Wednesday, June 01, 2011

If life were fair, there'd be more corn-dogs.

My parents new home in Troy, NY. About a mile from my cousin Corey so her kids are
in walking distance and don't even have to cross the street to go visit their "Auntie Jan" or "HoHo".
(I may have added yellow bricks, a rainbow and a "Jamison Crossing" sign...)
Before we get to anything else, most of you know that my parents have now moved to New York. As of this morning, their stuff is at the new apartment but they're still traveling. Some of you have asked for updates. Rather than stealing her content, you can read my Mom's blog and her little travel journal at:

The item below was written in the early morning hours of May 24, 2011:
I have a tattoo on the "under-side" of my left fore-arm. Actually, I have several. But the one to which I refer is simply a statement, "Life is not fair." It's probably the best piece of advice my Father has ever given me. Always gently. Always with love. "Life is not fair." I cannot say that I've always lived by that notion, though I wish I had. The phrase was usually repeated to me, again lovingly, as I would throw some small fit in my childhood and begin shouting or chanting, depending on which method was required for the situation, how unfair everything was. Sometimes how unfair everyone was. My Father, who always got down on one knee to talk to me so that I would not feel intimidated by a much larger adult looming above me, would get down on that knee and explain to me that life was not fair. He would explain that sometimes things happened just because they did and there was, sometimes, no reason that things didn't work out the way we wished they would.

It's not only the best advice, but the truest advice my Father ever gave me. Life isn't fair. The more "fair" you hope, or expect, your life to be, the more frustrated you're bound to be by the culmination of your life's events.

Things are not, today, as I expected them. There are many things, most of which I've repeatedly shared here with all of you openly and with joy, for which I'm thankful. So many moments of joy which I don't deserve. Moments of joy I've been granted  by God from His grace. I've done nothing to earn God's grace. God has simply blessed me with unmerited favor and...

Eventually the writing continued, with no real association to the previous start.
Again, very early on June 1, 2011:
We are at a point of desperation for finding the right room-mate. It's a lot to ask for someone to move in and, really, become a part of this situation. And, we need them to pay rent in the middle of all of it. Please be praying that we can find someone who fits with the situation we currently have but, more importantly (at least to me) who's a good match for Kristin when I die in the next few weeks.

The ad is on Craigslist here:

I know a couple of you may have gotten a little "hitch in your gitty-up" when you read, "...when I die in the next few weeks." Some of you are just tired of hearing that I'm going to die. Others may be shocked at the "few weeks" portion of the sentence. No matter your reaction, it's a likely truth. You can read the details of that last couple weeks on Kristin's (my wife) blog at: but a lot has happened and continues to play out. The biggest change was a sudden mass of hallucinations. Turns out my liver is failing faster than expected (really, everything has happened a little faster than expected since I stopped chemo-therapy... as opposed to going slower when I was on chemo) and was creating "pockets of ammonia" that, in turn, created hallucinations.

Now, I'm on another drug that helps to clear the ammonia out of my system. As long as that continues to work I should be able to keep living. But we're hearing predictions now like five to eight weeks. When the ammonia builds again the hallucinations will start again and then my liver should give up soon after that. I'm struggling. I miss my parents much more than I thought I would. (They've now moved to New York, which is where I want them and I know they'll have family and a home for the rest of their lives there.) Kristin is overwhelmed and, emotionally, beaten up. I think we both just feel like we're drowning. The water just keeps coming.

Right now I'm really hoping to make it to Relay for Life at the end of July. That's kind of sad because just two weeks ago I was expecting to make it to one more Thanksgiving. That's when my parents had planned to come back out to visit and, essentially, say good-bye. Now I pray daily that I get to see my parents one more time before I go "home" to be with God.

Thanks, again, to those who showed up for the pizza fundraiser. It didn't do so well, but I believe we'll be able to get the car fixed. That's one less thing Kristin has to worry about when I'm gone...

I've got to stop. It's all just too overwhelming. There are days, moments, when I just wish this was all over. I know that pain my death with cause for my parents and, especially, my wife. But can you even imagine how much pain Kristin goes through on a daily basis now? She loves me. I love her. But I'm the signal biggest emotional pain in her life. I'm tired of being the center of the suffering for others. I'm just tired of hurting and tired of worrying, daily, about money.

God bless you all. Thank you for your prayers and support.

Oh, and, some of you are asking how you can help:

  • Meals are great, it saves Kristin a lot of work and stress. Something we can freeze in a disposible container, like aluminum and such, works great. Kristin and I have various allergies and I'm picky so you might want to check first. (Feel free to email Kristin with questions or to see what works.)
  • Medicaid, which we've just started on, is providing some respite-care for about ten hours a week. We could still use some help. Particularly with lawn-care. We have an electric lawn-mower that works well. But I have no ability to use it any longer. (Feel free to email me if you have the time and ability to help.)
  • Other than that, and I know some find this crass, money is a big, big help. No one hates me asking for money more than I do. But, not only are we about to fall behind on the necessities like rent and such, we don't get out much. A combination of my lack of energy and high pain levels don't leave us open for much. Movie gift cards and the like would allow me the opportunity to take Kristin and do something for a couple hours on days when I feel up to it.

Ok, I'm shutting up. Thanks, as always, for putting up with me.

1 comment:

Anonymous said...

Aaron, I'm so sorry you and Kristin have to go through this. I really appreciate hearing all the good and not so good of your story - so many people just let go in silence and you have documented everything, pretty or not.

I pray for you guys every night, and although I sometimes wonder what on earth God is thinking to let you go through this, I think that in part, it is to share with the world that choosing joy is the best thing you can do for yourself and others.

It's good that you are able to open up like you have - most people live in their small secluded worlds, never sharing their gifts with people. You have a great gift of love, sharing, joy and even though you know your time is limited, you still have a sense of humor too.

I hope you get to see your parents soon too. Please continue sharing for as long as possible and God Bless you both!