My mojo is bankrupt

Well here is what has happened in the 2+ months since I last posted.

I lost my mojo

Gone

Done

Zero

I won't bore you with all the excuses and stories.  The end result is the same.

I woke up today regretting my decision to throw away my mega fat pants all those months ago.

I woke up defeated.

I woke up discouraged.

I woke up grouchy,  sore and angry.

Once I was done waking up my family, I made breakfast.  (HAHAHA… I still have humor because without that I've got nothin!)

Seriously

I am grateful that I woke up.

I drank a smoothie full of spinach and fruit.

I packed my healthy lunch.

I walked 2.5 miles during my lunch break.

I am slowly getting back on track.

One day at a time.

Even knowing how much better I felt it is still hard to recommit to healthier habits.

But even though I have lost 2 months, I haven't lost the fight.

So I am searching for my mojo.  If you've seen it please let me know.

A revolution is brewing…

So this is part two, and if you haven’t read part one you are going to need to… so go read that first.  Click here.  It is the story of how my creative genius was squashed as a young child.

Read it?  Great, let’s keep going….

So Dana Carvey as the Church Lady.  I’ve spent a lot of time thinking about this character recently…especially her famous phrase “Isn’t that special?!?”

If by chance you haven’t seen this character it is important to know that the phrase is always said with the most condescending tone possible.  As if to say, nothing about you or your situation is special.

“Isn’t that special?!?!” 

Special 

I have issues with this word.

Perhaps my issues began when Todd’s mother continued to introduce me as “Todd’s special friend” until the day of our wedding.  I believe she was in denial that her son was marrying me and thought that maybe if there were no “fiancée” there would be no wedding.  She probably still refers to me that way if not “Todd’s future ex-wife” in hopes that he will someday return to her home and live in her basement. Coincidentally she looks a bit like the Dana Carvey’s character pictured above minus the glasses.

Todd’s “special friend”

The seeds of my dislike for this word were planted in 2000.

Fast forward to July 5, 2006.  When I gave birth to a beautiful baby girl who has many wonderful attributes, including Down Syndrome.  She has “special” needs according to society.

Now I recognize that special can mean many things and it is not always meant in a condescending SNL skit way.  The google definition of special includes “better, greater, or otherwise different from what is usual” “particularly good or precious” and “designed or organized for particular person, purpose or occasion.”

When I think of “special” I think of something that someone went out of his or her way to do for another.  “I made you a special dinner”.  “I bought this card specially for you.”  In these situations it is special because the other person made an effort they didn’t have to do and there is a sense that the receiver should be grateful for the offering.

But even when well meaning, somehow I always feel there is a negative "appreciate this because I didn't have to do it" tone with this word.  Maybe it is just me, but I doubt it.

3 weeks ago our family attended the state Special Olympics.  As someone who is slowly making their way on this healthy fitness/lifestyle journey, I was overwhelmed by the athleticism of many of the competitors, specifically the runners.  As we watched the athletes run Noah (who prides himself of being fast) said “Mom, most of these guys could smoke me in a race”.  He was genuinely surprised by their skill and it was true, these guys were tearing up the track and could beat Noah and most people I know in a footrace.  He was not expecting them to be such great athletes because it was the Special Olympics and so far Noah’s experience with this program has been with young kids.  He wasn’t thinking that the older participants would have such great skill.

We stood there mesmerized by these athletes and it made we wonder… why is it the “Special” Olympics??

Then I started thinking of all the other “specials” for people who are just working hard and surpassing expectations.  People who were given woefully low limits by society and who deserve respect and opportunities.   Maybe the most “special” about this group of people is that they did not give up on themselves when so many through history have given up on them.  They persevered.

But why is it always “special”?

My daughters have special needs

They receive special education services at school

They see specialists for therapies and Dr. visits

Special kids only happen to special people

Why does it always seem to have that Church Lady nuance?

I get that it can’t just be the Olympics because they are different and there has to be a way to distinguish.  I am well aware that even the fastest Special Olympian would not make the track and field team for the Olympic 2016 Summer games in Brazil.  That isn’t the point.  The point is that when I think of “special” there is that tiny feeling of patronizing, perhaps introduced by Dana Carvey’s character and that is just wrong and insulting.

