Don't know how long blog will last, but price is right

My feelings about the caringbridge site had a lot of loyalty to Susie and trying to do what is right. I felt that further writings by me would not be appropriate on a website devoted to Susie. It is not a website dedicated to Paul writing whatever he comes up with. I read some chapters from a grief book this morning. First time I've consulted anything like this at depth. Good Stuff. It explained why people are having such a hard time being around me. The book explained that people get really troubled about what to Say to me. The book said that this is a big point of confusion, because I kind of need ears... not that much voices or advice. Just someone who will let me wear their ear out and they don't have to say anything profound, etc. But it allowed me to put myself in other's shoes and it is true. If I were on the flipside of this exact situation, would I want to get near it? Of course not. It would be hard no matter how much I cared for the people involved. As with anything else, when your hand is tied to the stove and you cannot remove it; you have no choice but to deal with it, even develop a sense of humor when you can about it. Who wants to grieve? Exactly. Plenty of times in each person's own life where you HAVE to! The point of this post is that I understand. I just have to do what is important, and also a good thing the book said is that all people grieve differently. Thank God. Cause one thing that I do know is that I'm grieving on my own pace and it will be what it is. I look for all the reasons to carry on, and there are so many. I don't grieve for a lot of the day, and then I after getting everything squared away find a little free time and then I don't mind getting through it. I don't think you can stuff it away and make it vanish. I don't think you can 'snap out of it'. I think you'd better get it out of your system however that may be, and then you are on the true healing path. I do apologize that I'm not writing like I did on caringbridge. It is harder to write with any good flow. whoop, a noise..I am needed.. Nite.

Just watching a Movie not long ago

I just got through watching the first half of the movie, "Michael Clayton". starring George Clooney. This is that type of movie I have watched the last 20 minutes of I can honestly say twelve times. But I never could understand it because I missed the beginning. So, the big day arrives... I finally by accident blunder onto this movie at its beginning. So, I'm already not watching it because I have the roots of what I could never understand just watching the ending. All of the above is prelude, does not matter. There is one line in this movie where Clooney stops his Mercedes after visiting his family and dealing with a brother who has had a lot of problems. He is upset, he drives but looks upset and then he stops. His son looks to him and Clooney's character looks back at him and says some dialogue that basically says, "If you do right and do alll the right things, these bad unfortunate things in life will never happen to you." Without even thinking, I came out of that scene and I was physically standing up because regardless of the context or brilliance of the script or whatever.... this is wrong. You can do everything right. As hard as you try. And you had better understand that adverse things are going to happen to the very best as well as the worst...if there is such a thing. I guess, worst means people that make the bad decisions repeatedly. I could go on forever on that one. Just that for anyone who goes through life and believes this can really happen will get crushed with confusion when something unexplainable and tragic happens.

This kind of thing can add years and years to the process of healing. When you understand after a lot of worrying that this or these events were out of your control, you can get on to true healing. I mean, I think I know that. I lost a brother when I was 18 years old, actually about a week before my birthday (or two weeks). I went through this dilemma then. What did I do? What could I have done differently? And I mean years afterward....Sets of 365 days repeated, did I finally exhaust the subject and realize I had used up a lot of valuable twenty year old time.

So, I'm firing off this post and I know its not that palatable to anyone. But it is right for me. I guess, also, maybe I am going down that path and I'm refusing to admit it... just clipping along at a much faster rate. Could I have done ANYTHING to stop this? And how can you forsee TNBC? Fast answer... you cannot. And it makes me feel no better about it all. If it had been in my control, I suppose I would have guilt. Yet I only, do have the feelings of loss and sadness. I had the funny thought as we battled this grim devil called cancer that when the war was decided, after all that time and hard work I would be at some sort of peace. That was wrong or even defensive thinking (kind of like defensive driving), the best way to occupy my mind.

Well I typed until the end of Michael Clayton.......... and that shut me up! If only THAT happened in the real world.
Paul

No way to pretend....It is hard

It has been hard to write. You have to plug in, start, get to site, log in and hope that all of that goes well and whatever you felt like writing, you find yourself at a new cliff when it is time to shove off and write. But I'll try to stand close to the title subject.

