Filed under: Good for nothing thoughts
Ok. So I sort of just…disappeared. But I can explain, or atleast, I can try.
At the moment, Im not in Alaska. Again, I can explain, or atleast…try.
When I quit my job awhile back, I figured I could get on with one of the summer places around town, and while that held true, after I looked into things a little harder, I decided I hadnt quit one high stress job, for another. For the past few weeks, I’ve been working two dead end part time jobs, making things meet for the month.
A few months ago, when I took Josh south for further testing, I was also checking out a possible job lead. A few years ago, after Molly passed away, I took an offer from a friend to work with him. Basically he buys houses dirt cheep, and fixes them up as fast as possible. In the two months I was on with him, he redid atleast four different places, including a foundation redo on one. He doenst mess around, he just gets it done as fast as possible. A few months ago, he had offered me a job, to work with him. But at the time, I couldnt just move the kids. The job wasnt in one set location, it was constantly moving, every few weeks. Had I not had the kids? I would have jumped on the chance. But with the kids, it wasnt something I was willing to do.
Last week, he offered me a job that was only for two weeks. Or, every so often. When he needed extra help. Like this week, and next week. It was really, a last minute decision. I was pulling things together at the last minute…having one hour before I had to leave, and writing about it fell to the way side.
So. Yea.
Im currently in Nevada. Stupid. I know. Or should I say, I NOW know. The heat down here is crazy. Almost as crazy as going to Arizona in the middle of summer. That kind of crazy.
The kids are doing good. I’ve called just about every night, and so far…even Josh seems to be holding out – he was the main reason I was thinking against coming.
Since being down here, however, I have had an opportunity to do more than just work…Being in a different place, seeing different people I have had a chance to actually see other kids, other people react and interact with other kids – like Josh. Back home, it’s the small town mentally. Everyone acts (or should act) the same way, and if they don’t, they automatically attract more attention. Because while there is a small handful of handicap people on the island – I have yet to see one person who actually shows similar behavior to Josh’s.
Its almost as if hes the only person out there – that is slightly different.
For now…its good news. The kids are doing great, I’ve got a job for a few weeks, and in another week, I will be back to the normal routine…back with the kids, and back into a more reasonable heat…not that Im complaining…I might take some sun back with me.
But until then…
I can hope for a few things…if not more…and most of all, continue to hope that the kids (especially Josh) treat the neighbor to a nice time…or you know…atleast act like human beings and not like wild animals…!
I lamely attempt to sum up, yet another week.
What happens:
If Im stretched to my limit, and its not over yet…
If Ive dealt with things this long, expecting things to break at some point, and the only thing that has broken is my hopes on ever leading a somewhat, normal life…
If Ive been asked all the questions I can answer, and they still don’t stop…
If Ive come to that point where I can simply not go any further…but we are far from “There” yet…Then what?
What happens when I reach the point of no return. The place I dread to be and yet there is no way out.
I wish someone could say what to do and how to do it. Because while I hate people telling me what to do, atleast then when things go wrong, I can say “Ah ha! Your fault, I always knew better”. Atleast then I would have someone to blame if things went wrong, but better yet, Id have someone who actually thought what I was doing was right…and not constantly arguing my case.
It seems like Ive reached that point where I want to please everyone. I want to make all the right moves because I want people to think what Im doing is right, but more than that I really want to be doing whats right for the kids. It seems that Ive reached the point where absolutely no one thinks what I am doing is right, and you know what? I think they might know something I don’t, Im just not smart enough to figure out what it is. It seems like everyone is sitting there, watching, just waiting until I screw up (because we all know I will) so they can say “Ah ha! I was right all along, you were wrong, should have listened to me”…and I can agree. Telling them that yes, they knew.
So what happens when I reach the point where Im tired of people telling me everything Im doing is wrong, that Im screwing EVERYHING up, that everything I thought was going ok, is far from ok, and the things I knew were wrong, well, they are so far gone there is simply no hope. I wonder if the next time we go out, someone will see us, or see the kids, and see that they are in color coordinating clothes (what that even means is beyond me) or they might notice Josh hasn’t had a bath for a few days, or that Dylan needs a hair cut, or that Madisons jeans are a size too small. I wonder if the next time Josh flips out in public if I will get turned in, because lets face it, that isn’t a far out thought.
What happens when I wish we could just slip away in the night, become different people, and restart, from scratch. Start over from the bottom up. What then?
What happens when I reach that point, and I crack under the pressure (because I never said I was good with this kind of stuff) and I say “Ok, forget it” and I give up all that Ive been working for the past few years. What happens then. Will the people who told me all along that I was doing things the wrong way, finally start giving advice, since Im following their ideas?
