It’s Mitochondrial Disease awareness week.
But while that may not be her formal diagnosis yet, we are acutely aware that this disease is, again, more likely than not, what our sweet Rae has.
I wanted to share a video or something.
I wanted to find a picture or a fact about mito to post to shed some light on the disease.
But the results of my search were exhausting.
Everything I found is cripplingly negative.
Mitochondria are found in every cell, it’s what gives your cells 90% of their energy.
When you have a mitochondrial disease, those mitochondria don’t function properly and lead to cell dysfunction and cell death leading to system failures.
They post statistics about kids with mito not living past their teenage years.
They post that mito actually kills more children than all childhood cancers combined.
They say that 4,000 children are affected by mito every year.
They shed light on the fact that a simple illness that most kids can fight off can end in the death of a child affected with mito, who is immune compromised due to this disease.
They post testimonies of parents who have lost their children to mito.
They post how these kids are slowly dying because their body is shutting down, system by system.
They say how mito is the invisible disease.
They say how I always feel, like how these kids look normal. They look so normal, but despite what you see, inside their body is a war raging on.
They have good days and bad days where the mitochondria of their cells is slowly making organ systems fail.
They want to inform people how life threatening and horrible mito is.
And it is.
Mito is a horrific disease and I wish I wasn’t having to take all this information and pin it to this sweet baby of mine.
But as horrific as all the statistics are, Rae doesn’t have an expiration date stamped on her.
She is not a statistic and there’s no count down on her life.
Mitochondrial disease doesn’t define her.
Yes, it’s detestable that we have gone through so much heartbreak and frustration and terror after a year of uncertainty and no quick answers.
It’s the kind of pain I would never wish on anyone.
It’s the heartbreak only a parent could feel when looking at your child and not knowing what the future holds.
It’s a future of g tubes, and doctor appointments, and hospitalizations, and surgeries.
We have cried tears of immense pain over unanswered questions and cries of joy when our worries were cast aside by negative results for cerebral palsy, cystic fibrosis, Celiacs, allergies, and countless other things.
We listen to Oceans.
We open our Bible.
‘For I know the plans I have for you’, declares the Lord, ‘plans to prosper you, and not to harm you, plans to give you a hope and a future.’ Jeremiah 29:11
They have no fear or bad news; their hearts are steadfast, trusting in the Lord. Psalm 112:7
We have this hope as an anchor for the soul, firm and secure. Hebrews 6:19
Again, my absolute favorite
God is within her, she will not fall. Psalm 46:5
I refuse to take this week to declare the heartbreak and uncertainty that is Mitochondrial Disease.
Instead, I take this week, and every day I am blessed with to give the glory to God.
I don’t know what the future holds for Rae and our family.
I don’t know if there’s a cure for mito to be found soon.
I don’t know if she’ll progress or stay with the same symptoms through the years.
I don’t know if she’ll experience as much pain as we have in the past year.
I don’t know if there will ever come a day when I can say, “Rae is cured and 100% healthy!”.
I don’t know if there will be a week without therapies and appointments and pumped food into my baby’s belly.
There’s so much I don’t know about our future.
But there’s one thing I know for sure, and that is that I believe in a God who is so much bigger than Mitochondrial Disease and any other diagnosis.