Have had some good friends come around and check on me. Been grateful for that, because I definitely went through that period every person who knew warned me about. There is this little hitch in time where everyone I think is afraid they've not understood where I am standing and thinking.. it is the time when they told me, a hard part is when everybody quits checking in. It is a lonely thing, and it leaves this house with all its memories which are still more than memories, they are set habits and all have been kind of lost, unless you can remember them all. And you don't. My entire vantage has been to be central with my girls, and there it has stayed. Their tendencies of their mom, I not only admire but wish I had that same thing; that tenacity to keep on. Yet strong emotion is still at hurricane force (for me), which means it has to be for these children and the rest of the family. So you basically are still free falling and hurting, and you know you haven't reached whatever the bottom may be... but amazingly, way down deep I have a warm light way down inside that guides me and I know in time, with work, I'm going to be ok; which of course means the children have to be from every measure I can take, they have to be doing fine before I think about myself. There's the trick.. I have to come about despite these strong feelings that are really really hard and be ok for them. So, this is where we are... most definitely together and a family as well as extended family and as my friend told me today, "do you know how much people are behind you"? I honestly replied, that I'm in a situation and I guess of shock, or some other emotion that may not have a good definition that blinds me and so I don't call out or call on it... but it felt good to hear it was still there. Of course, I'm just working on the Maslow hierarchy of needs. Sleep, wow, what's that. Food, you think that would be easy, but no. I am at beck and call to every possible sound or other that either of my girls need me. Trying to make sure they know I've got it down, I'm ready and I want to just hug them (if they'd let me). Yet, these girls have their mother's very tough spirit. I just admire it and thank God they have it. I don't. So, I'm working hard to just keep up with them and I so pray they can tell and know that I'm supra-sensitive to helping them. Yet their individual natures play out, and they are going about business at a remarkable rate. But I can't stop this phase I am in, which is uni-parent, responsible for all. And I'm determined that these children are going to thrive! better end with that. Thanks. This was a hard post. Very hard. The ease of words is not there as once. But hey, the last thing I am going to do is surrender. Were I alone, don't know. I guess in long run I doubt it. But I do know which way is up. I realize suffering is everywhere, everyday. I'm not exclusive, nor my family. I could get more of some unknown event tommorow, so savor what you have at the moment you have it. But grief does disable the response time. Peace. Love. Never Surrender. Don't sweat small stuff. I'm rambling! -ha- but its positive rambling,so maybe a good sign for the future. Till next time, I'm going to try to write more after my friend told me it was gonna be good for me. I think he's right! I'll get my rhythym back; when I'm still waiting for that. Sincerely, Paul

Thank Goodness For Tony's Pizza

I have to thank the lord for Tony's Pizza; and the fact I can cook these frozen pizzas. I mean, normally you have to go to a culinary institute or other cooking school to master making a frozen tony's pizza!!! I'm laughing of course, but it is one of Abbey's few foods she will eat and she likes the way I cook them just fine!

It is in one way so simple, yet in another it makes this father so very proud he can make his youngest happy in regard to her appetite. I jump to like a junior officer to a general when she requests a pizza, and I am almost running to start the oven, get the pizza from the freezer and get it underway.

I did not realize that during the time I stayed with susie during her illness, that I was desperately taking notes mentally as to the little things that make these girls happy. It showed itself the very same week of Susie's funeral. Both grandmothers had just about prepared and decided they were going to have to live with me for a bit so the girls would be taken care of and even they were a little impressed that I was as capable with the children as I was. It makes me very proud because they are all I have in a way. My little family apart from my parents and Susie's parents is just me and these two children. It brings a lot of comfort to know I'm holding my own.

Not Greatest Day

I've been fairly happy with the way I've handled everything since Susie left. To the surprise of everyone I picked up pretty well and I'm still very proud overall. You go along doing pretty well, but what you cannot prepare for are the unexpected things that you can't possibly provide a defense for. That's pretty much the day I had today. I ran across some things ...an old letter from Susie to me, an annual that Susie had written in, some other things. And it was like pulling on the string that can unravel you. So, I don't know if it has a name like despair, or what... but I do know all these feelings I haven't properly stored away in the time period since, just all came rushing up. I remember from other loved ones that have passed away that feeling; how it can hit you when you do not expect it. But I plan to stay away from such things for a long time now. Let time heal before I ever, if ever, enter that trap again.

