Words

In 2008, I received some materials from the Indiana Governor's Council for People with Disabilities (GCPD) in celebration of Disability Awareness Month in March.

Included in the package of materials was this bookmark.

The front says:

Attitude is Everything.

When you champion a winning attitude for yourself and your team, you can achieve anything.

The back says:

Choose Words Wisely.

1. Put people first.  Instead of saying "the blind boy," say "the boy who is blind."
2. Focus on what someone can do, not on what he can't do.
3. Say "my friend has a disability" rather than "my friend is handicapped."
4. Treat people equally.  Don't feel sorry for or go overboard in how you treat people with a disability just to make them "feel" better.
5. Give the person a chance to say something or to do an activity on his own.  Like you, he has ideas and talents to contribute.
6. Wait to offer help until someone is ready or asks for help.
7. It's okay to ask questions when you're unsure of what to do.

I can tell you that these truly are words of wisdom.  They make a difference.  :)

Especially important to me is the 1st statement.  I do a kind of "mental cringe" when someone refers to a child with Down syndrome as a "Down's kid."

I'd like to add something to the 5th statement.  Not only give the person a chance to say something, but also wait for the person to say something.  Often, T is slower than is typical when he responds.

And...the 6th statement is a big reminder to myself!  Too often, I find myself trying to help T when either he wants to try to do it without help or he is capable of doing it by himself.  :P

Netherlands

I received two postcards today.  The second one was from the Netherlands.

The sender of this postcard wrote that this view is of one of the few small hills in Holland.  Gorgeous, isn't it?  She also wrote that it is near her country's border with Belgium.  The farm pictured is "in the way people built in former years."

Germany

I received two postcards today.  The first one was from Germany.

Düsseldorf is the capital city of the German state of North Rhine-Westphalia.

Düsseldorf is Germany's seventh largest city with a population of 593,682 within city limits (2012).

Düsseldorf is an international business and financial center and renowned for its fashion and trade fairs.

Culturally, Düsseldorf is known for its academy of fine arts, its pioneering influence on electronic music, and its relatively large Japanese community.

Düsseldorf experiences moderate winters with little snowfall and mild to warm summers.  The average annual temperature is 51° F. with an average yearly precipitation of 31 inches.

source:  Wikipedia

Netherlands

I received a postcard today from the Netherlands.

The West Frisian Islands or Wadden Islands (called De Waddeneilanden in Dutch) are a chain of islands in the North Sea, north of Netherlands and Germany and west of Denmark.
Between the islands and the mainland is the Wadden Sea, which at low tide is mostly dry.

The islands are inhabited by about 81,300 people.  The largest island is the Dutch Texel, followed by the Danish Rømø and German Sylt.  Sylt has about 21,000 inhabitants and is the most populous island.

sources:
   Wikipedia - Waddeneilanden
   Wikipedia - West Frisian Islands

The sender of this postcard wrote that when it is low tide, it is possible to walk to the islands from the mainland...called wad-hiking.  That's what the people pictured on the postcard are doing!

Trip to Holland

My guess is that most parents who have a child with special needs (and many others who don't) are familiar already with this essay by Emily Perl Kingsley.  I had neither heard of nor read the essay until after T was born.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this....

When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say.  "What do you mean Holland??  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

c1987 by Emily Perl Kingsley

When I was pregnant with T, the ladies from our chapel planned a baby shower for us.  However, the planned date of the shower was too close to my due date...and T was born before the shower occurred!  The baby shower was re-scheduled...and by that time, I was familiar with this essay.  It spoke to my heart in such a way that I shared it...read it to this group of ladies during the shower.

There is a post of a wonderful interview with Emily Perl Kingsley here.

Ellen of Love That Max blog sums up this March 2011 interview with these words:

Savor whatever experience you are fortunate enough to have.  Make the most of the hand you are dealt.  Try to find beauty in each day, if you can.

Finland

Yesterday, I received this postcard from Finland.

Finland is a Nordic country located in northern Europe.  It is bordered by Sweden to the west, Norway to the north, Russia to the east, and Estonia to the south across the Gulf of Finland.

Finland:

• is the eighth largest country in Europe.
• is the most sparsely populated country in the European Union.
• has a population of 5.4 million (2012).
• has the best educational system in Europe.
• has been ranked as one of the world's most peaceful and economically competitive countries.
• has been ranked as one of the world's countries with the highest quality of life.
• has been ranked as the overall "best country in the world" (by Newsweek magazine).

source:  Wikipedia

Russia

Last week, I received this postcard from Russia.

Moscow:

• is the capital of Russia.
• is a major political, economic, cultural, and scientific center in Russia.
• is the most populous city in Europe.
• has a population of 11,503,501 (2010 census).
• has the largest community of billionaires in the world (according to Forbes magazine).

source:  Wikipedia

According to the young woman who sent the postcard, these are the most famous views of Moscow.  I don't know the names of any of the buildings...however, finding out is a project for another day!  :)

Buddy Walk History

While I'm on the subject of the Buddy Walk, I'd like to share some of its history with you.

The Buddy Walk program was established in 1995 and has become the premier advocacy event for Down syndrome in the United States.  It is also the world's most widely recognized public awareness program for the Down syndrome community.

These milestones show how the program has grown!

In 1995:

• Seventeen Buddy Walk events took place across the country.
• Chris Burke led the flagship New York City Buddy Walk.

In 1999:

• The Times Square video was introduced.

In 2001:

• A new Buddy Walk logo was introduced, the blue and yellow graphic of a family holding hands.
• More than 100 Buddy Walk events took place.

In 2003:

• More than 190 Buddy Walk events took place in 49 states and five countries with over 180,000 participants raising more than $2.5 million.

