Are You a Sponge or a Honey Badger?

I would say that overall, I tend to be a positive and happy person.  I mean, come on-- the name of this blog is "Cowgirl Up!" which means that when life throws you off your horse, you have to dust off your jeans and get back on-- you know, you have to Cowgirl Up!  Last week we celebrated World Down Syndrome Day and it was amazing.  I would have written sooner, but life has been getting me down.  I mean down.  Down down.  Then I never know-- should I share these down moments or do I suck it up and move on?

The Sponge

This is where the Sponge versus the Honey Badger comes in.  One of my dearest and most wonderful friends in the world, Kelly Lee, once told me that we were both "sponges."  Only she said it in her super cute Southern accent like, "Gin, we are sponges." Gin is the Southern version of Jen and it sounds best when Kelly Lee says it.  It was an Ah-ha moment.  A sponge!  That is exactly what we are.  We soak up what is going on around us and take it to heart.  

Aren't these cute sponges? You can buy them here.

Being a sponge is hard work.  Wanting to save the world and make a change can be overwhelming and for some reason when it starts to get to be too much it all happens at once.  I remember being so overwhelmed by all the sickness and pain in the hospital after Joey's heart surgery.  It really got to me and I didn't know how to deal with it.  My mom told me to never lose that empathy and I've tried to keep that in mind.  Empathy and compassion are what makes us humans.  It is what makes us stand up for what is right and fight was is wrong. 

Having a son with Down syndrome is not what has been making down.  In fact, Joey does just the opposite.  He and his brother raise my spirits and give me a reason to try and do my best every day.   Joey inspires and awes me with his tenacity and his impervious attitude toward the world around him that wants to know why he can't stand up on his own, why he doesn't say more words or why he isn't able to walk, yet.  It doesn't bother Big Joe, so why should it bother me?

What gets to me sometimes is convincing the rest of the world of Joey's abilities and of his value.  Trying to convince them to see him as a person first-- not just a disability.

I would also like to preface this with the fact that we are really, really grateful for the majority of doctors, nurses, therapists and medical personnel who make Joey's life and our lives so much better. That being said, because of the inordinate amount of appointments and medical personnel we see, we tend to also sometimes have some, ahem, not so positive experiences.

"Downs Kids"

Last week I double booked the boys at a new medical treatment center (that's a nice generic description, right?). I specifically booked them with a particular physician (or so I thought) at the recommendation of another physician.  Confused?  I am too.  The appointment was a hot mess from the word go.  After filling out 8 pages of forms we finally made into an office where we were interrogated as to whether or not we'd be paying cash for our dental appointment (oops--not so generic) since we do not have dental insurance (stated loudly to the entire waiting room).  They also wanted my social security number as well as my husband's and I politely refused.  This was seriously going to hell in a hand basket pretty quick.  I assured them that the appointment would be paid for in full despite the fact that we do not have dental insurance.  That was right around the point when Joey started to projectile vomit, which is his signature move when he has aspirated on something.  Not kidding.  Projectile vomit.  That was bad enough, but then he started to choke on his vomit, turn blue, cry and eyes started rolling back all at once.  Nightmare.  Then the woman who wanted my cash/social security number/first born proceeded to sit calmly across the desk from me while our show was going on.  Finally she asked if I needed anything.  Um, yes, please.  A do-over perhaps?  A cocktail?  I just asked for maybe a tissue to try and repair our vomit covered outfits (not a wet-wipe to be found on me-- my own fault--it was that random 80 degree day and I was sweating from head to toe).  

When I thought things couldn't get worse we get back to the chair and find out that because Joey has a leaking mitral valve and a patch on his heart from his heart surgery, he can't actually get his teeth cleaned because he is at risk for endocarditis and will need to be on antibiotics before any procedures...for...the..rest..of..his..life.  Not a big deal.  Just not what we needed on that particular day.  Tommy was able to get his teeth cleaned and we were told by the doctor (not the one we had made an appointment with, but some other doctor) that Tommy needed to lose his "dog-dog" lovey and stop sucking on his fingers.  I get the fingers.  I really do.  But "dog-dog"?  Really?? REALLY?????  I THOUGHT WE SIGNED UP FOR A DENTAL APPOINTMENT AND NOT A PARENTING CLASS!!!!

