Day 7... Craving Normal

It was the first time we took a family of four to church.  We only went to one service and then were headed home....  where it was safe...  or at least we felt safe....

Done, we successfully went to church as a family.  Whew.  Then we heard it, the little 3 year old voice, "Are we going to Jason's Jelly (that's what she called our usually Sunday lunch spot).  Confused, us adults just looked at each other.  Could we go?  Why couldn't we go?  Going to our "usual" place seemed too normal.  My husband and I realized that we wanted to go but no one had told us if we could go.  Why not?

I'll tell you why not, things had changed.  We had realized how uncertain the world we moved in was.  Life had been turned upside down.  We were scared.  

With one look and a nod he turned the corner.  We hadn't planned to go.  We weren't meeting anyone.  We went!

That day our family took a brave step forward and did something "normal" for the first time in a over a month.  The entire lunch was strange.  Usually we were surrounded by friends on Sundays at lunch.  That day it was just us.  Usually this was a great time of fellowship.  It was just us.  Our sweet daughter expressed the unvoiced cry that my husband and I had, we wanted to do something normal.  When we got home our world got a little sweeter.

That day I learned that God had given us this beautiful blue-eyed, blonde-haired girl too.  Her role in our family seemed to change that day.  She was going to help us learn how to be a normal family.  She would hold us accountable to live the life we had not just stay home and hide.  This sweetie has an adventurous spirit that is contagious.  We can not ignore her.  

Together my husband and I realized that we were never going to be "normal" in the world's eyes and our path had no road map but together we could redefine "normal".  We would do everything in our power to help our little family grow up to love the life we were living.  

We still sometimes "crave" a normal life but those days don't come very often.  For the most part we have been learning to live in and thrive in the journey God is leading us on.  We laugh.  We act silly.  We fuss and fight.  We get bored.  So far this not-so-normal life is pretty exciting and certainly has some amazing views.

Day 6... Super Heroes In Disguise

Do you know any Super Heroes?

I grew up in the 70's and 80's.  BAM!  POW!!  Men in tights.  These were the images I formed of super heroes.  Later they got more sophisticated and used some amazing technology (for the times).

In the past eleven years my idea of a super hero has really changed.

I do believe super heroes do come in disguise though.  They are often cloaked in normal, every day clothes.  They rarely use technology to come to the rescue.  They are very humble.  They often don't even know what super powers they have.

Some of my heroes have come baring a home cooked meal (if you know me well this may be the best power someone can actually have).  Some heroes have given crazy car rides for Clare from school to the hospital where I was with Miss Al.  Some heroes sneak into your house and scrub your bathroom when you are at the hospital.  Some heroes throw surprise parties that were already planned while I am at the hospital.  Heroes babysit, A LOT.  Heroes pray.  Heroes call and listen to my rant and raves.  They know me well and let me just get out the words that threaten to take me over.  When my rants are over they ask if I have my favorite Sonic drink and move on.  Heroes wear stethoscopes.  Heroes answer calls in the middle of the night.

God has equipped so many in His church to "rescue" us on His behalf.  He moves in mighty ways through unexpected and sometimes even unknown people.

I have met many super heroes along this journey.  I have found out about super powers that my friends and family are already equipped with that even they didn't know they had.  God has moved my heart because of many super heroes.  I'm so glad He uses amazing, average, ordinary "super heroes" in our lives.

One last thing, I have one pretty impressive super hero.  Her sparkly brown eyes and brown curly hair have gripped my heart with amazing force.  She is brave.  She is resilient.  God must have some pretty big things that He is storing up her super powers for.  She makes me hope that I am a super hero to someone else who need just the right kinds of powers that God has given to me.

Day 5... Choices

We have a lot of choices these days.  Some are trivial like which drink to get at Sonic and some are life altering.  I think a lot of things I have experienced along this journey involve choices.

I remember the last morning I was in the hospital after she was born.  I woke up EARLY!  My girl had been taken off the ventilator the day before and things were looking up.  There were no answers but there was a sense of hope in my spirit.