So I have decided I am going to replace “special” in my life and in my speech.

I have toyed with several alternatives and while I am a big fan of “Mother Fucking” Todd says that is too much for a t-shirt and may not be appropriate.  I think he is secretly jealous he did not think of it. 

Picture it - Michael Phelps might be an Olympian but Meg is a Mother Fucking Olympian.  You tell me which one sounds better?!?!?  Sorry Michael, you have to go to the regular Olympics cause you aren’t as cool as Meg.

But maybe, just this once, Todd is right.  It might be too much for a t-shirt.

So after much debate and some browsing of Google Thesaurus I settled on a different term.

Kick – ass

I am sticking with this one.

It will replace all the times “special” is used in reference to people with disabilities in my life.

My daughters have kick-ass needs.  That sounds exciting and like something I can deal with!

They received kick-ass education services at school.  This is true!  They have kick-ass teachers and staff who love and value them.  It also does away with the stigma of the burden or “doing us a favor” connected with “special” Ed on so many levels.

They see kick-ass therapists and Dr's.  Makes all those appointments a little more tolerable!

I am looking forward to Meg and Alina competing at all the Kick-Ass Olympic opportunities this year and for years to come.  I look forward to the days when they are sprinting around the track and inspire a change in the way others think of these Olympians.

And my favorite…

Kick-ass kids only happen to Kick-ass people.  

Next time someone you love has a baby with a disability, please tell them this in the most enthusiastic supportive voice you can find.  They will appreciate your support and may even feel slightly empowered… I mean really, who doesn't want to be thought of as Kick-Ass?!?!  That's awesome!!

Contrary to what my mother in law may still be telling people, I am not, nor have I ever been special.  My daughters are not special.  But perhaps we are Kick-Ass and, unfortunately for you Becky, Todd won’t be moving home anytime soon.  We are keeping him because we think he is Kick-Ass too.

So, who is with me on this new Kick-Ass revolution?!?!   Cue the Tracey Chapman song….

The injustices of a scorned childhood artist...

I can still picture it all so clearly.  It was 1981 and I was 7 years old and in the 1^st grade at St. Bernard’s Catholic School in Indiana, PA.  An aging building where the 1^st grade room was in the corner of the lower level (aka "Garden level").  I loved it there – wearing my daily uniform of blue plaid jumper, a white shirt and white knee socks that, on occasion, had snoopy on them.  I rocked those socks.

During the last month there was an open house planned for one evening.  Parents were invited to come in, tour the rooms, see all the things we had done through the year and visit with the teachers, etc.  As the youngest of 5 children, my parents were already on a first name basis with the teachers (and the principal thanks to the antics of my ever funny older brother Mark) but they were still coming to open house to see my classroom, my standard brown desk, etc.

To “decorate” the classroom our wonderful teacher, Mrs. Miltz, asked each child to draw a picture of their favorite tv show.  The drawing would then be taped together in a line and wrapped around what looked like the inside of 2 rolls of paper towels.  That would then be put into a box that had the cut out like a tv.  The parents could turn the rolls and the papers would scroll revealing scenes from our favorite shows.  It was pure brilliance.

I eagerly began to draw.  While the subject was not in question, everything had to be exactly right.  I carefully chose the right shades browns, black and grey.  I threw in an occasional green for color but was cautious to make sure the end result was a bit dreary.  I sketched it lightly in pencil first so that I could use my big pink eraser to correct any mistakes before the crayons took over.  I was focused, perhaps more focused than I had ever been, and when it was finished I knew exactly how Michelangelo felt upon completing the Sistine chapel.  I knew I had created a masterpiece that would be life changing to those who had the fortune to take in its reverent beauty.  I handed it in and with my head held high, took my metal Muppet Show lunchbox and headed to the gym/cafeteria/auditorium/library/all purpose meeting room across the hall.

Later that afternoon as all of my classmates were busy working on worksheets and, possibly, getting a little high from the fumes produced by the ink on the ditto machine copies. I heard Mrs. Miltz.

“Anne, can you please come up to my desk?”

She had the drawing in her hand.  Clearly she wanted to talk about my work of art and discuss hanging it in a place of honor in the classroom so it would not be overlooked sandwiched between amateur drawings of Tom & Jerry or Superfriends.

