Wednesday, January 11, 2012

Along For The Ride

Apparently, accompanying the recent addition of tears and other emotional outbursts that Bennett is experiencing is a whole helluva lot of anger.

He uses the word 'MAD!' quite a bit, and while some of you will say 'Lilly, hey, that's terrific, he's using a word appropriately!', I will remind you that while it is a terrific thing, what is not terrific is the fact that he will, while screaming the word, slap himself in the head, bang his face into a wall, bite his arm until there are actual teeth marks and throw heavy objects across the room putting other objects (and people) in danger.

His eating has become pickier again. Food flies across the room when it isn't what he wants. As the frustration levels increase, the tension level in the house increases. We are all like pimples, swollen and ready to burst.

And I am not setting a good example, because raising my voice to settle him down to keep him from hurting Carter or something like that when he is in frantic mode, while it will work and pull him out of his Tazmanian Devil-like whirlwind of a tantrum, this can't be a good message to send to him. This has got to be teaching him a bad behavior.

I DON'T KNOW WHAT ELSE TO DO. Somehow, I need to learn.

And so, we are really at our wits end in Casa de Lilly lately. Stress levels are high. As high as they have been in a long, long time.

Adding to it?

2012 brings with it a much more expensive Insurance Premium per month, and it was already high. And with that? A higher deductible. And it used to be that one person in the family could wipe the deductible out. So when Bennett would get his first MRI of the year, the MRI would cover the deductible. He has to get 3 each year now to check for recurrence of his Brain Tumor which...oh by the way, the insurance now does not fully COVER the MRI, but he is on a Level One Medicaid Waiver that covers the rest, Thank God.

I do still know that I have to be thankful for that in light of the fact that 2 family members have to NOW split the regular insurance deductible. Which means, now I need to get really sick. Or someone does. Because otherwise we ain't meeting it until sometime over 2/3 of the way through the year. And that's going to hurt. BAD. In addition to the $160.00 extra PER MONTH we now will be paying in premiums, I mentioned that, yeah?

SO...I have a decision to make. Well, I've already made it, I just have to talk about it. I've mentioned it here before, but I am on a shitload of medications. As of now, I am going to have to stop taking some of them.

I don't have a choice. We just cannot afford to buy them each month. We don't have the money. It doesn't exist. I'm not going to stop buying Bennett's medications. I'm not going to stop buying anything else my wife needs or Carter needs.

So it's up to me.

Some of what I take, I take because I allowed things to happen in my life I had control over. Some I take because I have to. The ones I have to, I will still take, but I will start looking into ways to cut them out. The ones I take because of the way I lived, I will stop. And I will compensate by changing the way I live.

I've changed things before out of necessity. I've changed things before out of desire. I quite smoking over three years ago because I was inspired by my Mother, who quit after smoking her entire life. I quite drinking Diet Coke and other carbonated beverages last year, after drinking at least 3-4 a DAY for as long as I can remember, because I found out I had Laryngopharyngeal Reflux.

I can do more. I will have to do more.

Conservatives I know rip the Hell out of the so-called 'Obama Care' Health Care Reform and love to talk about what a crappy president the man has been. All the Republicans have done since they took over Congress has been to cock-block ANY significant change for the better just so that they can try to make it easier to win a presidential election with a bunch of shitty potential candidates.

That's despicable. And you know what? Were the situation reversed, the Democrats would do the same fucking thing. Party politics is ugly. It gets us nowhere. But I am a simple man, maybe it is just beyond my understanding.

Over this past week, I have started re-organizing a ton of my Facebook photo folders, mostly for the sake of my Mom, who has been spending a ton of time in the hospital, caring for a family member, who is not doing well. I try to load new pics when I can, so she can have some stuff to look at. I've also been posting more, so she can have stuff to read.

On the X-Box 360, I have a Facebook App, which lets me view the photos on the big TV, and Jen and I and Crystal (the Home Health Aide) were looking at a bunch of photos and we came upon a trio of photos of Jen, Carter, Bennett and me from Bennett's first birthday party. I paused on them and had some tears in my eyes. They weren't falling, I just looked...moved.

I was trying to explain to Crystal the reason why. See, she doesn't know the Jennifer and I and Bennett and Carter before The Incident, before The Infantile Spasms, The Tumor, The Surgery, The Autism and Everything Else. She only knows us as who we are right now.

