jennifer,
first, yes I write, I always have written, LOTS. I journal, have since I learned how to write as a small child. I wrote reams of poetry, I write "books" (unpublished for most part) and short stories. I write letters, pages and pages and pages, to many many people, LOTS of snail mail letters to a wide variety of people, elderly relatives, family friends, cyber friends, and also LOTS of long emails. Alas, while I write enormous amounts, I am disorganized, as I am sure you can tell. My thoughts race and run together and get mixed up and I just write or type away and let them come out as they come to me. Often I have no idea at all what I am going to write until I have written it. I am bipolar, I am hypomanic, have been all my life, and I am hyper um....hyper um.....well, LOL< there IS a word for it, but the word escapes me, but, it means I just write and write and write. And I am driven to write, and cannot rest of a day until I HAVE written. (no, I do not blog, becuz my webtv is not compatible with many blog sites)
I am also hyper sensitive, and am always analyzing things, and I feel my emotional pain and often I feel others emotional pain....and there is a word for that, too, LOL, but again, I cannot find the word at the moment. And some will find THAT part of me to be myseterious or hokey or weird or whatever.but others who know me tell me I am, and others who are like me feel it in me.
ANyway, most of the time I flew by the seat of my pants. I ran on autopilot a LOT.....Yes, raising difficult children is very very very hard. I remember I would be at work and be thinking on how to handle some issue with difficult child and my coworkers or friends etc would say things to me and I would think gosh....how come I have to parent so hard and they seem to not have to hardly parent at all?
Over the years a few things sorta came to me.....some from other parents of other special children, some from day treatment, some from hospice patients......all kinds of sources. a few of these things stuck with me.
In no particular order, I have these:
http://www.lovethissite.com/crackedpot/
http://www.our-kids.org/Archives/Holland.html
http://www.thevoiceforlove.com/serenity-prayer.html
The first one is a story about - um, in my opinion.how we EACH have a purpose in life, even our difficult children. This story helped me reconcile with the idea my difficult child has a purpose no matter how she ultimately turns out as an adult. Even if she does not have the life I had hoped all my children would have....even if she never became an independant adult. She still has a purpose.
The next one is about learing to adjust and accept that Life did not turn out quite how I had planned.ok, not at all how I ever dreamed, not even close. Jon and Kate plus 8 say something on their show about.it may be a crazy life, but it is our life. OK, this is our life here at my house. It may be a crazy life, but it is our life. This is my husband, whom before he became so ill was my very best and dearest friend ever. ALas, NOW he is very damaged, unable to be my companion in any way at all most of the time, once every few months he might be who he once was for an hour or a day, and I treasure that. I am NOT a saint, while I understand his illness etc....there are still many days I scream and cry and get frustrated, angry etc becuz he is how he is. I get lonesome, I get tired, ..whatever. Some days it works to tell myself Ah self, BUT for a little while you did have the very best friend anyone could ever have.
I do not have a link but, sometimes when I think of some of the things, I think of Kubler Ross and the stages of grief. My husband has been ill 20 years, my difficult child has been ill all her life. and even after all this time, I DO still bounce between the stages of grief.
The serenity prayer. Some might say it is overused. For me, it applies. My difficult child was a difficult child before it was easy to get a doctor to be much help-- when difficult child was a small child, it was not at all uncommon for docs and teachers and everyone around you to fel as if your child was a difficult child becuz you were not a great parent. I could not change their opinions, and I could not magically make my child be fine and well. Back then there were not as many medication choices, altho my difficult child was in a few trials for different things, different therapies etc and she was in several studies.
Which brings me to......um. sad to say these days I regret some of the ways difficult child was handled over the years....I regret some of the medications we DID try........aactually I blame some of the medications for cauesing her some irreversible harm.
Be that as it may....my husband who is only coherent once in a blue moon, he has this to say to me often (when he is coherent) when I am kicking myself.....
"you did the best you could with the knowledge and resources you had at the time, you cannot kick yourself for science not knowing how to help, or for things turning out how they do so long as you did the best you could at the time, you cannot go back and second guess"
Truth is haveing kids this ill, so many of them now out there, this is relatively NEW for parents to have kids like ours and have to struggle to have them in school etc. It was not really all that long ago children similar to ours were taken yung and institionalized and the parents did not have to figure out how to deal with coping with these kids the way people have to now. ALTHO------there were not the medications there are now.....a LOT of things have changed just in the last 30 or so years. SOme good for us and the kids, and some....maybe not so good, hard to tell. My heart was always in the right place, everything I did I did with love.