I approach.

“Anne, I cannot use this drawing in our display.  It is simply not appropriate.”

I agree.  It wouldn’t be fair or appropriate for the other kids to have their crude sketches be compared to my masterpiece. 

“Even if this IS your favorite show, I am going to need to you draw a show you SHOULD be watching.”    

Time out.  What did you just say!?  It is the show itself you have issue with?  I respond and try to explain my submission.

“But it IS my favorite show.  Look here (I point to the top and show her the word bubble coming from somewhere off screen) This is where the announcer is saying “LIVE FROM NEW YORK, IT IS SATURDAY NIGHT!”

She looks at me.

I take a breath

“And here, this is Eddie Murphy, and the way you can tell is because I drew his face black.  He is playing Mr. Robinson, which is sort of like Mr. Rogers and they both live in neighborhoods, but Mr. Robinsons doesn’t have a trolley." I point all these things out with my pink glitter painted fingernails.

In horror I realize perhaps she has never seen the show.

Mrs. Miltz smiles “Anne, I know what Saturday Night Live is, I just do not think it is a show a 1^st grader should be watching and therefore you will need to draw something else.”

I stand there dumbfounded.  After a few seconds to clear my head I ask.

“Can I keep it if I scratch out the “Bitch” part on the sign in the back next to where Eddie, um, Mr. Robinson is standing?  Because I realize that is swearing which breaks a commandment.”

“No, please redraw”

“Do you not like Mr. Robinson?  Because I can draw the Coneheads if you want although I don’t think they are as funny.”  

The wispy remains of hope are slipping through my fingers.  It is like trying to catch smoke in your hand.

She smiled even though her patience was beginning to fade.

“Anne, Saturday Night Live is not a children’s show and is on much too late.  Pick a different show.  Let me suggest the Electric Company or the Jetson’s?  Your classmates seem to like those.”

I stood there blinking.  Not willing to give up.

“Anne, please return to your desk.  You may use the remainder of the day to draw a new favorite show.  Here is another sheet of paper.”

I sulk slowly back to my desk.  I sat there for a few minutes staring at the new blank sheet in front of me.  Realizing all eyes are on me as my classmates have watched this showdown between me and the ignorant comedy - sketch hating teacher.

I refuse to draw the Electric Company.

It’s not my fault the other kids parent’s don’t appreciate the genius of Eddie Murphy.

I hate the Jetson’s. 

My mind swirls with childish images of Big Bird and Fred Flintstone.  Should I just give in and draw Laura Ingalls and Nellie Olson?

And then I remembered a show from the year before and knew I was being called to design a new masterpiece.  It was like the spirits of the great artists overtook me as my hands began to frantically sculpt a new creation.  The colors swirled together in a dazzling display of virtuoso and cleverness.  When I was finished I sat back and smiled, satisfied that while not my FAVORITE show, it was I believed a suitable compromise.

I sign my name and walk to the desk.  Mrs. Miltz smiles as I hand her the new drawing.

She looks down at the paper.

The smile fades from her lips.

Ironically, her skin becomes a color of red that I had just invented in my new creation.

She looks up and her eyes meet mine.  Her tone, both in voice and skin coloring, reflect an anger I had not experienced from her before.

“Anne, I cannot include this either.”

“But it was on during the daytime.  Right after school!!  Even the title says “After School Special” and I watched it after Kindergarten last year.”

My argument seemed to be falling on deaf ears.

“Ms McSorley.  You had 2 chances.  Your first drawing was highly inappropriate.  And your 2^nd choice of this “ABC After School Special – The Late Great Me!  The Story of a Teenage Alcoholic” isn’t any better.  Sit Down.”

“But, it was after school.  It was on before dinner.”

“Sit Down”

“But, if you …”

“Now, Ms. McSorley!  Take your seat.”

I again felt the stares of my classmates as I returned to my desk.  I slid into my chair at the same time I saw BOTH of my creations slide into her trashcan.  My art would not grace the walls of our room.  It would not be included in the spool of Flintstone and Scooby- Doo recreations.  It was heading to the local dump.

