Wrestling with reality....

I have to admit, I have been wrestling with reality today and wondering what I should post on here.  I know that we need a van, but for a moment, my heart aches because of reality.  So, I'm going to take a break from the van and I'm going to talk to you about Mito.  I look at our lives and there are days(today being one of them) that the reality of Mito feels like too much.  That being said... I wouldn't trade my life for a minute for someone else's!  I wouldn't go back!  This is what God gave me and I'm cherishing every moment I have.   He gave me the most amazing kids in the entire world!  I'm grateful and I wouldn't complain to do anything I do!  Doesn't ever mean it doesn't hurt... but I'll take the hurt because I get MY babies!

Mitochondrial disease is plain and simply unfair!  What is Mito?  Mitochondria provide 90% of the life sustaining energy your body needs!  Your mitochondria, living in your cells have a vital function to life!  When they fail, things in your body begin to fail.  Some kids, you can look at them and see that they are sick and something is wrong, but many more simply look tired or just like any other kiddo.  It's tough. 

 

When Mitochondria begin to fail the organs effected by those mitochondria began to take damage or even fail.  Vital organs... the brain, the heart, the lungs, kidneys, bladder, your muscles... get the drift? Everything is impacted!  They do testing every year from sleep studies, to labs, to Echos and many more things to watch the body and ensure that if an organ is starting to struggle, they start treating it.

 

There isn't a cure.  Just treatment of symptoms.  With Mito, life can change in a moment.  A cold can knock you down and put you in the hospital (we have been there).  The flu is more life threatening and most kids spend it in the hospital.  The damage these viruses are often unable to be repaired leaving you with a new "Normal". 

 The body doesn't use nutrition right and is overly sensitive to hydration.  vomiting once can mean you're in the ER needing fluids immediately.  This isn't just my kids.  There are kids all over, this is the story of most Mito homes.  I've come so close to so many families that I feel like they are a part of my own family.  When a family is hurting and fighting for their child, you are too.  Too often, we've had to say good bye way to early.  Yes, there isn't a cure and Mito can be fatal! 

This is just a glimpse of what it takes to sustain a child with Mito.  The body needs support.  In our kids (each varying on what they experience)we experience migraines, seizures, allergies & food allergies, speech delays, swallowing dysfunction, symptoms of lung disease created by low muscle tone, asthma, pneumonias (Created by aspiration or not breathing deep enough to clear the lungs) sleep disorders such as hypoventilation (You don't clear the bad air because you can't breathe deep enough at rest), apnea, low oxygen saturations and more, lowered immune systems, severe reflux (again, created by low tone), vomiting, delayed emptying of the gut causing digestive issues and stomach upset, poor growth, inability to metabolize food, renal problems, urological issues, lipid issues, fat storage in muscles, and energy that can't keep up with being a kid. It's tough being a Mito kid.  It really is....

 

What amazes me.... the fight.  My kids never give up.  Everyday, you hear giggles in my house because it doesn't matter to them what they have to go through (mind you, they struggle too... they have questions of why and what's going to happen)... but at the end of the day, all they care is that we have each other.  All they care is that today, today was another day they could play and be together. 

 

So, when I wrestle with my reality... I look at today.  Tomorrow, it's left for God.  I'm enjoying every moment today!  I'm loving my kids the best I can. I'm doing things to join in their giggles!  The saying... "We have Mito but Mito doesn't have us...." That's what we live!  If you do anything today... please tell someone about Mito. Please share.  Mito needs awareness. People need educated. We need a cure! If I can tell someone today and it changes the tomorrow for at least one person, I've made a difference!  Van or no van... I have today! 

 

Loving you to the moon and back!

Mommy