A good friend sent me a book on grief, and I think its going to be my bedtime reading tonight. Any good advice not only how to avoid such things, but also how to deal with them when they pop up again. I so wish I had not found and then gone through that stuff today. It certainly ruined what up till then was a good day. Days like this make you feel quite alone in regard to these feelings. A spouse, whom you shared so much with, the absence leaves a lonely place that nobody else can really relate to or help you. It is just the way it is.

Ahhh. I just got summoned by Abbey. She needed me and I just got back from helping her. These girls are my present, as opposed to the past. They provide me with the desire to get through these things. My time with Susie was past. The last year and a half we didn't argue, and we knew the situation was so grave that we were a team, desperately fighting something we were told was unbeatable. When you are put in a situation like that you don't surrender, you actually are put in the position of trying to beat the unbeatable. Amazing acts of tenderness and love during that time period. So, I must look forward. Something in you wants you to look back, as if you are afraid you will forget. This is not helpful toward healing, however.

So tommorow is a new day. And although a part of me wants to look back, I learned today you've got to be really careful about that. We did all that we could, I know that. Every day was a fighting day... so I know you cannot have regrets during the last 17 to 18 months. For me, and my family I'll have to painfully not look back too much. I hate that. But understand it is too emotional to try and do. Will look forward and get through this. Let's hope tommorow goes real well. Today doesn't need to be repeated, and I guess it took that bad lesson to show me.

Sincerely, PM

Whatever comes to Mind

I'm happy this blog is starting to work correctly. You might imagine my initial reaction after I had set it up (yet not realized I had not enabled others to post), and noone wrote anything! Much different from the way it was on Caringbridge! I basically figured that the blog idea was a failure and that I would just write to an audience of one. I was happy to see some people want to log on and read and more importantly, write.. to spark ideas and I've just always enjoyed it since I learned about the discussion boards on America Online all the way back to 1993-1995. When Autism became a part of our lives in about 1999, there were more limited places for discussion boards and the AOL board was big. Sadly, I think in the roughly seven or so years I was a part of the board of other autistic parents there was only one other father. Doesn't mean there aren't a lot of super fathers who have children with Autism, but they either never found the discussion boards or they didn't care to write. But although we seemed to all be going through the same phase of Autism, 'the younger years", mostly it was moms pouring out their heart and worrying about this or that. Divorce rate probably played its part (it was 85 percent then for couples with an autistic child_has gotten higher in later years). Whatever, I learned a lot and in areas that we had succeeded I shared those kind of victories. I learned we were lucky, due to the fact some autistic children have seizure disorders, gastrointestinal disorders, and on. Abbey's the healthiest physical child I've ever seen! So we were blessed in that regard. It widened my understanding and broke my heart for some of these parents who had more than just figuring out autistic behavior to deal with. It's a shame that board kind of fell apart. As happens, certain personalities clashed and next thing you know the thing after so many good years broke into pieces.
Well, I just wanted to type. The girls are in bed, and I'm happy that things have been going good. Not great! Everyone of this family including the ones who don't live here are still deeply affected by the loss of Susie. I saw a picture on facebook of Susie. It was the year before she won the Ms. Mckenzie pageant so I did not know her at that time. But just a look at the phtograph, and it was kinda like falling in love again. Made me remember why I adored her then the way I did. Like the song, "The Dance" by Garth Brooks which sadly I had never heard until Joe curtis' funeral.... That time period was the time right before we started 'dancing'. And with all the things we had to go through, No I wouldn't change a thing. When I talk about her beauty now, I'm talking about her heart, her thought processes and just the random kindness she would do; many of the things I never knew until people told me. So, even to miss the pain, I would have never missed the dance. Grief is a terrible thing. And I'm not the only person on Earth who knows about grief. However, I realize this will take some time. The holidays I predict will be hard on us all. If we get through all of that, possibly the new year can really provide the long road back from this grief. I'll digress. And hope everyone is finding the good and funny things in each day in order to keep on going! Paul

So Far So Good

It is a typical weeknight and the house still has a quietness and more that lets me know a very wonderful part of this family is gone. A hole that cannot ever be replaced. Yet a strong lesson painfully learned is to love those around you. Do not take a second for granted. Despite the small things that cause people to get aggravated with one another, you have to ask yourself, "what if I were not able to see this person any longer?" It can really make the petty arguments and other things that we all get wrapped up in not matter that much.

