what’s hard vs what’s easy

easy: eating an entire package of chocolate covered graham cracker cookies.

hard: feeling bad about it.

guilty

hard: telling yourself it is a good idea to get out of bed in the morning knowing that it just groundhog day all over again.

easy: remembering how much i hated groundhog day.

deja-vu

easy: convincing everyone cereal is a nutritious dinner, so are microwaved frozen taquitos.

hard: planning a decent dinner when pinterest lies to you 90% of the time about just how ‘easy and fun’ those ideas are.

time

easy: when everyone and everything in your life at the moment is going well. no one is in jail. no one requires medical attention. no one is in the principal’s office. everyone is fed. the house is even cleaned. so good, that i am personally calling the United Nations to tell them i really can fix all the problems in the world good.

hard: reality hits.

reality

easy: just give up and refer to the first easy listed in this post. you earned it. pretend life does not exist beyond your bed. pretend that you don’t have to deal with the general population seeing your children as so disabled, that they don’t get to have a say in the very basic choices in their lives. oh wait, that is their father (rude). pretend that your 18 year old, who has had months of absolute fantastic behaviors, suddenly regresses that past three weeks culminating in him head-butting you so hard in the pizza factory parking lot that you got to hear your nose cracking. i personally loved the parking lot setting, very outsiders, stay golden pony boy.

hard: getting out of bed and still walking that sexy walk every single day. so to anyone out there working the hard part, get out and get your sassy on, but first refer to the first easy listed on this post, consume, then go get the sassy on.

sassy

that’s not confrontational

you know what? the world stinks if you are considered disabled.

it gets a little bit stinkier if you are non-verbal and therefore considered voiceless.

and it gets the stinkiest when people insist you are more disabled than you are therefore holding you back from your full potential.

i was told using ‘you’ in a sentence was confrontational when describing the situation.

that’s not confrontational, what’s confrontational is the whole time i was talking to you, i was thinking you looked like gary shandling with a tan.

gary

“she will be a child her whole life.” i was told about emma and why she cannot decide whether or not she wants to go somewhere.

“even children get a choice to say no.” i countered.

“no they don’t.” i was told.

“i don’t know about you, but i do give my children quite a few choices.” i replied.

those of you who have been reading this blog for the long haul know there have been ups and downs with emma. know there have been grieving processes and celebratory jumps. yesterday i found myself grieving a little more.

when emma turned 18, i genuinely, truly, sincerely, thought she would have a little more voice. a little more freedom, and little more rights.

guess what?

she doesn’t.

it does not matter if she does not want to go. it does not matter if we have to force her out of the car. she should have a choice not to go. one choice in the mid-week visit is all that was requested.

being non-verbal does not make you silent, and that is the biggest travesty of all.

it does not matter. her voice does not matter.

and that, gentle readers, makes me confrontational.

angry-eyes

luckily i packed my angry eyes.

your mom walked on the moon

this weekend, walking on the moon seemed like child’s play.

the berlin wall coming down was like taking candy from a baby.

candy

living in space for 1 year was like having a maid, cook, manicurist, and pedicurist waiting on you all day, every day.

the manny/mayweather fight was like watching an episode of barney.

manny

this weekend i measured pancakes with a ruler, then figured out the measuring cup to use to make 4″ pancakes.

i figured out 3 oz of hash browns into measuring cup measurements.

i figured out 55 goldfish is 1/2 cup.

27 cheetos puffs are 3 servings.

i counted gol’ darn chips.

individually.

this weekend, during my silent freak-out all night long, i was fairly certain i put benjamin in a diabetic coma because he had a low blood sugar reading at bed time.

then he slept in till 9:30 the next morning, solidifying my freak out.

i am finishing up legal guardianship for emma, dance for emma, dance for rosy, end of school year projects for ella, emotional break down for rosy, track practice, softball practice, track meet/softball tournament on the same day, and keats is still looking for a job.