Surely this torture session was over.  The doctor wanted to take a look at Joey, so I (foolishly-- oh so foolishly) let him sit in the chair.  BIG MISTAKE!!!  The minute you let your kid sit in the chair-- THEY WILL CHARGE YOU!!!!  The doctor counted (not kidding--counted all 12 of his teeth) and then we were charged $62 for a "complete oral exam".  The doctor then went on to tell me all about "Downs" kids.  Here is the sponge part.  I try to be impervious, like Joey, and ignore it when people use what we call the "short cut" and say "Downs" kids or "Downs" babies instead of people who have Down syndrome or a child with Down syndrome.  I've really tried to get a thicker skin.  As much as I am a huge advocate for People First language, which recognizes the person first as an individual and not just a disability, I am also trying to learn to pick my battles and give a little grace to people who may not know that People First language is preferable.  But here is how it went down, "Well, Downs kids have strange teeth.  Downs kids' teeth come in out of order.  Downs kids may not get all of their teeth.  Downs kids may need implants."  And on and on and on.  Ugh.  $62 for that.  Well-- $62 for that helpful information, but $195 for the entire appointment.  I was soaking it all in and getting angrier and angrier by the minute.  Now-- I will say I learned a token of good information from this hellish appointment, "Downs kids don't usually get very many cavities."  There you go-- Cowgirl Up!  One last thing-- this appointment was on World Down Syndrome Day-- just saying-- the irony, oh, the irony. 

Boys-- let's go to Starbucks and do a little caffeine therapy for Mama.

OWL

The next day, Joey and I headed off to another appointment with a medical professional that we have not seen in about three months.  I pushed Joey in his stroller and started to get situated.  First question, "Is he walking yet?"  Um.  Well.  No.  He's not walking.  He's not standing independently.  He's not pulling up on anything.  He's got this crazy arm/toe combination army crawl thing down, though.  

Then came the questions about what words he is saying.   There aren't a whole lot of words, but we usually know what he wants or is feeling.  "So he hasn't made in progress in his language."  That is totally not what I said.  I feel like he has made a lot of progress!  He's got vowel sounds, "k" sound, "n" sound, "b" sound, kind of "th" sound.  He can sign "more" and wave hello and goodbye.  He puts his arms up when he wants picked up.  

Super Joe can also do these crazy Baby Planks where he is on his toes and hands!

I'm not sure what was going on, but this particular medical professional had a visiting RN in our appointment I started to get the impression that she was trying to show off for the RN.  When Joey wouldn't spoon feed himself she said, "Well you are just a spoiled boy, aren't you."  Ouch. Loved?  Absolutely.  Spoiled?  Maybe.  But the thing is, if you just give him a little bit longer than a second, if you stop and wait a moment, he will usually do it.  That is one of the most valuable things I learned from our amazing Language/Speech therapist--OWL.  Observe.  Wait.  Listen.  The middle one-- the Wait-- is the most important.  The thing is, sometimes things just take our little lovebug a little bit longer.  The waiting is the hard part.  It can seem like forever.  Like a pregnant pause, but longer.  So long, that you almost want to give up and then it clicks.  

The Honey Badger

What does any of this have to do with a Honey Badger?  Have you ever even heard of a Honey Badger?  According to Wiki, they are "notoriously fearless and tough animals" who are tireless in combat and will attack animals much larger than them.  Their incredibly thick skin makes it difficult for other animals to bite it and penetrate it.  Can you imagine?  To have such an incredibly thick skin!!!  I am so envious!

The Honey Badger is a new marital joke in our family.  The good thing is that while I am a Sponge, I am married to a Honey Badger.  I told Tom about the doctor who kept saying "Downs kids" and he deadpans back to me, "Well, honey, it's so much shorter."  He said it with his glint is in eyes knowing that I need a little humor to calm me down.  I tell him about the medical professional who called Joey "spoiled" and he says, "I thought you were going to quit seeing that person because those appointments aren't helping Joey at all."  He's right.  He always is.  He is our Honey Badger.  Because, guess what-- the Honey Badger don't care!

