Thankful for today (and the yesterdays we faced)

Ok, so maybe I didn't get 31 days of writing in during October.  No real surprise there. This isn't shocking since things have been particularly busy this fall for our family.  Oh, well...  move on to now!

Today marks the 2nd day of Alex's current hospital stay (I think we will go home today, yippie for short hospitalizations).  This marks the 3rd hospitalization during this calendar year.  It also is the first one this year that is truly because she has LCHAD. 

As we get closer to Thanksgiving many people are posting things about what they are thankful for.  Last night this was what I posted on Facebook:

As I was singing a song about being thankful for "all that He's done and all that He's going to do" I realized that I am truly THANKFUL for ivs. I have kind of a love/hate thing with them as I have watched them give Alex so much pain through all of these years, but in truth I am THANKFUL for ivs. They keep my precious girl safe and give her body what it needs! They are truly the blessings that come from raindrops in my life. What a beautiful tool God has provided to help us take care of Alex.

Today I find myself thinking about some of the toddler and preschool years with Alex in the hospital.  I remember wondering if she would grow up and be a "big" kid in the hospital and I wondered what it would be like not to have a crying irratable preschooler fussing and demanding things from a sleep deprived mommy.  Some of those days were sooooo loooooong.  They seemed endless.  They seemed to go by in long foggy moments that threatened to overwhelm me.

I used to wonder if she would ever let me brush her hair while we were here (without throwing a fit).  I wondered if we would always paint her toenails while we were here (I often noticed they needed attention while seeing them stick out from the covers).  I wondered if we would ever turn off Disney Channel (no offense, it just gets tiring after a while).  I wondered if we would always be able to find something fun to make out of each stay like I tried to when she was little.

Today I realize that we didn't just "JUMP" to being a big kid but we have gotten here slowly.  I have walked along side my girl each step of this journey.  (WOW, that is a privledge isn't it?!?!)  Some hospitalizations it seemed like we were so tired that we just couldn't catch our breath.  Sometimes we would have so many family and friends visit that we were "enteretained" the entire time.  Somehow along the way we learned a bit about how to relax and go with this journey. 

Each time we educated nurses about the reasons this seemingly normal girl needed to be in the hospital.  Some days she charmed her caregivers and provides bright spots in their busy work days.  Some days she needed the boost of friends and family to get past her frustration of missing "important" life events in the life of a child (birthday parties, field trips, special days at school, family holidays).  Some days I needed that boost.

ivPolePals have come out of these "in-between" years.  God still seems to be doing something with that but I am not exactly certain what it is.

Today I realize that in some ways we have "grown up" in the hospital.  Alex can anticipate just about every experience she will face.  She recognizes the need to come and asked for me to call the doctor so she could come to the hospital (seriously a first!).  Last night, she was more interested in sleeping than watching TV.  Today we have had the TV off for a while, we have played a few games, listened to great music and some praise music.  Last night we put up glow in the dark stars just to watch them glow for a while. 

I KNOW we have arrived and sailed through this experience on the wings of the prayers of so many saints who lift us up.  I know that we are walking through this calmly, ordery, and even in a bit of a routine.  Sometimes is seems surreal.  This IS a major part of my life.  I am raising a child to be a woman all while she has a cronic physical condition that changes our families routine and plans.  We have choices to make along the way.  We choose to accept these interruptions or fight them.  We choose to get mad and hold grudges or we choose to recognize that God is holding us in His hand and carrying us through the path He is creating for us.  I don't know that I conciously choose to accept God's path but I do know that I am.  Slowly.  Sometimes with a heavy heart.  Sometimes with uncertainty.  But as she was little learning to grow up in this I was learning to accept God's plan.  I am not sure it is easier, but it does happen in a smoother way than it used to.  We are better able to work with what I actually pack for the hospital and don't end up bringing so many things we "need".  We are more content.  Yes, that may describe it.  Maybe I am learning to be content in all circumstances.