Hope and fear.  Time for a confession.  I am often afraid to put my heart "out there".  I really don't want to feel the hurt or pain.  I saw this as I expected both of my children.  I was excited about having these babies but I didn't get outwardly excited.  I didn't imagine a lot of the things that I would do with this little person who had invaded my body.  After, something might happen.  I often thought it was just because I didn't feel well while pregnant.  Later I have decided that I tend to guard my heart, especially when I fear great pain.

This particular morning I was actually feeling hopeful.  There were no real new facts just a joy building in my heart.  I was looking at two fuzzy instant photos that had been taken by the NICU staff for me.  There was my daughter.  The picture wasn't beautiful.  It showed lots of tube and wires.  Truthfully it was scary.  But I had a choice to make.  I could guard my heart or realize that no matter what I could choose to love her.  I could choose to love her with my whole heart!  There it was.  This beautiful, helpless, precious girl was mine.  God had entrusted her to me.  She deserved to be loved with all that I had in me no matter what.  I had to choose to love her even if it was for only a few more hours.  I had to choose to love her even if it was for a month or a year.

I chose.  I chose to love this precious girl.  JOY filled my heart at that moment and I knew that I loved her already and that it was the sweetest gift I had to offer.

And then the bang.

Just after that the roller coaster ride we were on lurched forward....  one doctor called as another walked into my room.  She had to be put back on the ventilator.  She just couldn't keep going on with out help.  More question.  There was some good news though, the first blood test came back with no problems (or answers).  GULP!  I chose to smile and move forward.  I didn't really know what was next but I knew I was IN.  I was ready to love this tiny, helpless baby no matter what.

Later that day we left the hospital to go home, without our daughter.  It was hard but I knew that I had made the choice.

Eleven years later that is still a sweet memory.  I chose to love her all the way.  I have been given so much more than I have ever given to this miracle.  I am blessed!

Day 4... Permission to NOT have the answer

I like answers!  We live in an age of information.  We don't have to wait for any answers, really.  We can call people and ask questions.  We can search the internet for facts, trivia, opinions, etc...

Especially as a mom I like to have information.  Information gives me power.

I am learning that I do not HAVE to have an answer.  I don't have to know what is coming next.  This is very hard as a "good girl".  When I know what is next I can get prepared.  Not knowing leaves me exposed, vulnerable.  This has been a lesson that my husband and I had to come to terms with very fast.

There really isn't a LOT known about the metabolic disorder our daughter has.  Within the initial explanation of her diagnosis we learned there was a limit to the knowledge these experts had.  They were kind and compassionate but they knew very little.  We also learned that there was not expected path or outcome.  GULP!  While we know more than we knew then, we are more of an expert on our daughter and not her disorder.  We still don't really know what is next.

Even in the world we live in not knowing is ok.  It may not be typical but it is ok.

Some days this concept hits me hard in my gut.  I struggle.  Occasionally I WANT to hide under the covers and make it all go away.  I can't.  So, I am learning to move on even though I don't know the answer.

As a believer I know that God does know the answers.  I have to choose to trust Him.  I have to choose to trust Him with our future and the next step in our journey.

Even before our daughter was born my husband and I claimed the verse Jeremiah 29:11 "'For I know the plans I have for you,'  declares the Lord."

It seems good and easy, but this is something I struggle with.

Day 3.... Breathe

The stunned silence that I felt so often in those early days taught me to breathe.  Yes, basic, everyday, ordinary, breath.  I often had to remind myself that I needed to take a breath.  Take a slow breath before I asked hard questions.  Breathe when I didn't know what else to do.  Breathe when I thought everything was going to overwhelm me.  Just breathe.  One breath at a time.

I wanted her to breathe too.  Just like most parents of newborns I wanted to make sure she was breathing.  I had to fight the urge to watch.  I had to realize that only God could give her breath.  I wanted a promise, a guarantee, a something, that she would continue to breath.  There were no promises like that.  As I would breathe and wish for her to breathe, God's word often came to mind.

