Day 9... Curves ahead #31days

Tuesday was a perfect example of the types of detours I have learned to just "go with".  I had a plan for the day.  It was good.  It was productive. It was a tad busy but manageable.

What is usually a two hour doctor's appointment (our long visit) turned into a four hour one.  To complicate the day more we squeezed in another appointment just before it to "make sure things were ok".  All of this led to an overly silly and tired girl and an unprepared mom.

I am usually VERY prepared.  Tuesday I was not.  I had to make some quick plans THEN navigate traffic for an hour and a half.  (I don't particularly like traffic and had scheduled a midday appointment to miss the traffic.)  Dinner was "take out" and taken with us to a school meeting.

My "to do's" didn't get done but that is ok.  Tuesday I did what I needed to do.  Over the past 11 years detour days like this have ended in doctor's appointments.  Some have ended in the hospital.  Some have ended cuddling at home on the couch watching movies.

I like to stick to a plan.  I have gotten better at changing a plan.  When our days got derailed a lot I tended to stay home and I didn't get involved in our community where it was important to attend meetings like today.  Staying home made it easier to navigate these curves.

I'm getting better in the way I mange the unexpected curves.   Some days are like that.  God changes my plans for me.  The bigger challenge I am finding is to pay attention to the scenery on these curves.  I get pretty stressed navigating and steering and I forget to look around and enjoy the view.  This time I saw my daughter as a growing young lady.  She was no longer a baby or a toddler that needed to be entertained.  She was no longer the little girl with a big bag of activities to keep her busy.  I didn't have to give any pep talks about being brave.  I just got to hang out with her.  I got to be with her as she kept cracking jokes that only the room full of student doctors decided to laugh at while the rest of us were chatting.  I got to coach her to respond honestly to the doctors and begin the journey of advocating for herself.

I imagine there are many more curves ahead for us.  I hope I remember to look around a little more and check out the sites along the way.

Day 8... Sissy Secrets

Growing up both my husband and I knew the joy (and trials) of having brothers.  Our hope was to have a family where the brother/sister bond could develop and enhance our family.

Sisters...

I have joked that our oldest needs her little sister.  She needs to learn to enjoy life when things get messy.  She needs to see life from a crazier point of view.  Our little one needs her big sister to show her the ropes.  Claire sets an amazing example for a little sister to follow.

Our girls seem to love growing up in our "girl" home.  Even all the pets we have are girls!  Pink, purple and sparkles are wardrobe essentials.  Creative pursuits, music and giggles are constants here.

While it might seem that we have an ideal home we have more of a typical home.  Our girls are different!  They fuss and fight.  They see life from a different perspective.  They move to their own beats and seem to be thriving as individuals.

What they share is developing.  They have a bond.  I'm not even sure they understand it yet.  

I am convinced they will never be as afraid of LCHAD as the adults have been.  It is all they have known.  It is a normal, every-day thing to them.  It may shape our family but they just accept it and keep going.  

I guess I thought they would be best of friends.  The truth is they are sisters.  They are unique.  They are independent.  They do need each other but they don't even know how to express it.

They have some special secrets that I think only whisper between their hearts at this stage.  The foundations for their "grown up" life are still developing.  I don't think it will be what I think it will be but it is certain to be special.  The thing is I think eventually Miss Al will need Claire more and more.  Claire makes Al's life make sense.  Claire treats her honestly.  Claire tells it like it is!

These two have been through a lot together but they seem to find the joy in each situation.  They make sure that we don't take things too seriously either.

Watching them grow from little girls to young ladies is a joy.  It is an amazing masterpiece to watch develop.  I hope that as they continue to grow and God helps them embark on new adventures that I will be continue to have a front row seat.  I also hope that I can help them learn to listen to those "sissy messages" their hearts are communicating.  They are amazing and oh so complimentary.  I think that together these two are a might force to reckon with.  

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.