I've always seen my future self as a mildly accomplished writer. In my daydreams I've used my experiences, thoughts and heart-reflections to pen chapters that would make people feel seen, understood and encouraged. Hell maybe even my words would be used to break down the walls around hearts that were long ago sworn as fortresses of protection, no matter what the cost. I've been there, I get it.
So what would my writings mean if they didn't include my darkest days?
Fake. That book would be fake.
So here it is. The dark days. The ones that few people like to admit. The ones that make you feel like shaking your fierce fists at heaven is an impulse you can't control. The days that happen to all of us at some point in life, whether we like to admit it or not.
So I'll write - and not leave a chapter out of my "someday" book.
It's highly probable that my two sons ages 7 and 3 have a rare genetic disease that is degenerative.
And I, somehow and in some way, passed it onto them through a genetic mutation in their X chromosome. Go me.
And my daughter as well. She would be a carrier - and her kids will have a 50% chance of having it.
Oh and my boys will never be able to have their own children. Friggen sweet.
And they **might** live until they're 60, others don't see the flip side of childhood, but the progression will vary. Let's wait and see, huh?
Facts: So there's insulation that surrounds all of our nerves (myelin) and that acts as a highway of sorts for messages sent to and received from the brain - yeah that insulation doesn't get formed (nor can it be produced) in people who have this disease. Tragically, as the impulse (message) tries to make its way across the axon (highway), it leaks out where there is no myelin. This results in little, if any, impulse making it to the next neuron in the chain. Over time the brain simply stops trying, bit by bit.
Hence - the rare, genetic & degenerative disease... that is (A) probably what they have, (B) something we get to wait a whopping 8 weeks to get confirmed.
1 in 200,000 people.
So with my 2 boys does that mean 2 in 400,000? So when I look at them playing in my living room I can picture almost HALF A MILLION other kids who do NOT have this disease playing around them? Pretty much those are the numbers.
You might be thinking "Ummmm she sounds angry".
I told you - I'm in the dark days.
And do you want to know what I believe to be true in the core of my being about these days?
I AM OK TO BE HERE. This brokenness is warranted. This grief is a normal response. These feelings are justified. We will research remedies and alternative treatments, I will find my smile again and see the light and beauty in all of this... but not today. And not tomorrow.
If you feel like telling me that it's all going to be okay and I need to see beyond these emotions, I will tell you that while I appreciate your desire to see me heal, this part of the journey is completely necessary. And I spent way too many years not feeling the things that I had a right to feel, so I will let this one flow - if ya don't mind.
I do believe cognitively that God has a plan, and that I'm loved, and that there will be great purpose in this. I do however believe in my heart that beauty and freedom can come from being vulnerable and unashamedly messy with my Maker. The wrestling (defined: the sport or activity of grappling with an opponent and trying to throw or hold them down on the ground) - is a crucial part of this fork in the road that I NEVER saw coming.
And I believe that these truths of being LOVED greatly, accepted fully, MAD as hell, confused beyond measure and utterly crushed in my spirit can ALL happen simultaneously. He can handle it, I'm sure; and He welcomes my honesty, I'm sure.
He's my Jesus. He's understanding, patient and well-versed with my limitations. He moves me when I need to be moved. He can take my anger and confusion. He wants freedom for me in my innermost parts. He knows what he is doing even when I tell him he can't possibly have control. He can handle me, I'm not too much for him. He aches when I ache, he bottles my tears, he mourns over the mess of this world we have chosen through our toils and pleasure seeking hearts.
He is safe, he is available, he is meek he is my friend, he is enough, he is beside me, he will never push, pull or bribe me. He doesn't need me to perform or be something for him. He doesn't need perfection. He doesn't require that I move at a certain pace or take steps with a smile on my face.
He takes me as I am, I am not too much for him. He takes me as I am, unashamed, with his hand outstretched if I should desire to place my palm in his.
My Jesus he walks beside me, he sits when I need to sit, he calls me forth when it's time for me to rise up and out of my pain. He is enough for me in these dark days, and I am not too much for him.
Fake. That book would be fake.
So here it is. The dark days. The ones that few people like to admit. The ones that make you feel like shaking your fierce fists at heaven is an impulse you can't control. The days that happen to all of us at some point in life, whether we like to admit it or not.
So I'll write - and not leave a chapter out of my "someday" book.
It's highly probable that my two sons ages 7 and 3 have a rare genetic disease that is degenerative.
And I, somehow and in some way, passed it onto them through a genetic mutation in their X chromosome. Go me.
And my daughter as well. She would be a carrier - and her kids will have a 50% chance of having it.
Oh and my boys will never be able to have their own children. Friggen sweet.
And they **might** live until they're 60, others don't see the flip side of childhood, but the progression will vary. Let's wait and see, huh?
Facts: So there's insulation that surrounds all of our nerves (myelin) and that acts as a highway of sorts for messages sent to and received from the brain - yeah that insulation doesn't get formed (nor can it be produced) in people who have this disease. Tragically, as the impulse (message) tries to make its way across the axon (highway), it leaks out where there is no myelin. This results in little, if any, impulse making it to the next neuron in the chain. Over time the brain simply stops trying, bit by bit.
Hence - the rare, genetic & degenerative disease... that is (A) probably what they have, (B) something we get to wait a whopping 8 weeks to get confirmed.
1 in 200,000 people.
So with my 2 boys does that mean 2 in 400,000? So when I look at them playing in my living room I can picture almost HALF A MILLION other kids who do NOT have this disease playing around them? Pretty much those are the numbers.
You might be thinking "Ummmm she sounds angry".
I told you - I'm in the dark days.
And do you want to know what I believe to be true in the core of my being about these days?
I AM OK TO BE HERE. This brokenness is warranted. This grief is a normal response. These feelings are justified. We will research remedies and alternative treatments, I will find my smile again and see the light and beauty in all of this... but not today. And not tomorrow.
If you feel like telling me that it's all going to be okay and I need to see beyond these emotions, I will tell you that while I appreciate your desire to see me heal, this part of the journey is completely necessary. And I spent way too many years not feeling the things that I had a right to feel, so I will let this one flow - if ya don't mind.
I do believe cognitively that God has a plan, and that I'm loved, and that there will be great purpose in this. I do however believe in my heart that beauty and freedom can come from being vulnerable and unashamedly messy with my Maker. The wrestling (defined: the sport or activity of grappling with an opponent and trying to throw or hold them down on the ground) - is a crucial part of this fork in the road that I NEVER saw coming.
And I believe that these truths of being LOVED greatly, accepted fully, MAD as hell, confused beyond measure and utterly crushed in my spirit can ALL happen simultaneously. He can handle it, I'm sure; and He welcomes my honesty, I'm sure.
He's my Jesus. He's understanding, patient and well-versed with my limitations. He moves me when I need to be moved. He can take my anger and confusion. He wants freedom for me in my innermost parts. He knows what he is doing even when I tell him he can't possibly have control. He can handle me, I'm not too much for him. He aches when I ache, he bottles my tears, he mourns over the mess of this world we have chosen through our toils and pleasure seeking hearts.
He is safe, he is available, he is meek he is my friend, he is enough, he is beside me, he will never push, pull or bribe me. He doesn't need me to perform or be something for him. He doesn't need perfection. He doesn't require that I move at a certain pace or take steps with a smile on my face.
He takes me as I am, I am not too much for him. He takes me as I am, unashamed, with his hand outstretched if I should desire to place my palm in his.
My Jesus he walks beside me, he sits when I need to sit, he calls me forth when it's time for me to rise up and out of my pain. He is enough for me in these dark days, and I am not too much for him.
