Not the actual country of Holland, mind you. I have nothing against it. In fact, I've never been there. From what I hear they have some lovely windmills and some over-the-top porn, but honestly that is the extent of the very limited and likely flawed knowledge I have of the place.
I'm talking about something entirely different. Most parents of so-called 'special needs' children are probably aware of what I am talking about. A very beautiful piece of writing by Emily Perl Kingsley, a former writer for the television show Sesame Street, winner of 12 Emmy Awards, and author of several children's books. This 'poem', called 'Welcome to Holland', is the author's attempt to explain what it was like to raise a child born with Down's Syndrome.
The piece wants to lead you to believe that even though you think you're life is going to turn out one way, but instead it turns out entirely different, that in order to cope and to hope and to get the most out of the experience of the life you are now living you need to embrace it, and look for all of the good things in this new place and forget about the place you THOUGHT you were actually going.
In a nutshell, the piece tells the story of a traveler, who planned and prepared all his/her life to go to Italy, and instead ends up in Holland. Differently put? When life throws a pile of lemons in your face, you need to make lemonade out of them.
But I have news for you. It isn't all that easy for us simple folk.
Yeah, here I am, busting the balls of the poem 'Welcome to Holland', something that is sure to draw the ire of many people who use that poem as a guideline to life. Why am am I doing this?
Because I have two emotions of late that are consuming me bit by bit. Sadness and anger. I seem incapable of expressing anything BUT those two things. I don't know why now as opposed to at other times. I don't know how to change it. I don't know how long it will last. I don't know if what I am experiencing is 'normal' for a 42 year old man in this situation or if I am just a Class A Jackass.
Probably the latter.
But people need updates. I realize that. The e-mail quantity tells me that. I understand it. I appreciate it. When you're mother sends you a message asking 'Are you ever going to blog again?' you realize...oh shit...some people actually DO depend on this thing for information and check it regularly. I get it, and in some way...there is some comfort there.
But, I have been resisting this blog for one very simple reason. I am so full of negativity right now it hardly seems right to come on and just bitch and bitch and bitch about any aspect of anything. ESPECIALLY when there are so many, SO many, people experiencing things FAR FAR worse than what I am going through.
Why, just yesterday, two people whose blogs I subscribe to posted updates and it had been a while for both. BOTH of these people are going through way more than me, and yet both have found a way to remain very positive despite all the crap life is throwing at them and their beautiful, innocent children.
I envy people like those two, or Ms. Kingsley, people who rise above the shitty plate they have been served and become inspirational, noble people. It really is the key to a contented life, no matter WHAT your circumstances are.
Me? I am a simple, mediocre person, and I cannot seem to rise to that level and become more than the bitter, broken, scary human being I am as I sit here writing this. Maybe, someday...that could be me, that person who is inspirational rather than a force of raw, frayed negativity.
Maybe. Someday. I hope so. But not today.
And I say that I am mediocre not to belittle myself, but it's just an admission of fact. Fame will likely not be my destiny. Nor fortune. I will probably not cure some horrible disease. I will not score the winning touchdown in the Super Bowl. I will not walk on to a stage to cheering crowds. I will not be thanking the Academy.
I will be somewhere, making my way through life as best that I can, doing things that in the Grand Scheme of The Universe in Totality (or at least Earth) will hardly be a blip on the radar. I will likely have a small, somewhat insignificant obituary on the day that I die, and very few people will even know that it has happened. My funeral will be small and not covered by all the networks.
You know the truth is I have always been fairly cool with that. As long as I had my inner circle, my family unit, my few close friends and companions. I never wanted to be anything OTHER than mediocre when it comes right down to it...and simple? I like that. The less complex my life the better.
But nothing is simple right now. Nothing. And as I watch my world coming apart around me I can find pleasure in SO very little. I can find positive in so very little. I've talked about perception before. Probably in one of the few recent blogs I bothered to write. You can look at a glass as half-full or half-empty, and much of the power you have over that is something within your own ability to influence.
A good comedian, who is in the hospital recovering from an attempted suicide once said this.
'People ask me if I am a glass half-full or a glass half-empty kind of guy. I'm a glass half-full kind of guy, no question. But what's IN the glass tastes like shit.'
