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. 

Day 2
Sissy Sleep Over

Just a few nights ago I lived out a scenario I have pictured in my mind for many of these past 10 years....  The dreaded "sleep over".  Now I am not talking about me aggreeing to host many crazy girls for a sleep over.  I am talking about Miss Al being INVITED to a sleepover.  This was at the home a friend that she has not spent much time around.  It appeared to be a fun, girly sleepover with friends (minimal sleep expected).  I agreed that she could go but would not be allowed to stay overnight.  While met with sadness she understood and was just happy she could go.

REALITY!
The truth is, it STINKS to be different and have LCHAD.  Most of the time Alex is very normal.  She acts like her friends.  Alex still needs to be fed a "midnight snack" EVERY NIGHT.  This is not something you lightly pass along to someone else.  It isn't hard, but it does require a commitment.  Alex was NOT going to get to stay the night.

We "negotiated" a pick up time.  It was quite late in the 10 year old world.  Her big sister questioned me that evening about why I let her stay so late.  I explained that it was hard enough that should wouldn't be allowed to stay all night just because she is Alex (and because she has LCHAD).  The normally "stay out of it" sister had a look of compassion that I rarely see on her face.  I think she realized that at 10, she had been allowed to sleep over at people's homes.  The "unfair" took on a new face...  her sister.

In true Alex "style" she even called and asked to be able to stay.  I remained firm and compassionate.  I picked her up.  She was frustrated and mad.  I allowed her to "vent" in the car on the way home.  Alex has been frustrated enough to quite talking to me (ahhh, the silent treatment).  When she arrived at home her BIG sister came to the rescue.  Claire had set up a "Sissy Sleepover" in Alex's room. 

While life will never truly be "fair" and growing up with LCHAD (and parenting it too) will offer many more challenges....  this everyday kind of moment where the big sister steps in of her own doing and "saves the day" by reaching out in a way only she could will forever be in my heart as one I hope I never forget.  They truly do love one another.  The treat each other quite normally.  However, the truth is our family will never quite be "normal" because of the sweet, spunky girl with LCHAD. 

We have grown so much over the past 10 years.  I always KNEW Claire need Alex in her life to make her perfect little world a little more messy, colorful, loud and fun.  I sometime miss just how much Alex needs Claire in her life.  God truly did know what He was doing when He made them sisters.

For ten years I have been the mother of two girls.  When my youngest entered the world my world completely changed....  and yet, it didn't.  My youngest daughter has an inherited metabolic disorder.  I have learned so much over the last ten years.  I have found joy in unexpected ways.  I am stronger.  I am weaker.  I am blessed. 

For the next 31 days I am going to write about days, thoughts, ideas and fun that I have experienced as their mother.  Some are just FUN.  Some are memorable.  Some may even be sad.

Welcome to the opening of this part of my heart.

Day 1
Sparkly Sunglasses

I don't remember exactly when it was I got the sunglasses.  I do know where.  I think this was during the winter or early spring when Alex was about a year and a half old and we were in and out of the hospital a LOT!  There they were, pink sparkly sunglasses.  I always wear sunglasses.  I never pay more than $10 for them because they break or get lost.  I think I must have had a gift card.  Somehow I justified my purchase (I think they were about $30, nothing too extravagant).  They made me SMILE!  They made me feel "happy".  I HAD to have them.

During those days I remember grasping for anything that seemed "normal" or "fun" just to help me keep moving as though everything would be alright.  Also I was drawn to anything pink (always thinking of my girls).  They were so sparkly and I wore them EVERYWHERE.  When indoors they were on my head like a headband.  I got so many compliments on those sunglasses.  The truth is, they made me smile.  The pink sparkles helped me hold on to the fun "life" of having two little girls.  Often I found myself fighting that sinking feeling that I would not be strong enough to handle all that was before me.  I didn't have to prove anything to anyone.  I had to prove a LOT to my self.  The everydayness of those glasses kept giving me something that would make me smile. 

I remember when the first jewel started to come loose and I realized that I would have to replace those glasses.  I was sad.  They seemed to be able to help me smile a little more.  Eventually my practical mind took hold and I replaced them.  Many sunglasses have followed, but I do know that in the recess of a drawer I still have my pink sparkly sunglasses. 

I saw an old photo of me wearing those just the other day.  The sunglases made me smile.  It made me realize how sometimes it is little insignificant things often turn out to be symbols of important times in our lives.  These sunglasses are a reminder to smile THROUGH the difficult times.  They remind me that God's little sparkly gifts are more amazing the older they get.  God has blessed me with two beautiful and amazing girls.  They make me smile.  I think they are the sparkly pink things that shine right through me every day.