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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

Tuesday, July 27, 2010

first anniversary

Okay....I don't want to say Happy Anniversary, bc it isn't super happy...

but for sure, without a doubt, July 28, 2010 is much happier than July 28, 2009.

One year ago tomorrow was the day we were admitted to OU Children's Hospital for the first time.  Prior to that, I knew something was wrong...but that was the day our world began to crumble out from under us.  Piece by piece it fell away....and piece by piece it is being rebuilt.  Slowly, but surely.

I ran into a former co-worker of mine the other day and said something about Ridge outgrowing this, and she didn't know that....so in case you didn't either-- Ridge will outgrow this.  Most likely by the time he is 3, possibly sooner, possibly later.  But it will happen.  We do have that hope.

And even in the midst of some of the darkest times, we still have hope.  Perhaps it is then that hope shines brightest.  My friend and I are reading David Jeremiah's book "When Your World Falls Apart" right now, and while I'm only a little over a chapter in, it is resounding truths in that "God is never closer to the vine than when he is pruning it."  I don't know why this disease was allowed to strike our family.  I don't know why we are walking this path.  But instead of why, the book encourages us to ask "What"-- "what" would God have us to learn through this?  And when this is all said and done and behind us, we can trust that we will be changed vessels.  Vessels on a new path and a new direction, and most assuredly, vessels who know what is important and what is not.  Without adversity, big or small, but from experiencing both, especially without large adversity, it is difficult to truly understand the power, hand, and grace of God.  Do I really truly understand it? Surely not.  But never before times like this did I know so much as I do now that I am not in control.  The Lord holds us in his hands and nothing else matters.  What would he teach us through this?  What lesson is it that we are required to learn through this?  Is there joy in that?  Not a lot...to me...yet.  But when we can shake this dust from our feet, the light on the road ahead will shine that much more brightly...with that much more hope...that we have arisen from these ashes and this dust and this life we never wanted to live to a life we never could have dreamed of living.  I can not imagine living through anything worse than this in my lifetime.  I pray this is my "big thing"...but I have no control over that- regardless of what comes our way, His grace is sufficient, for even us.

This road has been long.  This road has been difficult. And this road is still very much a part of our lives.  So are some of you.  Thank you over and over to the family who hasn't questioned our judgement on things and the family who has been supportive and encouraging in the spoken and written word, as well as in prayer, and in helpfulness.  Thank you to the friends/co-workers who have visited, texted, called, sent notes, donations, meals over the last year.  You helped meet a need that was and is there- thank you for being faithful.  Thank you to my newer friends, those of you with other kiddos with MLT, who have become a huge support group for all of us...it is so wonderful being able to talk about this with people who TRULY understand.  All of you- MLT families or not-- are compassionate and prayerful and giving and sympathetic, but it is only a parent who has walked this same exact road who can truly truly understand the atrocity this disease is.  And I couldn't be as together as I am (which is often not much) without those friends.  They have often been my lifeboat.  Thank you to our wonderful nurses, who take care of Ridge often like he is one of their own.   We have recently acquired some new nurses here at the hospital, so I will probably fail if I try to list you all.  But we love you all!  Thank you to our home health company- the nursing and pharmacy departments are awesome, and check in on Ridge weekly.  Thanks to the techs/support personnel on 8th east and west for taking good care of us-- man, some of those techs are flipping awesome.  Thanks to Child Life for loving on Sawyer and taking him to play and entertaining him (especially Ms. Whitney!).  Thanks to our doctors who let us be involved in Ridge's care- I know it is our right- but thank you for being so supportive and willing to roll with our plans a lot of the time.  Thank you to our church family...for the prayers that I know are continual....and for the cards that the Sunday night class made for us...those were just wonderful..and for the texts of encouragement...and thanks to our pastor's family for the visits and the unending support and love...and to our pastor's wife for recently trekking it over here just to be a walking buddy so I got out of the hospital room a bit.  We are so blessed by so many of you.

I know many people I spoke of don't even read this blog, but it's no matter-- we have many people to thank, and much to be thankful for.  A baby who is still here with us a year later....when a year ago we were just starting this road and weren't sure at all if he'd survive.  As any mother can imagine, it is difficult when a child struggles through a medical condition.  As a mother with an older child who is medically "normal," it is, in my opinion only, bc this is all I know, incredibly difficult to watch my youngest have these medical issues.  I know God has allowed this to happen. I know He will carry us through. I know He has a great plan and purpose.  I know it.  But I also know I want to be home, both of my boys in swim trunks playing in the sprinkler, or snuggled up with me for a nap, or out to eat without worrying too much about germs....and I know we will get there one day.  But not today.  This year has been so difficult in so many ways.  From thinking your baby is completely normal, to finding out he is incredibly extraordinary in a way that society deems sometimes as "having something wrong with him/unwhole/busted/broken/imperfect/whatever term you want to use here"....that is difficult as a mother.  Because to me, Ridge is exactly as God made him, though I hate that he has this disease.  He is made in God's image as is Sawyer and as is every child/person....But I see him through a different filter than a lot of the world does.  Thank you for seeing him through that filter.  If you don't, I implore you to rethink.  Do I like this road?  No, but it is the road we've got in front of us.  You didn't choose your lot any more than I chose mine, and while we need love and prayers and encouragement and support, we don't need the world to be sad for us or pity us or feel sorry for us-- because this is our life.  We must learn to live it, even love it.  I'm not there yet.  But I'm trying.  We can't control our circumstances, but we can control our reactions to them. I'm working on THAT too. :)  So just as some children have birthmarks or no birthmarks, hair or no hair, 10 fingers and toes or some other amt of those, attached or unattached earlobes, so our baby was born this way...as were others...and some were not.  He is normal.  He just has this one special, awful, extraordinary thing about him, a thing that God will use for good.  This thing that God will use to bring glory to Himself.  This thing that God will use as a work in my life and in my family's life.  I want this to be behind us.  Today.  But I don't call all the shots.  I just petition to the One who does.  And never will a moment go by that that prayer is not on my mind-- Jesus, take this thing from us.  But as He allowed it to enter our life, so I know He will remove it in his time.  And what a glorious day that will be-- when Ridge is able to enjoy life to a fuller extent than he has ever known.  But until the Lord says, "Today. Today is the day," we will keep trudging and trusting and knowing that He has a plan.  May we be willing to bend where we need to bend and break where we need breaking and trust with a trust that is more than we have ever known.  And as we walk through this fire, may we all escape unscathed, and be able to say without a doubt, "The LORD is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety."


So...one year down.  Hopefully, this time next year, I will be writing something saying this is all behind us. Or perhaps it will all be so far behind us, July 28th will come and go, and I won't even notice what day it is.

Blessings-

2 comments:

Nan said...

Stopping by to say Hi!.

I'm your newest follower.

Thank you for share nice blog I like your post :-),

I just got back from short trip to Ban Chiang Heritage you can read on my post.

http://beonefineday.blogspot.com/2010/08/whats-made-my-sunday-gone.html

my community is http://theblogfrog.com/1233755

Have a nice day.

Nan

meagan_lee said...

Alisha it is such a blessing to get to take care of you while Ridge is in the hospital. I pray for him everyday that he will pass this diesease sooner rather than later.

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