Its just. So frustrating. Im not saying Im giving up on anything. Im not saying Im going to quit trying, even though, right now, I really would like to. Im not saying that when things arent going so hot, and that no one really sees what Im doing and why Im doing it, that I have a clear view either. Im not saying I know what Im doing, and that other people don’t know best. Im not even saying that I don’t like getting advice from other people. Im just saying that…Ive reached that point. The breaking point. The point where I am ready to just quit…and even though I wont…I want to.
Im ready for it all to just be over with, and right now, I don’t care how it ends. Im ready for it to end, and to be left alone in the dust – because atleast then. ATLEAST I wont be told that Im doing something wrong – because I wont be doing anything at all.
Im not saying anything, really. Except that Im tired. Im frustrated. Im ready to give up any hope that there ever might have been, and start over. From who knows where. But since we all know that will never happen, I will get up, and carry on…continue doing everything wrong – because atleast that’s something I can do right.
I know Ive written, numerous times, maybe too much, about cancer, and how its effected my life. Ive written up and down, the ways its effected me, and how it took Emmy, and well…all of that. I know Ive mentioned it, but not sure if Ive elaborated on it too much.
My older sister, passed away, July 7, 2005. She wasn’t JUST my sister, my older sister, the one person who had been there every day of my life, she was the mom to Madison and Dylan. It was seven months after Emmy had passed, that she joined her. After however, she buried not only my daughter, but our brother, and sister as well.
This Saturday, there is a walk. Ironic timing, really. A “Cure for lung cancer” walk. The same type of cancer my sister, Madison and Dylans mom, had.
Whats ironic about it, is that just last week, Dylan was asking…he was questioning, wondering, and generally pondering over the facts, and events leading to his moms death. He was just 6 ½ when she died, and a short while later, he found his dad – dead – in his bedroom. Obviously, the events of his dads death, were more dramatic on him, and the events leading up to and around his moms, have sort of, more or less, become splotchy memories. Something he doesn’t really remember, and something he hasn’t really ever wanted to talk about. When it first happened, people told me over and over and over that I needed to get HIM to talk, that I needed to MAKE him talk, but at the time, it was too much. Too much for me, but more importantly too much for Dylan. There was too much for his young mind to grasp, and he didn’t want to talk about it. He was sensitive about the subject, and would usually walk away.
Almost four years later, hes finally showing interest in things. Hes been slowly trying to piece back together a memory of his mom – something that Madison is more than willing to help him with…sometimes, shes a little to eager, and he walks off, leaving her wondering what she did wrong. But that’s how he is, how he has always been. I knew way back when, that he didn’t want to talk about it, and that he would…when he wanted to, when he was ready.
A lot has happened in the past four years…hes been seen by many different therapist, who have all said hes perfectly normal, and that he will deal with things in his own way – nothing to worry about…and he has. Hes changed so much. Hes went from being a very insecure, sensitive, lost 6 year old to a hyper, bold, loud, adventurous, and fierce, 10 year old. Hes changed…and now, he wants to know. He wants to know how “Mom died” he wants to know where he was when she died, why he wasn’t there, and why she died. He wants to know what caused her cancer, why lung cancer, and why the doctors couldn’t save her. Hes asked questions randomly, at odd times when there isn’t a lot of time to answer them, because that’s how he is. He wants the answer, and he doesn’t want to talk about it. He wants to process it, and deal with it himself – which is just fine. Its how he works. Its how he deals.
Tomorrow, there is a walk for lung cancer. Madison was the first one to point it out, a few months ago, when she was online doing one of her “Cancer researches” I didn’t think it would actually come to town, seeing that a lot of things gather in bigger cities. I told her we would see what June brought, because to be honest, I wasn’t thinking June in April. Or was it May? But last week when posters, and flyers started popping up, and a banner arrived downtown, and a website was even devoted to it, I told her we would think about it.
It wasn’t that I didn’t want to encourage her to go at something she felt was important, it was that I didn’t know how Dylan would take to it. I didn’t know what was going on that weekend, or if it was even something we could swing….but being Madison, my lack of enthusiasm didn’t stop her…she set up shop, something she did last year, and started selling things. This year? Her point of interest is for this lung cancer cure walk. Last night she was proud to announce that she had sold enough items, and had $67 to donate on Saturday. As if that settled everything. We were going. Sort of thing. After all, how could I say no to THAT?
I let her break it to Dylan, who shrugged his shoulders, and was all game when he found out that it was going to be on a trail that he has been bugging me to take him on. I don’t know if he realizes what its for, or if its his way of processing it. I know Josh wont have a clue, other than hes going to be surrounded by people he doesn’t know, and we can only hope he does his best to stay calm. Madison – I know will go all out – like she always does…and I will go with them, because they obviously cant go alone. I will go, for my sister, for their mom, and for them…
…and something tells me, that if she knew what her kids were up to, shed be pretty proud of them, not that she wouldn’t be ordinarily…
Its hard to look at Madison and not think of her…its hard to watch the motivation, inspiration and out-going personality shes got, and not see her mom in her…Not that Dylan doesn’t resemble her, but I don’t remember seeing her ride her bike handless down the street. Don’t think I can recall too many times that she stood in the rain, hammering nails.
