Humor sometimes come in twisted ways.
Josh has been sick the past few weeks. Just today, he added a new and twisted spin on his sickness. Can we saw gassy? As in, you can seriously smell him coming from a mile away, as in he can clear a room in seconds flat, as in everywhere you go it smells as though a sewer just erupted? Hes also clingy, which means that I get to smell 99% of all that is going on.
But I couldn’t be happier.
Just about an hour ago, my mom commented that “I can NOT stand the SMELL!! If he keeps this up…I might just have to go home”
Yea! You go Josh! Keep it up!!
Filed under: Letting it out, People | Tags: Change, disconnected & random, Kids
When my mom first showed up, and I wrote that first post, I decided that I wasn’t going to fill every minute of the day trying to find some way to hate her all over again. I didn’t need to find ways, I had enough…and I wasn’t going to fill the empty pages here with the distaste I feel for a certain person. Not only is it low, she isn’t here to defend herself, and while my side of the story may or may not be true…she has her side that she is entitled to. I am big on giving both sides of the story, and as a result, I decided I would refrain from all the wonderful tales that I have from this past, almost week, of time spent with her.
But it hasn’t been easy.
I don’t know how many times I have sat down, and filled a page or two, before looking back and realizing that it all held the negative aspects of life…and I had to ask myself…is this really something Im going to want to look back on and actually REMEMBER? Is this something that, come sometime in the near future the kids might want to read? Is it really fair to record MY side, without hers? And I would delete it.
Its not easy, living with someone you don’t get along with, or someone you don’t exactly see eye to eye with, but it is much harder to try and find the positive, the good, in a person like this. I heard once that the people who you need to be the nicest to are the people you hate the most. Not for their benefit, but for yours. Ive tried this week, to make an attempt at the positive. I will say that I have not done well. Infact, I have spent many days with my mouth clamped shut, biting my tongue…I have spent many hours outside, wishing to cool down. Because I am not that great at thinking positive. Let alone, TALKING positive.
Its been a real work out. Mentally, atleast.
I have spent those hours outside asking myself “Is this really something you want to say?” and answering back “Yes, yes it is” only to have to spent another hour outside to remind myself that no. That is NOT what needs to be said.
She has seen the ins and outs of Joshs ups and downs. She has seen him flip out, freak out, and all the rest. She has been around to witness first hand the struggles and success we have with him. She has been there to help cheer him on, and has walked out of the store a few times with us. Just because she came, didn’t mean that Joshs problems would just disappear. She got to see first hand what happens, and how it happens…and that most times, it isn’t anyones fault. That he isn’t an unruly kid, who lacks discipline or self control.
She saw the unorganized chaos, the messes, the fits, and fights. She saw it all. In less than a week.
Yet she still has no “Immediate” plans to leave.
Shes been head butted by Josh, yelled at by Dylan, and even had some attitude from Madison. She came here to see how it was, and shes seen. Just what goes on. Everyday. All day long.
And as much as I really do NOT want to say it, I hope she saw some good too.
I hope she saw the hugs and kisses. I hope she heard the laughter, and saw the rare moments of kindness that was shared between two siblings. I hope she saw through the mess and chaos, and realized that there is more that goes on here. That Josh isn’t ALL about fits and freaking out. I hope she got to see him in action. I hope she heard his contagious laugh, and maybe, just maybe, got to see what a real day here is all about. I hope she realized that the messes could be cleaned, and the laundry would be there in the morning. I hope she knows that Im not trying to give these kids a slow death, but rather trying to raise them up, to have a full life…even though some days the creek does sound promising.
I hope she saw past the unclean, trashed, tight, smelly house, and into the lives of her grandkids.
I hope she got the second chance she wanted. Whatever it was she was looking for, I hope she found it. I hope they gave it to her, and she was able to see through the mess Ive created. I hope she realized that they are (mostly) happy and (usually) healthy. I hope shes knows there is more than what meets the eye.
And I really hope she books a ticket soon, because this positive gig isn’t going to last much longer. Im just saying.