And there was something about the photos that had a unique significance and meaning to me. They were special to me, they ARE special to me, because it was probably the last time I could remember the four of us being in a group of photos together where we all looked happy, where we all seemed like we did not have the weight of the world on our shoulders.

It was around 12 weeks before Bennett's seizures started. 12 weeks before Ground Zero.

It was hard to actually click the button and keep going forward in the Slideshow.

You know, as we turned the corner into this year I was feeling very optimistic. And when Jen brought her paycheck home and told me this stuff about her insurance, it really kicked me in the gut. It didn't help that it was on the same day that I got hit with two unexpected bills and a return on something I had sold.

Bad day all around.

But her news just reminded me that we still have so many obstacles in front of us, and sometimes it feels like we are never going to be able to punch through them all. I was really down for a couple of days. Bennett's recent swing into this unexplained emotional roller coaster has not made our lives any easier, but these feelings weren't really about Bennett exclusively, they were more about Everything.

They were more about how difficult Everything has become.

But then I remembered, again, a Truth that has been forgotten then remembered, forgotten then remembered, forever getting lost in my head, eluding my conscious mind always when I need it the most because of all the Piles of Bullshit that gets stacked on top of it.

Isn't that the way it has ALWAYS been? Isn't that how it always WILL be?

Isn't that just Life?

Isn't Life just a series of obstacles to overcome? Isn't it just a set of problems to be solved? And does it ever really just 'go your way'? Maybe sometimes, when you are lucky, but most of the time you do need to nudge it in the direction you need it to go or just relax and roll with it and be prepared for any changes in direction that you might have to take.

Because there are many. And there always are. And not just in Our World. In everybody's world. Because we all struggle, even those of us without kids with disabilities. It just takes on different flavors, different tones. I think we, as parents, with these kids, I think we feel a special, unique kind of pain. I really do. But I think a lot of specialized groups feel a lot of specialized pain, too.

But I think that there is pain and suffering everywhere, no matter what group you belong to. It is part of the Human Condition. That's just Life.

What am I saying? I am saying, or trying to, that believe it or not I STILL FEEL optimistic, despite everything I just told you I was scared and freaked out about.

Because the alternative? Well, to see the alternative all you have to do is go back and read the last three years worth of blog posts. I don't like that alternative. That isn't the place I need to be.

And here, in this 499th post, as I turn the corner into my 500th, I would like to think that I've learned a few things on this journey.

In the past couple of years, as I have reeled from some of the blows received, I've often felt like a passenger, that I was just along for the ride in my life. I have felt as if I was not really steering the H.M.S. Lilly. Many time it has seemed as if my ship was adrift at sea, and aboard her I war merely a stowaway, sneaking out of my hidey hole occasionally to steal an apple and some moldy bread.

But now I feel a compulsion to stand at the helm, to take command, to lead her out of the deluge and into calmer waters and, with any luck, maybe reach an island or two from time to time where we can make port and spend some time relaxing and take refuge from the salt and the storm.

That's why I choose to remain optimistic.

Because I need to be.



  1. Sorry to hear about the new anger issues with Bennett. Hopefully his emotions will start to even out as he progresses and moves forward.

    Definitely love your attitude to remain optimistic. We recently got news that my wife has breast cancer and she is currently going through chemotherapy, so your words struck a chord in me and sort of renewed me. Ultimately I think you have to resolve to stay positive. As you say, this is just life and there will always be difficulties. Things always look better when you have an optimistic attitude.

    Hope the medication draw downs go ok. Health insurance definitely qualifies as one of those "difficulties" life throws at you. Looking forward to #500!

  2. That is a lot to digest.

    I am stressed because me and my kids have no health insurance.

    Heartbreaking to hear that even with it you are still stressed because it is too bleeping expensive to use.

    *plinks a quarter in the time machine*

    I'm going to back to the 80's where the world still didn't make sense but at least the music was rockin'

  3. Sometimes it's just all too much. I know that. I also know that everything changes all the time and that nothing is permanent. I get much comfort from that impermanence: it enables me to be grateful for good times, because they pass, and not to despair during bad times, because they pass as well. Resilience, a sense of humor, faith in the divine -- these are all how we do it, how you do it, how you will continue to do it.

    Insurance companies? They just plain suck, always will. And I HATE them with all my heart.


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