All Fired UP--a rant.

Ann Coulter has shown herself to be the pathetic, heartless, insecure bully she is by once again attacking one of the most vulnerable groups of people of society while 'supporting' her choice of President.

For those of you who don't know who Ann Coulter is, google her. I will not waste one second of my time explaining it.  I will, however spend many, many, many seconds of my time explaining why I hate the word 'Retard', especially when it is used to attempt to embarass or denigrate someone.

I am the lucky mom to an incredible kid who is not retarded.  I don't even know what that word means.  I know what it has come to mean in society; someone with intellectual disabilities, physical disabilities, cognitive impairments, learning disabilities.  Someone who is processes words and concepts slower than most.  Any person who makes a 'normal' person (of poor character) feel uncomfortable.

My son has Cerebral Palsy, is a wheelchair user, non-verbal, has to fight with his body every minute of every day to try to do the simplest tasks.  He is also the bravest person I know.  He overcomes more in a day than we do in a year, and still loves life.  Some people might look at him, his posture, his drool, his sounds, and his inability to do things like others and think he is 'retarded'.  I ask those people to specify which of those qualities make him 'retarded'.  My answer: none.  not one.

People who use the word 'retard' or 'retarded' are saying that when someone acts stupid, silly, incorrectly, or embarasses themselves, they are acting the same as people with intellectual/physical/cognitive impairments.  I am assuming this is what they mean, from the context they use it.  When I call people out for using that word, they have said to me "I don't mean it like THAT" or 'I don't mean Drew or his friends'.  What, exactly do you mean then?  The English language is filled with amazing adjectives--pick another word.

Don't pick on the easy targets.  The people in our society that need the most assistance.  The people who, through no fault of their own, have additional burdens that none of us could even handle.  We couldn't function in their life for a day, much less a lifetime of discrimination, cruelty, challenges and obstacles.  Certainly not come out smiling and loving life.

I know a lot of amazing people that ignorant, little people in our society consider 'retarded'.  These people are the most loving, hardest working, sweetest, thoughtful people.  They are cheerleaders for everyone they know.  Like when they ask how Drew, Chris and Harley are, every time I see them.  Like when they tell a new member to the crew (I am a job coach) 'Don't be nervous--we will help you'.  Like when they assist eachother with whatever jobs they have, treat eachother like family. How they tell me all the time 'I love my job!' and mean it.
Like this morning, when a crew member said 'I know what your favorite pop is!' making me feel important.  It's the little things in life that they are so much better at than we so-called 'normal' people.

I can't picture any of these people I know tweeting 'I highly approve of Romney’s decision to be kind and gentle to the retard'.  Cuz they have love and acceptance in their hearts, not fear of imperfection that takes on the form of bullying and cowardice.

She is an across-the-board bigot and racist. She brazenly keeps using the R-word, not caring that it hurts those who have disabilities and those of us that are proud to know them.

We need to stop listening to her, buying her books, and indulging in her stupidity. 

End of Rant.  :)

Wagon Wheels, Rain and Pumpkin guts

We went up north this past weekend to attend the Wertz Warriors fundraiser at the Wagon Wheel in Westbranch.   It is a cool place--great atmosphere, great service, and a for a great cause.  Wertz Warriors raises money for the MI Special Olympics.  Even tho there are only 2 events that physically impaired kids can attend at the SO, Boogie wormed his way into their hearts and is the unofficial 'mascot' for the Alger/Westbranch/Standish Wertz Warriors.
Anyway, we attended the Wagon Wheel of Westbranch fundraiser on Saturday.  These people raise money for Special Olypians, cuz it's the right thing to do.  Some of them have incredible ppl in their family; some don't.  Some just want to make a difference.  They do.  They really, really, do.

So, it rained all day both Saturday and Sunday.  Poured, is more like it.  No worries...we figured out a way to keep Drew as dry as possible, getting him in and out of the truck.  He is such a trooper and a great fan.  I hope the rain turns to snow this winter so we can go snow-mobiling!

Pumpkin guts brings me to tell the story of the first Pumpkin  Harley has seen.  We bought it not to carve (Drew is soooooooooooo over that) but I wanted to slow-roast the seeds on the top of the wood-burning stove.  It tooks 5 hours to get them right!  But they were killer.