Have you seen the video?  Just a warning-- it is mostly "R" rated for animal violence and language, but my goodness, it gives me a good laugh and helps me feel braver.  I so very much desire to be more like a Honey Badger and less like a sponge.  If you are offended by curse words, you may not want to watch, but if you need a good laugh, you may really want to watch.  

So, in our house we co-exist in our Ying and Yang state of being where I am a Sponge and my dear husband is our resident Honey Badger.  

When the pains of the world get to be too much to bear I turn to him and his strength.  

Say a Little Prayer

Last week I learned that a women in her early 30's who has Down syndrome and is the niece of the kind woman at Tommy's gymnastics was in the hospital and is now on a feeding tube and has a tracheotomy because her pneumonia took a turn for the worse.  This just eats me up.  Please say a prayer for "A". 

Then I learned that our dear friend from church, who is also a women in her early 30's who has Down syndrome, has a dual diagnosis of Down syndrome and schizophrenia.  This too eats me up.  Her parents are such incredible people.  So calm.  So kind to our boys when they are wild in church and their daughter, I'll just call her "D" to maintain her privacy, is such a joy to get to go to church with.  She hugs me every week, kisses me on the face and calls me her favorite friend.  My heart aches that she is also living with schizophrenia.  Please say a prayer for "D". 

Finally there is the big C.  The C that all parents who have a child with Down syndrome worry about deep in the back of their mind and heart.  Cancer.  While people who have Down syndrome may not have a very high chance of getting cavities, there is a much higher risk than the regular population of getting Cancer.  Right now, there is a precious little boy, Oliver, who is battling leukemia (AML).  He has been in the hospital since February and will be there for at least six months receiving treatments and fighting the leukemia.  I honestly can't really talk or write about Oliver for more than a few seconds before my eyes tear up and my nose twitches and I try to fight back tears.  Tears for dear Oliver.  Tears for what his family is going through.  Tears for all of those precious kids fighting cancer.  You can read more about his story here.

One of our own blogging mama's is doing her best to help find a cure for childhood leukemia.  Meriah, over at With a Little Moxie is training for a half marathon to help raise awareness and funds to fight cancer.  This is what I think of Meriah, even though this is what she sent me as a thank you for our donation:

Super Meriah!!!

Oh, and did I mention that this is Meriah's first half marathon and oh, by the way, she is pregnant.  YOU GO GIRL!!!!  Here is her story.

If you would like to donate to Meriah's team on behalf of Oliver, please visit here.  Please say a prayer for Oliver and also one for Meriah's journey.

Was this a long-winded, slightly off track, rambling post today?  It was and I apologize.  I'm going to go read a few pages of "Bossypants" (thank you, Shannon!!!  I need some humor!) before bed.

Before you go to bed, ask yourself-- are you a Sponge or are you a Honey Badger?

3.7.12 - Is The R-Word Just A Word, Or Is It A Reflection Of Intolerance In Our World?

Today is March 7, 2012, which is the Spread the Word to End the Word Day.  If you haven't done so, you can visit here to take the pledge to stop the use of the R-word.


This is cross-post from our website called The R-Word Reporter, which is meant to be a place of education, awareness and empowerment.


We hope you will consider, even if you don't understand, our passion about this. 

Happy Wednesday!

The reason I started The R-Word Reporter was because we attend a lot of movies and I was tired of hearing the R-word ("retarded" for those who do not know) used consistently in many of the movies we were paying money to go and see.  I searched high and low on the internet for a place to try and find out whether or not the R-word was used and in which films. Unfortunately, I never found such a place and decided that it would be nice to have a place where I could compile this type of information for our family and for others who are also offended by the casual use of the R-word in pop culture.


The purpose of The R-Word Reporter is to empower consumers like you and I to make informed entertainment decisions. To provide us with knowledge and information before we take our families to see a movie, watch a television show, read a book or even listen to a song.  This is not meant to be a place to create boycotts.  This is not a place of hostility or anger. It is meant to be a place to provide knowledge, education, consumer choice and hopefully social change.  


Some people say, "It's just art and you shouldn't try to interfere with creativity."  Other people say, "It's just a word."  And still others say, "It's not real life, so it shouldn't bother you."