In 2004:

• More than 210 Buddy Walk events took place with over 200,000 participants raising more than $4.5 million.

In 2005:

• More than 250 Buddy Walk events took place with over 200,000 participants raising more than $5.5 million.

In 2008:

• The Buddy Walk public service announcement was played nationwide at all Regal Cinemas before every movie for two weeks to celebrate Down Syndrome Awareness Month and the Buddy Walk program.
• More than 250 Buddy Walk events took place with over 250,000 participants raising more than $10.5 million.

In 2009:

• The first Buddy Walk held on a military base in a combat zone took place at Camp Phoenix in Kabul, Afghanistan.

In 2011:

• The first Buddy Walk in Japan was held at Kadena Air Force Base in Okinawa.

In 2012:

• More than 250 Buddy Walk events took place with over 295,000 participants raising more than $11.75 million.
• The Buddy Walk has been ranked in the top 30 fundraising events nationwide for:  money raised, number of participants, and best series event since 2008.

source:  National Down Syndrome Society

These twin girls (holding the banner) are so funny and fun-loving...and were raised by their single mother who is totally deaf.  The word that comes to mind is fortitude.  It is wonderful to see how the members of this family help and support one another.

Buddy Walk

Yesterday, we attended (and my husband and T participated in) the Buddy Walk in our area.  (I cheered from the sidelines...having a bum foot and all.)

The starting point for the walk

Ready to walk

The printed program showed the event schedule.

It also showed the walk route.

We ate a hot dog lunch...with chips, soda, bottled water, cookies, and ice cream provided, too.

Waiting for Mama to finish eating

There was a band.  There were games and activities for the children.  There were dance school performances and Tae Kwon Do class demonstrations.

And...there were other activities not listed in the program...such as the 50/50 raffle. Raffle tickets were $1 each.  One winning ticket was drawn.  Of all the money collected, one half went to the Down Syndrome Family Alliance of Greenville and the other half went to the lucky ticket holder...who happened to be my husband!  :D  He walked away with $175.  Wow.  :)

At the end of the walk, every buddy received a medal and certificate!  :)

Proud of his medal...

And worn out

It was terrific to see so many of the families with whom we've developed friendships over the years.

What an enjoyable afternoon!  It was obvious that many people had put much time and great effort into the planning and preparation.

The Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.

source:  National Down Syndrome Society

Down Syndrome, Defined

I thought I would begin my 31 Days by posting the answer to a basic question:

What is Down syndrome, anyway??

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits.  These genes are grouped along rod-like structures called chromosomes.  Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.  Down syndrome occurs when an individual has an extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.  A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm.  However, each person with Down syndrome is a unique individual and might possess these characteristics to different degrees, or not at all.

source:  National Down Syndrome Society

In a pensive mood

T possesses some, but not all, of the common physical traits associated with Down syndrome.  He has low muscle tone and an upward slant to his eyes.  He does not have a single deep crease across the center of his palm or small stature.  (More on growth charts in a future post!)

My Infant

My brother read my blog post about T's birth...and sent these photos for me to add. (See the last paragraph of this post.)

Being burped by his uncle

Fast asleep

My Son, My Story

I have never posted anything about T's birth story.  I jumped into blogging...pretty much on a whim...and went from that day forward.  So now, I will back up...to a beginning of sorts.

My husband and I were married on October 16th.  I knew before two months had passed that I was pregnant.  What a blissful day that was!

I shared the joyful news with my husband in this way:  I prepared a special supper, set a beautiful table, and gave him a gift-wrapped box after we had finished eating. The gift was a Christmas ornament.  --No surprise there.  I love ornaments, and it was December!  My husband expected it to be a "First Christmas Together" ornament.  He was blown away when he looked closely at it and read the words, Parents-To-Be!  I was so delighted to see his shock and amazement.  He is the hardest person to surprise.  He was totally surprised...and overjoyed with the news, of course!  :)

I had a great pregnancy.  It was so much fun.  I loved being pregnant.  --No morning sickness...just the one morning I gagged while brushing my teeth.  :P

Even though I was of "advanced maternal age," we chose not to have any diagnostic tests performed...because of their invasive nature.  I do not regret my decision. (More about that subject in a future post!)

I had a full-time job at the time.  A day and a half before T was born, I had mentioned to one of the managers at work that I didn't feel well.  I felt like I was getting the flu. He told me later that, at the time, he thought it was a ploy to get out of being at work...because it was an absolutely beautiful, sunny Friday afternoon.  :)  I later found out that it is not uncommon for a woman to experience flu-like symptoms a day or so before the birth of her baby.

T was born on July 16th...nine months to the day after we were married.  :)  He was born on a Sunday at 2:15 pm.  He weighed 6 pounds and 12 1/2 ounces.  He measured 20 1/2 inches.  I had natural childbirth, and everything went great.

About four hours after T's birth, the pediatrician came to our hospital room to tell us of his diagnosis.  My first thought was for T, that I didn't want him to have a difficult life.  The next morning, my husband went downstairs to the hospital cafeteria for breakfast.  Afterward when he returned to our room, I discovered that we had both shed tears...privately, separately...for the loss of what we thought our new family life was going to be.  That was the first time...and the only time we cried about that.

I remember when one of the elders from our church called the day after T was born. I told him that I knew (with tremendous conviction) that T was meant for us.  I still know that...with tremendous conviction!  :)  He is perfect for our family...for us.  The Lord knows.  He is so awesome and good!!

I wish I had some pictures to share with you.  Alas, we didn't have a digital camera at the time, and we don't have a scanner at the moment.  So...maybe another time. I'm just thinking...lots of words here, and no pictures to break it up.  I hope you made it this far.  Lol.