“There comes a point in life, when you wake up one morning, look in the mirror and ask “Who am I?”
Earlier this week, while my mom flipped through the TV channels, there was a tag line for a new movie that went something to the effect of the above, and it really caught my attention. Not the movie, the tag line.
I wonder just how true it is, just how many people reach that moment in their lives when they wake up and ask themselves “Who am I?”
I know I have asked the question, numerous times. Ive stared in the mirror yelling at myself, as if somehow I would be able to respond with an answer that would satisfy my wondering…
“Who are you?”
I used to have it all figured out, or so I thought. It wasn’t even a question that taunted my waking moments. It wasn’t something that even bothered me, I knew who I was, where I was going, and was ok with the way things were, even if they weren’t ideal. It didn’t matter to me that I wasn’t ranking high, or scoring big. I was making myself happy, and that moment, that was really, all I cared about. But as the years ticked by, who I was, changed. I was a husband. I was an employee. A brother. I began to mean something to someone besides myself, and that, that right there, was more than I could ever hope to accomplish.
And at the highest moment in my life, when I would look in the mirror and wonder who I was, I could remind myself that I was…somebody. I was a father, to a little girl whos smile could light up a room, and laugh could change any mood.
Reaching the peek is as high as you can go, before the experience of coming down, takes place.
Shortly after Emmy passed, someone asked me how I could look in the mirror each morning. How could I live with myself, everyday, all day long…and being the smart ass I was, I quietly responded that I didn’t. I avoided mirrors. Which was far from the truth. Every morning I participated in what I referred to as mirror therapy. Where I would stand in front of the mirror, and remind myself that I was nothing. That I had nothing or no one to live for. I fed myself thoughts and ideas that led to the downwards decent, and most often, these sessions would end with some form of self inflicted pain.
Atleast, I told myself, it was something I could control. I could still control myself.
The other night when that phrase came across the TV, I was a bit stunned to hear some of the same words I had used all those years ago. Its not something Ive thought about a lot lately…those months after Emmy died. Its not something I care to remember, or remind myself of. But every so often, I like to look back. Tonight its different. Tonight I look back, and I shake my head at that person all those years ago, I ask myself just what was I thinking, what was I planning, what was going on in my head?
The truth of it isn’t that I was simply wallowing around in self pity, trying to attract attention. I had been stripped, derailed, demoted, from the highest position that I could have ever been given. I failed at what I given a shot at, and to be honest, I don’t think I will even forgive myself completely.
Today when I ask myself “Who are you?” it takes me a few minutes to remember who I am…and then I will quietly state my name. That much I know, I hear it every day. All day long. It drives me nuts, makes me cringe, makes me smile at times, and makes me look the other way. It reminds me that I have a purpose here, a reason to stay around a while. It wakes me up in the middle of the night with bad dreams, or wet sheets. It makes me want to run off the end of the world, and drive away at times. But it always brings me back, makes me remember, and gives me something to hold onto…and when paired with the three hardest words to say, I remember just why I do what I do, and why I do it today. “Uncle Dave? I love you”
While being a father was the highest level of success that I could ever have hoped to reach, being an Uncle falls just short of that.
Filed under: People
Looks like its here.
Despite my best intentions to keep the recent sickness out of the house, Josh managed to pick it up somewhere. Which isn’t hard, considering he usually has some “One on one” time with the floor when we go out, or puts something that doesn’t belong, in his mouth. Most likely, he brought it home from school, I had a bad feeling, sending him one afternoon, and when he came home that afternoon, his bus driver said that one of the kids had gotten “Violently” ill on the way home…and since Josh is the last kid off the bus, he was on there a good 30-45 minutes after the fact.
Josh doesn’t usually get too sick, but when he does…its watch out.
As I mentioned a few days ago, my mom showed up today.
Which means, that instead of going about our usual regular business…the kids all going to school, and I head out in search of a job, I have been at home, thanks to Josh, with my mom. One guess on how many nerves I have left.