There are others who say they are offended when they hear a celebrity or someone else use the R-word in an "off the cuff" manner, but not when they hear it in a movie or a television show.


My personal stance on this aspect is that as humans we sometimes mess up.  We sometimes use words that are not the kindest or the best choice.  We sometimes speak before we think.  While I really hate hearing people casually use the R-word to describe themselves or something else, I also have no ill-will towards people who use the word without thinking and then feel bad for using it. 


What does concern me with the excessive use of the R-word in pop culture (ie: songs, movies, books, tv) is that it takes premeditation and forethought to use the R-word in such contexts.  Also-- when a character uses the R-word in a movie or television show, it just puts that word back into common lexicon and makes it appear "okay" to use that word.  Using it to "develop" a character or show a character's flaws is really not justified, in my opinion.  There are many, many other words that can be used and I have yet to see a film in which the R-word is used in a kind, meaningful or even an educational manner.


So we ask, why is it still socially acceptable to still use the R-word?  Is it because, as a society, we fear differences?  Is it because we don't know how to interact and live side by side with individuals who might be a little slower in their speech?  Is it because we fear that by campaigning for the respect of individuals with intellectual disabilities that we might somehow be associated with them?  What exactly is it?  Why doesn't our society, as a whole, stand up for individuals who have a disability and fight for them and advocate for them wholeheartedly?


Why is it okay to make fun of people who have an intellectual disability?  Why is it okay to call someone a "retard" in a movie or in a book?  Why are the n-word and the f-word no longer socially acceptable, but the r-word is?  Why is that?  


I would be remiss in saying that this group of individuals who have been called "retarded" can't stand up for themselves, because that is simply not true.  But-- this group is still a group that society, as a whole, seems to think is okay to bully, to pick on and to label with a hateful word-- the R-word.


My last post on "The Grey" stirred up some interesting comments.  And by interesting, I actually mean hurtful, hateful, angry and somewhat scary comments.  I really had to think hard about moving forward with this blog.  I had to give myself a serious pep talk about getting a thick skin and not being afraid of such statements as the following that were left in the comments:


"Blogs like these border on being overzealous and actually are going to make people that are on the fence decide that this cause is going too far & turn them off to doing what is right."

"Mentally Retarded is the official clinical name for the disorder.  If you can't handle that, you might as well jump off a bridge, because the medical association has no such qualms about calling it what it is, mostly because they're not a bunch of fragile, hand-holding helicopter parents.  There are people starving to death in the streets of our own country, and you're worried about a dubiously offensive term? Get real. Grow up. Welcome to life."


"This whole movement is utterly ridiculous, it isn't the mentally disabled that are offended or marginalized by the "r-word," its the self-righteous parents and other bored, humorless, politically correct suburban housewives who desperately need a cause to champion in order to make their lives seem worthwhile." 

On the other side, were some incredibly supportive and inspiring comments that helped me realize that there are many, many others out there who would also like to see the use of the R-word disappear: 

"Ultimately the culture we live is a cycle, culture affects art, art affects culture. We are just doing our part to affect it. Silly? I don't think so. Naive to think we can affect it without a fight? yep. But I will make my silly effort none the less."

"In response to Anonymous, I would just say I am 33 years old, and have said many things in my life that I regret saying. Sometimes I would regret it as it was coming out of my mouth, other times I was just not aware that I was hurting anyone and felt terrible later when it was pointed out to me. Now as a parent of 3 beautiful children, one who happened to be born with T21, hearing the r-word cuts through my being like I have just been tazed. This stunned feeling is then followed by rage, which I would assume is a protection response like a lion to its cub. I am not uber PC or any crazed polictical fanatic on either side, I am just aware now that these words (whether used with malice or just as an emphatic descriptor, not having anything to do with a disability) hurt those who have the disability and their loved ones, who are only trying to protect their own from unnecessary ridicule."

