Disease

It's the night time, and the kids are in bed. Glass of wine, fire crackling, me alone on the couch. My fingers are clicking away on the computer. I'm enjoying the quiet, but for the occasional cracking of the fire.

I'm not looking over at anyone on their cell phones, or listening to dogs battling unseen enemies. I'm not navigating fighting children, or making phone calls. It's just me and this laptop.

I'm exhausted. It's such a dramatic word, but it doesn't even scratch the surface of the reality behind it. I feel more tired now than I ever have. I feel more sad and angry.

Feelings can be so conflicting. They can mean so much and so little all at once. I can feel a thousand feelings that mean nothing in regards to knowing things. I know all will be okay. I know I am loved. I know this is not a death sentence. I know God has a plan.

I still feel overwhelmed by it all. I still feel like my whole world is coming crashing down. The glimmer of "hope" has been blown out. The belief that everything-will-be-as-I-want is gone. What's left is the aftermath of a diagnosis I neither expected, saw on my radar, or believed would ever come.

For we walk by faith, not by sight. 2 Cor 5.7

This has been my theme verse throughout the years. Now it seems to be oh so relevant. The loss of the "seen" is staring us in the face. But the walk will continue. It has to. We don't get to stand frozen in space because our eyes are covered over. We don't get to stand still and pretend like everything is gone, because what we want to be there, isn't. We don't get to give in to disease and decay and destruction. We walk by faith...not by sight...

The guilt of the gift of my genes overwhelms me. The guilt of my only son having this aggravating disease. The guilt of the knowledge that it came from me, despite all my good intentions, all my understandings, all my hopes and dreams.

I'm exhausted.

I have to be brave. He's watching me. Every time I cry at the doctor's offices, every time I sob in his father's arms, every time I break down... he's watching. He's looking to me to see how he should feel about this. He's waiting to get his cues about how devastating this all will be, from me. He needs me to be confident, assured, and clear that he will be okay. And he will. Even as my nine year old watches his dreams fade away, he will be okay.

He asked me a question the other night, searching for hope in me.

I told him You can do almost anything that anyone else can. You don't have to give everything up. There will be things you won't be able to do. But most things are just problems, waiting for you to solve. 

He said Problems? 

I said Yes. They're just puzzles for you to solve. How can I do this? How can I be successful at this? And you're the best at solving puzzles. I know you will be able to solve them all.

With those few words, he bounded upstairs and back to life.

It's a lot of pressure, holding the confidence of someone so small, in your hands...

Angry

It's after seven in the morning, America, and I've been awake for over two hours. I've done laundry, cooked breakfast, played with the dog, prayed, and talked with my G.A. I've got twenty minutes until my children come down stairs and join me.

Talidu is currently begging me for a bite of my eggs, onions, spinach, and sweet potato hash. She's whining because she can smell it "so bad" and she "needs it!" I find such comfort in how easily my four legged friend communicates what she wants. I find such sorrow that I am the complete opposite.

I'm angry, America. I shouldn't be. I am so blessed to live where I live, have what I have, to love and be loved in return. I'm blessed beyond what I deserve, and I know it. So many, in other places, are struggling underneath burdens that are miles wider and mountains higher than mine. I know all of this, and I am immensely grateful for what I have. I'm still angry.

My priest says anger is about growth. We can't move beyond our weaknesses, or expose our struggles, if they're never tested. Muscles have to be exercised, in order to become strong. Challenges have to come, in order to learn to overcome. I've got refining to do.

I can't say exactly what needs refined. Peace? Joy? Self control? Gentleness? Goodness? I'm so tired. I'm tired of fighting children. I'm tired of a messy house, that is never clean. I'm tired of rudeness. I'm tired of unending noise. I'm tired of illnesses I can't solve.

Maybe that's the straw that broke the camel's back. I hate what is and I desperately don't want it to be.  The "is" could be so much worse. It could be death. It's not death, at least not in a heart-beat type of way. It is a death of dreams, a death of the picture of what was ahead. And in its "death" new life will develop. I know these things. I believe them. I look forward to being able to see how it comes about. I'm still angry.