During open house I distracted my parents from the tv show display and rushed them through my classroom to avoid any prolonged conversations with the teacher.  They didn’t need to know I was improving my vocabulary through late night comedy shows or that I already knew the dangers of teen drinking thanks to ABC’s after school education.

At age 7 I had my first “rebellion” against a Catholic School teacher.  There would be more to follow before I graduated from Catholic High School in 1992.  However I was far from rebellious in the grand scheme of things.  I also had many incredible teachers along the way.  Perhaps my worst offense was refusing to go to Confession during religion class my Junior year.  My rationale, God knows if I am sorry so I don’t need to tell the priest.  Also, I couldn’t stand the teacher who subsequently gave me a D for the grading period in addition to a lecture as to why I am going to hell.  Needless to say she and I do not keep in touch.

But also at age 7 I developed a love for SNL that continued for many years.  I remember tuning in to see what might happen to Mr. Bill and being glued to the tv when Buckwheat was shot.   “I repeat, BUCKWHEAT HAS BEEN SHOT!!”  In high school Wayne’s World moved from the small screen to the big screen and It’s Pat inspired my Halloween costume during senior year.

SNL also brought us Dana Carvey, who created a character that has given me a lot to think about recently. 

That character?  The Church lady.

I will pick up my next post here and elaborate on how the nuances of the characters tag line “Well, isn’t that special” have influenced my outlook recently.

Until then, I think I will go try to find “The Late Great Me!  Story of a Teenage Alcoholic” on youtube. 

Like sands through the hourglass…

How many of you can finish that sentence!? Brings me right back to the TV lounge of Simmon's Hall on Penn State's campus in the 90's.  The days of our lives… how quickly they slip right by.  

But there is a BIG day coming up...Meg’s 8^th birthday.  She loves her birthday.  Actually she loves ANY birthday or ANY reason to have a party that includes cake and ice cream.  She loves having people together and, I know you will find this hard to believe, she usually loves to be the center of attention.  She talks about her birthday year round, so I have to be sure that when the actual date arrives, I don’t let her down.  I am working on putting her party together (Theme - Princesses and Pancakes) and reminiscing on the past 8 years on this journey as Meg’s mom. 

In some ways I hardly recognize the person I was before Meg.… the person who walked in to the hospital 8 years ago not knowing anything about the child I was going to have.  I am one of the dying breed who refuses to know the gender before the delivery.  Little did I know the gender was not the biggest surprise in store for us that day.

Here is how July 5, 2006 went…

6:30 am - Settle in room

Pitocin started

The Cosby Show

Contractions

Sudoku

Labor

Issues with baby’s heart rate

Lay in strange positions to help with heart rate

I say "Meds now?"

I exclaim "What do you mean it is now too late for meds!?!"

Pushing

Crying

Pushing

Baby crying

2:20 p.m - “It’s a girl”

Crying

Not pinking up, looking dusky

New Dr’s in the room

Looking better

First holds and cuddles

She’s perfect

Baby to nursery for check up and clean up

Called family

“great news”

I got settled in new room

Celebration

Resident knocks

“Good news” he says “baby does not have heart condition!”

We celebrate
“You really dodged a bullet” he continues “most children with Down Syndrome have a heart condition.  You are lucky!”

Silence

World stops spinning

Silence

“Down Syndrome?!?”

Silence

Questioning

Crying

Resident freezes “yes…. I, um…. You didn’t know.  I am so sorry.  I will get my boss”

Resident backs out of the room.

Life as I know it ends.

New life begins

So as I think about that person who was adjusting to this news I wish I could go back and tell her some things.  I wish I could give her a glimpse of what is to come.  I’ve been thinking about these lessons and realize at many times of my life they would have been helpful.  So maybe if I write them now they will be LIFE CHANGING to the person I will be in 10 minutes when I am done writing!!  I can hope, right?! 

Things I would say:

“Congratulations”  You’ve dreamt of a daughter and now you have one!