"I love this site as it gives a chance to educate so many. I love to talk about the power of the R word. I also would love to take responsibility for giving it power because that also might mean I could get that power back. But unfortunately none of us can do that so easily. We did however come together recently when the power of that word was used to deny a child an organ she needed to live. Yep, we all got together and said NO! You can not use the power of that word to say this child has less value than another. So if some think we are over zealous then I say we have every right to be. This unfortunately is the power of that word.  And, if a movie takes you away from the movie, from the character, then the movie did a bad job. Editors spend hours combing footage for any inconsistency that might make us the viewer "leave" the film. When this word is said, overzealous or not I "leave" the film. I hear nothing but that word for the rest of the film. So many of us are just trying to say we do want the power of that word back. We do want you to be respectful Mr. Producer and let us enjoy your film too."

"Dear Anonymous, 
We don't need to get real as we already are very very real. Nor do we need to grow up - we are very grown up. And above all else, we already do welcome life and have no intention of jumping off a bridge no matter how difficult life gets. Some studies suggest that the mental stress of parenting a child with a disability is comparable to the mental stress of combat. That doesn't sound like fragility to me. That sounds incredibly tough.You are right though, we do tend to reach out our hands to hold onto each other.But, I am thinking that perhaps you meant "hand-wringing" instead? Well, we don't have time to sit around and wring our hands do we? If you knew anything about parenting a child with a disability you would know that much of what we do is work towards the day our children can live independently in a community that welcomes and supports them. We don't want to hover over them forever, as your helicopter parent term suggests. We are working together to make life(as in the world) a better (some would say a more welcoming!) place for our children to grow up in, free of discrimination, prejudice and hatred that is well-documented throughout history towards people with intellectual disabilities. While that sounds like a tall order, I would also like to say that we are also quite prepared take on people like you who would belittle and ridicule our efforts. And just so you know, there is nothing dubious about the offensiveness of the word retard. It IS offensive. So, Anonymous, what are YOU doing to make the world a better place?"


"I am all for free speech, but it ends when you mock a defenseless human being. The "R" word does just that, despite the defenses people throw at you for it's use. A word of advice to you people that use it, educate yourselves, then step back & think how you would feel being on the receiving end. Then find a cause & start helping & supporting people that are of different needs than yours. It feels really good!"


"YES!!!Finally a great coverage on this subject of the R-word being used in movies, TV series in productions. I have a son with Down syndrome who is totally devastated every time he sees or hears the use of the R-word in a movie he's spent his hard earned money on. When we see a theater showing a movie which uses the R-word in it he asks me to go meet with the manager of the theater so he can tell them not to show that movie. He's passionate about getting writers, producers, actors to listen to the pain and suffering they cause by the use of it in their productions just so they can have monetary gain to add to their millions they already have. Our children with disabilities and low income spend a fortune on movies, music, and numerous hours in front of the TV because they have no other escape since many of them don't drive or have friends who pick them up and take them out. It isn't just Hollywood that feels it's OK to use such hurtful word in their productions believe it or not even the closest family members like fathers or mothers or siblings etc make excuses when they hear the R-word used. Stop making excuses people!! Our lives are difficult enough raising our disabled children with self esteem, confidence, and happy why should you make it harder for us by tearing them down with the use of such cruel word. It's damaging so stop it already!"


Dear Readers-- those are your words and thoughts.  You have spoken and so we move forward.  I have been gathering a wonderful resource list of movies, shows, books and even songs that use the R-word and will be posting it in the near future. If you would like to add anything, please email it to me or leave it in the comments.  


In the meantime, here is part of the very personal reason I am so passionate against the use of the R-word in pop culture and society.  


In 2010 we were pregnant and found out at 13 weeks into the pregnancy that our son had a septated cystic hygroma, hydrops (ie: fluid) around his heart and body and approximately a 2% chance of surviving.  We then found out about a week later that he also had an extra 21st chromosome-- also known as Down syndrome.

Throughout the pregnancy we later learned that he had a large hole in his heart that would need surgically repaired.   In the last trimester he developed ascites (a fluid build up) on his abdomen.  His birth was a miracle for our family. 

During his first year of life, Joey wore a helmet to correct a flat spot on his skull.

When he was 9-months old he survived open heart surgery.

He is an incredible little boy who brings joy and delight to everyone who meets him.  


Every single day he works harder than the day before to do the things that you and I might take for granted like eating, drinking, crawling, talking and hopefully one day walking without gait-trainers. 

