Down Syndrome and Birthdays

Looking at the searches that have lead people to this blog is an adventure.  Some are hits – each time I see a search about prenatal diagnosis I give myself a mental high five.  Some are misses – “natural garden images” for my Welcome to Holland analysis.  Some surprise me – I’ve had multiple views of my post from Adelle’s birthday for searches relating to celebrating birthdays of people with Down syndrome.  That post doesn’t address the topic at all and, honestly, I never would have thought about addressing this topic because sometimes I forget about Before Meredith.

Before Meredith was nice.   She tried to do the right thing.  She didn’t want to offend anyone or hurt any feelings – to the extent that she avoided situations or people that might cause either of those things to happen.

I can imagine her flipping through the mail while walking up the driveway from the mailbox, smiling a little at a small colorful envelope addressed to Brady, obviously carrying an invitation from a friend.  I can imagine her reading the glossy photo invite over his shoulder, happy that he has been included in this celebration by a little classmate.  The who, when, and where listed next to a smiling picture of a little boy or girl with Down syndrome in the shape of a balloon or a birthday cake, colorful cartoon confetti splashed all over the background.  That picture would morph Before Meredith’s smile into an anxious frown.  Later, she would carefully Google “Down syndrome birthday”, for the perfect “Down syndrome gift” so as not to offend the poor “Down syndrome child” or “Down syndrome parents.” Then, on the day of the party, she would drop her son off with his brightly decorated gift, to play games and eat cake, and she would cross her fingers that the gift was correct and be proud that her son had a friend with a disability – big parenting pat on the back. Yeah!

It would be easy for the person I am now to get angry at Before Meredith.  There is so much injustice in the world when it comes to people with disabilities.  It can be overwhelmingly heart breaking.  Before Meredith is a convenient (although not fair) scapegoat.  Before Meredith doesn’t know many people with disabilities.  But I know what is in her heart, because I was her.  Her heart is mine, with less experience.  Her mind is open.  She is looking for the right answer.  So here it is:

A child with Down syndrome is a child first.  They would probably appreciate whatever fad is popular with children in their class.  Feel free to ask what they are interested in when you call in your RSVP, or let your child choose the gift.  A birthday with Down syndrome is the same as a birthday without Down syndrome.  Just like any other child, a child with Down syndrome will care more about having friends at their party than the gift brought with the friend.

The same goes for any other situation for people with Down syndrome.  They are people first.  Down syndrome is something they have, not who they are.  Down syndrome does not make someone all that different from anyone else.  To Before Meredith I say: Don’t be afraid of saying or doing the wrong thing.  Don’t worry about what you don’t understand.  Put yourself out there.  Ask Now Meredith.  She would be happy to answer your questions and you will be better because of what you learn.

photo credit: chambanamoms.com

Liebster Nominees – Surprise! I’m Not Dead!

When I was nominated for a Liebster Award by Bright Blue Line, I had this grand idea to knock out all of my Liebster posts by posting once a day.  It’s safe to say, I bit off more than I could chew.  I mean, I wore a swimsuit instead of underwear yesterday.  Frankly speaking, I’m a little underwater here (no pun intended).  It has become clear to me that when I thought I was prepared for a third child, I was completely mistaken.   I have 91 new Facebook notifications and its not because I am popular.  My house smells weird and I can’t figure out if it’s the fridge, Mount St. Laundry, the diaper pail, or me (I’m not showering as much as I’d like).  I’ve seen a lot of women pull off three kids flawlessly, and good for them.  But for all you moms out there who have three or two or even one who’s pushing you to your limit, I’m right there with you.  I’m in survival mode here.  That’s my excuse for taking so long to make my nominations: I have three kids.  I have finally managed to find a few minutes (that’s right – I’m posting from the bathroom because the door has a lock) to share eleven blogs I love to read that I think you should be reading, too:

Autobiographical Reflections

Contrary Mom

The Cooper Chronicles

An Exacting Life

The Maiden Metallurgist

“Normal” is the New Boring

Punk Rock Mamma’s Blog

Simple.  I Just Do.