“Hey Anne, Get over yourself” – True Confession - one of my biggest regrets in life is that there was a moment when I did not want to be Meg’s mom.  When, after the news of her diagnosis, I had the very real thoughts of “I don’t want to do this” and “This wasn’t suppose to happen to me”.  Well Anne if not you, then who in the hell WAS it suppose to happen to?!?!  Life is messy, heartbreaking and hard and beautiful, easy and rewarding. You’re not entitled.  You don’t get to pick only the “good” from that menu.  You signed up to be a mom.  Chances are, while you are mourning the loss of the “perfect” child you dreamed of… she is mourning the loss of the “perfect” mother she expected.  Look at that!  Neither of you is “perfect”!  You are a match made in heaven… now quit your ugly crying and embrace this journey together.

“Grasp every hand that is reaching out to you” – I know this will be tough for you.  For many years you have lived with the persona that you have your shit together.  You’ve worn that “I’ve got this” image as a badge of honor.  Well you don’t got this, sister.  The gig is up.  You’re in over your head with this right now and the sooner you can accept that, the sooner you will start to build a network of friends and resources that will sometimes overwhelm you.  You have NO IDEA the incredible relationships coming your way.  Some will be current friendships that will deepen and some will enter your life soon.  Let go of your pride and practice two very important phrases “Help me” and “Thank You”.  You will be lucky to learn a great deal of humility on this journey.

“Let go of the hands that are pulling you down” – While some wonderful people will come in to your life, you will also be disappointed in some who walk away.  Not everyone will stay with you on this.  Don’t spend your time chasing them.  Their inability to embrace you and the new makeup of your family is a reflection on their limitations.  And let’s face it… some people are just jerks and the cure for “stupid” has yet to be discovered.  Try not to take it personally and with the ever rising cost of stamps be grateful for one less Christmas card to send.

“People will take their cues from you” – If you define Meg by her diagnosis, others will too.  If you love and accept all the children you’ve been blessed with, then most people will as well.  If people see you are just raising kids and doing the “normal” family things – going to church, going to school, living in your community – then they will come to see Meg’s involvement as “normal” as well.  But if it is always “hard” for you, if it is all a “production” then people will be scared of including Meg because they will think it is a burden and requires a lot of effort. 

“Learn when it is appropriate to not apologize” – This is tricky, as a former catholic you are very good at saying “I am sorry” dozens of times a day.  Apologize when needed but do not ever feel as though you have to always apologize for your child and/or your decisions.  When you have a child with additional needs you will have different things to consider in your everyday life.  While your choices shouldn’t dictate what others do, you also should not feel bad when the health and safety of your child/family dictate what you need to do.  Make decisions that are best for you, Todd and the kids.  Those who matter will understand, those who don’t… see the paragraph above.  But do not apologize or feel guilty for having to make decisions that are right for you but not with the “majority”.

“Take care of yourself” – Here is the deal – you have a child who is going to need you for a very long time.  The only way you can take care of that child is if you take care of yourself along the way.  30 minutes a day a few times a week can tack on years… dust off your gym shoes and step away from the fritos.

“Move on” – People make mistakes, they are human.  You have enough to do and focus on without the added stress of grudges and hate.  This means it is okay to keep your guard up and some distance with those who have proved to be pulling you down.  What you don’t want to do is relive the past and continue to mentally rehash the same conversations over and over – even if each time you come up with another perfect one liner that leaves that jackhole speechless and fumbling for the apology you certainly deserved!  You don’t have to wish them well, just find the balance between wishing them well and wishing them dead.  I’d quote a popular Frozen title here, but don’t want you to get that song stuck in your head all day.

“Relax” - A good friend once told me that “Problems” are life and death.  Everything else is just an inconvieience.  Good perspective.  Remember that. 

Love. 

Forgive.

Get mad.

Dream.

Hug.

Work hard.

Cry. 

Laugh.

Praise.

Pray.

Believe in yourself.

The Psychic Hotline

I read this many years ago and it has always stuck with me…

The Traveler and the Farmer

A traveler between towns stops and asks a farmer what the people are like in the next town.

“What were they like in the town you came from?” the farmer asks.

“Rotten,” the traveler says. “Selfish, lazy, untrustworthy. Couldn’t wait to leave them behind.”

“Unfortunately, that’s what you’ll find in the next town too,” the farmer says.

Soon, another traveler comes along with the same question, and the farmer asks what the people were like in the town he came from.

“Incredible,” the second traveler says. “Good and kind and generous. I will miss them.”

“That’s what you’ll find in the next town too,” the farmer says.