During our pregnancy and now through Joey's life, I have learned that that R-word is commonly used to describe people who might be considered intellectually slow or not as intelligent as other people.  We have also learned that it is a word that many people use to describe individuals who happened to be born with an extra chromosome and have Down syndrome.  Through every struggle and milestone our son faces, I take more seriously the use of the R-word because of the amazing spirit and attitude our son has towards life.  I dread the day when he is old enough to realize that when some people use the word "retarded", they are possibly talking about him. 

Because of him, I now know how hurtful the R-word can be.  Because of him, I have learned that he is in no way retarded. He might learn to do things slower than his "typical" friends and peers.  He might start crawling and walking at an older age.  


But his heart is the size of the sun and his spirit the size of the universe.  


This baby boy is in no single way what some elements of our society consider a "retard". 

Because of him, I am passionate about educating and spreading awareness about Down syndrome and about the use of the R-word.

Because of him, I am working on becoming better person, mom, wife and friend.

Who makes you a better person?  Would you do anything for them?  


Please join us today to help celebrate and pledge to Spread the Word to End the Word. 

Forward Motion - Directed by: Tommy

I was trying to get Joey's Army crawling on video when Tommy took over.  I think he did a much better job. . .


Be warned that if you get motion sick, this might not be the video for you.

My version. . .

A Week In An Instagram - and Stonz Booties

The little booties that Joey has on are called Stonz Booties-- a company out of Canada.  His cousin had a pair and they looked so cute I had to get him some.  You can wear them over shoes and with or without the liner.

They also have amazing mittens that completely stay on.  I bought mittens for both boys.

It's Not Okay - A Lesson in Setting Boundaries

The past year has been one continued learning experience.  Just when I think I have my feet solidly under me, they get knocked out when I least expect it.  Since first receiving Joey's diagnosis of having Down syndrome at 13 weeks into the pregnancy via a CVS, I have spent most of my time trying to become okay with the diagnosis.  To accept it.  Now I'm at a place where I don't "see" that Joey has Down syndrome.  I just see Joey.  A little boy who had open heart surgery.  A little boy who works extra hard to learn to sit up.  To learn to swallow.  To learn to speak.  A little boy who gives my life meaning every single day.

There are days when I get sad or wonder if I am doing everything I can for him, but I don't regret his life or his diagnosis.  His diagnosis and his life has actually made me a better person.  His diagnosis has made me enjoy life more.  His diagnosis has helped sharpen the lens that I look at life through.


I try to be very open and non-judgmental when people ask about Joey.  It can be hard.  I don't want to live with my guard up all the time.  I don't want to be defensive and take harmless comments the wrong way.  I want to respond kindly and from a loving place instead of with anger and from a place of fear. 


On the other hand, I want to be Joey's advocate.  I want to be an advocate for Down syndrome.  I want to be a mama bear.  I want to protect him and anyone else who has Down syndrome.  


It is a thin line to walk.  It is a thin line that is ever evolving and changing.


I want to be a voice that is heard because it is calm, clear and reasonable.  I want to be a voice that is measured, but passionate.  


This reason I bring this is up is because of a pretty intense encounter I had a few days ago.  I had to take some time to digest what happened.  I had to take some time to try and find the deeper meaning.  To figure out why this particular encounter happened to me.  To see if there was some way I could make it into something more positive because by the time it was over, I was wiped out.  I wanted to go home and crawl into bed for the entire weekend.  It knocked me cold off my feet and as it happened it was so surreal.  I kept thinking to myself, "How do I get out of here?  How do I make this person stop talking?"


Here's the deal.  Words are powerful, powerful, powerful. To quote Mark Twain (saw this quote on Nuts About Nathan's blog): ”The difference between the right word and the almost right word is the difference between lightning and the lightning bug.”

Last week I was in a social setting and talking to a person who is an OBGYN.  This person started asking me about the kids.  Then they started asking me about Joey.  Some rather pointed and personal questions.  Whenever one of these conversations start, I never know exactly where they will head.  Will it be a quick and lighthearted talk?  Will it go deeper into questions about Joey's health.  Will they ask me about the severity of his Down syndrome (no joke-- was asked how sever his Down syndrome was while he was still in utero)?  Will they tell me he has lost that "Down's" appearance (no joke-- this just happened today, a medical professional that we see actually told me that since they last saw Joey he has lost a lot of "that Down's appearance"-- I still don't know exactly what that means)?  This is what makes it tough.  I want to have an open heart and an open mind.  I want to be patient.  I want to help educate and not make people feel ashamed or ignorant when they ask questions.