Someone asked a few days ago, why she was coming up. To be honest, I couldn’t answer that. My best guess is that she wanted to see the kids, but other than that, I don’t know. She doesn’t like small (unclean, trashed, tight, smelly) houses, doesn’t appreciated the cold and has never been big on small isolated Islands. She doesn’t enjoy traveling, and flying ranks pretty low on her list of things to do. So what would inspire a trip, on an airplane, to an isolated island where she will spend who knows how much time in a small (unclean, trashed, tight, smelly) house filled to the brim with germs?
She told me a few weeks ago, that she wanted to see the kids. She hasn’t seen them since before Molly passed…and even then, she didn’t see the kids. She left a few days prior to Molly’s death. Which is a story I wont get into now.
She spent the morning/afternoon, aside from complaining about how cold and dirty it was here, sleeping. Or, going through “Unneeded” items. Since her arrival, she has told me a number of things that she wants to “See done” before she leaves…things such as organizing cupboards, and cleaning closets. Great inspiration for me, to say the least. I don’t like people to TELL me what to do, I believe I have mentioned it before, ask me to do anything, and I most likely? Will gladly do it. Tell me to do something? It wont be happening.
She has also corrected me, numerous amounts of times, about the way I am raising the kids. I shouldn’t let Dylan up from the table until ALL his homework is finished. Madison needs to learn to cook and clean. Josh should be talking in sentences now (never mind the fact that he is sick). I shouldn’t let them “Get away” with so much. But on the other hand, I tell them no too often…and lets not even get started on trying to help Madison with a problem at school…a problem that I most likely would know NOTHING about. Its left me outside taking a deep breath, contemplating the nut house, or a jail cell.
I know I shouldn’t be talking bad about her, after all, she IS my mom. Right? But we wont be going there, at the moment.
She says the kids are her way of “Getting to know her kids she never knew.” That she feels its her “Second chance” at things…and she doenst understand why, I just don’t understand.
I need to accept the fact that I cant do a damn thing right, and just move on. It shouldn’t be that hard, but it is. Its frustrating, and hard, when I cant do the simplest thing right. As if I don’t second guess myself enough, Im now left weighing the two evils: Which is worse: fever reduction medicine or possible future issues due to the fact that there are “Known to cause death” ingredients in said medicine. Which is worse: Letting a fever get too high, and risk possible brain damage, or giving this deadly poison to him. It seems to me that whatever my choice is, Im going to be inflicting some harm to his body.
Maybe it would be easier if I knew when she would be leaving, but she purchased a “One way fare” because it was “Cheaper.” Something tells me she doesn’t plan on going anywhere, anytime soon. Especially considering all the harm I could be am doing to these kids.
Every day this week, I have sat down to write this same post, and have come up with nothing. It seems my thoughts are intact, until I sit down in front of the computer, and am faced with the white screen staring back at me. Which is where I wait, somehow, anticipating the thoughts to magically appear. But that obviously hasn’t happened. I get distracted, sidetracked, or hauled off to bigger and brighter.
What I wanted to talk about was Josh, and his diagnosis. What I wanted to say was that he is more than what he has been diagnosed with, but what I got was an empty mind, with no thoughts whatsoever until I left the computer.
When I did have said thoughts intact, I began feeling guilty, over the fact that so much emphasis has been placed on Josh lately. Every post has some form of Josh strewn around in it. Some rant, question, or frustration that has come out of trying to understand this kid. In a sense, I wondered if I was somehow pushing the older two out. Not only here, in writing, but in life as well. All those thoughts began coming back, and I heard numerous people telling me over and over again that accepting responsibility of Josh would only compromise what little hope the older two had at a successful future. Am I somehow not offering them the best, by assuming responsibility for Josh as well?
Its not like just recently, since getting a diagnosis on Josh, have people started questioning. There has always been something. Someone. Somehow. Some problem, that has kept people from laying off my case about the well being of the kids.