Here is what this says to me: “You will always find what you are looking for… in people, in life, in the world in which we live.”

We had a great Mother’s Day weekend. (with the exception of Noah leaving an impression (a.k.a his breakfast) on his sister, the car door and the ground at mile marker 76 of I-74 on Saturday morning) It was a beautiful weekend spent with the family.  Like the true hillbillies my nephew Luke believes we are, we camped in our driveway (because we didn’t want to be too far from home should Noah have a repeat of the mornings events) went fishing and took a long hike.  The weekend was what EVERY weekend SHOULD be – a celebration of ME, complete with me setting the agenda, not doing dishes, and having the children I created celebrate and wait on ME.  Perfect.

Monday morning, still somewhat in a blissful dreamy state I am curled up in my bed with Meg (who graces us with her presences every night about 2 am).  We are as snuggled tight, so intertwined that I am not sure where I stop and she begins in this cool room under fluffy blankets.  I take in the lavender smell of her freshly washed hair and feel it so soft next to my cheeks.  I love these moments… it is exactly what I think motherhood should be. 

In her soft sleepy voice I hear her whisper 3 little words:

“Mom, I pee.”

And then I feel it.  A warm blanket of liquid that seems to dampen every piece of me. 

“No, no, no GET UP!” I yell as I push her out of bed and try to mitigate the damage and amounts of laundry this leaking child is creating. 

She stands there rubbing her sleepy eyes looking at me.  “GO TO THE BATHROOM NOW!”  I say.

Her response:  “I just did” 

She is right, she did just go to the bathroom.  It simply wasn't where I would have preferred she go.

There is nothing left to say and beds to strip …and so my Monday begins.

I roll out of bed and look at my calendar.  Meetings, Dr appointment, workout, errands, reports that have to be done…. and now laundry.  The mental grumbling begins.

“I don’t want to deal with that today.” 

“The grocery store again?  I am sick of grocery shopping” 

“I don’t want to exercise”

In my head I hear the same annoying whining I often tell my kids to stop.  I momentarily wonder where they get it?  Todd, I tell myself.

And then I remember the famer and the traveller.  I decide I need to check my pre-determined outlook towards all these things. 

The reality is the events of my day need to happen.  HOW they happen is dependent upon my attitude. 

I have to go to meetings.  If I go in thinking “ugh, worst meeting ever I don’t want to be here” chance are I will leave the worst. meeting. ever.

I have to exercise.  If I think “worst 40 minutes of my day” it will probably feel more like 400 long and painful minutes.

Here is what I understand.  When I go into something thinking it is going to be awful - 100% of the time I find something awful about it. 

It is like I am one of those workers for a 1-900 Psychic hotlines who has an “amazing ability” to predict the future!

But it is not very often that I got into a situation thinking “This is gonna suck” that I walk away thinking “woo hoo that was awesome!” 

So, I am not “predicting” the future as much as I am using my attitude to shape my experience. 

If I have made up my mind that I am going to hate someone or something - I will find a reason to "justify" my pre-determined attitude.  Sometimes that reason won’t even be hard to find because bad things are bad people are a part of life. 

But good things are good people are also a part of life. 

So if I think of myself as the traveller, knowing I will always find what I am looking for in others, in situations, in my day I need to decide: What am I going to take the time to look for? 

Knowing time is a gift and a limited resource - I choose to look for good.  I won’t say this is always easy, but I see it as the only alternative.

Summer is coming… some days it will be hard to leave for work every day while my kids plan their daily adventures with Todd.  I can choose to grumble or I can be grateful that my kids get to spend their days with an involved dad who is creative and loving. 

Students are graduating and changes are happening on the hilltop.  I can choose to mourn for the “good old days” or celebrate the fact that my path ever crossed with some of these folks and be open to the new students and staff I will encounter.

I literally got pee’d on yesterday.  I can be annoyed by the experience and angry with Meg or I can appreciate a child who loves to cuddle with her mamma and the feel of freshly washed sheets.

I always find what I am looking for…  I am making to decision to look for joy.  That isn't sitting back and viewing the world through "rose colored glasses".  It is a conscious choice to actively seek the good in all things and people.

What are you looking for today?  Let me know if you find it.