Monday, April 27, 2009

Just when you think you're out...

They pull you back in!
So goes the saga of my leaving the nighshift at the nursing home to go back to full-time at my day job in pediatrics. I was told it would be so easy. No problem. You wanna come back, sure, according to us you never left. Heck you still are on the payroll part time anyway, we'll just work up your schedule, give us a week....
Sigh..... If only it played out like that.
On the other side...."I am leaving, I'll be done by the end of the week. I cannot work here under these conditions and do it safely." And then.."Well your coworker will be out for another full week, can you stay just one more week."
And so goes the saga of not enough hours on the dayshift and too many on the nightshift....
My solace...I have daytime appts all next week :) And I have been promised day shift by the middle of the month.
So I will continue to blog in a sleep deprived daze wondering how the career that I thought would be so wonderful and fulfilling finds me wishing I could live on the salary of a burger-flipper. "Would you like cheese on that?"

Separation anXiety

Well April Vacation is over and today the little blue bus came for Jacob while I was still away at work on night shift (three days left and counting). Apparently Jim put him on the bus and there were big tears and drama. Its two hours into the school day and no calls home but I can only think my sleep will be interrupted by noon so I have yet to attempt it. Jim is off on a job interview and I wish him the very best even though it means big changes for our routine and I can only hope Jake will tolerate the change. He's done so well with all of our changes lately, a new house, a new school, and now "dah-di" will be going off to work. Here's to hoping the "dah-di" will be here in the morning and the "Momma" can find someone in the afternoon. Childcare for special needs children is few and far between. There are only two dedicated special needs child care facilities that I have come across in our state and they are both more than 30 minutes away.
As a pediatric private duty nurse you would think I could find a good respite provider..but no.

Someday... maybe I will start a special needs before and after school program or even a daycare. Then I can tell tales about the "old days" when children were discriminated against because people did not understand their behavior or were thought of as a liability.

Someday ...parents of special needs children will no longer have to give up their jobs and financial stability and their careers because they can't find anyone to assist them in caring for their children.

Someday... the state and government will realize that it is far cheaper to assist in the care of a group of children than it is to supply parents with subsidies to stay home, subsidies that no one could comfortably live on.

Someday... parents won't be working opposite shifts at work and opposite shifts at home caring for their children in an exhausting tag team match because there will be a place they can turn that is safe and reliable, understanding, and trustworthy. Until that day....parents will continue to do the amazing.

Friday, April 24, 2009

Small Wonders

Today I got an IM from my fiance that my son Jake who has been diagnosed as "nonverbal" said "more daddy" clear as a bell. He apparently wanted my fiance to replay the credits of the movie "The Incredibles". For some reason he loves the credits.

This may seem like no big deal to some but for Jake this is huge! When Jake was 18months he had an appointment with a pediatric developmental neurologist who after examining Jake sat down with his father and me and actually she actually said, "I'm sorry for your loss. This will be a grieving process for you as you come to understand the loss of a "normal" child and you accept that your child will be profoundly mentally retarded and live in an almost vegetative state and require life-long care!"

I looked at the doctor and said as my son was tearing up her waiting room and running all about, 'Thanks for your opinion but it appears my son is very much alive and having been told that his older brother was not going to survive to be born and then would never speak and is now a 10 yr old who loves sports, has no medical issues and will never shut up, I will have to take your opinion as just that."

I left her office thinking that I will grieve for the fact that people will view my son this way but I will never be sad when I look at this child and I will never give up believing that there is something beneath the surface in my son that cannot be examined." There are sparks of genius seen in my son when he can problem solve to meet his needs. When he sneaks quietly up the hallway looking to see if he will be caught stealing a snack from the kitchen by attempting to sneak the peanut butter, the knife and the bread out in multiple trips and hides them in his room, I know, there is much more going on beneath the surface. Just because it is hidden does not mean it does not exist. Just because someone is silent does not mean they cannot be heard.