We will go out tomorrow, hope for good weather, and make the best of whatever situations come our way…
This *one* is for her.
One of the requirements, in order to get the kids back, was to attend parenting classes. Which I did. Faithfully for two weeks. Every night, for two weeks, I would show up, besides myself, there was a group of teenagers that varied from day to day, and the occasional grand-parent, looking for advice on raising “Today’s kids”. The topics varied. But the majority of the things centered in around the kids. Listen to the kids. Dream for them. Follow them. Let them tell you what to do…and so forth. There was the occasional bit that made sense, but for the most part, I felt like I was being told to let the kids rule the house, and all would be fine.
The second week, they covered topics like “What to expect” and “How to deal with temper tantrums”. There was a “Know it all teacher” who had never actually had kids, but felt competent enough to tell everyone else, how to raise their kids. She did her best to cover the basics, but I left feeling more unprepared than I was going in. Because one thing had been made obvious: no one, not even the teacher, could prepare me.
It was something I had learned years ago. The best parenting advice I had ever gotten: Expect the unexpected. When Emmy was born, I was flying by the seat of my pants. Not knowing what to do, or when to do it. Parenting, did NOT come naturally as some say it does. Things didn’t just “Click” and I didn’t understand things – the way people told me I would. It was a learn-as-you-go, sort of thing, and since I didn’t like the fact that I was literally, experimenting on my own daughter, I tried to pretend I knew what I was doing.
Six years later, and I still have no clue what Im doing. The only thing I know now, is what I heard back then, is true: expect the unexpected…and I do now, I expect things to happen when I least expect them to. It doesn’t mean Im any more prepared, because Im not. I no longer pretend to know what Im doing, because that doesn’t do any good. Its obvious I have no clue, Im just not sure what gave it away: The blank stare, or my inability to actually do something about it.
No amount of training, or classes could prepare me for what has happened these past few years, or even whats happened these past few months.
No classes could prepare me for the kids. Or the kids, for me. No one could have told me just how intense things would be. The intense, fierce, wildness of the kids. The intense love and hate. The fierceness behind the three innocent faces and the wild nature that comes out daily. No one could prepare me for long days and late nights. No one could have ever told me that I could be so happy one moment and crashing so low the next. No one, could tell me that I would love this much, again.
No amount of parenting classes would teach me how to deal with Joshs melt downs, and Madison’s attitudes. No amount of training, teaching, or classes could teach me just how intense Dylan could be. No one could tell me that I would be loving, laughing and living all over again. No one. Not one person, could have prepared me for what has been going on. Good and bad. These past few months. Because really, how can someone prepare someone else, for the unknown, the unexpected.
Last night, Josh woke everyone up with one of his mid-night screams. The kind that start out with him just tossing himself around, and erupt into a full blown nightmare that he doesn’t seem capable of coming out of. The ones that come every so often, and when he does come out, hes screaming, crying, and so terrified of whatever was going on in his little mind, that its hard no to break down with him. No one could prepare me, or tell me, that I would be getting up in the middle of the night, wishing away all the bad dreams, and bad things that had happened to a little boy, who technically wasn’t even mine, and until a few weeks ago, didn’t really…belong to me.
No one could prepare me for the long night ahead of me, or the talks I have had, in the wee hours of the morning, the time of day when nothing makes sense, but everything, even the stupidest things, seem to add up. The time of morning where your brain (if your lucky enough to have one) begs to go back to sleep and do just that. Sleep. But last night, was clearly not the time to sleep, because just after 2 in the morning, Josh woke up. Screaming. As a result, the rest of us were up as well…and because its apparently hard to go back to sleep after being awaken in the middle of the night, the kids both followed behind me, after I had swooped Josh out of his crib and stumbled back to the couch.
No one could have told me that last night, I would be sitting on the couch at two am, witnessing one of the sweetest things, that I, personally have seen in a long time. No one could have told me that at two am, I would be sitting there, trying to comfort Josh, with little success…when Madison leaned in for a hug with him, and he stopped. He just stopped crying, and let her hug him. His body relaxed, and he sniffed a few times, before he calmed down enough to actually allow the rest of us to think. He pulled back from her, and looked around. He looked at Madison, at me, at Dylan, and back again. He rubbed his eyes, and sighed.
