Wednesday, April 28, 2010

The Club

Man the weather is nice outside today. What the hell am I doing indoors? I gotta get out there and mow the lawn, I just need to wait until the sun gets into the front yard completely and dries the dew. Shouldn't be too much longer.

You should take a look at Ellen's blog today. She writes a great one called To The Max!, or 'Love That Max!'. It was 'To The Max!' and it still shows up that way in my subscription but the photo and title say 'Love That Max!'. I must somehow convince her that 'To The Max!' is the most genius title ever and she should keep it.

Anyhoo...she gave me a nod, and I appreciate it, and wanted to return the favor. And her post today is very uplifting, very inspiring. They usually are, but she talks about her journey over the years in an attempt to explain what I had been wondering...How are you so upbeat and positive as a parent of a child with Special Circumstances?

I wonder that about many of the folks who write their blogs so fluidly and so filled with hope, joy and faith. I could rattle them off, but just look to your right. They are all there, and they all have something beautiful and insightful and unique to offer. Often, any one of those parents, and others, will write something that will point me in a new direction or give me something very different to think about.

And think I do, all day long, as I spend most of my conscious hours alone in the house. And most of the time? Honestly? Not upbeat. Not happy. Not hopeful. Not smiling.

But in a way, I chalk much of it up to clutter. Even BEFORE Bennett's diagnosis of Autism, even before the surgery, even before the brain tumor, even before the Infantile Spasms of the very first seizure that we had no clue about whatsoever...I had issues to overcome. So I wasn't entering the situation with a clean bill of mental health. Like a garage that hasn't been cleaned out in years, a lot of debris had settled in my mind and my head was, well, still is, in need of a good yard sale.

And Jen knows this. Which is, I suppose, why she hasn't divorced my ass yet. The statistic for divorce among married couples with a Special Circumstances child is something like 80-90%. I learned that only recently, and it was shocking, but then of course it wasn't. Make sense? That's OK, it doesn't to me either.

What is my point here? I gotta have one right? I guess my point is that I certainly owe a debt of gratitude to the bloggers that I follow, and those I have yet to discover. Their honesty, the willingness of them to share their experiences, has probably been the one thing keeping me from tipping over the edge.

Because it reminds me that we are not alone in this, that others have been there/done that and experienced a lot of the same feelings and fears as we have. It's comforting. It's needed. And I am not sure what I would have done in this situation without them.

We are all part of a very unique group of people, just like our children are. We exist inside a clubhouse that anyone who is not living there can never truly understand. And that's OK that those people outside the club don't really know what it's like. They simply are not capable of knowing.

It's not their fault, so I don't hold it against them. Because I know that I would not have been capable in January 2009 of understanding what it was like for anybody in the club.

That's just how it is.

So go read some other blogs listed on the right side of this blog if you ever get the chance and don't already. Great people, with some great things to say. You'll be glad you did, ESPECIALLY if you are NOT a member of the club...because you have an chance to get as close to understanding the mindset of the membership as you are ever gonna get without having to live with the daily pain of it.

It's an opportunity. Take advantage.



  1. Totally agreed...To The Max is genius! And I sooooo want to read some of her posts...but Trevy's upstairs making the walls shake with his pack n' play. Which is how he says "nap times over, Mom!"!



  2. I love Ellen. My son has cerebral palsy from a VERY premature birth. We were told that this would either make or break our marriage. We were newly weds. like REALLY newly wed... June- Sept. ( 3 month) newly married to have a VERY sick child.

    That said, the club is not a fun one and we don't really give treats but we do celebrate the little things. You will accept it one day and you will still mourn.. Good luck!! Can't wait to come back

  3. I came to your blog from To the Max and have to say that I feel many of the same things you expressed in this post and other days I don't. On the bad days I look to the blogs to get me to a better spot and they usually do the trick!

  4. I also came to your blog from To The Max. My granddaughter Beautiful Hailey has Cerebral Palsy. How fitting to come to your blog during autism awareness month. I will keep Bennett in my thoughts and prayers and follow your blog.Please feel free to read mine. (Painting for Hailey)

  5. Aw, thanks. My blog is totally in title crisis mode. I've been told the name and the url should be consistent. The URL is lovethatmax. On Twitter I'm LoveThatMax. At some point, I'm moving the blog over to its own domain, which is LoveThatMax. But I also love To The Max....

    Trust me, Ken, I wasn't issue-free either before I had Max. Some of those issues have helped me (e.g., being able to deny stuff). Some of those issues have not (e.g., not having a ton of patience, being a control freak).

    That divorce stat is scary as hell.

    And, yeah, we're in this club, like it or not. So we may as well make the best of things. Too bad it is not the type of club where we can sit around and drink beers.

  6. There was a whole section on PTSD in a brain book I read recently, and you are so right. . . you aren't entering the situation with teh same situation as some other people. That said, all we can do it take it one day at a time and pray that the yucky stuff doesn't get us down too much. Hopefully, as you reach some kind of stasis (I might have made that word up), that will get easier.

  7. I am feeling like the ancient crone who has been in the club the longest. Therefore, I'm probably the wickedest with the darkest sense of humor.

  8. I throroughly enjoy reading about Max! And Ellen's insights are wonderful.

  9. I will certainly check out this blog....Anything you recommend to me is wonderful....

    We all take away different things from each other's blogs...I rarely ever think ahead....I just have an idea and sit down and type...Maybe adding a photo or two....I don't even watch my grammar! But your words are always beautifully written and deeply felt...

    I hope that anyone reading my blog will just "get" that it CAN be done....And you CAN survive it for many, many years....

    Thanks again....


  10. I don't think any of us are "issue" free before we joined this unique club.

    Also, I am one of the divorce statistics so it doesn't shock me one bit.

    I hadn't read Ellen's journal before, so thank you for sharing it with me. I found it very uplifting especially now as I struggle with the issues of a growing child/adult with special needs.

  11. Love the clubhouse. Such a great description.


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