So, we give Harley the Pumpkin.  He acts like it is CRACK ROCK.  He loved it so much, he grabbed the 18+ LB Pumpkin in his mouth and played keep-a way from dad.  He looked like a Pitbull, relentless and focused!

When he finally broke into the pumpkin, he devoured the stringy insides.   ick.  It was crazy, watching him dig his teeth into the Pumpkin and systematically tear it up, was so funny.  He was obsessed!

Fall is upon us...it is chilly, rainy, and smells like snow.  Jim and the boys are rocking football out!  Connor is QB for Mott JV.  Brendan plays for Eastside Eagles.  Jim coaches for the E.E.

Connor is undefeated so far this season, and is a bad Mo-Fo.  B and G's teams are great too.  We are so blessed to have our family.  All of our kids and Aunts/Uncles accept and love Drew, include him, and genuinely know him.  That is priceless to me and Chris.

Thanksgiving is almost here...It is my favorite holiday.  I love the chaos, noise, food, fellowship, chatter, mess, and intimacy that is Thanksgiving in my family.

If anyone out there has no where else to go, you are welcome here.  The more the merrier!  I want to celebrate every day for the gift that it is.

Love you, blog friends! 

Crestor is funny?!

Drew never ceases to amaze me.  I wish I could know what is going on in his incredible little head.  I wish I could see what his mind's eye sees.  I wish I could could talk to and with him.

His laugh lights up our world.  It is infectious, contagious, and pure joy.  Like, when the grandpa of a client at his therapy clinic bent over to pick up his grand-daughter's backpack and his toupee flopped forward.  BELLY LAUGH. 
Like when the lady in the airport tripped and fell--and it turns out, she was a NUN-- BELLY LAUGH.
Like when anyone trips, falls, uses sarcasm, rolls their eyes, or when his classmates sneak off of the carpet or do something they shouldn't.  BELLY LAUGH.

I want to be in his head and see what is so dang funny about the Crestor commercial!  He belly laughs every time he sees it!  How is high cholesterol funny?  I don't get it.  He kills me.  That is by far, his favorite commercial right now.

He also loves the Capital One commercial, where the sassy little girl gives Jimmy Fallon a hard time.  I can see how he thinks that is funny; irreverance kills him.  But high cholesterol?  HMMMMM.

We lost our favorite Aunt Bert this week.  I don't doubt she and Uncle Bill and Drew's grandma and Papa are blessing us from above, and getting a kick out of every thing this kid does.  He is in good company with his Angels.

We will keep on guessing, I guess.  :)

We will never forget

9-11-01 was by far, the WORST day in American History.  It was the day that Terrorism hit our home soil.  We were not prepared for it.  We were blindsided.  We were complacent.
That day will always be burned into my memory.  Drew was 5.5 months old.  I was still at Eastpoint full time.  I was the store manager for a level one (busy as hell) telecom store.  Drew was born on March 27, 2001,  I had taken the FMLA since his birth was a cluster fruck that resulted in lifelong damage to him. 
Anyway...I just got back to work after the FMLA in July, 2001.  I was getting back in the groove and getting used to the frenzied pace that was the Wireless industry in the early 2000's.
I got to work at 8:30am.  I made coffee and turned on the TV in the breakroom for my staff that would be trickling in..  I had heard on the way in, that a plane crashed into the World Trade Center Tower.  I thought 'how terrible!'  By the time I got to the breakroom, and turned on the TV, I saw the second plane hit the
WTC and thought 'that is no accident'.  One plane, maybe.  But TWO?!  No.
As my staff trickled in, confused by the news reports, I had to balance the knowledge that something big was happening. AND we had to operate the store, business as usual. The conference calls dictated me to.
Except there were few customers.  None, almost.  Everyone was glued to their TV sets.  Terrorism had hit our soil.  We had a conference call, and even tho all of us just wanted to flee to the comfort of our homes, with our families, I was instructed to conduct business as usual.  HMMMMMM.  We had never seen that kind of 'usual' in our lifetimes.
I ventured out to Chicken Shack to buy my staff lunch, all of whom were glued to the TV in the breakroom.  I just wanted to hold my 5 and a half month son, Drew.  All of us just wanted to go home and hold our babies.
I remember when I was driving to pick up lunch for my staff; the only planes I saw were from Selfridge ANG.  Military planes.  Speaking with Chris on the phone, he told me about the downed plane in PA and the attack on the Pentagon.  Unbeliveable.
When I finally could leave work and go pick up my baby, (thank God he was with family---Jim and Jen and the daycare kids--I thought, if the world ended right now, at least he is with ppl who love him)
When my work day finally ended, I took Drew home and hugged him like never before.  I prayed and prayed and prayed and prayed for this to be a mistake.  The weeks that followed showed it was no mistake; but a cslculated attack on the best country in the entire world.
I remember thinking: Why, God?  What is the point?  Why did you let my boy come into the world, fighting, if it was just gonna end?
Why, were the first responders going INTO a burning building, when everyone else was scrambling to get out?  WHY did a typical day for so many turn into a catastrophe?  Where were you, God?
I am not the only one who questioned their faith; I am sure.  But, my faith was proven to be stronger than ever when I saw the entire nation pull together to get thru this.
I wish I saw that more often.  I want to see it everyday.  Some days, I do.  I am hopeful to see it tomorrow.
I hope we never forget how we felt when evil entered our life. I pray that we are safe. I hope for the day that people can live in harmony--no matter what their beliefs.  I thank the US Military from the bottom of my heart, for everything you do to keep us safe and free.  I pray to God every day for peace.