So today when he speaks even briefly as clear as a bell I want to shout as loud as I can.... "shove it up your *** medical science! Grieve this! My baby has something to say and knows exactly what he wants!"

Off to work!

Going to work at the job I actually love today. Will attempt to post from the laptop since the cell phone is dead.

Thursday, April 23, 2009

A new intervention

Today we take Jake to Woburn to get his new orthotics. The wonderful therapist at IAM orthotics and prosthetics was able to fit Jake in just minutes with some nifty foam rather than casting his feet. Today we'll get his orthotic inserts for his sneakers to help with his pronation of his ankles and the dropping of his arches. Jake has the prader willi phenotype of Fragile X which has caused him to be overweight. Seriously he doubled his weight once that part of the syndrome kicked in. So the added weight plus his perpetual bouncing has really not helped his feet. I am hoping these help to correct it. A new house with a big yard and a pool will hopefully help the weight gain. Orally stimulating chew toys have helped his obsession with eating. I can't help but think that for the last two years in our old apartment he was like veal! Truly kept in a small space with no way to work off the food he is drawn to. Having such intense social anxiety he wasn't able to enjoy activities at parks or playgrounds. Now that we have conquered the fear of uneven walking surfaces and can even walk on grass barefoot I have big hopes that this spring and summer my little chubba bubba will slim down :)


I'm learning to twit. Is that an oxymoron?

Frag X Webring

Fragile X Webring
Prev. Random Next
Home Join

Wednesday, April 22, 2009

Taking care of me...

In response to my previous post I have decided to stop my whining and take care of myself!! I can't expect anyone else to care about me more than I care about myself right! Sooo....I have decided that the best way to take care of myself is to tell my current employer to stick it!

Don't panic the only working member of my family I am not just going to go jobless! Holy hell that would be nuts! I'm just going back to the job I had full time before I went temporarily insane and went part time there to go full time at a job who could care less about me. Sometimes the grass is not always greener and sometimes leaving a job you love to make more time for your ex husband (who you anything but love)'s B******t is not the best move. Seriously what was I thinking, work night shift to spend time in court with that fool????

So here I sit contemplating life...deciding to take care of myself and go back to a less stressful job, with better health benefits...and somewhat less cash because well, they were my second job, which will now be nonexistent. My first husband found himself laid off last second husband is on disability because he really is certifiable..not by my say so but because the federal government has deemed him nuts..and my wonderful fiance who left his job to care for my son has found that a budget freeze in this wonderful economy of ours prevents him from working at his previous job. And still I think I need to take care of myself...spend time with my family..and live with less.

So we have crappy clothes, we stay in rather than go out, we watch from the sidelines as friends and family go on marvelous vacations..and we stay home and live happily ever after with smaller tales to tell, fewer miles on our tires and bigger smiles on our faces.

Taking care of those who take care of others

Ok, the other day I was convinced to work midnight until noon due to someone's scheduling mix up. Now everyone makes mistakes and I am willing to help out my coworkers when the need arises if I can. I had been fighting a cold and with April vacation I have had less than adequate sleep so a 12 to 12 shift was not ideal. 11:30am I could not hold up my head and could barely see the medication I was giving. Dangerous right! So...I go home and stayed awake so I could see my children....because it was my birthday and that's what makes me happy on my birthday. So now I am sick with lymph nodes the size of golf balls under my chin, a fever and coughing blood. But can I take a day of to nurse myself? No. Can I go to a doctor to get medication for myself? No. Why in the world not you ask? Well because the skinflint that owns the company I work for doesn't give sick time or health benefits to the staff of his facility until they have been there 90days and I am at 80 days! So I spend my days caring for those with pneumonia and holding the hands of my dying patients but can't even get a cheap discount antibiotics because I cannot afford to privately pay for the ten minute appt with my doctor to get a generic antibiotic! Why not give those who care for others the resources to help them stay strong and healthy enough to continue to care for others???What a system. Where is universal health care. God I would take a pay cut as a nurse to know I wouldn't work shorthanded or work sick ever again!