Susie had been having trouble going up our stairs, which are straight up and not kind going up and down them. During the radiation treatments, Susie became a little feeble (thank goodness it was not permanent) and one day she fell down the stairs. We tried as quickly as we could to build a bedroom downstairs out of what kind of served as a game room in the past. So, as the room was just about completed, Susie moved all of her clothes and mine to the new closet. Sadly, the room got finished right about the time of Susie's last hospitalization. None of us knew just how fast this thing was happening... how little time was left. She only got two really good nights to sleep in her bed down here. It became too painful to get off the bed and back on, so she moved to the couch for the remaining days.

Anyway, my point of all of this was that of course after we lost Susie, I couldn't ask her little things. One of those little things was that she had moved every one of my ties and put them somewhere. With the funeral home and funeral and all that followed, I had to wear my suit and I tore this house up looking for one tie! Where on Earth did she put them? They had seemed to disappear. Thank goodness there was one tie that escaped and did not get included with the rest of them and that was the tie that I wore. I wanted to wear my Autism tie, but didn't get that opportunity. But it was as if I wished there were at least a phone line to heaven, where you could call your loved one and ask something totally as simple as, "by the way....where are my ties?" It took more than a month or more and there was a cardboard box in the bottom left corner of the new closet. It had been shut as if packing. I opened this box and inside was everyone of my ties. Maybe you can understand, but I sat down against the wall clutching this cardboard box full of ties and cried my eyes out.

Yet this post was meant to be about how this little family is still going. Both girls have been so good to their father. Maybe they can read me just as well as I can read them and they know how hard I want to be taking good care of them. How, despite my inability to posess that magic which Susie had with these girls, I still with a lot of help from family and friends have been able to keep it going. I know Susie was worried about that. Heck, I was worried about it! Scared so badly that it would all fall apart in my hands. But with that help I've been getting, my children are carrying on. It's not all perfect; in fact quite the opposite in that these two angels have lost their mother at such a young age. My dad lost his father when he was around 10 years old and it affected the rest of his life! So I know the same thing is happening right now, and time will bring challenges that I really wish these girls didn't have to face. But we are making it, and none of us were sure that we would or could! I'm very proud of that. It is hard work, but I do it with more passion than anything I've ever done. I cannot take Susie's place... noone can. But we are going to keep on. Its the most important thing in the world to me.

I just read about the Depression (I'm sure people are thinking..why don't you read something a little lighter?) Our economy right now is in a similar pattern and if you don't learn from the past, well you repeat it so I'm just trying to see parallel things from the thirties and right now. but they dedicate a lot of time to talking about President Roosevelt. He was a completely different person before he was hit with polio, causing paralysis of his legs. The book went into talking about how adversity toughened up this man, and that without that happening it is very likely that he wouldn't have been president AND he would not have the empathy that he learned for the plight of the average American hit hard by the depression. So it is the kind of stuff that makes you think. We in the end are a result of all the things that happen to us. Strange, isn't it? That some of the hardest things in your life make you who you are. If everything were always easy and you never felt pain, you would be completely different. It makes you think. Paul

Autism-

Autism is of course when the parent is first introduced to it and it is their child, NOT WELCOME. You go through a lot of pain. People you just know not even friends who happen to have a child your child's age start the comparison game and in addition to what is starting to happen behaviorally, it's an ice cold dagger. Looking back I guess we built a fortress, pulled in and locked the fortress walls and that was it for a long time. I remember co-workers usually in the morning as everyone's getting going complaining about what their little one did last night. I remember having to just stay stone silent, because it would either blow them away so hard they would feel alienated around me at work which you don't want or the other side of that blade is the ones who don't care. That one was always harder to figure out but it felt sometimes like there was an unspoken thought of, "you must have deserved it or received it for some reason". There was a little of that, not a lot. But at least I stayed quiet. Never knew where to start or stop. That behavioral period lasted for many years and I believe the Spanish Inquisition might have been easier! I just know we loved our children, therefore we were going to win with love. Despite the pain. Now, it is actually hard to remember the bad behavior times. It has been that long. For any living in that nightmare time period, know there is hope..tons of it not that far off. You are in a hurricane and you just have to hold on for dear life! ZR