Sometimes, there is nothing more that I want than to be able to give these kids, all of them, a life they deserve. Sure, they have attitudes, and are strong willed, stubborn, difficult kids, but they deserve so much more than I could give them…I wish sometimes I could just take everything that has happened to them, away, and give them a completely different life, complete with parents, the perfect world and the dog they always wanted. But then I look at something as simple as last night, and I wonder…if they hadn’t been through what they’ve been though, would they not have connected like they have? Would they not have been able to help each other though things that, while some of us may be nonverbal, and some of us may prefer not to talk – even though we can, would they not have been able to connect…on such a deeper level, and know, from the heart, what the other is going through?
I have to wonder, and I will forever wonder.
No one, can, no one could, and no one will ever, be able to prepare me for what to expect, what I should have expected, or what I should be expecting. I know that daily, my thoughts and ideas on kid raising will change. I know that I will make plenty of mistakes, and I will screw up more than enough times. I know that I wont be able to give them what they deserve, or what they really should have…
But I will be able to hopefully give them one thing, if nothing else, I can try to give them each other. I can try my hardest to keep them together, and give them someone that understands, that knows, that really, truly gets it, and while they might not all be blood siblings, and while they might argue like cats and dogs, and fight like there is no tomorrow…I know somewhere, deep down, that they really do love each other. That they understand, and when things get tough going, they are the first in line to give a hug, lend a hand, of just be there…
No one could prepare me for this. For these kids. These wonderfully, awesome, caring, loving kids…that I really…don’t deserve to have custody of. No one could prepare me for the heart melting moments when they show each other the love they really do have. No one. Could have prepared me, and no one can prepare them.
But I have learned, to expect the unexpected…and that sometimes the unexpected moments, the ones that can be so difficult, and completely random and so out of place…are the ones worth reliving.
Over…and over….and over.
It was a pretty slow day. There was only one appointment. We had just returned from Dylans practice game. It was raining, he was drenched from head to toe, and mud had followed him in the house early this afternoon. My voice was lost somewhere in the competition, between Josh and Sponge bob. Trying to make lunch for three hungry animals, wasn’t going well. Madison had tripped, markers, crayons and pencils went everywhere there wasnt already a mess, and I was silently hoping we would have the place cleaned up before the state arrived this evening.
I wasn’t the only one who heard the door bell over the chaos, and any thing that wasn’t making noise, now was in full competition to REACH. THAT. DOOR. Tripping once over the heap of muddy clothes I let a few words slip, grabbed Josh just as he fell and swung the door open, fully expecting a neighbor kid wanting to play “Mud games” with the kids. I was shocked to find a person. A lady. Standing there. She introduced herself as being from the courts. Asked if she could come in and gave me a moment to recover. I stuttered something about a mess, and something else about lunch, and she advised me that was exactly what she had planned to come see. I hung my head, pushed the kids back, and cleared a trail through the tiny hallway leading her out to the living room.
The kids seem to go bonkers whenever someone shows up. Especially, someone new. They were off the wall crazy with a new person. Every toy in the house started making noise, and the last 10 minutes of sponge bob played out in the other corner of the house. The microwave beeped and Josh let out a wail before he collapsed in a heap on the ground: no one was paying attention to HIM. His voice simply could NOT get any louder. I drug him one way, and the kids split different directions. Showing off their latest greatest skills, drawings, paper collections and anything else. I tried to console myself with the fact that THIS is what she wanted to see, but it did little good. Somewhere deep down inside, I just KNEW she was there to tell me I had screwed up, that the kids were too noisy, and that she couldn’t hear herself thinking.
I was still trying to figure out who she was.
After apologizing a few hundred times, I set the kids down to eat, and stopped the noise coming from the TV. She declined the offers for food from the kids, and politely told them she wasn’t hungry.
It took a few minutes, but she finally got around to introducing herself, again.
She was from the courts. She was a court appointed visitor. She was sent to check things out, because, did I know? There was a court date for next month. Someone had brought up a complaint about Josh. Which is why I spent the next 20 minutes going over his history with her. Listing off his doctors, therapist, teachers and anyone else who has been involved with him over the past few months.
The court date, to put things to an end, was canceled for this month. The regular “Visitor” had handed things over to her, and she was from a different city in Alaska. Handling things long distance, with no phone on my part, wasn’t working too well. So she had to pay a visit. Something she preferred to do, unannounced. She wanted to see the real life. Not what could have been. She wanted to catch us off guard, and see how things were going…and in her opinion, they appeared to be “Normal” she said she saw no reason WHY Josh shouldn’t stay, or why someone would bring up a complaint. She said the house appeared like three kids lived there, and didn’t see any reasons for concern. She gave me her card, thanked me (?) and let herself out as I attempted to stop Josh from throwing his food across the room.
She saw apparently, all that she wanted to see. I hope she got a good look too, because this: is our life.