HIRE HIM!

this weekend i felt like this:

cat

but by golly, there is not a carb that has not been counted.

atkins diet never looked so appealing.

labeling, it’s not just for cans of soup.

i have children that have disabilities. so what? i am one of millions.

i have children who are labeled because of these disabilities. that does not get to go into the category of ‘so what.’ they are not a product.

they are rather unique. summer-fun-091 they have to be, this is an actual picture of the hubby.

i feel like i do a good job treating them as individuals, not labeling them or boxing them into areas that i feel they will do the best because of their disabilities.

this week, my son was hospitalized with onset type 1 diabetes. we were fortunate to catch this very early as benjamin is what i call a ‘free range urinator.’ meaning, he does not feel the overwhelming need to make sure all urine is in the toilet bowl. because of the free spirited peeing, i was able to notice his urine was becoming increasingly like cleaning up sugar water.

as we were heading over to the emergency room, my first thought was “there is no way we are going to be able to do this, he will not be able to handle the shots, he will have multiple melt downs, his life just got so much harder.”

basically, i pictured this the rest of our lives, multiple times a day. wwe after taking 5 people to hold him down just to do a finger prick, i felt my psychic abilities were spot on peering into the future for benjamin. but then he surprised us all, with the help of some valium to start.

benjamin is a rock star about taking shots, he astounded us all.

he even let his blood be drawn, and that is basically like Jesus raising the dead.

i had thought, judged, labeled, and had him wrapped for delivery before we had even started. gift i’m proud of that kid; proud that he can still show me what an idiot i can still be.

my 16 year old is cooler than yours

why am i such a braggart you ask? 

let me expound on the many ways my kid is cooler than yours.

005

1) he walks around the lake holding his pants up like a girl and makes it look manly.

2) when given the choice of an entire fabric store to pick out material for his pillow case he is making in school, he picks out glitter spiders and halloween pumpkins secure in his manliness to properly celebrate the halloween holiday.

fabric

3) he loves romantic songs and disney cross-overs and makes it look manly, but, really hates it when it is pointed out to him that the music is pretty.

4) his horoscope says ‘make it your day and do what you want.’ he doesn’t need a horoscope to tell him that, that’s his everyday life.

5) he requested to go to seminary at school, then realized he hates seminary in about 10 minutes and actually used very manly suggestions to get out of it. unfortunately, those manly suggestions required the physical removal from said spiritual education.

6) he gives kisses that are manly enough to make you nervous every time as one never knows when that kiss will turn into a non-kiss.

078

and that, gently reader, is why others weep with disappointment to not inhabit the world of ben.

 

 

what the queen said yesterday

we heard ‘poopie’

we heard ‘movie’

we heard ‘booby’

of course, these all sounded all the same and were are guessing.

then i heard ‘mommy.’

then i heard ‘mommy’ again.

then she said it again and again.

to the best of my recollection, that is the first time i have heard the queen say mommy.

sure beats poopie and barely edged out booby.

 

 

a cold splash of water in the face

today i read this article in the paper.

http://www.deseretnews.com/article/765602650/Passing-love-on-Families-cope-with-continuing-care.html?pg=4

it made me realize that i am not in this for a quick race, i am in for the marathon.

sometimes it is easy to live in the moment, think ‘when it is our time.’ we will travel.

our time will always have two extra travelers.

yes, we want them as independent as possible.

yes, we want them to always follow their dreams, for they do have dreams if you ask me, and make sure that if anything happens to us, queen and bear have the money needed to not be a financial burden on their siblings.

i know all this. i just don’t think about it; but seeing an 83- year-old father still caring for his 51-year-old daughter full-time makes me remember that we have a long road ahead of us.

then, while on a family outing to utah lake this evening, chicka said “bear looks like an alligator lying in the water.” at which point bear stands up with a scream looking everywhere for an alligator and i realize it will be a long marathong, but man, it is going to be a funny one.

although he never did find an alligator, he did say he saw a lobster.

i have my doubts.