I often get asked a question that really riles me up...
Do you work? Or the government offices version... Do you work outside the home?
And then there are people like my cousin Rossi, who assume that since I don't have a "job" that I should be able to do things for them at a moments notice. Like last year when she got mad at me because I would not pick up her son after school every day, and keep him for her for a few hours. (And even though I love the little heathen, he reminds me of some twisted combination of 'Dennis the menace' and 'Chucky'.) "After all, you don't work, and it would give you a little extra money..."
OK... First of all... Extra money? What the heck is that? Secondly... People that seriously ask if I work need to be immediately punched in the nose!
Lets start with the basics.
I have to keep in my memory at all times, Samantha's medications, allergies, doctors names, and surgical history. Her medication list includes, but is not limited to: Keppra, Klonopin, Nootrapil, BiCytra, Miralax, and Diastat. We may be adding one more when the doctor calls me back today. I have to remember to call in refills on all of her medications AND remember to go to the pharmacy to pick them up. And they all run out at different times, so I am at the pharmacy for one thing or another at least three times a week. Samantha is allergic to Lamictal, Rocephen, and on occasion oxygen. I have to pick up my 40 pound, 3 1/2 foot tall six year old and carry her to the toilet every two hours because she doesn't walk yet. I then have to sit with her while she goes to the bathroom, then pick her up with one hand, wipe and flush with the other, then I have to lift her and carry her back down the hallway to get her re-dressed. Her medicine has to be crushed, mixed and given through her g button three times a day. If I feed her table food by mouth, that takes at least thirty minutes of preparation and feeding time. We feed her four times a day at least. She has to spend at least thirty minutes a day in her gait trainer trying to learn to walk. She needs to have a bath every other day, goes to bed at ten every night, and can't sleep without her fuzzy cover.
I have to remember that Auron only has one kidney, and that he pukes up the two most common antibiotic used for kidney infections. His favorite bedtime toy is an ugly yellow giraffe that is older than me. He needs a bath every three days, but any more than that and his excema acts up so bad his skin looks like it will split. I have to try to find time to do the dishes, laundry, and vacuum the living room floor. The kids spend a lot of time in the floor, and pick up EVERYTHING!
I have to feed the cat, feed the fish, clean out the litter box, and remember countless appointments. None of this even includes the things I have to remember to do for me! When I do get the chance to leave the house things get even more complicated. I haven't even had the time to paint my toenails in over a year! And I am currently typing this post with a sick wiggling baby in my lap!
I feel like I can compare my self to a circus clown, juggling 40 angry hamsters while riding a unicycle, backwards, while wearing stilts!
Do I work? HA!
4 comments:
you are ther hardest worker i know and the strongest mom i know so when you are asked if yuo wrok the answer is YES you work and you are a very strong and loving worker
Sol - I welcome all questions about Samantha or her disability! No food alergies that we know of yet, just medications. And you are so right about the a$$ part! :) I guess its lucky for me I have plenty to work off... LOL :)
I think 40 angry hamsters is about right...o_0 (I own hamsters, one of which is angry 80% of the time, and that's a scary thought to me) You are impressive, and those who don't get it can bite me. (I say that alot)
Why was your son's kidney removed? I was born with an ectopic ureter, which they knew about when I was born but then missed it on the checks after I was born. The result was my kidney almost popped because it wasn't draining right, and no doctors believed my mother that something was wrong. They managed to save my kidney, but I get alot of infections... I know they're coming before they show up on tests, now. Does he throw up cipro? I did, but I had to get used to it... I became resistent to alot of the other meds.
I'm up north, so I got to go to Boston childrens hospital, and got one of the best doctors around... I still don't know how my parents paid for it, they had no money... my urologist now was actually trained by the doctor who did my operation.
(I'm going to just keep ranting, you don't have to read it) I don't trust medical ppl though... all the doctors who said I wasn't sick, all the doctors now who insist there's nothing wrong... my urologist is good, she listens, but her nursing staff is crap. They did a test for me while my doctor was away, and said I wasn't sick. I had clots of blood in my urine, and I was in severe pain. I got my normal doctor to redo the tests the next day, and it said that I was very sick. just some examples. ok, I'm done ranting, thanks for reading
Starry - LOL! the short version is: They thought he had kidney cancer... they were wrong... I have trouble trusting medical people too. The doctors around here are crappy. I tell people to bite me lots too!
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