Summer of 2012

Drew rocking it out at Therapy.  This is the first time he has done these exercises without assistance. 

Other cool things in the last month:  He picked out a cool watch with Kylie and Aunt Joan and everytime someone asks him 'what time is it?' He looks at it and laughs.  As if to say 'we both know I have have NO IDEA how to tell time!'  But he knows what a watch is, so that is good. :)

Also, the his bus driver told me today that he said 'hi' to her.  I think she might just be saying that to make me happy, but he has said words before, never to be uttered again.  Those words include 'GO!' (repeating me telling our dog that when Drew was 3)  Blue (Blue's clues) Erin (he saw my niece come down from her room at the cottage) and Elmo.  He used to say 'av-mm' which sounds like 'movie' backward wanted to watch a movie, but he figures I can just read his mind now.  LOL

Once in a while, he busts out approximations of words, but when I try to have them repeated, he tunes me out and pretends I am speaking a foreign language.  I love that about him...he thinks he really invented the 'sassy kid' schtick.  When I call him out on it, he laughs.  Oy.

Oh, yah!  He hung onto the hammock for the first time too, this summer. 

Chillin with his BFF Madilyn at the Clinton Twp fireworks.
We hope Summer 2012 is treating everyone well!  Peace.

Some cool stuff

There have been some really great things happening lately with Drew.  He seems more responsive, more motivated, and more aware.  We went to Stony Creek for the concert with Aunt Kate on June 22, and saw Drew's first PT, Kelly there with her family.  I swear he remembered her.  He was a few months old when he started with her.  He has had a love of cute  girls ever since...especially with dark hair. :)  She remembers him from the 'screaming days'.  When all he did was scream in pain/discomfort.  Before we found a good mix of meds and therapies to integrate his sensory issues/tone issues/feeding issues/muscle tightness.  Before he started school and had to learn that while he was the center of OUR universe, there were other planets that needed attention.  That he had to wait his turn.  We used to have to do therapy 'hand-over-hand'  which, really meant 'you hold your screaming kid in your lap and I will show you what to do'.  Good times.  I learned so much from the girls. 
Time heals.  Drew has continued to grow, and improve, and surprise us.  He has evolved into a cool little guy that loves activity, all things boy, and has learned patience.  That is huge.  He is still an empath.  I am glad for that.  He feels what you feel.  He is happy when you are; sad when you are; shares in his own way, whatever you are feeling.  He laughs hysterically at his 'angels' and whatever they are communicating with him.  I want to know so badly.  But he knows, so that is enough.
So, back to me bragging about Boogie.  This past weekend, we were at Forest Lake and he was in a floatie ring-thing.  He actually shifted his weight so he could kick his legs and propel himself forward!  He was rocking it!  We were able to not hold on at all...he was doing it by himself!!!  This was the first time in 11 yrs that we did not have our hands on him at the lake! (we were inches away, but still...that is huge for us!)  He was sooooooooooooooo proud of himself.
Then today, we went to Erma's for some ice cream with Jack and Luc.  Morgan was there too...she got Drew a shake and we all enjoyed our sweet treats in the van.  We dropped the Bodis' off at their house, and I was chatting with their dad while Drew stayed in the A/C van.  His shake cup somehow went from his cup holder on his car seat to his lap!  That is effing HUGE.  That means he picked it up, held onto it, and put it in his lap! It was heavy!!!!  The top was still on!  Seems like nothing, but trust me.  He coulda scaled Mt. Everest and I would be just as proud.
4th of July is my fave holiday (tied with T-day) cuz it represents everything that is our country represents: Freedom.  Freedom to grill out, chill out, sit home, go out, be crabby, be social, work, have the day off, to set off explosives into the air, to burn processed meats over a fire, to drink too much, to eat too much, to get half off flip/flops , you name it.  We truly live in the best Country on the planet.  God Bless America. 
I hope this post finds all of my blogger friends in a good place.  Peace.