None of the kids were fully dressed, everyone was missing an important item of clothing. I like to smoke and drink coffee at the same time, and there were big stains on the kitchen counters. Dishes from last night lay piled in the sink. Toys and clothes lay mingled together with the misc art supplies Madi had spilled. There was a piece of bread laying in the hall way, because Josh loves to throw food. The garbage was stacked up next to the door, waiting to go out, and I don’t think I have ever actually scrubbed the toilet.
I was a little miffed at the fact that someone had started something new, brought up something against Josh, again. But it didn’t bother me as much as it used to. It seems to be the new normal. State workers, court appointed visitors, unannounced people – they seem to be creating this “New normal” of ours. For some people, it might not be right. Im not saying I enjoy every minute of it. But I will say this: Im getting used to it. Im starting to be ok with this “Normal”.
This month has been an especially hard one, and I would apologize for it, but it seems almost wrong to give the good without the bad. This is my life: Its laid out before you. Cut and dry. Black and white. Its like walking into the house unannounced. You don’t know what you will find, who you will see, or what will be thrown at you. Your welcome by anytime, its just an offshoot of my life. A different view. Different perspective. Its never clean, mostly dirty, and maybe even offensive to some. I cant promise you will have a place to sit, and you will never know whats going to happen next.
But this, this right here. This what you read, what you see, what you walk into. Is my life. The new normal that’s been tossed our way, and Im learning, ever so slowly, to accept it. Not get too comfortable with it, and enjoy what time I have with the ones I have.
I think she had it right today, when she stopped by unannounced. She wanted to see it like it was, and she saw it…
Just the way it is. Atleast for today.
This week has flown right by, so has last week, and the week before, and the week before that. Infact, I think Im still stuck somewhere in December, or last year…wondering why it was 70 degrees the other day. It seems that whenever I try to put the brakes on, and slow things down just a little, things speed up…and life spins on by, making those old sayings about taking time to enjoy things so much more real. I watch the kids, and hear the talk about how LOOONG it is until a certain day, How LOOONG it is going to be until their next birthday, and I think of a few things, remember a few more, and poof! Were knocking on their birthday door.
I don’t expect that last bit to make sense.
This weekend, Im taking the kids to the fishing derby. A kids fishing derby. I don’t think Madison is entirely sold on the idea, and I don’t think Josh will participate. But Dylan, is over the top excited, infact, hes already got his tackle box packed, his fishing pole out, and everything ready to go – even though he isn’t technically aloud to fish with bait, or lures. I remember going there. I remember being four years old. Standing on the edge of the little creek with kids standing right beside me, and holding my pole in the water. Waiting. The anticipation. Watching as other kids got fish, and other parents slapped their kids on the back, wanting so badly to catch the BIGGEST fish, when in reality the biggest fish was only going to be about 6 inches long.
My sister caught a fish before me, she got it, reeled it in, and laid it on the cement before she wandered off to play with her friends. She won a trophy. The “Biggest” fish. She wasn’t impressed, she gave a confused look, took her trophy, and once she saw how much it meant to me, she broke into the biggest smile before she strutted off to show her friends. I remember that day. Its right there. Clear in my mind. Yet here I am, getting ready to take my kids down, and in a way, it makes me feel so…old.
Im Preparing for a melt down from Josh, and a freak out from Madison. Preparing for Dylan to not want to leave, preparing to meet people I don’t want to meet, and maybe take them across the street to practice base ball. Maybe we will bring their bikes, maybe we will just take a walk, see the miniature horses, maybe we wont.
But I plan to take it easy. I plan to not have plans, to take the day off from the stress, chaos, schedules, appointments, and everything else that runs the days together. I plan to take the day to watch them. To enjoy them. I plan to not plan, and let things happen as they happen. I plan on laughing a lot, and smiling with them. I plan on it raining…and forgetting the rain gear, and making “make-shift” rain coats out of garbage bags – because Im cheep like that.
Because soon enough, it will be Monday. There will be appointments, games, and work. A birthday party for one to attend, and therapy for another. Practice games for Dylan, melt downs for Josh, yelling fits for me, and crying from Madison. Soon enough another week will come and go, and I will be dragging my feet wishing for time to just slow down.
But tomorrow. Just for one day. I plan on watching the world spin by, not the other way around. With the world watching me spin by. Just for one day, I plan to walk a little slower, and take time to listen to whats being said. I plan on taking advantage of the small things…and taking time to smell the flowers, or run in the rain. Tomorrow. I plan on watching the kids grow up. Because its been a while.
A long while.
I think its time.
Filed under: Emmy
My mind went blank, the room turned fuzzy, nothing made sense, it was as if there was a spinning sensation…I needed to get off, I was getting dizzy…I had to stop it. I needed to think, I needed to breath. There had to be something. The hope. I needed hope. Where was the hope, yes, hope, I could hold onto, hope I could see, and hope that I could cling to for the rest of my life…where was it when I needed it?