Monday, April 20, 2009

Too nice to blog

Well Spring has sprung and with the warm weather I just couldn't be bothered to sit and blog. Yesterday after working all night I still could not come home and sleep because it was GORGEOUS outside. Plants are blooming out in the yard and being our first spring here there is just so much to discover. So much is buried on the debris of last fall that I have to dig around and see what is popping up underneath. So far I have found daffodils and day lillies out by the stonewall with the row of forsythia a bright gold behind it and what looks to be periwinkle along the back fence. There are various rose vines here and there. Trees are budding and blooming everywhere. It took some pruning to get a few of the trees and shrubs to look respectable. They had begun to wander and looked unruly after a year of no one keeping them under rule. I felt the sun baking my skin just slightly and it felt so warm and toasty and left me with a nice pink glow. Kids are on vacation this week and I plan to recruit them like miniature park rangers to help with the rest of the spring clean up outside :)

Thursday, April 16, 2009

The Computer Age

All throughout history there are stories of the older generation not understanding the younger generation. In the sixties it was rock and roll that baffled and confused the elders. What was this noise, this rebellious sound that echoed like a cry of freedom that streamed from every muscle -car window and high school gymnasium? Today the stange new language is quieter but no less foreign. Instead of screaming, "turn that racket down" parents today seem to be saying "turn that computer off!". Our children have become glazed over like zombies living in a virtual world, playing games where they live out virtual lives and communicating with people they have never seen and having virtual relationships. My teenage son speaks to me in a language that I cannot decode. OMG, LOL, etc etc. He speaks not only the language of text messaging but the language of his obsession the World of Warcraft this foreign chatter invades our dinner table conversation. "Hey Mom, I respecked today!" "My boomkin is beast!" "My level 87 tank was nerfed!" What in the world? How could I possible connect with this creature who lives in a world entirely separate from me. Tonight after many days of the kids asking if they could roast marshmallows out in the fire pit I agreed. The spring zephyrs all week have made that impossible until today. I figured they would be excited. Finally some time to hang out on my only night off after a beautiful spring day. A clear cool spring evening to go out and sit by the fire. Not so! I get "Hey Mom can we do the fire now?" At 3:30pm? Why I ask. The response, "I am meeting my guild in a dungeon at 7pm and I can't be late!" The virutal world apparently has deadlines. It has schedules and time lines and appointments. Now after living many years in the real world I can say that if I was choosing to escape into a virtual fantasy world night after night it would not be one with deadlines, schedules and demands upon my precious spare time. Nor would it take me from the joy of spending what few free moments I have with the family I work so hard for. So in an effort to connect with my child, I have disconnected the keyboard.

Wednesday, April 15, 2009

Splish Splash

Well today the warm weather inspired me to attempt to fix our hot tub. I know wah wah poor girl with a hot tub. We moved into our house that had been vacant for about a year in February when the entire yard, hot tub and pool were covered in about two feet of snow! We were told by the realtor it needed to have the heater replaced and were given the part by the owner. Now most folks would have called the nearest spa repair place....not us. We're broke from the move and well as nice as it is to have a hot tub, its not nice to pay to fix it. We're intelligent people I thought. We can do this. How hard could it be. Hmmmm, 1. out old heating element, 2. enter new heating element, 3.reconnect. 4.Find power source, 5.fill tub turn on. And then the moment we've all been waiting for, the whoosh of the jets that would signal that sweet massaging relief would be close at hand. And then it happened... up from the ground like a geyser we have a new fountain on our deck. Yep fountain, the kind you see at Disney world with the ten foot shooting arcs of water spraying in every direction. Maybe I should just figure out a way to time it to music and strobe lights and go with it. It will be like a giant water feature on our deck. One small little "o ring" seal turned a beautiful spa into the worlds biggest sprinkler. Note to self...always call a professional because sometimes a repair guy with plumbers crack is a genius.