Random musings

Drew is in a really good place right now.  We are so blessed to have the people who are in our lives, in our lives.  We have friends who are stuggling now with medical issues.  One friend with serious medical issues.  When this happens, I always feel fortunate that Drew is doing well.  Also a little guilty that he is doing well.  I also feel like I want to take Drew on a year-long vacation to some exotic, warm, beachy, breezy, musical, magical place.  There is a sense of urgency in showing him the best life has to offer, since we are here for such a limited time.  Life is too short for regrets, bad feelings, bad behavior, and pity parties.  My point is, if everyone lived their lives to be kind to one another, to accept everyone, with our many flaws, then life would be a heck of a lot more enjoyable.  For everyone.

My work as a job coach at ARC of Macomb has shown me a lot more about disabilities, and the amazing people who are different than we are.  I work with adults with a range of disabilities, either in crews of 3-5, or on a one-on-one basis.  They love to work.  They take pride in everything they do.  They have love in their heart.  They are funny, silly, crabby, sarcastic, kind, gossipy, sweet, moody and dedicated.  Just like the rest of us.  Oh, there is drama.  But HIPAA prevents me from going into details.  :)

We got to hang out with Drew's bestie, Maddie today.  Drew, Maddie, Jack and Luc (awesome frien-neighbors) played in the sprinkler in the 95 degree muggy heat.  Drew is so lucky/blessed to have the friends he does.  Every mom wants their kids to be loved and have friends; when you have a child with special needs that need is magnified about 1000 times. Everyone needs to feel loved and valued.  If we all went a bit out of our way to make someone feel valued, how great would life be?  If we saw everyone for their true essence?  If we had patience for those that need it the most? If we 'pay it forward' and practiced random acts of kindness every day?

I have said before, that one of the best gifts Drew has given to me, is acceptance.  Of others.  Of things I never would have accepted before.  Of less-than-perfect situations.  Of others' gifts. Of other's flaws (always working on this one) Of myself and my flaws. Of things that are just not fair.  It is a ongoing learning experience, and process, but I can't wait to see what is next.

Drew rocks my world every single day.  His personality kills me.  Like today, when Maddie was pulling his hair, pulling him toward her, snuggling with him, bonking her head on his...he looked at me like 'mom-it's okay.  I love this!'  They are so sweet together. She is more mobile than he is-but he lays his arm across her and looks at her with genuine love.  Sooooo sweet.  They have been friends practically their whole lives-her family is cool like ours. 

Sometimes life just isn't fair.  Why is Drew doing so well, and is so happy, when so many of our circle struggle every day with health issues?  Why is our buddy Ben at Children's Hospital right now, having a major crisis?  Sometimes life just isn't fair.  So again, be kinder than necessary to everone you meet.  Have patience when you don't have an ounce of it left.  Life is short--make the most of every single day and strive to positively impact the lives of everyone you encounter.

Thanks, Blogger Friends.  Happy Summer to you all.

Closing out my B-day watching 'Silence of the Lambs'. Not only is it an incredible movie...it was the first movie Drew ever laughed at. He was 5 months old, it was about 3am, and I was pacing our 1200 sq. ft. bungalow in Detroit with him to try to keep him from melting down. I stopped for a minute and he was facing the TV; it was the part when Hannibal Lecter stepped from the shadows and said 'Hello Clarice'. I knew then, that we were in trouble...LOL
It feels good to be 29 again.  I wouldn't change a thing.  I try to live life with no regrets.  The regrets I do have center around my Boogie; shoulda, coulda, woulda found therapies/doctors/approaches sooner.  He seems in a good place now.  He rocks my world.  He is so fun.  I love that he gets excited for the winners of 'Wheel of Fortune' and vocalizes it.  He puts his arms up in the air and squeals with delight. I love 7:26pm.  :)

My bro's band, Bad Aim, is playing at our house tomorrow.  They are really, really good.  Drew will be here for the sound check.  We saw them at practice a few weeks ago, and Drew loved it.  He wanted to dance!  He had a great vantage point to watch Uncle Jim on the drums, and Jim held him on his lap so they could rock out for a bit. 

