Tuesday, September 9, 2014

Dirty Windows on a Darkened Soul

There's so much worry clouding my exhausted mind this morning. I'll be spinning nonsense if I dare go on without at least a full cup of coffee coursing through my veins. (Or, I'll spin it at an incredible rate.)

I'm not sure if I want to talk about going to the fair this past weekend or the fact that the last few years 
of life have been a nearly unlivable hell. Well, that escalated quickly! Then again, activities that are considered "normal" will do that to a (get out my banner) "SPECIAL NEEDS MOM." 

We were having fun at the fair. Gabriel was able to participate on a few rides and thoroughly enjoyed them. Jonah didn't come to the fair since "he's just a baby." I know at the back of my mind, we'd have brought him if he were a typical child, but we both know that it's just not physically possible to jockey both boys and maximize our time with the three oldest children. In line at almost every ride, I had to fight back the thought that I'd never get to do these things with Gabriel and Jonah. The signs are almost everywhere "THIS RIDE REQUIRES FULL BODY CONTROL." Ok, we know what that means. No Gabriel. No Jonah. I almost made it through the night without an all out breakdown. On our way out, we went to see the tractor pull. We didn't have tickets, so we were just watching from the sides, when we were approached by an older gentleman "No strollers allowed in here." he ordered. I tried to explain that it's more like his wheelchair since he's physically challenged and can't walk. The man shrugged his shoulders coldly and told us to leave. I lost it. I tried not to, but I did. I tried to hide behind a corn dog stand. The lights burned as much as my tears. I tried to let my hair fall in front of my face. I. couldn't. breathe. The very thing I had grappled with all that evening was finally thrown in my face like hot ashes. Mercilessly. 

Oh, come now. Look on the bright side! Haven't I learned how to look at life differently? Sure. Have I met lots of wonderful people for whom I wouldn't trade for the world? Yup. Is it worth watching my boys suffer? No. Never. I will never grow accustomed to this part. I will never know how to feel when I watch my boys left in the dust while a group of kids bolt off to the monkey bars or the slides, or just simply stand up on two legs for that matter. It hurts- every single time.

We're being hurled towards another milestone this week. Jonah turns one on Saturday. I don't know where a whole year went, but it passed with or without my consent. Normally on birthdays, I tell my kids how I knew it was time. What it was like waiting for them, and what it was like when they finally arrived. However, it's very different for Jonah. When he screamed his first cries, I responded in kind. Then everything went black. I was sedated. It was the first relief I'd felt in months… no, years. Sometimes I still crave that sedation. That magic little "off" button was like a hall pass out of reality, even if short lived. 

Then we met for the first time, face to face, three days later in the NICU. "Hi buddy." I said stiffly. He lifted his head and looked at me. The melon sized protrusion from his back was like a tombstone marking then death of his childhood. His feet just hung there, motionless. I'd like to say that we had some emotional bonding and that I knew right then that everything was going to be alright, but I'd be lying. I felt more terror at what life will be like for him than anything. 

So many times, I feel like we've all been deserted. Like we've been cast aside like an old garment. I know that's not true. I believe God's word but there are so many times that I just can't comprehend it in light of our circumstances. For example, I don't know how we're going to make our home wheelchair accessible. I don't know how we're going to keep their BCMH coverage. After all, we were told that we "make $50 a month too much to qualify." So, we took a business loan to keep our business afloat and to avoid losing their coverage. To add insult to injury, we were told that if we were ever deemed to  have made "too much" then we could just pay it all back. How nice of the government. They'll let you make payments. Seems like a predatory loan, but what do you do in this desperate situation? How are we supposed to try to keep a business running and yet convince the government our boys losing their benefits would put us under. Jonah's two week hospital stay was over $100,000. The boys could need a shunt revision at any time and then what? Not to mention AFO's, wheelchairs, walkers, catheter supplies, prescriptions, therapies, vehicle modifications… I'll stop now. I'm getting dizzy. It just seems like being a hard working, natural born citizen of the United States of America doesn't get you far these days. 

This story line seems redundant. Maybe it is. Maybe I've told it or thought it too many times. Here's to hoping my mind can rest after a long bout of emotional indigestion. Life is just seems to be unravelling from one bad situation to one that's worse. I keep asking God to give me the attitude that he desires, because I don't have it in me. I do not possess anything good on my own. 

So as business deals go sour and opportunities slip away from our grasp, and our dreams utterly die, people try to offer relief like "Well, maybe this didn't work out because you're going to have something better." And I say; maybe we just have to suffer well… to the point of death… and no exultation waits for us on this side of Heaven. Maybe it just hurts until the moment that we commend our souls to the hands of God. And the question is, do I love him enough for that to be okay?

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