World Down Syndrome Day -- March 21, 2013

Tomorrow is World Down Syndrome Day.

My facebook feed is abuzz with all kinds of groups and pages and bloggers and friends I follow regarding Down syndrome.

There are videos, songs, poems, letters, thoughts, blog posts, debates, people wearing lots of socks, t-shirts, you name it and they have it out there for this day!

Down syndrome awareness month takes place in October -- for the whole month.

But World Down Syndrome Day takes place on 

3-21- March 21st

As in the 3 copies of the 21st chromosome people with Down syndrome carry in their body. 

Clever, I like it.

One symbol of Ds awareness

Unlike Ds Awareness Month, World Down Syndrome Day is a day of action.

There is a conference tomorrow at the United Nations Headquarters in

 New York City.

This years conference is entitles "Right To Work". You can read the summary below taken from the WDSD website for more information or click on the link for further information.

"This year's World Down Syndrome Day Conference is entitled: "Right To Work".

Article 27 of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) recognises the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.

The Conference will help to realise the right of persons with Down syndrome and other disabilities to work in open, inclusive and accessible environments. It will highlight the importance of early development and education, proper medical care, and support for employment, independent living and community participation in realising this right."

http://www.worlddownsyndromeday.org/wdsd-conference-2013

2013 is only the second year that the UN has recognized this day.  As a mother to a child with Ds, I can't think of a better topic than the ' Right to Work'.  If I want my child with Ds to be treated the same as my other children without Ds then she needs to be held to the same economic standards and given the same economic opportunities as everyone else.  As it stands now, in our society, this is not the case.  People are talking, action is happening, laws will change.

While we all can't attend tomorrow's conference or lobby in Washington we can take action tomorrow.

Take action tomorrow by extending kindness to a fellow human being.

Pay it forward.

Buy somebody coffee.

Pay for somebody's gas.

Mow a neighbor's lawn.

Pick up 21 pieces of trash.

Tell a co-worker they did a good job.

Correct somebody using the 'r-word'.

Pray for someone.

Do something KIND.

Out of the ordinary KIND.

Advocacy, awareness, action, all stem from love.

When you act out of love you are being KIND.

I may just be camped out at DD's tomorrow for 21 minutes buying people coffee.

Be KIND and leave me a message or a comment about your 

Random Act of Kindess.

Do it for the purple princess.

Beyond the Suck...

 

Embrace the Suck


I am not sure of the origins of said phrase and not really up for doing the digging to find out.


The Marines?

Chris McCormick uses it to describe the Ironman experience.

Cross Fit athletes use it, I don't know and well don't really care the origin.

What I do know is that when it comes to physical challenge and physical uncertainty in any type of endurance event I am more than willing, happy even to


EMBRACE THE SUCK

When faced with physical challenge and the need for physical perseverance I'd give myself an A+.


In the real world realm of family, kids, and life when faced with challenge and perseverance of the emotional type I'd give myself a D.


I can feel the suck, I can see the suck, I can hear the suck

And all I want to do is run away from the suck.

Anxiety, depression, fatigue, weariness, paralysis.

Physical symptoms of an emotional crisis.

I wish I was exaggerating and many will think I am.

I have this remarkable ability to see what is happening to me, to see how to change it, to see the error of my ways, to see the damage it causes.

And a remarkable inability to DO.

I've been down this road at least twice before.  I know the signs and I can read the signs.

But adhering to the signs takes time.

Last Sunday I stood in my new kitchen, looking out my amazing new window, at the amazing back yard view.  I knew what I should be feeling.

Gratitude, contentment, happiness.

All I felt was empty.

But I looked down into my hand at the full bottle of hope.

The translucent orange bottle with the white cap.  The kid proof cap.

I pushed down and turned, removed the cap, and poured out a few of the small white and blue pills.

I filled a glass with water, I placed the small white and blue pill in my mouth, took a sip of water.

Swallowed.

Looked out that same kitchen window and saw the same view.

This time I did not feel so empty.

Medication is not the 'Answer'.  But at certain times it is necessary.

I have often thought of those white and blue pills as my biggest weakness.

I now know those pills keep me from making my biggest mistakes.

Three years without them, two of them great.

A year of unending trying, persevering, struggling, and learning.

I am happy for the experience that I will no doubt revisit again but for now

I will continue to look out that kitchen window looking for gifts.

At times I will feel full at times I will feel empty but inevitably I will

Move beyond the suck.


I didn't know....

 

 

 

 

I didn't know sending Bridgie to school was going to paralyze me.

