Tuesday, April 14, 2009

Bringing the A game ... or not.

It's interesting. At some level, I sort of find myself running out of things to talk about that I feel are as inspirational or poignant as the things I have written about in the past. I've written about all the BS treatments we have tried, all the support we have and how thankful I am. I've written about some harder things and some softer things, but its almost like I feel a need to bring my A game to every blog because of the positive feedback that I have gotten from so many people in so many forms. How do you follow up a blog about your kid crying in her mom's arms for reasons that nobody can understand based on any cosmic fairness test you would care to apply?

Well, obviously, I need to re-set my thinking. This blog, as much as it is there to help anyone going through this or a similar situation or give some insight into what we are doing/going through on a week to week basis to those who care, it is also there to help me get some level of catharsis.

Maybe this is selfish to say, but I can't put that kind of pressure on myself. That's not to say that I won't continue to push myself to the limits of my personal boundaries with regard to what I write. This would not be cathartic to me if I didn't, but for some reason, I have been kicking around this idea in my head that I need to strum the heart strings even harder to elicit the response I need both internally and externally. Sort of like a drug I suppose. Maybe more like the way shocking things, painful things, hard-core things or un-natural things tend to lose their edge over time and not shock, hurt or feel weird after a while. I'm sure there's a clinical word for it, but I can't think of what it is right now. Sensory exhaustion or something like that.

So, we have talked about our life situation and a common question is "how are we going to do this?" My answer is usually "I don't know...but only one day at at time, that's for sure." I guess that's how I will be approaching this blog going forward. I have written all I care to about the history of where we have been with this dispicable disease. My open letter to Mindy Goodin closed that chapter for me.

If we hear of things that might be relevant or interesting to the ALS community, I will post them here, because I know there are many people that read this that are "in it" with us at the hardest levels. H told me yesterday about someone that was posting positive response to some stem cell treatments they received in Mexico, so I'll find out more about that and post it here soon. I'll say that initially we are skeptical and try to be cautious with our expectations.

To our friends who call and leave voice mails. If we don't call back, it's not because we don't love you. Heidi can't dial and I don't seem to have much time for even those things which I should make time for, including calling you back. It is not intentional. Heidi's energy and my time have to pretty much collide in a perfect storm to be able to return phone calls. I get to the end of the day and can't believe that the day is over. Its like when I get a breather, everyone else is mostly asleep. Like now.

A snapshot: I spend my days first taking care of the kids and H, then taking care of H then business, then taking care of business and H and maybe getting an workout in, then taking care of the kids, dinner, business, H, dishes, etc. Then chilling a bit w/ the family then taking care of the kids and H getting to bed.

Friends of H's come in a couple times a week for anywhere from a couple to several hours so I can get out and meet up with business associates, etc. We have friends bringing in meals three times a week, which is awesome and generally sustains us w/ leftovers.

I'm glad the "routine" is coming back after a solid three weeks of spring break type things. K and A, Heidi is happier when you are around. That is for sure. I know I say thank you all the time, but when you are gone, things are definitely harder around here and not just from a physical perspective.

I'll say I did take pride in cooking an Easter prime rib roast w/ veggies and it was awesome. I like to cook and really enjoy it when I have time. It's a good distraction that one can take some pride in when everyone likes it. Even though it came together at the last minute, Robert (my stepbrother) and his kids came over and we had a great Easter meal.

Heidi had some friends over for a movie yesterday and I'll say that she had a great time. Girls, that might be a thing to do once a month or so. I didn't mean to insult anyone when I mentioned that I had to exit the estrogen fest, but I'm fairly sure it was taken in good humor. There's only so much a man can take, honestly. Hanging out discussing whether the actor in Twilight wore too much lipstick is out of my realm of feasible argument. Picture yourselves discussing whether circle hooks or J hooks are better, the nuances of river fishing with dry flies or offshore trolling and how the cycles of the moon affect them or perhaps the never ending and almost pointless argument over which fly you would have with you if you only could have one. You get the idea.
You would have said something similar, but probably more eloquent as you moved towards the door.