This week, I was thinking about Josh, in the context of somehow “Ruining” Madison & Dylans future. I watched him differently, as if somehow in the blink of an eye, he would have hold of their futures, and have them ripped to shreds. Was it possible? I looked at him through a different perspective, the outsiders perspective. Trying to see what they saw, if anything, in him. What harm did they see? Was it something I didn’t? I looked at him as more than my nephew, more than a little boy who I love the same as the rest of them, I looked at him as a possible threat. The way, it appears everyone else sees him as.
The thing is, Josh is more than “Autistic” he has more than “Autism.” He has potential, a personality, an identity. He has a future, he has hopes and dreams. He has ideas. He is a human, a boy. He is growing and changing. He is a smarty pants, who often lands himself in situations he really shouldn’t be in. He is Josh. He has a name. Hes a nephew, a son, a cousin. He is smart and funny, stubborn, and shy. He is more than what you see, and goes way beyond the surface level.
But the sad part is, not many choose to look beyond the label, beyond the box he has been placed in. They don’t look past the surface, and instead…get hung up on the one word “Autism.” They back away, as if it is somehow contagious, they stare confused as if it somehow is a complex matter that on a genius could understand. They don’t see him for who he is. They don’t see the Josh…and that, is sad.
Im not trying to say that he doesn’t have issues, he does. Many of them. What Im trying to say, is that he has enough issues, without having to worry about the way people view him, about being ashamed because he stuggles with a problem that other people don’t.
I think its sad, however, that more people cant seem to look past the box that they so badly want to put people in. I think its sad that they cant see past his label, and into the real person…I think its sad, but they are the ones that will be missing out.
Years ago, before Autism was even thought up of in our lives, someone told me that I shouldn’t take on the kids, that if they were to live with me, I would somehow compromise THEIR lives. Their futures. That I would somehow damper their potential. And there for a while, I believed them. I knew (and know) I cant give them the best, or the biggest. I know that I cant offer them name brands, and the most expensive. But what I find odd, is that now. Its not me who is ruining their futures. Its Josh.
A five year old little boy, who wants nothing more than to spend the next 10 minutes with his hero’s…and after that, he doesn’t care what happens.
A boy – who loves to scream, make noise, and drag his bear around. A boy who loves animals, cold peas, and books but hates water, new places, and most people. A boy who can make just about anyone laugh or embarrass the heck out of them, who attends school, is learning to interact with other people and happens to have autism.
His name? Is Josh.
His diagnosis? Autism
His personality, attitude, etc? Limitless
Filed under: People
My mom is coming up, with really short notice. After initially freaking me out a few days ago, she changed her tickets, and will now be arriving on Monday.
Someone asked me if I was “Ok with that.” A question I didn’t answer. Because I have to be, because its happening, and if Im not ok, well then…yea.
So Monday my mom will show up.
And spend what she calls some “Much needed” time. Although, I prefer to think of it as, time. Wasted time.
Among other things, this means I have to clean, and stuff, and hide, and run, and scream, and well, all that other good stuff that comes along with having an unexpected visitor who you really wish would remain just that.
Until then…
This morning I read a very thought provoking post over at Joys autism blog, where she mentioned that autism was something she was thankful for. It inspired some thoughts of my own, that sort of took off.
I am often guilty of swinging back and forth on my thoughts about autism. I often get upset that Josh has autism, knowing who he was before, and knowing the things he now struggles with. But then I get to thinking that he is who he is and that I should be accepting, and I am. I really am. Despite my latest rants on how much I hate him to have to struggle.
Is it possible to be thankful for something that causes Josh to struggle with so many different things?
A few weeks ago I wrote about a conversation I had with a man who said that when he feels down, he likes to look at special need peoples lives and think “Atleast I don’t have their problems” and then continues to feel good about himself. The mere thought of that makes me sick. Not just because you are making yourself feel good at another persons expense, but because often times special need people are looked at as enjoying life less, because of a certain disability. When in reality, they are most often happier than we as “Normal” people are
The word normal, is so misused, not only by myself but from others as well. What defines normal? What IS normal, why is normal so important? Why do we (or I) feel the need to be this alleged “Normal?”