What I know for sure now is that there are lines that are no longer okay with me to cross.  There are things that I am not going to talk about with a fake smile plastered on.  There are mis-statements that I am no longer going to let slip.  I pray for the strength, grace and courage to respond in these situations with a loving heart and without anger.


This particular conversation....with an OBGYN (not my OBGYN, but a professional OBGYN) went along these lines.


Them, "Did you know about the Down syndrome diagnosis before you had him?"


Me, "Yes."


Them,  "Oh, they are such happy people.  I really admire you for keeping the baby.  When I was a resident we performed terminations all the time without even thinking about it.  I performed one on a Down syndrome baby who was 20 weeks old.  I'll never forget that he was this perfect baby who was struggling to breath.  I never performed another one after that."


Me (in my head)---about to pass out.  In total shock.  Wanting to go crawl in bed and not get out for a few days.  Trying to erase the mental image a perfect, innocent baby struggling to breath.  Being killed for having an extra chromosome.  I thought I was going to vomit.


Then these words came out of my mouth and I still don't know how I was even able to speak, "You know, if you ever have a family who delivers a baby who has Down syndrome and they say that they cannot keep the child or deal with the diagnosis of Down syndrome, I hope that you will call me immediately.  We would adopt that child in a second.  Without a second thought.  Please tell your partners in your practice the same thing."


Them....looking shocked, "Really?  You would take another?  You know most of them are terminated during the pregnancy."


Me, "We would give that baby a home immediately."


Somehow I found a way to leave after this last part of the conversation and the minute I got safely inside my car I crumpled into a pile of tears.  Hyperventilating tears.  My heart twisted in knots and I just drove because I didn't want to get home too fast and have my two little guys see Mommy so upset.  


I called a family who lives near us and who's 29-year-old son has Down syndrome.  I just need to talk to someone who has faced this kind of ignorance.  Someone who has had to endure these types of invasive conversations.  The words of advice were heartfelt.  I have a new response to when someone tells me that people who have Down syndrome are "so happy".  I will tell them the truth.  I will tell them it's a myth.  


As far as conversations about abortion--well, I just hope I never have to go through that again.  In the future, if such a painful conversation comes up I have promised myself to ask the person to please stop and to tell them that I don't want to hear anymore.


However, in this case.  As angry as I was at this person and as much as I could not understand why they would ever in a million years feel the need to say such things to me, I believe in my heart of hearts that his person was confessing.  As painful as it was for me to hear about these terminations of babies, I cannot imagine being the person who was doing it.  To live with that guilt is more than I can imagine.  


What's even more scary is that there are medical companies who are busy working on diagnosing chromosomal differences (they would probably call them "defects") earlier and earlier in pregnancy.  The purposes of these new non-invasive testing methods is to provide termination options earlier and earlier in pregnancies.  What does this mean for Joey?  What does this mean for all of us?  It's a slippery slope, my friends.  One day Down syndrome is deemed not worthy of life, when is it going to be farsightedness?  Cancer?  Alzheimer's?  *For an excellent discussion on the ethics of this type of testing, see Barbara Simpson's Article "Hitler Would Love It."


Did the doctor who told me all of this want me to admire them for not performing more terminations after the last one where the baby who had Down syndrome was struggling for his last breath of life?  Did they want me to know that they had committed these crimes against humanity, but that they now know it is wrong?  It took me a little bit of time, but that is what I've chalked this encounter up to.  A confession.  


It's an encounter that was painful and that tore me apart.  BUT-- it did give me more cause to address the absolutely ridiculous rate of babies who have Down syndrome who are aborted just because they have one extra chromosome.  Just because they are not what society deems to be "perfect children".  Just because they may have some extra medical issues.  This encounter actually empowered me to establish some ground rules for myself and to really think about when I need to say, "It's not okay."