I hope this post finds everyone well.  There have been a lot of really great and some not so great things happening in the lives of our friends/family.  I pray for guidance, peace, and love for all of you.

Boys will be boys

The thing that amazes me most, besides Drew's unending enthusiam for the simple things in life, is that that he is ALL boy.  He has been, since birth.  The more gross, loud, crash-y, smash-y, smelly, sweaty, boyish , the better.  He inherently LOVES all things boy.  Including the indigities like burps, farts, slapstick comedy, and Extreme sports. 
He shows me every day, how important it is to appreciate the simple things in life. How a smile and a laugh can change our world.  He has the 'Dr. Evil giggle'...no one is privy to what makes him crack up so, but we all want to be.  His infectious laugh and smile could solve all the world's problems, I am sure.
We took advantage of the mild weather today to take a walk at River Bends.  We have walked several times in the past few months...but today we didn't need so many layers or so much fleece!
Chris, Drew, Harley and I went for a nice long walk today, ending our walk at Woodall Skate Park.  We watched the kids skating, biking and blading on the half-pipes and rails.  I watched with attention as Drew watched the kids with rapt admiration.  Seeing the kids doing jumps, spins, and what-not ( I am not expressing this with the appropriate awesomeness) and seeing the social hierarchy that kids inherently have when they get together in groups, made me smile from the inside out.  Seeing the few kids engage Drew and us made me even happier.  Watching Drew watch them, with that look in his eyes, was priceless.  He is all boy. 
If things were different, I know I would be one the parents waiting in their car for their kid to 'get it out of their system' and expend some boyish energy before dinner and homework called for their attention.  Drew would be the one jumping his bike, or skateboard with reckless abandon.  He would try, try, and try again till he got the trick right.  He would need a Gatorade and a snack on the way home to get dinner.
He is truly my hero.  He sees through all the bullshit and only cares about the essence of a person.  He, and all the heroes like him, know what is really important in life.  It's love.  Excitement.  Acceptance. Contentment, like we will never know.  God bless them.  We could all learn from those that have 'less' than what we want for ourselves.  They are the enlightenend ones, for sure.
Peace to everyone, and be kinder than necessary to everyone you meet.

Lucky

I just feel lucky.  Blessed, is a better word.  Drew was having difficulty falling asleep again, so I went in his room to snuggle.  I  put in a CD I made for him years ago.  Remember the mixed tapes, from 'back in the day'?  We would spend hours waiting to hear a song on the radio, with our fingers poised on the 'record' button of our tape recorder.  We would try to time it just right, so that the DJ or commercials wouldn't ruin the song.  We would rewind, fast-forward, and otherwise manipulate the cassette tape so we could pack as many meaningful songs into a compilation as humanly possible.  Then we would proudly present this tape to a loved one and exclaim 'I made you a mixed tape!'.  Good times :)

Well, this CD was considerably easier to make...I just made a playlist on the computer and burned the CD. Ah, technology!  The songs all remind me of Drew; his spirit, his experience, his past, his future.  Either way, it is meaningful and when I hear the songs, I am energized by Drew's journey and his essence. 

Tonight, while he was finally relaxing enough to let sleep come, I realized that I would not trade these times for anything.  I thought of all the moms I knew, at that moment, who were doing the exact same thing as I  was.  Coaxing their babies to sleep.  Comforting them. Doing what it takes to make sure their babies knew they are loved and important.   I felt lucky.  Blessed. 

I tell Drew daily during our 'snuggle time' that there is nowhere else in the world I would rather be, than right here, right now with him.  I felt that power of all the moms tonight, at bedtime, that feel that same way.  All the moms that are too busy, too tired, too stressed, too sad, too overextended, but who do it anyway.   I feel lucky to be part of a such a group of strong women.  You know who you are.  But if you don't, I do.  God does.  Your kids do too.

"It's better to be a Lion for a day than a sheep all your life'~Sr. Elizabeth Kenney
Peace.