I'm taking back my life. I'm getting rid of all the negative crap (and PEOPLE) in it.
I've been working my *** off lately. I've been trying to figure out a way to get the CNA training without having to pay $$ we just don't have right now.
I'm tired of getting screwed all the time. I'm tired of being the ONLY one who gives a **** about myself when i care more about others well-being then my OWN. That is SO done.
Jim is still doing overnights.
oh wait, i should probably mention he's no longer the Manager at the liquor store. That all changed the end of Nov. He's a resident counseler ATM. It's too much personal info and crap to even put in everything that went down since then. It would literally take several hours to type everything out.
*J* is doing awesome in school. He's made so much progress!
*M* is doing awesome in school too.
They are both supposed to be in going into the summer school program this yr.
Last edited by Sapphire Sunsets; 02-22-2008 at 12:10 AM.
~ Sara -
~ DH - Jim -
~ Zachary - 4/19/95 ~ stillborn @ 33 wks
~ *J* - 16yr old
~ *M* 11yr old
A Wanted Child
A NEW RECOMMENDATION CALLS FOR PRENATAL DOWN SYNDROME SCREENING FOR ALL PREGNANT WOMEN - THE CHANGE HAS ONE MOTHER TOUCHED BY AUTISM REFLECTING ON HER CHOICE.
By SUSAN SENATOR | April 8, 2007
"It is part of being human to wonder how our lives could have been different, if only this or that had not happened. As the mother of a fairly severely autistic 17-year-old, I have certainly wondered what my life would have been like without him.
Nat has not been an easy child to raise. At 3, he seemed completely withdrawn, in his own world, mesmerized by twirling string and water droplets. At 7, he stopped sleeping the night, waking up at 2 a.m. or thereabouts with loud, maniacal laughter. At 10, he was expelled from a special education program in a nearby town because he had become aggressive and unpredictable.
Knowing what I have gone through, people sometimes say to me, “Oh, he’s lucky to have you.” These well-meaning folks probably don’t realize how I hear this: that there is something essentially unlovable about Nat. What they don’t understand is that difficult does not equal unlovable.
So when I learned that the American College of Obstetricians and Gynecologists in January had changed its recommendations for prenatal screening for Down syndrome from pregnant women 35 and older to all pregnant women, I found myself worrying about how many otherwise “lucky” children would now never see the light of day. And what might I – an abortion-rights supporter for so long – have done had there been such a screening for autism, before I knew Nat? Now I shudder to think of it. But given that so much of what you hear in the media involves stories of struggle or horrors like the stabbing at Lincoln-Sudbury Regional High School, rather than any of the positive potential of autistic people, autism may be forever tied to tragedy. I fear what many people might do with information from an autism screening, if it existed.
Certainly many people choose not to abort a fetus with a known disability and instead prepare themselves for this child’s needs. Former Harvard academic Martha Beck wrote about her choice not to terminate her fetus with Down syndrome in the book Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic. People like Beck are not saints. However, they do seem to possess a certain basic humility – an understanding that life is not always what we expected it to be.
Not getting the life we signed on for is something that privileged, educated, technologically savvy Americans are ill-prepared for. It is intolerable, even incomprehensible, that we have to deal with something we do not want, from our appearances to our jobs to our child’s future. With enough money and time, you can change many things. You don’t like your body? Get some surgery. You want your kid to go Ivy League? Send him to prep school. And if your pregnancy screens show disability, you don’t have to suffer. And, you tell yourself, neither will this child.
When you give birth to a child with a disability, you learn – breathlessly and relentlessly – how life can be beyond your control. Things become even more complicated as the children grow into adults. Little can compare with the difficulty of living with a very autistic pubescent boy. Yet my husband and I managed. We taught Nat about privacy, and he even came up with his own term for masturbation: “making privacy”; we were so proud of him for that. Then there were the other achievements, attempted again and again, such as when he finally made a real friend, at the age of 15, or recently learned how to play on a basketball team.
Today, Nat presents a very different profile from his difficult childhood one, that of a young man who can control his impulses, attend school, and hold a job. Nat is not Harvard-bound. But he is a sweet soul and a real part of the family. Though difficult to understand, talk to, or even be around, he has taught us many times over how to be happy with even tiny triumphs. If not for Nat, I might have never learned just how hard life can be and how strong I really am.
I guess you could say I am lucky to have him."
