Tuesday, September 11, 2012

Eli updates & thoughts & emotions

I'm sorry I didn't get a post up yesterday evening.  I'm exhausted.  Like always...physically, emotionally and mentally.

There are so many days lately where I'm simply unsure how we are going to get thru.  Then we get thru the hectic roughness of the morning.  I make it thru all of the medical pieces that remind me how sick my little guy is.  We make it to that sweet spot time, his Pinocchio time.  I live for this time, our whole family does.  Everything about the other 18 hrs is simply making it to our next chunk of Pinocchio time.

For those new to Eli's journey I will stop quickly to explain.  Pinocchio time is Eli's "I've got no strings" time.  This is the little precious time of our life each day where he is unhooked from everything.  All of his medical paraphernalia is in his room or tucked under his shirt.  He's able to run and play independently without someone right behind him holding his tubes and machines.  He climbs on the couch, chases the puppy, tumbles around on the floor with the kids, gets into trouble dumping my purse and his diaper bag all over the floor, and digs thru the kitchen cabinets and drawers.  This is his time to be a toddler.  Don't get me wrong we still have to do medical things.  He gets meds and flushes and blood sugars every hr during this time.  But we do it as quickly as possible chasing him thru the house to get it done.  It's not just HIS Pinocchio time, it's OUR Pinocchio time. 

Why am i down you may ask?  Last weeks lab work is showing more signs of trouble.  Out of a page of labs only 3 or 4 things were within normal range.  His protein is at an all time low.  His red blood cells are dilated.  His hemoglobin is making big drops.  It's just one lab result after another.  His doctor and I spoke at length.  He personally called me to talk.  He says that we are going to have to make quality of life decisions and we can no longer continue to chase numbers.  He says that we are going to have to pick.  The hydration is causing Eli's body to flush out things it should be holding on to.  We are going to have to decide between good numbers on lab work or hydration.  Clearly neither is a good choice.  No parent wants to pick from 2 important needed things.  We are having to make a choice that helps part of Eli but hurts another part of him.  It's not fair.  It's not fair that we keep hearing that we need to make quality of life choices for Eli.  I don't want to do this.  I can't do this.  But I have been given no choice.  His doctor has adjusted Eli's IV fluids and that has helped with some of his numbers, but not enough, and presumably not for long enough. 

I watch Eli and sometimes I laugh and smile.  Sometimes my heart swells to the point of feeling like it is going to burst.  Sometimes it hurts.  It hurts so damn bad.  I used to feel numb.  When I was numb I never understood it and wished to feel.  But feeling isn't always good either.  The roller coaster of emotions that come with this.  It's the hardest most painful thing in the world. 

People are always asking us how we do it.  They are always saying they could never do it.  But they would.  What else would you do?!  Walk away, leaving your child laying on a hospital bed alone??  You do it.  You give your entire self over to the journey.  You sacrifice every molecule of yourself, willing and fully.  I'm not saying this as a martyr type of mentality.  I'm saying this as a mother.  My sole job is fighting for my little man.  Carrying him when he can't.  Being his voice, his protector, his everything.

Every morning I look at Eli and marvel at how amazingly strong he is.  He is a warrior, thru and thru.  I have no idea how he endures what he does each day.  I am continually amazed at his strength and determination and his accomplishments.  He is my hero.

It's not just me that has these feelings.  Everyone in our household will say these same things if asked.  My 9yr old, Jace, has been working on keeping his own journal.  He allows us to read it and the other night he wrote some incredibly deep painful insightful perfect words, that I feel like I need to share.
"I have a baby brother that has a disease called Mitochondrial.  It is like a battery that does not charge.  So they say that he may not live very long but we all love him a lot.  It is sad that he might die when he is a teenager.  We are currently raising money for the walk-a-thon.  right now we raised over $200 which is a lot especially to me since I am bankrupt.  I love my baby brother and I play with him because he is so cute."
To Jace this sums it all up.  His baby brother is his world.  He is the great emotional protector.  He is always making sure that everyone he meets knows exactly how amazing his little brother is. 

They are all like this.  They are amazing. The things they know.  The things that they understand and pick up on.  It breaks my heart to know what they are having to endure.  How strong they are.  Not one single day have they complained about Eli and how he has changed our life.  They are so proud of him, and so in love with him.

Our household is strong.  We are close and tight.  We can function like a well oiled machine at the drop of a hat when needed.  My kids can be as hyper and out of control as can be, and the moment there is an Eli issue everyone can fall in and do what needs to be done with virtually no communication in seconds.  It's amazing. 
Our household consists of the 7 of us who are immediately in our family, 2 nurses, and 1 respite worker.  We are all tight.  I can't imagine life without our in home community.  We are so blessed to have this group.  We laugh together, cry together, and get into water gun fights with 60ml syringes together.  We are family, in this thru the good and bad.

I will spend these next two weeks sorting thru a truckload of emotions.  This week being the awareness week and fundraiser at my kids school, and next week being world wide Mitochondrial disease awareness week.  We are mourning those lives lost, we are wrapping our arms around the families at the end of their journey, the families struggling, the families going thru the diagnosis process.  We are joyfully thankful for the milestones and accomplishments not matter how small.  We are mourning our losses and thankful for our Pinocchio time.  Every day is a grieving process and a joyful time all swirled and blurred into one, but on weeks like these it is so much more defined as we focus even deeper.

We are forever thankful to our communities.  Our in home community, our school community, our teams, our families, our friends, and our Mito families. 

I will keep updating as often as possible.  Life is busy.  Sometimes the news is to painful for me to immediately process and then turn around and type up on the blog.  Sometimes I simply don't have the energy to get it done.  Like we have always said at any time you are wanting an update please feel free to call or email or text!

More soon!
Here is us.  This is our Family.
On the left is Lauren, Eli's primary nurse.  Ari is on her lap.  Then Me and Bob in front holding Eli.  Jace is laying on the bed.  Next to me is Lindsay, Eli's nurse.  In front of her is Michaella, Ben's respite worker.  In front of her is Emily and Ben is in Emily's lap.

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