I still do.
Someone told me.....God only gives us what we can handle. I know there had to be a million times I thought to myself, oh my goodness, He gives me too much credit. Someone else said "that which does not kill us makes us stronger" Wow, I wonder if I am strong enough yet to move mountains? Except see, there is also a story about ??? um, oh I hope I get this right- um a man has a calf and he lifts that calf every single day.......every day.....and the calf, it grows, but as the calf grows, the man keeps lifting it and the mans muscles grow so he can continue to lift that calf. Um....my difficult child as a baby was ...less difficult in so many ways than she was later, BUT I was right here growing with her.....beside her......(OK I know it can be dofferent for parents who are stepparents or foster parents or adoptive parents etc.....)
God loans us these children to love them and raise them and do the best we can. He trusts them to our loveing care....He has faith we can do this.
How many times over the years did I just STOP and say whoa, Dude? can you share please? how do YOU have faith in me that I am not sure I can do this?
Over the years I took some risks, not becuz I wanted to but becuz well, becuz sometimes I just did not know quite what to do and how to do it and simply just did the very best I could.
And thats all anyone CAN do. And maybe someone else could have done it better than I did, or better than I am still doing..BUT last I checked I did not see anyone here saying hey, I will do it......nope...so I just kept on plugging along. I took some leaps of faith over the years, sometimes blind leaps------
Sure I made some mistakes, I KNOW I did. BUt.the only perfection is NOT here on Earth.
Always as my guide, I remembered I would have to look at myself in the mirror. SOmehow I did keep us fed......some of that busy time is a blur, becuz I WAS so stretched thin and exhausted for long term. My fav aunt always reminded me- God WILL provide your needs......but you must remember what you think is a need, He might not think is a need.
ANd one day I saw (and bought) a Tshirt that said "Be Patient, God is not finished with me, yet" and I decided that applied to ME and it also applies to my difficult child........
Some of us hit puberty at 8, some at 14, some at 16. My difficult child is going to be 20.......some days I get thru the day telling myself "maybe she is just a late bloomer".
For so many years I lived life waiting....I would do THIS after this occured.....etc etc...and when difficult child was so ill, there were lots of things we did not do.....waiting and waiting for difficult child to get betetr, waiting for her to DO better. waiting for husband to be better......and one day I woke up and realized, oh my goodness.....these days go by and then they are GONE. and maybe difficult child is not going to ever be better?
I lost my first husband when I was 25- diabetes. I lost my best friend in grade 5, a blood clot from a broken arm, in grade 8 my best friend was ill, she did not know, noone did, she had leukemia and passed away. In grade 10 my fav uncle shot and killed my fav aunt, and my best friend got hit by a car and died and her boyfriend got electrocuted and died at work. a couple years ago my best friend, my next fav aunt and my mom all died within a year of each other, and my son lost his eye and my husband was in ICU all at same time.
I realized life keeps on going, time keeps passing.....I cannot keep "waiting"------difficult child is a difficult child. husband is sick.....but Life keeps going, and I have to live life, and so do they. Somehow over the years we slowly began to live around the illnesses. we learned to live thru the illnesses, we learned to live in spite of the illnesses. we learned to live TO spite the illnesses, LOL. we live over and under them, too.
After I got sick, and then began to do better...I started to live life even in midst of whatever crisis was going on here.
Oh, yes, um...Shari posted a thread about rheumatoid arthritis, and I relied in there, about my own illness......
I guess bottom line, what I am TRYING to say is......
ya gotta do what ya gotta do....and yes it might take some very creative thinking. It prolly will not be at all easy....so then sing yourself the song "I never promised you a Rose Garden" Some days there will not be any options.....so you will just have to do whatever it is you CAN do about a situation. You might have a plan BUT the plan might not work all the time. YOUR plan will be unique to YOU and YOUR situation. SOmetimes you will run on autopilot, someays you will run on reflex alone. SOmetimes you will feel like you are stuck between a rock and a hard place.
Once in aawhile someone says to me "you are strong, to have done what you have done" and I say no.....I simply lived the life that was handed to me, I did what had to be done...there really were not a lot of choices or options a lot of the time. I mean what else was I gonna do? I'm really no different than anyone else. I am living my life, thats all.
You will figure it out, you will find a way.....people do.
You can read everyones replies here and that can be a stepping off place for you, and you can use all our replies tohelp yourself come up with a game plan. Best of luck. Yeah, I know, its hard.