The first thing that came back into focus was her: hunched over in the corner of the office, playing with a germ infested toy. Her faded blue jeans, bright pink t shirt and messy brown hair. It couldn’t be true. It just wasn’t happening. It wasn’t real. It couldn’t be. There wasn’t any way I was going to believe it. There had to be hope. He was the next object to come into view.
Leaning back in his chair, glasses falling off his nose, white over coat, his day planner laid out on his desk, holding the plans to the rest of his life. His pen was sitting on his lip, and he stared in my direction as if waiting. For me. Im sure I wasn’t the first, or the last, person he had to tell the news to. He wasn’t very good. He laid it out, blunt with full force, and waited, to see what I would do. While I waited…to see what he would say. He was the doctor, why couldn’t he fix it, do something, change things, do it over again…and suddenly, my disbelief, turned to anger. A hot passionate anger that made me want to pick up the bundle of energy in the corner and run: far away. To some safe place. Somewhere where nothing could hurt her, and all would be well…
It was his fault. He was the one. His day planner. His dinner plans. His life laid out before him, it sat next to her file. The one that read: Brain tumor. The one that held my destination. Lay there, mingled with his life, and who knows how many other peoples. It was his job. To break the news to people. To tell them their children, the ones that they were suppose to protect, and keep from harms way, were going to die. In more or less words. I hated him. With everything in me, I hated him.
After discussing things with him, in further detail, I took her hand, and walked out of the room. I was numb. I was floating. I was there in body, but I wasn’t there. I noticed the family in the waiting room. I saw the other kids playing, and I saw her, staring at them as well. Having no idea what her future held, but know that with her hand in mine, she would be safe: safe from all the dangers in the world. Safe from anything that came her way, I could protect her, I was her father. Her daddy. She was my little girl, it was my job…and I was failing. I was messing up the one thing that I felt I knew how to do. I wasn’t doing, my job.
I was worse off than the man in the white suit, who mixed his life in with ours. He atleast, was doing his job, and doing it well. I. Was not. I was slowly loosing the grips to the reins I had known. The bottom of my world was beginning to crack, and my daughter was slowly slipping out of my grip…and there was nothing. Not one thing. That I could do to stop it. I was a failure. To the one person who trusted me more than anything in the world. The one person who cried my name, and ran to me for protection…and I was letting her down.
It was the second to the worse day in my life.
Hearing the news was almost as bad as living it out. Just as he had said.
One month to the day after her surgery, and I sat there, holding her hand, yelling for her not to leave, knowing that there wasn’t anything I could physically do to save her, or help her.
Knowing that she was taking her last breaths, but not wanting to believe, because while it put her out of her pain, it had put a start to mine. I was selfish like that. Not wanting her to go. Wanting her to stay. Wanting to be able to save her. Wanting what I couldn’t have.
I spent close to an hour with her, after she was gone. After her final breaths were taken, and the first of many tears were shed. Watching her change, knowing that she wasn’t there, but wishing, that there was some way it was all a mistake…that she would come back, that she would breath, and smile, and laugh, and be…herself again. Just once more. For a little while. I was sure, if she stayed a moment longer, I could save her. I could hold her tighter, love her more, and cure her illness. Take it away, and give her the life that she deserved…
Four ½ years later…four and ½ years, to the day.
It doesn’t seem right. It still doesn’t seem real. There are still times I wish, and wonder, and THINK that shes still there, that I “Lost” her somewhere, that I didn’t leave her in that hospital bed. That maybe I forgot her, or she ran away, or there was some mistake, that maybe…she really isn’t gone. I play tricks on myself, If I close my eyes hard ENOUGH she MIGHT come back. Im just not trying hard enough, not wanting it bad enough, I didn’t love her enough, I didn’t want her enough, I didn’t care for her good enough…
I failed her. I gave up. I walked away. I yelled too much. I drank too much. I wasn’t there enough. I didn’t give her all she needed. I wasn’t…the father she needed.
…and while I cant go back, and I cant undo things, I can go forward, and I can beat myself up every single day, for not being a better father to the little girl who deserved so much much more, than me.
Four and ½ Fucking years later, I can still remember her, on the 11th of each month, and KNOW what happened. I can still remember her, and I can still be upset about things. I can still hate that doctor, and I can still wish with everything in me, that it is some mistake. That tomorrow when I open the front door, with the sun streaming in, she will be standing there, smiling, and we can pick up where we left off.
But Im forced to put these thoughts away, pack them up, and send them to the furthest corners of my mind, if I don’t want to be held back, and grieve for the moments I could have had…should have done…and the person I MIGHT have become…because I refused to let my daughters memory, fade.
One day, maybe. But not today.