A Typical Son

VIOLETWISP

We Will Begin Again


To accept the Liebster Award I have so graciously bestowed upon you, follow these simple rules.  You can do it all in one post, several posts, or not at all.  It’s up to you.

liebster-award-ribbon1.Thank the Liebster-winning Blogger who nominated you and link back to their blog.  Yay, that’s me!  Be sure to mention me in the dedication page of any future publications, or I can just write the forward for your novel.

2. Post 11 interesting facts about yourself.

3. Answer the 11 questions your nominator asked.  Check out my thought-provoking questions below!

4. Create 11 questions for your nominees.  

5. Nominate 11 blogs of 200 followers or less which you feel deserve to be noticed and leave a comment on their blog letting them know they have been chosen.  I have no idea how to tell how many followers a blog has, so if you have more than 200 followers, don’t be offended. Additionally, I left out Kimche Latkes, Dissocial Mom, and Little Bird’s Dad because you have all been nominated recently.

6.  Display the Liebster Award logo.

Should you choose to accept, here are my eleven questions for you:

  1. Why do you blog?
  2. Aside from me and my fabulous blog, what are you passionate about?
  3. Myself excluded, who do you admire?
  4. What would you like written on your tombstone?
  5. If someone is reading your blog for the first time because a wildly talented, somewhat disheveled blogger who is wearing actual underwear today nominated you for a Liebster Award, which post do you want to make sure they read?
  6. Hypothetically speaking, If my kids have allergies but they are not really affecting them right now, is it still okay to give them Benedryl so I can take a nap?
  7. What is your favorite place and why?
  8. What is your favorite book?
  9. You know that song that get’s stuck in your head even though you hate it – which song is that? Is it stuck in your head now? Hee hee hee.
  10. What is the meaning of life?
  11. Where did I put my car keys?

Liebster Award: All The Rest

liebster2The last of the questions posted posed by Bright Blue Line follow.  I couldn’t really make a post out of each, so here they are.

“What makes you unique?”

Well, it’s probable that I am not unique.  Most likely there has existed or does exist or will exist someone like me.

“Describe your most favorite night out?”

No kids, tasty beer, my favorite jeans fit – YEAH! Dan can come if he wants to.

“If you were a super hero, what would your powers be and how would you use them?”

My selfish answer is that I would love to be able to run forever like Dean Karnazes.  I would use this power to, well,  run forever.  The human body is amazing.  The way I feel when I am running is terrible and fantastic all at once. I crazy want this power.  If it would give me that power, I would drink his blood or something equally evil.  I would even sit through all The Twilight movies.

My selfless answer is that I want to shoot empathy laser beams from my eyes into people’s hearts.  I would use it to make people understand one another.  I really believe this would solve a lot of problems.

Now I am going to have a beer and build a trophy case for my Liebster Award.  Stay tuned for my Nominees!

Photo credit: tshirtsandtwine.com

Liebster Award: The Book of Ruth

In my quest for the Liebster Award, I must answer this question posed by Bright Blue Line: “If you could go back in time & speak with anyone; who would it be and why?”

If time travel were possible, I would speak with my grandmothers again.  Both were incredibly strong, independent women who lived loving, meaningful lives and shaped my family. They weren’t just in-laws, but friends.  They came from different backgrounds, but had a strong respect for one another.  I would set my time machine to travel back a decade so we could meet for lunch or play a game of cards.  It doesn’t really matter what we would do, as long as we would do it together.  I wish I had spent more time learning about about their experiences so I could share those stories with my children.  I’ll share a little about them now, and someday I can show this to my kids so they can learn a little about them, too.

gma hMy mother’s mother was Ruth (Leussenkamp) Hill.  She was a kind woman, her heart rooted in faith.  Her capacity for love and forgiveness was inspiring.  She was the glue that held her family together.  Every week we would meet at her kitchen table to play cards and eat.  She grew up poor.  My great-grandmother would often walk with her children along the railroad tracks to collect coal to heat the family home through the winter.  When she was a girl, a neighbor boy, Bob, taught her how to ride a bike.  Years later, they married and had seven children.  Bob was a police officer and money was tight.  At her funeral, a close friend and neighbor shared a story about Ruth:

Both women had households overrun by children and restricted by tight budgets.  That day they were reminiscing about when they first became friends.  My grandmother’s  friend suddenly exclaimed, “Why, Ruth! You finally made it!”  My grandmother’s quizzical expression prompted her friend to remind her of a conversation they had a few years before.  “Remember, you said when you had top sheets on your beds, you’d know you’d made it!  Well, you’ve got top sheets on your beds!”  The woman shared a laugh and agreed that they had indeed “made it.”  My grandmother was always counting her blessings.  When I am feeling discouraged, I think of this story, and count my blessings.

gma pMy father’s mother was Ruth (Lotz) Pakiela.  She grew up in Yonkers, New York.  She was the strong-willed, confident only child of hard-working restaurant owners.  She was a gifted story-teller with a flair for the dramatic.  She married Stanley Pakiela, a butcher who served in the Navy with Ruth’s father.

Stan moved her to Grand Rapids, Michigan.  It was a difficult adjustment for that big city girl.  I believe that if she were born in this day and age, she may not have had children or married; she might have chosen a life of adventure instead. However, she did not regret the choices she made.  When I unexpectedly became pregnant with Brady, I shared my concerns that I wasn’t ready to be a mother yet.   She confided in me that she probably never would have felt “ready” for children, but decided to become pregnant to force my grandfather to move her out of his mother’s house and into their own apartment.  My grandmother enjoyed working and did so well into her eighties, but she always felt her most important job was that of a mother and was extremely proud of the family she raised.

One of her favorite stories to tell was from her childhood.  When she was a girl, she had a small dog.  According to my grandma, this was one special dog!  There was an ice cream parlor next to her apartment.  Rather than go downstairs and walk to the ice cream parlor herself, Ruth trained the dog to do it for her.  She would tuck enough money into the dog’s collar for two ice creams.  When she opened the door to the apartment, the dog would take off down the stairs and out the door of the building.  The dog would travel down the block to the ice cream parlor, where the man behind the counter would call out a greeting.  The ice cream attendant would remove the money from the collar and place two ice creams in a small, brown, paper bag.  He would fold the top down several times and put it in the dog’s mouth.  She would delicately carry the bag back up the street, up the stairs and scratch on the door to be let in.  She never once ate the ice cream.  Upon delivering the ice cream, she would enjoy it with my grandmother.  There is some discussion among my family members as to whether this story is true, or if Grandma added a little “flair” to make it interesting.  Knowing Grandma, it was probably the later.

Indeed, if I could go back in time, I would make a record of all the stories they told me.  I wish I had paid more attention, so I could remember all of the details.  I wish I had asked for more!  If you have a story to share about them, I’d love to hear it.

Liebster Award: The Currency of Social Media

My next Liebster qualifying query asks: “Where is the value in social media and how do you fit into that role?”

I googled this, and found a lot of articles about marketing. I guess, if you are measuring value in only a monetary sense, that applies.

When I read the question though, I assumed it was about the value of social media to society. I think that’s a safe assumption considering it was posed by Bright Blue Line, which is definitely focused more on societal values than financial.

The most valuable aspect of social media is that it is revolutionary. It is a new and entirely different form of accessible communication. Social Media allows anyone to enact change. We saw it during the Egyptian Revolution. The R-word campaign owes a lot of it’s success to social media.

So far, this little blog has been viewed in SEVENTEEN countries. That a SAHM in West Michigan can be heard around the world is something no generation before ours has ever faced.  We have the opportunity to become a global community.

I’m still defining my role in social media, after all, I’ve just dipped my toe in. I hope my role will be, at the least, participant. I hope that I am one of many who will change the way people with Down syndrome are viewed. I hope that change in perception carries over to all people with disabilities, and then to all people. I hope that the medium allows us to meet and understand one another and to discover common ground. I know that I have already been changed by the people I have come to know through social media.

Photo credit: taolifestiudio.com

 

Liebster Award: Movies.

Bright Blue Line asked a couple of questions about movies.  Let me start by saying I LOVE MOVIES!  Well, really I love comedies and action films.  My time is valuable, and if I invest ninety minutes in something, it had better make me pee my pants laughing or jump our of my seat with excitement – if the credits roll and I am depressed, I’m throwing my Diet Coke at the screen.

