You Are Special

   I don't know about you but I carry the weight of the opinions of others on my shoulders.  I compare myself to others to the point that I  have either made them look like dirt or have made myself feel worthless. 

  I read a book to the kids that struck something in me as well.  The book is called "You are Special" it is written by Max Lucado.

As the school year starts and words start flying and we work so hard just to be accepted by everyone around us, this is a wonderful book for us all to read. 

  It's about a little wooden puppet named Punchinello. He lives in a little town full of wooden puppets.  All the puppets are different.  They wear different clothes they are different sizes and shapes.  Some puppets are smooth and some are rough.  Some puppets have many talents and others not so much.   The only thing they all have in common is that they were all made by the same wood carver, Eli.  Eli lives on the hill on the edge of town.

All of the puppets carry around a box of dots and stars.  The puppets who were smooth and talented always got stars.  But when the puppets were caught making a mistake and doing something silly or foolish they received a black dot.

Punchinello was full of black dots.  He never did anything right.  He tried really hard to get a star.  He failed every time.  It got to the point where Punchinello just stayed home, so scared he was going to do something even more foolish, like fall in a puddle, and receive another black dot.

One day Punchinello met a girl named Lucia.  Lucia didn't have any stars or dots.  It was the strangest thing he had ever seen.  When others saw how she had no black dots they tried to put a star on her, but it fell off.  Others criticized her for not having any stars and tried to give her black dots, and those fell off of her too.  Punchinello asked how she did it.  She said, "it's easy!  Everyday I go up the hill and spend time with Eli"  Punchinello didn't understand so Lucia encouraged him to go spend some time with Eli and find out.

When Punchinello finally gets the courage to go meet his maker, he was shocked at the love that his maker had for him.  Eli didn't care about his dots or mistakes.  Eli didn't even care that he hadn't earned any starts.  Punchinello asked Eli how to get rid of the dots.  Eli said, "The stickers will only stick if you let them"


Wow.....How many stickers I have allowed to stick to me.  How many times I see my dots and spend most of my time remembering the time they were given to me and what I did or didn't do to earn them and how to get them off  or cover them up before others see them.  How many times I longed for just one star to wear proudly for all to see.  The sad part is that sometimes I tend to give others a black dot just so I can fell like I am wearing a star.  Other times I look at the stars  that others are wearing and give myself a black dot.  How I long to be Lucia,  to not care what others think about me to the point that their opinions don't stick.  To skip up the hill freely to meet my Maker only caring what He thinks of me and knowing that no matter what others think..... believing that He thinks I'm special........and to have that be the only thing that matters to me

"Each one should test his own actions. Then he can take pride in himself, without comparing himself to somebody else, for each one should carry his own load"
                                                                                               Galatians 6:4,5

" Do not conform any longer to the patter of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is- his good, pleasing and perfect will"         
                                                                                           Romans 12: 2

Don't let the opinions of others stick to you.  Don't compare yourself to anyone.  If you continue to focus on being  apart of this world, you will miss the blessings that God has laid out before you.....


http://www.youtube.com/watch?v=opBUb3WcimE  You can view this book here.  It is a wonderful thing to sit and watch with the kids!!!

The End of a long Road, the beginning of a new journey

     


    "But blessed is the one who trusts in the Lord, whose confidence is in him"  ~Jeremiah 17:7~



 

    Wow!!  It has been forever since I have blogged.   I don't have a lot of time these days to blog with school started back and a fourth baby coming around Thanksgiving.  Talk about doctor appointments out the yin yang!!!

    Yesterday was the ending of our 8 year journey.  I am trying to be excited about this.  But it didn't end how I thought it was going to end.  I thought we would have a diagnosis in hand.  A reason their bodies are reacting the way they do to certain things.  A title that would tell us what their future holds.  We didn't get any of that.  We still face a future of the "unknown" and we live each day treating what we can and watching for new symptoms to rear their ugly heads.

  The obvious has been tested for.  Now we are looking at the  other 1,000 plus "rare" mitochondrial disorders.  Unfortunately this is where science is not caught up.  There is no way to quickly or efficiently test for any of them.  We could do a muscle biopsy, and we could fork out literally thousands more to figure this out with other tests.  It may take us another ten years.  But the fact is that the treatment would remain the same.  So the question we had to ask ourselves is, "it is worth it??  Do we put them through that much more drama for an answer that won't change the treatment??"

So now we know three things for sure.   They do have a carnitine deficiency They do have a mitochondrial disorder affecting the way their body transports energy, and this is genetic.  So now that we have three semi stabilized kids our focus turns to Jacob. Then all of the anxieties come back that I felt with the others.  It's a scary road but one we have traveled on many times before.

During the appointment the following "discoveries" were made.  All three children have a low muscle mass.  This is normal among kids with a Carnitine deficiency.  Jaden was our worst. Also a small heart murmur was discovered in Jaden.  They saw something not normal about Anna's eyes but would not discuss that with us, instead discussed it quietly among themselves. (so annoying!!)  On the papers, that they handed to us at the end of the appointment,  it said that "problems were found but were hidden from our view"  (also, super annoying!!!)

  At this point we feel, as parents, we have done all that we can do to help our children.  The Doctors at Cincinnati have commended us on our determination to find an answer for these kids.  They told us that most of the time  Carnitine Deficiency's  are misdiagnosed as a "virus" and ignored until it is too late.  For that I Praise God.  Only He knows that I don't have a fighting bone in my body.  So any "push" I had came directly from Him.

So here we stand looking at a brick wall.  It is surrounding us and I won't lie, it's disappointing.  I mean we fought for 8 years for an answer and this is where it has taken us???  This can't be our "Promised Land" can it???  I envisioned it so much better than this.  So we turn around,  and we see how far God has brought us. He pushed us toward the country of Answers and once we got there,  He carried us through the land of criticism .  He walked with us through the valley of discouragement.  He held our hands on the road of endless tests. He comforted us along the turns of the unknowns.  He hugged us in the town of the slamming doors.   He wiped our tears in the river of doubt.  While walking up the mountain of anxiety He met us at the top with His peace. And when we entered the community of judgment and opinions He reminded us why we had to keep walking to get through it.  My God has been faithful throughout this whole journey and has given us the wisdom to know where to turn and how to get to the next road to help us.  Even though we stand up against a brick wall ,I know that I serve a God who can put a door in that wall at any time for us to walk through.  So for now I will lift my hands and Praise the one who brought us here.  I will continue to praise Him......even if this is where it ends.