Since getting Josh back, there have been a number of things that I have learned, and been taught. I like to think I have a different outlook on things now, but I don’t know how much of that would be true. I still find myself worried about what other people might think, not so much about us, but about Josh. I want him to fit in, and not have to worry, but on the other hand, I want him to be who he is, and if this is who he is, then that is ok.
Ive often wondered where the line is. How far is too far. Is getting him therapy, wrong? Is it somehow saying I don’t accept him, and he needs help? Help, for what? To “Fit in?” Why then, have I spent the majority of the year telling Madison that its ok NOT to fit in. That she doesn’t have to “Blend in” with the rest of the kids, and act just like them? Whats different about Josh?
I want him to grow up. I want him to be happy, healthy, and all that other stuff that factors into a somewhat “Normal” childhood. But why “Normal?” What do I see in “Normal” that I want for Josh? For Madison or Dylan for that matter?
Which brings me back to that word, the word that I misuse, and overuse. Normal.
Years ago, way back when, is that what I consider to be normal? When Emmy passed away, everyone told me that I would eventually return to being “Normal” but what struck me as odd, every time I was told that was the fact that I was being told I was somehow…NOT normal. That somehow, loosing my daughter turned me into a not normal, person. I was told that eventually I would find a NEW “Normal” which is something that has taken me years to understand. I don’t want to go into all the details now, but what Im trying to say is that everyone has their own definitions of being normal, and what normal is.
I can look back through my life and find different times when I honestly thought I was normal, where other times I would yell “WHY CANT I BE NORMAL.” What strikes me as odd now, is that I still wonder the same things. At certain times in my life, I think “Finally, Im normal” and at other times I wonder “Why cant we just be normal.” I guess to me, normal is a life without so many ups or downs. Which, who, really, has that?
I do accept Josh, and I don’t want him to change, just because he doesn’t fit in. I don’t want him to change because someone else wants him to. I don’t want him to think something is wrong with him, because nothing is. I want him to go, as far as he can go and not any further. Just like with Madison, or Dylan, I want him to succeed. But I don’t want him, or them, to ever be pressured into being someone that they arent.
Josh has a lot to learn, a long ways to go. But you know what? So do I.
I didn’t fight this long to get Josh back, just to try and change him into who he isn’t. I fought this long to get him back, so he could be who he is, without having to worry, or wonder…and while a lot of the time, Im guilty of swinging back and forth, wanting him to be this or that…I hope that he grows up to be who he is, and not who I, or anyone else, want him to be.
Is it possible to be thankful for a kid who finds happiness out of the small simple things? Who enjoys life, who is (mostly) happy, healthy, and growing by leaps and bounds?
…so yes, as the month slowly approaches thanksgiving, I hope I can honestly say without a doubt that I am thankful for Josh (and Madison and Dylan too!) and autism.
Filed under: Molly, The kiddos | Tags: disconnected & random, Josh, My thoughts
Everyday, after Josh gets out of school, we have about 2 hours before Dylan comes home, and another ½ hour or so, before Madison shows up.
People often have told me that Josh wont ever be like “Other kids” and most times, Im ok with it. Do I really want him to be like “Everyone else”, what IS the real definition of normal? Yea, I trip just about every other day, over some stupid comment, or thought that has crossed my path. But for the most part, I really am ok with him. Being who he is. How he is. Im pretty much happy to have him here, to have full custody of him, to not have to have him worry about living with his dad, or being sent around to different homes. To have him healthy, and mostly happy. Most times, that is enough. Even though it seems that as of lately, things have been negative, things have been pretty good.
Really. Shocker, I know.
For the most part, we are striving to put the pieces back. Not how they were, but trying instead to find where they belong now. Not trying to recreate the past, but trying to put the pieces where they need to be, for what they all the “New Normal.” Which is something I often, despise.
I don’t want the new, I want the old. But I know I cant have the old, and the only way. The ONLY way to move on, is to accept that…and move on.
It hasn’t been easy. Its been far from easy. We arent there yet, wherever there is. But its ok. Really. Were here. Where we are, and that is ok. It has to be.