What is your all-time favorite movie and why?

Having said all that, it is really hard to pick just one movie as my “favorite.”  I can’t make up my mind.  So I am cheating a little and sharing three of my favorite funny films:

Just Friends. As far as I’m concerned, Ryan Reynold’s should only make funny movies.  I never get sick of this.  So many 90’s references and every single person in this movie is hilarious – expecially Anna Faris.  Available on Amazon Instant Video.  Also, you can watch the entire move in youtube.  Shhhh!

Tucker & Dale vs. Evil.  Normally I dislike spoof movies.  I think they rely too much on fart jokes and boobs.  However, this movie breaks that stereotype.  It is a well-written, well-acted, funny horror spoof.   It’s available streaming on Amazon and Netflix.

Big Trouble.  Smart and funny.  Available on Amazon.

What’s your least favorite movie & how would you change it to make it great?

There are a lot of terrible movies out there.  Some are funny because they are so terrible, and some are not.  I think that my least favorite movies are probably the Twilight series.  I’ve seen the first two all the way through (painful).  They are bad for two basic reasons:

The first is terrible writing.  I really dislike that the movies (and I can only assume the books)  are entirely about making a difficult relationship work.  When I was sixteen, I would have totally loved that crap, but adult me knows it’s bull.  All of you who are about to post nasty comments, pay attention, because you probably need to hear this the most:

Love shouldn’t be difficult.  I’ve tried it both ways, and if you are really a good match, you shouldn’t have to “fight” for your love.  If you are struggling to keep your vampire or werewolf boyfriend, give it up.  I think anger and angst are often misconstrued as passion.  Find someone who you have more in common with.  You will be a lot happier.

I could look past that though, if the acting weren’t so terrible.  It is so hollow and wooden.  I was especially disappointed in Kristen Stewart.  Actually, she’s the only reason I even watched these movies.  She was brilliant in Speak, a movie adaptation of one of my favorite books, and I just can’t understand what happened between then and now.  Maybe Bella is supposed to be a robotic, unrelatable young woman, in which case: Way to go, Kristen Stewart – you acted the pants off of that one!

As for improving them…I don’t think it’s possible.  The very premise bothers me.  It reinforces the idea that we should settle for less than happy relationships.

Normally, I would never choose to write about movies. I love watching movies, but I am not good at explaining what I like or dislike about films, books, etc. I like that this question was posed, because I had to work at the answer.  

Liebster Award: When You Wish Upon A Mass Of Incandescent Gas…

I’m attempting to make one Liebster related post a day.  I must apologize; I really feel like the quality of my work is suffering because I can’t take the time to review and edit as much as I’d like.    I”m just really excited to get to my nominations!  

Bright Blue Line asked : “You are granted 1 wish (make it great, but it cannot be to have 9 more wishes), what is that special wish?”

Really, I’m not a big fan of wishing.  I don’t believe that if I see a shooting star or throw a penny in a fountain that whatever I wish will magically come to fruition.  I also don’t think it’s a good use of my time to sit around fantasizing.  No, I  prefer acting.  If I want something, the most probable way to make it so is to take active steps towards achieving my goals. Some people like to believe in magic, and that’s fine with me – I’m just not one of those people.  Since this is a hypothetical question…

20130425-222829.jpgOnce, I was watching a documentary and I heard a parent of a gay child say that she wished her child weren’t gay – not because she thought it was wrong, but because being gay would make her child’s life harder. I had similar thoughts when I received Evelyn’s diagnosis. Truthfully, I did feel something was “wrong” with her, and I believe that mother thought something was “wrong” with her son. Both of us were mistaken and were making short sighted wishes. Her child’s sexuality was part of who he was, just as Evelyn’s Down syndrome is part of who she is.  I love Evelyn as she is, Down syndrome and all.   

Therefore, I wish for acceptance and appreciation for all of the intricacies and nuances of each human being. Seems pretty big unless you think about taking one step at a time – opening one mind at a time. Besides, with your help, my wish will come true much faster.