Tuesday, April 14, 2009

Its the Little Things

Life is good! After a 10hr overnight shift full of chaos and pending death. (I'm a nurse so its not an exaggeration!) I drag my tired bod home discouraged, exhausted and entirely wanting for nothing more than my pillow and I walk in the door to find my dog ecstatic to see me and my man painting the living room at 9:30am after getting all the kids off to school on his own just because he knows how happy it will make me ;) Unconditional love of a man and a dog. It's the little things that make it worthwhile. A little breakfast, a little Melatonin, and off to my lair for a much needed rest.

Monday, April 13, 2009

Deja Who?

Working the overnight shift can be disorienting at best. Today I received a call at work from home stating, "Hey, Umm, the kids have school today. I thought they were on vacation. One of the buses just went by."
Ok, I thought so my daughter missed the bus, but my son's was yet to arrive. Great I thought! Working nights, I sleep like some vampire, my life depends on the bus arriving, the children leaving and silence descending upon my domicile. So needless to say school vacations are not kind to my slumber. So two kids out of the house, one who attends in another district still on vaca, one homeschooled who will whine not to do his work since there is still one at home to district him. Thankfully the two at home are as nocturnal as am I staying up all night to attend to their addiction to the soul stealing game of World of Warcraft. I am safe, there will be silence, and I can awake to the sound of the door slamming as my daughter's bus arrives and the sun streaming in the bedroom window through the layers of fabric draped upon them to block the light from my lair.
But no! Not today. The day does not go as planned. I awake a half hour before my daughter slams the door, to find my better half still missing. The two teen night raiders are just rousing themselves to the shower after waking at 1pm! He left six hours ago I think. No note! There's always a note! No indication of his plans to return. Our only working vehicle missing from its oil stained spot in our driveway. I think of the past week and the times when he has had trouble breathing and chest pain and think "Dear God, what if he dropped dead at the Walmart?" My better half being a large (and by this I mean huge) statured man. I picture the manager getting one of those scooter things and attempting to scrape him from the cold beige tile. Then he calls for backup! The forklift arrives and they carry him barely breathing to the customer service desk and desperately search for the AED. They ask what they can do to make him comfortable and he calls for some Mt.Dew and is revived! Dew runs through his veins like lightening and he is recharged, renewed and home to meet the bus! This scenario plays through my head as I dial his cell and hear him answer and say "settle down I'm around the corner . I was home, I even came in and spoke to you, you answered me. What did you think happened to me?" I blush and remember the previous dream sequence and snicker. "Oh nothing, I thought you'd been out all day and I was glad I woke on my own to meet the bus in case you didn't make it back" I say.

Eggstra Special

Hunting eggs Easter Sunday with Jake was Eggstra Special. Of course it wouldn't be Easter in New England if it were not freezing cold with whipping wind and a yard that looks like a pro football game occurred during a down pour just moments ago. It also wouldn't be April without the springtime colds and giant gobbs of green boogers that accompany them. So after much nose wiping, and dressing Jake in what appeared to be Eskimo gear we head out to search for the elusive plastic egg filled with goldfish crackers. Yes thats right crackers! Jake being autistic has his idea of delicious and sadly it does not include chocolate, or ice cream or any of the other tasty treasures that make his mother's hips so comfortably soft. After witnessing the contents of the first found egg Jake's eyes lit up. Could it be that some great being descended upon the front yard and deposited my life sustaining food choice??? Each egg found after that was pure nirvana with the ever nonverbal Jake mustering up a "Wooooooooooow!" Of course not trusting that the universe would be consistent Jake opening each and every subsequent egg to be sure the contents would be the same. This continued until the green goo eminated from his nose reached his chin and he was sufficiently shivering. And with that a basket full of opened eggs, a heart full of pure joy, and a mouth full of crackers, Jake's egg hunt was complete.