And that's where I am today. I don't know where I am headed, I don't know what it is going to take to start going in the opposite direction from down. Because when you get to a point like this mentally, even good things are bad. Only a few people out there probably even understand what that means.
Clearly I need help. Clearly I'll have to spend some real time and effort trying to get that help. And clearly I will put it off for as long as I can as I am often prone to do and this thing in me will linger and get stronger.
Such is the way of things in Lillyworld.
But there are updates. Always updates.
Bennett still does not really speak at all. He still cannot communicate with us or we with him. We still play the guessing game, ala an infant, to figure out what he wants. He has a very difficult time with a lot of things. He still does not procees things like a TV show and watch a learning program or anything like that.
If you hand him a piece of finger food, he must place it on the floor, touch it with his index finger, pick it up, then put it in his mouth and eat it. He rubs the air vents for 20 minutes at a time. His fascination with wheels is remarkable. There are many times when he loses it...in a very Rain Man kind of way, where he becomes inconsolable and even hits himself.
But...he laughs, he smiles, he plays. He runs, he goes up and down the stairs very easily now. He's figuring out how to use a spoon. He can engage with a toy for quite a long period of time. He interacts with other children and people as best he can, more instinctively than intellectually.
And...he has had no seizures since his surgery. Not one. And yes, despite where I am mentally, I appreciate the HELL out of that. Tomorrow we go to participate in a Stroll for Epilepsy, a charity fundraiser for Columbus.
I swear to you, if I see a kid having a seizure I will not be able to stop the tears. Seizures, seeing them happen to a child and knowing what they do to a child...well, it's pretty much one of the most shitty things I have ever had to know in life.
Monday and Tuesday? We go back to Cleveland Clinic. He will have an MRI, meet with the Epileptologist, the Neuro-Surgeon who cut out the tumor, and the Neuro-Psychologist. An EEG will likely be in his very near future.
On Wednesday, Jennifer and I attended a preliminary meeting at Step by Step Academy, the special 'school' for children with Autism and other Developmental Delays that we have been trying to get him enrolled in. We were on a waiting list. A spot opened. He starts February 8th. Monday through Friday, from 9am until 4pm, he will have ONE ON ONE ABA Therapy. We are hoping this will be very good for him.
Why am I not screaming for joy on the mountaintop? Cause that has got to be a great thing right? Yeah, it is a great thing, but like I have said...my 'mental condition' is too fucked up right now to experience the hope or the joy for what should be, SHOULD BE, a step in a better direction.
Actually, my Mom said it best, when I had my last phone call with her to tell her that Bennett got into the school. She asked me why I didn't seem all that happy about it.
'Happy?' I said. 'Nothing really makes me happy. It's great that he got in, but I don't feel any differently today than I did yesterday. I can't get to that kind of a place.'
I struggled with trying to come up with an analogy for her, but she actually gave me a GREAT ONE. One that I will use the rest of my natural life.
'I think I understand,' she said. 'I guess it would be like me asking someone why they weren’t really happy with their nifty new prosthetic leg.'
That summed it up for me right there. Yeah, the new prosthetic leg is cool. BUT I LOST MY LEG AND AM NEVER GETTING IT BACK. Yeah, the enrollment in the special school is great, BUT MY SON HAS A DEVELOPMENTAL DISABILITY AND ODDS ARE HE WILL NEVER REALLY LIVE THE LIFE I ALWAYS DREAMED OF FOR HIM.
So, that's where we are with Bennett. I struggle with finding and latching on to the positives, that's my problem. There are positives, certainly. There are also negatives. Could be better. Could be a lot worse.
Eventually, my hope is that I'll stop being pissed off. Then things can really start looking up. For all of us.
As for Carter, poor little guy. He hasn't been in Taekwondo for two weeks. First, he pics up Strep Throat. Really zings him. He had not been sick in a long time too, but this one cooked him pretty hard. On top of that, he gets some kind of Scarlet Fever that then gives him the most awful, itchy rash...lasted for DAYS. Only now has it started to clear up.
And that, in the longest nutshell you will ever see, is what's up in Lillyworld right now. I'll try to not let it go this long again. 2.5 weeks is a long time to leave people whom I care about and who care about me and my family in the dark. I'll endeavor to pull my head from the confines of my butt a little more often.