 

I didn't know that something so simple as sending a child to pre-school would be so complex.

 

I didn't know that I would be so emotional, irrational, and confused.

 

I didn't know about the new fears and pressures and logistics.

 

I didn't know that I would flounder and flail and fret.

 

I didn't know that I wouldn't have the answer.

 

I didn't know.

 

 



How do you know...

 

 

 

It's time to go back on medication.

If you are a person who deals with depression you know that it can ebb and flow.

You know, after many bouts, what the signs are.

You know, when you are not a crier and you are crying bucktets.

You know, when you are an avid exercise enthusiast and you can't even fathom 20 minutes.

You know, when you could close your eyes anywhere and fall asleep.

You know, when you crave ice cream more than that time of the month.

You know, when you are so angry at yourself you could spit.

You know, when you pick up the phone to call your doctor and your hand shakes and you wonder if you are going to cry on the phone with the secretary.

You know, when nothing gives you joy.

You know it's time to tear the roof off the mother sucker.....

 

 

 

 

3 pm Monday

St. Brigid

 

 

February 1st, today, is the Feast of St.Brigid.

 

 

I wish I had remembered to say her prayer on Wednesday.

 

On Wednesday Eoin and I

 

One of the hundreds of these he has taken in his short life.

 

drove down the road to take Bridgie for her first day of school.

 

All the way there I felt at peace with our decision to send her to this school.

 

In my heart I knew that she was ready but that I really was not.

 

"She's mine!" I kept chanting in my head over the last few months of making this decision.

 

She's mine and I don't want to share her with YOU.

 

What I came to realize on that 25 minute drive to the school is, something that I have known since that first cockeyed glance she gave me on the day of her birth, that she is not mine.

She has been given to us to care for in this life.  Given to us to guide and protect to the best of our abilities.  Given to us to learn big lessons from.  Given to us to share with the world.

 

Bridgie has things to do.  And this I have also known from her birth. 

 

"She's going to do whatever she damn well pleases".

 

And who am I to stand in her way.

 

Who am I to try and shield and guard her.

 

Who am I to try and keep her from people and learning and friends.

 

Who am I but the one to help her on her journey.

 

She will do big things, of this I am certain.  She already has in turning my almost deadened heart into a heart of glee.

 

She will push us on this journey and we will balk and stall and kick and scream but eventually we will see.

 

 

Taking Bridgie into the school I carried her.  Once inside I handed over the paperwork

to the secretary and realized we were way too early.  Now I had to contain and restrain her in this little office for 15 minutes.

 

She just wanted to run.

 

 

 

Run down that great big hallway into the unknown.

 

Into the great big world.

 

And all I wanted to do was contain her, restrain her.

 

It became a battle and she screamed and pinched and pushed and hit and I held on tighter and tighter and told her No, No, No.

 

And when the time finally came and I said Yes, Yes, Yes,

 

 

 

She grabbed the therapists hand, put on that too big backpack, and started marching away.

 

I took out the camera, only wanting a picture of their backs, and the therapist tried to turn her around for the picture and she tried to escape and yelled.  Once back around I heard the strong slapping of her footsteps down that great big hall growing quieter and quieter until I swooped up Eoin and hid my tears of fear in his hood.

 

I felt weak, nauseous, and paralyzed.  I had thought of driving to Whole Foods during this time but now that was entirely too far away.  We crossed the street to the Kmart and I walked around in a daze while Eoin looked at Angry Bird toys.

I wound up spending $200 on who knows what.

Most of which will be returned when she goes back on Monday.

 

We left Kmart for the McDonald's next door for the ultimate comfort food....

 

French Fries.

 

When we went back to pick her up, I said "Eoin, did you miss Bridgie"  "No".

 

He had not been worried.

 

In fact he wondered if she had had a job like he does at his school.

 

He and I will enjoy our alone time together for the next few months.

 

Finally, I heard the faint slapping footsteps as they got louder and louder and rounded the corner.

 

I took one look at her and her at me and I knew we were both Changed.

 

On the way home we talked all things school.

 

I thought she would fall dead asleep but she jibber jabbered all the way home doing all kinds of hand motions I've never seen.

 

She now says "skoo" and "eacher".

 

We have a long road ahead of us.

 

But I think we are in good hands.