• It's not okay to lump everyone who has Down syndrome into one stereotype of "happy people". As parents of a child with Down syndrome, we hear this about once a week, if not more.  As if being "happy" all the time takes away the pain of knowing our children will have to fight extra hard to be accepted by society and to be accepted as individuals.  Let me tell you.  It does not make any of us feel better and it is a complete myth.

• It's not okay to terminate a baby just because they have Down syndrome.

• It's not okay to tell someone that it is "admirable" that they did not terminate their pregnancy once they knew their baby had Down syndrome.  What kind of world do we live in where people find it admirable to keep a baby who has some medical issues?  As any parent will tell you, no child comes with any sort of guarantee.  There is also no such thing as a "perfect" person.  

• It's not okay to tell me that you used to medically abort babies who had Down syndrome, but that you don't do that anymore.

• It's not okay to selectively choose who gets to live and die because of their genetic make-up.  We've lived through that kind of historical precedence.  Just read a little about Hitler and his Action T4, which was the name for Nazi Germany's eugenics-based euthanasia program during which physicians killed approximately 200,000 mentally or physically handicapped individuals.   

Those are my new boundaries and this beautiful little boy is worth setting them.

Somewhere Over the Rainbow - Joey's 1st Birthday

The tent arrived on Thursday.  Oz and the yellow brick road came on Friday.  The cake was delivered early Saturday morning.  Throughout the week the party came to life and we stayed up nightly until 1 and 2 in the morning getting everything ready.  But it was fun-- it was great!  We have so much to celebrate and so much to be grateful for.  

The rainbow arrived shortly after the Jump Jump.

Then Mark Difeo arrived with our Munchkin Sandwiches, Lion Lollipop Wings, Scarecrow Salads and more.  

Eventually we had to put up a giant sign that said NO KIDS to the punch.

Finally, only minutes before the party began, Doug from Personal Creations delivered the Tin Man, Scarecrow and Cowardly Lion.  

Then, on what could not have been a more beautiful day, Tom, my Mom and Dad, Tom's Mom and I worked like busy bees from sun up until party time at 4pm to make sure our little warrior, Joey, had an awesome celebration of his triumphs and of his first year of life.  After an incredibly long, but magical day, my parents stayed and helped us pick up every stray lollipop stick until about 1am.  Joey and Tommy have some awesome grandparents!!

Centerpieces of lollipops, bobble heads and lollipop bouquets.

Glinda the Good Witch's Craft Table

Flying Monkeys for every child.  From Office Playground. 

We had been warned that Joey would be different.  That he would have low tone.  That he might not hear very well.  That he would have lots of respiratory issues.  That he would have vision problems. That he would have cognitive issues.  That he would feeding issues.  


What someone forgot to mention was how incredibly fun and awesome he would be.  How every single triumph is that much sweeter.  That while he does have a number of the above mentioned "issues" we try not to dwell on the "what ifs" or the "most like-lies".  We try to live in the here and now and celebrate his incredible little life that has brought joy, pride and immeasurable happiness.


No one told us that family and friends would not only support, but love this little guy as much as we do.  After we had Joey I thought for sure we would never be invited to go anywhere and that we would never get together with all of our friends and kids.  Instead, the opposite has happened, our friends and family have embraced Joey more than we ever imagined.  He has been accepted.  Loved.  We couldn't ask for more and so we celebrated his first year and thanked everyone who has been there along the journey.

Dorothy's shoes made a quick appearance...

Hmmmm...maybe we should put the life-like ax away?

The last of the slippery ruby slippers-- made of Red Jello

LoLo and Catie 

Ummm... Miss Ella-- girl, you are rocking those shoes!!!!

Marty Draime created a piece of art that was, at the end of the day, painful for me to cut.  But, there was a throng of hungry children who were not so sentimental about the cake and who was I to stand in their way?

Baby boy LOVED his first bites of birthday cake.

And after the cake, the party kept going in full swing as children batted down the pinata and adults lost track of how many lollipops their little ones had consumed in only a couple short hours.

Casey and Conner-- from the 3rd 21st!

By the time the party was over, Tom was putting Joey to bed and I was hanging out with my parents cleaning up, but before we said good-bye to the Jump Jump, Thomas Henry and I got in together for one last jump as we sang "Ding Dong the Witch is Dead."  There's no place like home.