It's strange to realize how strong of a person i really am.
We had to take *M* up to the ER lastnight because of a fever we couldn't keep under control. We walked in and he projectile vomited all over me. *ick* .
I've given up on Macy's. It's like one ordeal after another with them.
Fool me once, Shame on you.
Fool me twice, shame on me.
You don't get any third tries.
First, it was calling me 15 mins after i got home from helping them with inventory and telling me they had no hours available, even though i WAS scheduled to work the next 3 days.
I went to JCPenney's cause well, you DO what you have to do when you have NO other money coming in.
Then, Macy's calls me and tells me they have hours and want me to come back. Fine, even though they are more strict about things.
Last Saturday i talked to MY manager and told her i needed to leave Tues and Wend by 10pm. Even though they wanted everyone to stay till 10:30pm to help get the store back in order after the "1 day sale" She tells me it's fine. Tuesday night i try to leave and one of the other managers and i go fight about it in front of the doors. She would not let me leave. And how exactly is it MY ****ing fault that Karen didn't tell **** to anyone? Anyways. I walk back to the section i was in and find the manager of OUR floor. She says there's nothing she can do because *T* is above her. I got so fed up at that point that i walked away saying "screw this". I walk back to the doors and Tami is still there. "Oh, you were only scheduled till 10pm, you can leave.". Well, thanks. Now, that you've taken 15-20mins of the TIME i need to get Jim to work on time.
I was scheduled on Friday. Mysteryislly(sp?) , those hours and the hours i was supposed to work the next 2 wks have disapeared into thin air and shown up on the "OPEN HOURS" schedule. Coincidence? Nope.
I don't need the stress of them pulling THIS ****. Either figure out what the hell is going on with my hours and tell me after you know or just **** it all.
I don't know what the hell to do about Macy's.
Yesterday, Karen called me. There was some *glitch* in the system and it booted my hours into the *OPEN* section. But, "we still want you" I'm going to stay with them ONLY because i have zilch lined up right now. I have a bunch of applications out and am waiting to hear from other people. $7.50/hr just ain't worth it anymore.
Jim's job was supposed to be going to days (7am-3pm, Mon-Fri) next wk. That got put on hold another MONTH. This is going to keep screwing with my schedule. The kids BARELY see him. Hell, i barely see him. I sleep for **** when he's not home. Plus, the kids have vacation ALL next wk. Wanna guess who gets to keep them entertained and QUIET all wk? That would be be. Hopefully, the weather will be nice enough to go outside. *knock on wood*.
Zachary's 12th Angel Annvi is coming up next wk. I feel pretty non-emotional about it right now. Easter wasn't easy. It sucked being in the ER with *M* till 1am Easter morning, then when we got home i was left to stare right at Zachary's memorial shelf near our TV. I walked over and kissed the container that had held his ashes and wished him a Happy Easter.
This time of year just sucks for me.
I really hope it's nice thursday so we can do the balloon release. I have to work that night *sigh*.
I feel so unsure of myself...like i don't know how to do this even though it's been 12 yrs. I just want for this yr to be easy on me. I don't think i'd be able to handle anything major happening.
~ Sara -
~ DH - Jim -
~ Zachary - 4/19/95 ~ stillborn @ 33 wks
~ *J* - 16yr old
~ *M* 11yr old
Happy 12th Birthday sweet angel Zachary.
I miss you so...
I did my *routine* of looking through all the paperwork and pic's. Jim was an *** about that. Yeah, i'm gonna make it harder on myself. I don't think so.
I wonder what you would look like. I wonder what color your eyes would be. I wonder if your hair would still be curly. How i wish i had gotten a lock of it. I would what your personality would be like.
Your little brothers are sound asleep. Your step-daddy is at work. I haven't heard from your father in months, i'm going to email him shortly to call me.
We'll see you on Saturday. We are doing the balloon release from Cape Cod. Look for them and the card we're sending.
We didn't do the balloon release this wkend.
*M* has been sick again. He's been coming down with everything. First, it was coming down with pnemunia(sp?) ....scary as HELL! I had just driven Jim to work and was ready to go to bed. After midnight *M* starts screaming that his chest hurts. I had no clue what was going on. I pick him up and bring him into my room. He's burning up. I take his temp. Not alot of light around i looked at and thought it couldn't be right. I re-took it. Again, not alot of light. It was 105.2 then. It was 105.4 the first time. right? Holy crap! I was doing over 80 going down rt 9 with him in the car screaming about his chest. We were there a total of 5 hrs and it was *slight* pnemunia(sp?) in the left side of his chest.
