Sunday, April 3, 2011

Happy Birthday Trevor

Today Trevor turns 4. Happy Birthday little dude!

While certainly significant to Trevor and his family and especially his mommy Danielle, who writes Happy Being Trevy (a blog she subtitles, appropriately, 'Our family's journey with catastrophic epilepsy'), you might be wondering why is it significant to me?

Because like so many of the other kids who have had their lives forever changed by the 'Seizure Monster', IMHO inappropriately known merely as Infantile Spasms, I feel a tremendous connection to not only these children but also the members of their family with whom I have built connections.

Danielle was one of the very first I ever referred to as a 'Soul Sister', one of the first blogs I followed, and in the 2+ years I've been at this, she has been a part of a sub-group of this whole 'Club' of the Internet Mom's and Dad's in this Special Needs world I became a part of on February 12th, 2009.

That sub-group being defined solely by my own boundaries I should point out. In other words, anyone who has managed to pierce through my defenses and bullshit and reach me on anything beyond a surface level and communicate with me past all this that you see before you, past the comments and the blogging.

It is...extremely difficult to explain to anyone who doesn't live this, but there is almost a sense of family with some people. Not everyone, mind you. It is NOT a given. You don't automatically make this connection with everyone. And trust me...not everyone gets along and not everyone sees eye to eye. People often do rub each other the wrong way. It is just like any other community of people.

But some folks make very strong connections, form intense bonds, even though they have never met. It is very, very strange. While I have had the great honor of speaking to a few if these folks, Danielle and I have never had that opportunity, though we have had one fight...which only proved to me how much like brother and sister we'd become. It was a total and complete misunderstanding.

And entirely my fault.

But you probably figured that much already.

Once I'd figured that out, solving the rest was a piece of cake.

Why tell you this today? Does this mean I'll be writing up a soliloquy for all the Special Needs kids on all their birthdays, and if I don't does it mean I care about them less? Um, how many questions was that?

Well, I'm not even bringing this up JUST because it happens to be Trevor's birthday, I'm doing it because while writing in the comments section in response to Danielle's blog about Trevor's Upcoming Birthday, my response was getting too long.

And I have a new rule.

Actually it's more a guideline than a rule, but since I am so verbose if my comments reach a certain length I back out and re-think what I'm doing. I hate the feeling of 'hi-jacking' someone else's blog space and going to town in their comments section with a very long reply, especially when I start referencing things about my own life.

Because then it starts to become more about me, less about them, and I start to feel weird.

In her post, she talks about two things. First, how difficult it is to find balance, on these occasions that are supposed to be fill with joy, and yet they are always laced with a sadness that sometimes makes it more difficult to celebrate the good that is always there.

Hard to find the 'perfect' analogy, but one could try by saying it is somewhat like wearing a garment that fits you as if it were tailored to perfection, that you look fabulous in, that everyone looks at you and remarks how amazing you look in it but the fabric is itchy and does something to your skin that only you can feel and wearing it makes you very, very uncomfortable.

Nothing worse than having an itch that is very, very difficult to scratch, huh? I haven't lived out my entire life with Bennett yet...but I suspect it does not go away. Ever. We, as parents, probably have many a river to cross when it comes to navigating our feelings when it comes to how we process that.

I know I do.

The second thing she discusses is how difficult it is to buy toys for your developmentally disabled child. At that time, you can find yourself lost and confused and the aisles at ToysRUs can feel like cavernous wastelands.

Age recommendations do not apply to your kin, and you know it. You've been down this aisle before, and brought home toys you thought he/she might be able to play with, only to have them wind up as dust collectors, or at someone else's house. You've also brought things home that you never EXPECTED him/her to care about, only to find that they do nothing else but play with it all day long.

We've got both kinds of toys in the house. Those items that we thought Bennett would go for that just sit, those items that we never expected he would that he is all over. There are also those that he ignored for over a year that he suddenly noticed, as if they suddenly appeared out of thin air.

You just never know.