Sometimes it takes more convincing. More convincing myself that it IS ok, that THIS IS ok, that it IS ok. I have to remind myself of that quite often…because a lot of the time, it just doesn’t seem ok. It just doesn’t. Nothing seems right. Most of the time, everything seems quite off.
But it is ok. Really.
Molly used to wait at the window, for the kids to come home. The hour after her nap, and before the kids came home, often seemed the longest. When she would sit at the window and whine, and ask what time it was, if it was time, if she could go, what time it was, if it was time, and well, you get the idea. At 3:15 I would fight her into her shoes and coat, open the door and watch her coat come off as she ran her heart out to the bottom of the hill, where she would wait.
It was the perfect combination. She got her freedom, I was able to watch her.
Most days she would throw rocks, kick the dirt, pick leaves, throw them in the air…but some days, she sat still. Waiting. As anticipation built inside. She sat on a rock at the bottom of the drive way, thinking she was free. That she was so big, waiting for the bus. Alone.
When the bus would come, she would jump, and I could almost hear her scream. The kids would run off and give her the hug she would be waiting for, and together, they would race up the hill and into the house.
It was the 15 minutes that she looked forward to everyday. Every single day, she would wait. She would get excited, ditch her coat and run. Run. Run.
Yesterday I took Josh out to meet the kids. We walked a few yards away from the house and stood at the main road waiting for the bus to show up. I don’t know if he really understood what we were doing, but he got the idea when the bus showed up (after initially freaking out) that the kids were home…and just like with Molly they ran off the bus and gave him a hug. The hug he had been waiting for all afternoon.
This afternoon, as the time got closer for the kids to come home, he brought me his coat.
And a thousand and one thoughts ran through my head as I helped him get his shoes on and walked him down the road, to get the kids off the bus.
Filed under: Emmy
…and just briefly I find myself wishing.
Wishing my way out of this “New life” that has been created. This “New normal” That has become, well, normal. Wishing myself back, into those days before staring into deep blue eyes, and a big smile would make my spine tingle. Wishing myself back into those days where her smile could light up my day, not break my heart…all over again.
I know I should be happy, and I am. Really, despite the looks of things lately, I usually am fairly happy. Able to see through the dusk, and dark days and into the bright future where these kids lives will eventually take them. But some days, well, nights, its just not enough. When the house is quiet, and the toys are still, when the floor isn’t crawling with action, and yelling and laughing isn’t distracting me. When things are still, and quiet…
I find myself where no parent wishes to be.
Alone.
Because no one, can ever fill the hole that belongs to her.
I miss her so much, that sometimes she seems so close. Sometimes, I think that if I could just close my eyes long enough, and hold her close enough…that maybe, just maybe, she will come back. That if I turn around three times, sit down once, before opening my eyes, that maybe somehow that will break the code, and she will be here.
But Im left with pictures.
Pictures that hold memories. Happy times. People who are still here, and still make life worth living. But pictures that hold empty hope. The hope that she still will come back. That her memory still is alive. That she means something to me, and that maybe, just maybe, that will be enough.
I used to wake up every morning, close my eyes, and force them open…and plead. That just for one more day, she could be here. That for one more day I could hold the little angel that made my life, worth living. That for just one more minute, I could hold her, love her, hug her…
I wake up now, knowing that shes gone. That shes not coming back, and that it has to be ok.
Because I have three reasons to get out of bed, and go on with the day.
…and most days, it IS ok. It really is.
But some nights, when things are quiet. When my mind is silent. Her memory comes dancing in, and I find myself missing her…and wishing, once more, to hold her, and tell her…just how much she meant to me, something I took advantage of.
Instead, I will hug the kids extra tight, tell them I love them, and make sure I don’t have any regrets.
Because sometimes, living with regrets is the hardest, living with the guilt is hard, and living without her, is just too much.
Filed under: The kiddos | Tags: Dylan, Josh, Madison, Thats part of "Growing up"
*Pumpkin Gutting ahead*
Pumpkin gutting…
Is serious work.
Sometimes.
Happy Halloween from us, to you.