Second (about a wk later) , he came down with croup...bad. Steam in the bathroom didn't help. We took him outside in the cold and stood there while he gasped for air. That sucked.
Third, this was the day/night before Easter. *J* was already sick with a cold and fever. *M* was doing good up till that afternoon. He came down with the fever and we started doing the ibu and tyn switching every 4 hrs. Well, we'd get the fever down a little then it'd spike back up. He was eating and drinking fine. Still using the potty. But, i knew from other times that ANYtime you can't keep a fever under control with med's they have to been seen ASAP. As we were driving to the ER we had to stop and get gas. Jim gets out and pumps it. He goes in to use the ATM. It's cost flipping $5 to use the ER valet. Meanwhile, sitting in the back with *M* i can tell he's gonna puke. He does this burp thing RIGHT before he pukes every time. I grabbed a plastic bag and got some of it with that. Anyways, long story short. He puked all over me as we walked into the ER and he made that burp noise. He had strep.
Now, Friday night we went out. We get home @ 1am and my mom tells us that *M* woke up about 1 hr after we had left crying and complaining about his ear. Well, now we are on Sunday(well, tech monday now) and he still has the fever that ONLY goes up at night and an explosion of ear wax. My kids both have very waxy ears. There is no clear fluid coming out or blood. He sleeps on the ear the whole night!
Life can't be simple?
Jim needs to start his day hours. As soon as he does that i can do the CNA/HHA training at the red cross. It will still cost money but, i'm going to try to get some help with it or make a payment plan with them. It's Tues-Thurs ~ 4:30pm-9:30pm...BUT (and HUGE BUT).....when they do the clinicial wks....it's 3:30pm-9:30pm. We would need to find someone to watch *J* and *M* till Jim got out. If he gets out at 3pm....he wouldn't even make *J*'s bus.
I work so hard to contain my hurt....but what the hell,
I hate feeling miserable like this. I've been off my med's now for 2 wks? or has it been 3 wks? Not having health insurance and having just "enough" to get by and pay some bills. We still owe the ****ing car insurance! Jim totaled "the grape" (his car). 2 cars totaled in 2 yrs. *YIKES*! Anyways. Now, we are down to one car again. The insurance was a thing that shouldn't have happened! We got back on masshealth in late Dec. It was a few days after christmas and i took him up to the ER. When i called and talked to someone they told me they send the "yearly eval" thing out 2 months before it's due. They resent me one. Thank GOD!
It's time i take care of me.
I'm going to finish the memorial project if it kills me.
I'm going to check out a school for medical assisting on Friday. Can't wait! The having to deal with blood/needles issue....i don't know....
My phones are screwed. I can call out, it won't let calls in.
Whenever Jim starts doing the day shift...i can figure something out for work and school. I've been looking at cars online. I don't know. *S* and *D* have a mini-van with the pull down screen and DVD player they are thinking of replacing. We told them to keep us in mind when they are ready to sell it. I would LOVE that van!
I'm tired. I have such a long wk next wk. Though....i'm dying cause i get to work in the jewelry dept one day!!!! If i can't be a nurse i would love to be a jeweler.
Yet again, my point is proved.
Just why should i give a crap about anyone else, when no one gives a crap about me? How the hell do you undo that nurturing(sp?) thing? Cause how ever it's done....i need to learn it. I need to INSTILL this power of ME ME ME attitude. I have to care about me, i mean really it's been proved time and again that no one else really does.
Maybe this is really the end of my time on this site. I think it needs to be at this point. I still need to be able to journal though. I don't know why or how....but it helps in some way.
We talked to *S* and *D* last night....
They will be ready to sell the van within a MONTH!
Come'on let THIS be the start of some good luck again!!!
We need to figure out how much it's worth and how much the repairs (all sorts of them) would cost. I'm going try to find a pic of it on kbb.com
I'm going to put off going to school again. This is what the 3rd or 4th time?
It makes MUCH more sense to just wait till *M* is in full day kindy (Sept 200. Plus, instead of just doing the CNA or MA class i can do the LPN one (HIGHER demand for right now). Not to mention, i'd feel safer there then at some class in Worc.