Psalm 150:6  "Let everything that has breath praise the Lord."  (NIV)

Yep, there it was, my next instruction.  I was suppose to praise the Lord, even when I didn't feel like it.  Sometimes I only praised Him with a half heart.  Sometimes I could praise Him with facts, truths.  Sometimes I really couldn't.  After all, I didn't know what was going to happen next.  The truth is, I still don't.  I do feel as though I can glance a little farther down the road than I ever allowed myself to in those days.  I still choose to turn these basic every day breaths into praise because He is still good.

Ok, so how is this a stop on this journey?  I have gotten better at just breathing.  Even when things are difficult one of my first responses is to just breathe.  The amazing thing is when I do breathe, I can often see little gifts God has left along the way.  Maybe it is the beauty of a sunrise over the pond across the street.  Maybe it is the song on the radio.  Maybe it is an opportunity to count the many blessings He has left for me that my stress and concern cause me to forget.

The song "Breathe" by Michael W. Smith is a sweet song that helps me to walk through the idea of taking one breath at a time and turning my breath into praise to the Lord.  One breath at a time God is changing me.  He is working through me.  I may not know exactly where this journey is going to take me but I do know that when I let Him work through me amazing things happen.

The Great Adventure....

The 1992 song "The Great Adventure" by Stephen Curtis Chapman has become "our" song.  My husband and I had just been married when this song was released.  It was an exciting time to start out on OUR Great Adventure together.  Even today this is his ring tone on my phone.  As young "kids" we could not predict the amazing adventure life would take us on.  After all, we were "good kids".  We had both been "good kids" growing up.  We met in college.  We married the summer after I finished college.  We are both pretty good at following the rules of life.  The idea of adventure sounded exciting.

Ten years later after a few ups and downs and curves of life we thought we had a pretty good idea about "real life".  Life wasn't always easy.  Choices weren't always easy.  Loving the Lord with all our heart wasn't always easy.  It was always good.  At this point we were getting a pretty good idea about what was ahead.  We already had one fabulous daughter and we had another child on the way.  I was loving life as a stay at home mom and we had moved into our "dream" home that he had designed for us.  We knew we were blessed beyond measure.

August 2002 found us facing "new adventures" that we could not have predicted.  The birth of our second daughter was traumatic.  After an emergency c-section where things got scary pretty fast we were just beginning to catch our breath when the rest of the puzzle would begin to unfold.  At about 36 hours old our new daughter (while our entire family was visiting with us at the hospital) coded.  We were immobile.  We were stunned.  Yet everyone was watching us to know what to do.  We could barely breath.  The only thing I could think of was that God must have known what was happening and that of course He was still good.  It was all I had to hold on to.  We waited.  God spoke.  Our daughter was still alive.  The next few days would set the stage that our adventure would take.  The truths I held onto during those fuzzy, intense days was that God was good no matter what was going to happen.  I also realized that THIS must be why we were blessed with a wonderful family and friend base near us.  Apparently we were going to need it.

I guess we all like road maps to help us know where our adventures are going to take us.  We want to "plan" our side trips and site seeing excursions.  After all, we are a family of "good kids" making "good" choices.  Isn't everything suppose to be "good"?  I obviously had a lot to learn about what "good" means to God.  He is good.  I'm so very glad.  In those early days I worked very hard to remind myself that God was good.  I KNEW it.  I didn't always feel it.  I'm so glad that His goodness is bigger than my faith.

James 1:17 says "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not changes like shifting shadows."

A stop I continually seem to need to make is to remember that God is good.  If the gift is from Him it is good!

31 Days.....

31 Parts of this Unexpected Journey

For the past 11 years I have been on a rather unexpected journey as a parent.  For the next 31 days I am going to take The Neseter's 31 day writing challenge and write about some of my memories, experiences and lessons from these past 11 years.