Day 11... Rejoice Always, seriously?

"Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus."   1 Thessalonians 5:16-18

This is a beautiful verse.  It looks great on a card.  It is a nice sign to have in my home.  It is a HARD verse to live out.

I think I am getting a little better at rejoicing always.  A little.  The challenge is when things are not going the way I think they should.  It is easy to turn my heart to the Lord when life gets hard.  I can plead with Him well.  I have to work to turn my heart toward Him with thanksgiving and joy when things are hard.  

I have worked at this and have experienced some amazing things when I have worked through the time with the Lord and honestly expressed my feelings asking to see the things I should see through His eyes.

I have watched Him restore the health of my daughter when faithful saints pray.  I have watched Him provide for my family when the task was unthinkable.  I have seen marriages restored.  I have seen people healed.  I have seen faithful men and women loose their fights with disease.  I have seen situations that I can not understand.  I have seen sinners saved.  I have seen precious friends turn from the Lord.  

The challenge is my response each time.  

Through each trial I am working to turn my anxious thoughts and frustrations to the Lord with prayer and thanksgiving.  As I do I am able to lay my requests at His feet and trust Him for the outcome.  Through those moments I experience true joy that only comes from the Father.  Often this is a process that I seem to struggle with over and over.  I need to work out my "feelings" with Him and allow Him to work in my heart and my mind.

God's faithfulness seems to always surprise me too.  After all He has done for me you would think I would not be so surprised by the unbelievable ways he works.  He is amazing and His gifts are too.  I'm just thankful He is patient with me through this journey.

Day 10... View From My Kitchen Sink #31days

An unexpected view during this crazy journey has been my kitchen sink.

Don't get me wrong, I have a great kitchen and a great kitchen sink.  I have to admit that I was unprepared for the lessons God would teach me at the kitchen sink.

Sometime I have struggled with daily disciplines.  As a teenager and young woman I struggled with things like making my bed every day, proactively doing the laundry (you know not waiting until you NEEDED what was in the pile), doing the dishes without letting them pile up and even daily quite times with the Lord.  Of course as I "grew up" these things began to improve as I matured.  As a young mom I thought I had a pretty good routine in place.  I liked an orderly home.  I loved taking care of my little daughter.  Her laundry was generally taken care of and along the way I took care of ours.  

With the addition of Miss Alex things got interesting.  We were very focused on each of her feedings.  Truthfully we were stressing ourselves out encouraging her to eat and recording every ml that she drank.  I actually have a complete record of every ml that she drank during her first year of life.  

The part I was unprepared for was my battle at the kitchen sink!  At first, while I was sleep deprived it was funny.  Every time I talked to my husband on the phone I was "making bottles, about to make bottles or had just made bottles".  It seemed simple and harmless enough.  

I remember a time when she was about six months old when I was just struggling with this.  I had found a routine and had a system down.  But the truth was I didn't want to wash bottles and make formula!  I struggled with the reality that this was important.  This was vital.  I could NOT EVER miss this.  After all, her life depended on it.  I know the struggles were more about other issues too but I was taking it out at the kitchen sink.  My heart would get mad.  I would fuss at God (usually without anyone else knowing).  I would cry.  It was my battle ground.  I had to choose to do this every day, no matter what.  I was also choosing not to like it.  Apparently my stubborn side was coming out and I often felt like that little girl digging heals in, crossing her arms and pouting.  I knew this was so much easier than what we could be doing but I was realizing the endless nature of this fight.  

God patiently walked along side me each time.  I vented to Him about how hard this was.  I went back and forth with my willingness.  Eventually I settled into the predictability of the routine.

I wish I could tell you that every time I struggled I would turn my heart to the Lord.  Sometimes I did.  Sometimes I did not.   I wish I could tell you that I used my time to memorize a scripture or even pray for friends.  Sometimes I did and sometimes I did not.  My husband and I used this as a bargaining tool.  "If you do this for me I'll do that."  (I know mature, right?)

Less than two months ago we changed everything about her routine.  No more bottles and formula!!  Did I celebrate?  nope.  Did I do a happy dance?  nope.  So what changed?  Now I wash the dishes several times a day (whenever I'm in the kitchen).  I clear off the counter without a fuss or a fight.  No major power struggles needed.  I am different.  God has slowly transformed me.  The daily discipline of washing her bottles and making formula has changed me.  I accept the tasks that need to be done a little easier.  I am not fighting God over the kitchen sink any more.

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!