Or rather:
Welcome to another edition of:
Josh, Autism, and Kindergarten.
Not that any of them have anything to do with each other, or, rather, they SHOULDN’T have anything to do with each other.
I was talking with someone I know this afternoon, they have a daughter, who will be three in a few months. Today, she said that she is signed up, and ready to go to head start this fall. It hit me in more than one way…from different points, and then it did a loop around, and hit me right upside the head, just incase, you know, it had missed something.
First off, I don’t have anyone signed up for anything this next school year. Didn’t school just get out? Why should I worry about that, now? Are they even signing kids up now? I wouldn’t know. I always allow plenty of time. No fear there.
Secondly, and I wasn’t going to mention this, atleast not here, now. But it hit me that Emmy wont ever be in preschool, wont ever go to kindergarten, wont ever attend a head start. I don’t know why, today, then, it hit me…I mean, there are plenty of other opportunities, I think it had something to do with the age. Her daughters age.
And finally, Josh. Because, oh my gosh, I havent even STARTED anything for him yet. Instant panic.
Its not that I have started anything, or havent wanted to start anything, or anything like that, its that I cant. Because while Josh is technically OLD enough to go into kindergarten, numerous people, myself included, don’t think hes ready. Im not trying to downplay him, or anything, but hes really not ready. Hes just recently been introduced into the school setting, a setting where he had one on one, plenty of time to adjust, and it really wasn’t that important…I mean, sure, its great that he learned about colors, and shapes, but to be honest, it was more about the…introduction of a school setting, that was important.
Today, we met with hundreds of different therapist. Not really, but it sure seemed that way. Josh did fairly well, until about ½ way through, we were in the middle of meeting with #3, and he broke down…I cant really say I blame him. We met with (and help me out, I don’t know the technical names of everyone, so don’t hold me to it) an Occupational therapist (??) another speech therapist, and someone who deals with kids who have been diagnosed with more than one problem (autism/PTSD)…which is where the black and white cards were laid out…and also, where Josh sort of, tripped over that invisible edge.
She said that its difficult working with kids like him, and that it takes someone trained in both areas to be able to help him. Of course, she said the correct name of the certain therapist, but it left my mind, because there are none of those here, in this town. The next best option is to get someone who deals with kids who have PTSD and also someone who deals with kids who have autism, get them working together with Josh, and see where things go from there. She also said that one of the reasons its especially difficult is because you don’t know which behavior should be contributed to which problem. His fear of water, for example, could really go both ways. Either he could have (and again, correct me, I could be twisting her words here) sensory issues which is common with autism, or he could have had something happen that when he sees/touches/feels water, it brings it all up in his mind…
Of course, it was more than enough information to send my mind into over load, and I all but forgot to mention kindergarten until we met up with his regular therapist. Where I mentioned something about checking into kindergartens for him, and he sort of stopped me mid sentence and said something to the effect of “Hold off, Ive got a few other plans for Josh before we send him to kindergarten” which is when I blurted out a long rambling sentence about the state, and requirements, and getting the kids taken away and blah blah blah, all of which really had nothing to do with anything.
He set all fears aside: The worse thing that will happen is hes a year older than the rest of the kids in kindergarten if he does indeed, go next year instead of this year, or he might just be able to pass it up altogether.
It sort of set my mind at ease. I don’t know where it came from, but I had it set in my mind that he HAD to go this year, no matter what, I mean, hes not ready, but he had to go. Somehow. I wasn’t sure how. I had to find out how…and so forth.
Its been a long day.
…and Ive lost my cool more than once. Ive yelled at one too many people, and apologized to the kids, one too many times, I drove a little too fast, and got there a little too late, I hit my head too many times, forgot a few things, and remembered others, said enough “bad” words, raised my voice a little too much, and caved in when the kids wanted something less than nutritional, for dinner…but we all made it home, in one trip…
*Confessions of horrible “Parenting” ahead Advance with extreme caution*
Tonight for dinner we had “Dylans choice”: donuts and juice. There has to be nutrition in there somewhere, the kids were bouncing off the walls for an hour.
Last night, we had cold bagels and fruit. Madison’s choice.
Tomorrow, Im thinking we will have something to the effect of frozen peas. Which would most likely be, Josh’s choice. The guy could seriously live on just peas. Don’t ask. I don’t know.
Wish us luck. Tomorrow we go in for another round of therapist vs. Josh. I check in with my lawyer, and see about adding a second job to the pile.
If I were that optimistic person who Im famous for quoting, but not so famous for listening to, I would say something to the effect of: Tomorrow, We can try again, tomorrow. But since Im not, I will simply say that if tomorrow is atleast 1/2 as bad long hard good as today? I will be thrilled. Totally, thrilled.