I never really, truly understood what the term 'bittersweet' meant until we started to experience life with Bennett. By definition I knew the word, but I'd never really been introduced to it personally, if you know what I mean. I never got to KNOW it.

I know it now.

Danielle, I completely understand what you mean. How you feel today. What you worry about. The struggles you face.

You are not alone.

I also know that while it is fantastic to hear that from time to time, I also recognize that the actual, tactile help it provides you is, cover your ears, Mommies, shit.

I get THAT, too.

The last time I was in ToysRUs with just Carter and Jen, Bennett could NOT be there because he just can't be out in public at this stage in his...let's just say 'evolution', with his behavior issues. It's too risky. I feel like our family, something I always wanted for myself here at the back end of my life NOT to be fractured since the front end was so VERY fractured, is, you guessed it...fractured.

But then like I I walked around I tried to find a toy for the boy...then I got to remembering that even those designed for 12-18 months are often beyond his abilities to understand and manipulate. Let's just say it was not long before I was looking for a bathroom so people in the local TRU didn't see the creepy bald guy with tears in his eyes.

Lord knows, I have my fair share of ups and downs. One only needs to scroll down to see that one week I might be up, one week I might be down. It happens. To all of us. I'm as human as the next man. Or woman.

It is hard enough for people to find a balance in this world ANYWAY, for people who do NOT have kids who have been forced to walk paths like these. Like I've always said, we all have our own unique slice of Hell's Pizza.

In her response to my comments in her blog, Danielle jokingly poo-poo'd the fact that I gave her the title 'Queen of Balance'. She probably feels like it isn't deserved, because in her mind she hasn't achieved the balance she seeks to the level she wants it to be.

Most of us never feel we achieve it. That's a very expected response. She doesn't really think it fits.

But what makes her, and many like her, deserving of the title, is reflected in the title of her is about the journey. She strives for that balance. She fights for it. Every day. All on behalf of a precious, wonderful boy whom she champions with every available opportunity.

And today, on Trevor's birthday, she is fighting again, only this battle is one that is waged on the inside, one that most people can't see but she chose to write about for anyone who cared to read the words, anyone who cared to learn something about this kind of turmoil. About themselves. About life. About love.

That why it fits.

I'm sure you'll find some balance today, D...and I KNOW that Trevor will have a Happy Birthday, of that there is very little doubt. I hope you can have a good day, too.



  1. Very nice post today.

    1 - The group to which our families are members, is not a group that you WANT to join, you get drafted.

    2- I find it hard to have one decent topic in my posts, and you manage to have 5 or 6. jerk :>)

  2. I like the way you put that. And as for your topics, I find them to be just fine. Besides, I also find that I have MORE than my fair share of WEEKS at a time where I do nothing more than roll around in a Shit Pit.

    That Tinkerbell in your Disney outing photos...she makes me feel super creepy and dirty. I'm never going to Disneyworld or Disneyland EVER. :)

  3. As always, Ken...Perfectly said....

    I so agree with you about Danielle...Her's was one of the first I had read..I "met" you through her, and I think we started blogging at about the same time...You have remained much more dedicated to it than I have...

    But I have to say this...I have experienced 26 birthdays with Colby...You and Danielle are far, far behind...But you both have a clarity about this journey that most parents in our situations will never have....And sharing that with the rest of us? What a gift!!!! Thank you both for that!!


  4. Great post -- and one that I can relate to in many, many ways. The whole toy thing, for instance -- whew. I'm glad that my daughter is now sixteen and I've sort of drawn the line on what toys I will and won't purchase, dealt with the fact that she's perfectly happy with a shoebox of bead strands and maybe, sort of grateful that I don't have to deal with bad teen pop music (at least not yet!). In any case, this is a beautiful, tender post for your friend. (And I would love one of your long hijack comments on my blog, so go for it, any time you want!)

  5. The toy thing sucks. That's all. Don't want to cry, even if I'm alone in my living room.

  6. Nice post, and what a sweet daddy. I hopped over from Yeah. Good Times. to check you out.


You Are a Beautiful Blank Page...Do You Have a Great Pencil?

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a t...