used it to speak over our life and to my heart in various ways lately.  (I own the album, so I've had an opportunity to listen to it previously and get to know the words and upbeat melody.)
In this journey/race of life, the road has been rather busy and rough lately.  We've had two infusions of Remicade so far (the latest one just last Wednesday), but Anna's vision in her left eye is worse than it has been.  The inflammation is at a 2+.  The level of inflammation has held steady since last Wednesday (at least we can be grateful it's not worse), although her vision today was slightly worse in that eye --- she couldn't read the (sight test) line she was able to read last week.  Clusters of cells have clumped on the cornea, and that's why her vision in that eye is slightly impaired.
I was SO hoping and thinking that these Remicade infusions would "fix" the problems with Anna's eyes.  I often shake my head at the society in which we live being such an "instant" society---and we've come to expect "instant" fixes to everything.  I find myself having those exact expectations, even though I really do know better.  
I've been wrestling with God---working through all of this, longing for some sort of peace in the turmoil and worry over the Anna's vision.  He's provided calm doctors with knowledge and solutions to propose.  (Calm doctors who sound confident in their knowledge and wisdom really help me to maintain a level of calmness.) He's provided friends and family who constantly keep in us their thoughts and prayers and encourage us when we need it most.  He's opened up the lines of communication with just the right people at just the right time at Anna's school, to help her work through the pressures which she puts on herself to be the best student that she can be and to accomplish all the work which needs to be done in the next few weeks as school winds down (taking into consideration a LOT of missed classes for appointments, Remicade infusions, and then another day off last week for the funeral of her grandmother).
So where do we go from here?  The dose of Remicade will be increased for the next infusion (early June).  We had the option of going back on Cyclosporine until the next Remicade infusion, but in conference with the two doctors, we decided to go with adding Methotrexate injections instead.  I am actually happy with that, and the doctors seem to think it's a good decision.  (I know so many parents balk at Methotrexate, but I'm actually more comfortable with it than with other medications, including Cyclosporine---I've come to dislike Cyclosporine for Anna.)  For the past ten days, Anna has been using the Pred Forte drops six times per day.  I am very, very grateful that she has not had problems with those drops.  In her younger years, her pressures would rise fairly quickly after just a few weeks of Pred Forte drops.  But she's been on them since January, and her pressures have remained lower than the right eye (which is perfectly fine).
I sometimes wrestle with how much to share here.  Anna would prefer to err on the side of privacy.  But we also want to provide a realistic picture for other parents and families, and hopefully at least a little bit of hope for those who are traveling this journey behind us or beside us.  Although life currently is not as "normal" as it used to be (for this season, at least), we are not in despair.   God doesn't mind that we wrestle with Him---we work out our faith and grow in our relationship with Him as we continue on this journey and work through the hard parts.  On my hardest days, my meditation often is, "May the God of hope will you with all joy and peace as you trust in Him."  I'm hanging onto hope, and enjoying the little bits of peace I'm feeling as I continue to trust in Him and hold on to every promise He has made to us --- as we continue to see how the rest of this story is still to unfold --- we know that ultimately, it WILL be a glorious unfolding---and we will be amazed!   


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