I know Ive said before, but one thing that really gets to me, about Josh is when people stare at him. Sure. He might have moments where he is just louder than loud, and then, the next minute hes scared stiff to move. I know, I might be inclined to stare as well…but it gets to me. You can feel peoples eyes, staring. First at him, then at me, then at the other kids, and back to Josh again, and you can just hear their thought process as they look at him…wondering whats “Wrong” with him.
Before I was told that there was a possibility that he was dealing with PTSD, and we thought it was simply autism, I felt like I owed everyone an answer. Felt like I had to give them something, answer the questions that weren’t asked…I felt I needed to set their minds at ease and tell them that we had it all under control, and while I didn’t usually say anything, I had imaginary conversations in my mind….where I would tell them that he had autism, they would accept him, and quit staring.
But since finding out what he was put through, this past year…my outlook has changed. He owes nobody anything. He doesn’t owe anyone an answer, if anything, people owe him an explanation. They owe HIM answers. Hes a four year old boy, struggling with everyday happenings. Its progress for him to go in stores, it’s a positive thing when he doesn’t scream, and throw himself on the ground, and to be honest, I no longer feel like I owe anyone an explanation. Infact, the only remark I have in my mind now is “Hes doing just fine, thank you” a response I have considered using a few times, when people simply would not quit staring at him…not because I feel I owe them an explanation, but because I think Josh deserves to go in a store, and not get stared at because he doesn’t talk with words, but rather with mumbled letters.
Yesterday, after one of Dylans practice games, I hauled all three of them into the store to grab a few things for the week. Madison really, really, really, wanted to take Josh to a different part of the store, and get one of those “Free cookies” certain stores hand out. I thought a few minutes, mainly wondering how Josh would react, but it was also in the back of my mind: How would OTHERS react to them. I gave it a split second thought before I sent them on their way. Telling them where to meet us, and rehashing my decision again and again.
It wasn’t 10 minutes later, that Madi returned…without Josh.
It was one of those “Heart hit’s the floor” moments, while the worse case scenarios played out in my mind: He had ran out the door, were those sirens I heard? Someone took him, did those people actually exist? Something happened, he fell, the scene played out before me…I didn’t want to freak out, but its pretty near impossible NOT to freak out when something like that happens. I asked Madison what happened, doing my best to practice all the “Stay calm” things I had read about, but never thought I would have to put into action, and I raced past those thoughts and blurted out something to the effect of “WHERES JOSH!” before I took off running in the direction of the “Free cookies”
Madison started crying, her face was already red from obviously crying…”He just….just….just took….took….off!!!” she jerked out.
The store isn’t that big, none of the stores here are. But it was bigger than the family shopping center we usually go to. Compared to stores down south, it is fairly small. But compared to ones up here, its big. Its big enough to loose kids in, this isn’t the first time. Im sure it wont be the last, but logic wasn’t working very well as the kids and I ran to where he was “Last seen”
Apparently Madi had let go of his hand long enough to take a cookie, and he bolted. He disappeared around the corner, and she couldn’t find him…
We rounded the corner, I sent Dylan down one aisle, and told him to check that end of the rows, and we would check the others…aisle one. Nothing. Two. Nothing. Three. Nothing. Panic. Things were really starting to take action in my mind. While the store itself isn’t that big, there is an exit that lets out into the parking lot. Blind corners and crazy drivers. At the other end of the store, the outlet to the mall.
More people. More shoppers. More people. But no Josh. Madison was in the middle of a full blown melt down, as we rounded the corner just in time to see the back of a blonde head disappear. I pointed, and we took off running, just as a store clerk rounded the corner with Joshs hand in hers.
Everything took place in the matter of minutes, minutes, that seemed like hours. Something you only hear about happening, you don’t actually expect to happen.
She handed him back, saying she had found him “Picking fruit” in the produce section. “He doesn’t talk” she added, almost as if she was demanding something. I couldn’t think of anything to say and insteadI picked Josh up, thanked her, and turned to find Dylan, hoping we hadn’t lost him as well…
He wasnt scared. Wasn’t fazed a bit. Big brown eyes stared as if he had no idea why we were so panicked, or why Madison was crying. He had no idea what could have happened, what should have happened, what MIGHT have happened…
“You should keep a better eye on him” were the last words she said, before we had left her sight…and it was then, I felt that familiar feeling. I owed her an explanation. I should tell her why he was running reckless, I should tell her why he didn’t talk, why he was doing what he was doing, and why he didn’t act his age…
But I didn’t.
I didn’t know what to say, didn’t have an explanation. Some things he does, I cant explain. Most of what he does, I can only guess at.
In my opinion, hes working hard…real hard, on being a four year old boy, without so many fears, and issues. Hes working hard on becoming a four year old boy…and nothing else. In my opinion, he doesn’t owe anyone, anything…
But then again, I could be wrong.