 

 

 

 

 

Saint Brigid
You were a woman of peace.
You brought harmony where there was conflict.
You brought light to the darkness.
You brought hope to the downcast.
May the mantle of your peace cover those who are troubled and anxious,
and may peace be firmly rooted in our hearts and in our world.
Inspire us to act justly and to reverence all God has made.
Brigid you were a voice for the wounded and the weary.
Strengthen what is weak within us.
Calm us into a quietness that heals and listens.
May we grow each day into greater wholeness in mind, body and spirit.
Amen



Another Letter....

 

Dear People,

 

dear, dear, people who believe it is their God given right to use the word retarded

 

people who believe apologizing for publicly using the word is weak

 

people who believe that we who are offended have our panties in a bunch

 

people who believe that we are too sensitive

 

people who believe that society is too 'PC' trying to eradicated the use of the word

 

people who scoff at the pain it causes

 

people who argue that it is not being used to belittle others

 

people who argue that it's just a word

 

people who try to justify it's use in any fashion

 

dear, dear, people you are missing the point.

 

Walk a mile

 

Stand in the shoes

 

Take a day in the life

 

And when your heart gets shattered into a million pieces over a word

 

Or you slam into a brick wall of diagnosis

 

Or you are buried by hurts caused by others indifference,

 

I will be there to offer you a hand

 

to offer you some glue to mend your heart

 

to pick up the bricks that surround you

 

to dig up the indifference.

 

Then Peter came up to Him and said, Lord, how many times may my brother sin against me and I forgive him and let it go? [As many as] up to seven times? Jesus answered him, I tell you, not up to seven times, but seventy times seven! Matthew 18: 21-22

http://thingsicantsay.com/wp-content/uploads/2012/01/pouryourheart1-e1328022968330.png



Dear Mr. Flacco

 

 

Dear Mr. Flacco,

 

I am not surprised.

 

I am not stunned.

I am not saddened or dismayed.

 

 

What I am is confused.

 

Here is a snippet from your official website about your support of Special Olympics Maryland:

 

Joe provides substantial support to Special Olympics Maryland (SOMD) and annually participates in the Polar Bear Plunge (2009-2011), benefiting the nonprofit which provides year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities.

 

In 2009, Joe co-hosted the SOMD Holiday Party with former teammate Adam Terry. In November 2010, Joe visited with SOMD athletes at the Ravens' flag football exhibition. Joe also attends the Special Olympics Maryland Summer Games Kickoff each June.

Wow.

You obviously care deeply about the Special Olympics. 

Oh, wait, maybe you did care and something happened because you stopped showing up in 2011.

Hmmm can't imagine what the falling out must of been.

Oh, maybe you dropped the R bomb at the 2010 SOMD Holiday party.

I can see how things may have gone sour.

Oh, but wait, I am on a tangent.

The real purpose of this correspondence is to point out to you the problem with using the R word.

You stated it beautifully yourself.

"Yeah, I think it's retarded."
(the move of the Super Bowl to a potential cold weather venue)

You know that's not the part that hurts, you know the retarded bit.

The part that hurts is when you say

"You know I probably shouldn't say that."

Again, not so bad.

It's when you said

"stupid"

As in having the Super Bowl in a cold weather venue is stupid.

So here's the bad part.

In your mind retarded = stupid.

"But I did not mean it in reference to......" Yadayadayada

"It's just a word....." Yadayadayada

Shut it.

Just shut it and make no excuses.

Get down on your knees and ask Him for forgiveness.

Next, explain yourself to your wife, the mother of your son.  Break down if need be.

Next, pick up the phone and get in touch with SOMEONE at Special Olympics Maryland and arrange for a meeting.

THEN and ONLY THEN shall you be fully prepared for said "Super Bowl".

Priorities, get them in order.

Be A Stand Up Guy.

Let Baltimore Rave about You.

OWN UP

BE THE EXAMPLE

RAISE THE BAR

You should probably share this experience with your teammates and coaches.

Make Baltimore proud in more ways than one.

How great would it be for the Baltimore Ravens Franchise to jump on the bandwagon.

SPREAD THE WORD TO END THE WORD

Thou shall not speak the word on the practice field, in the locker room, and heaven help you not on that game field.

Fines all around for those who can't refrain and donate those fines to

SPECIAL OLYMPICS MARYLAND

What better way for

SPREAD THE WORD TO END THE WORD

to infiltrate our schools than for the

Baltimore Ravens to set the tone.

We must protect this house.

I must protect THIS house.

Respectfully yours,

Bridgie's Mom

“Never, never be afraid to do what's right, especially if the well-being of a person or animal is at stake. Society's punishments are small compared to the wounds we inflict on our soul when we look the other way.”

Martin Luther King, Jr.