The best day!

I'm having the best day so far! Dan and I are both off today so we are having family day!

Owen had PT this morning which went well. Then, we took Owen to the Barnes & Noble where he walked out with a brand new Thomas the Train magnet book! To be totally honest with you, I loathe Thomas.

Am I the only one who finds all the Thomas story lines complete snoozers? Sheesh! What is the fun in reading about a train on his daily schedule? I think the most exciting thing that has happened to Thomas was when a log on the track screwed him for about 2 seconds, then he was back to his same old boring schedule. Also, one of the trains - I can't remember which one - is a total dick! I don't need that kind of negativity around my son. One more thing...Sir Topham Hatt? Could you have come up with a more difficult name to pronounce especially for a 2 year old? Might as well have named him Eioapnakbn Poaypruawedjralsdj (I apologize if this is your name and I have offended you). Whew! As usual...I digress....

Lunch was at Halo Burger and Owen had a blast in the play area and was extrordinarily cute. He was making friends with all the other kids.

When we got home, we laid in bed and he cuddled with us which he NEVER does. He was also very kissy. He never gives kisses without being asked but today, he wouldn't stop planting them on me! I loved it! My little cuddly Owen!

So that's our day so far. Owen's outside with Dan who will be grilling us steak for dinner. AND! To top it all off - Lost is on tonight!!!

Oh, my god... I just wrote the most boring post ever. Really?! Was it totally necessary for me to log on my computer and tell you about the totally mundane day I am having? Yikes! Well I hope I at least stirred some emotion with my Thomas rant. Ok, I'll try to do better next time!

Counseling the Counselers

I'm starting to get a little annoyed with blogger.com. Does anyone else find it tedious to use? Maybe I'm just saying that because Facebook is so easy. Anyways, that's not the point....

I have about 4 post that I want to write. Hmm..where to start....

I'll start with this week and work my way back. It'll be like a crazy time- traveling blog. Where's Michael J. Fox when you need him? Hello? McFly?

This week I had the opportunity to participate in something exciting. Sarah L, Kaela's mom (and one of my favorite people) and I were asked to speak to a small group of grad students in genetic counseling at U of M Ann Arbor. We were there to offer our persepective as parents of little people (POLP). We were also joined by Stacie, LPA member and little person who relayed her experience as a LP and a POLP. LOL! That's a lot of acronyms I should remove ASAP! J/K! Whoa! Outta control!

This was a very theraputic experience for me. If you are familiar with our story, you know that Owen was given no chance to live after his birth. No alternative scenarios were offered, no hope was given, we were told point blank that Owen would die.

As time passes and Owen progresses into a healthy happy boy, the anger as to how we were handled builds. The more I think about the fact that I was offered no hope that Owen would live, the more I want gather my doctors in a room and really let them have it!

So when I was give the chance to speak to people who may potentially have the same impact on other couples - I jumped at the chance. Despite what you are probably thinking, no - I did not unleash my pent up anger on a poor group of genetic counseling grad students!

Sarah and I were able to tell our stories and offer our opinions on what to do and not to do. We both felt that it was important to be sympathetic & honest. We also wanted them to keep in mind that though patients will pass in and out of their office, this is our life. Don't numb yourself to our plight because you have seen it all. To me it's very important that they always allow for the possibility that anything can happen.

These students were very bright and eager to learn. I'm sure they will be the type of counselers that will make a positive impact. I very much appreciated being able to relay my story. It was touching that they were interested in having our perspective. It made me think (which I hate to do but I went with it)...do med school students ever get patient perspective before they are unleashed into the wild? If the answer is no then - why not? All doctors should be required to attend a class where patients are able to give their sides of the story. I've been lucky enough to generally have great doctors, but I know that there are plenty of horror stories out there. Hmmm...just a thought.
Ok - well I'll leave you with some Owen pictures for your viewing pleasure!

What's up? You wanna go?
George always has my back
George and Owen in a staring contest. Guess who wins?
I'm just messing around!
I love kitty!
Like son, like father

Go ahead...ask!

The older Owen gets, the more noticable his stature becomes. I can tell that more frequently, people notice his size. Other parents of little people - you know what I'm talking about. There is a certain way that people look at him, point him out and whisper to their partners ("Look at that little guy!") that signifies curiosity as to why he is so small.

I am not however, objective to how Owen looks, so I am not sure what people see. Do they see the dwarfism or does he just look too young (small) to be walking and talking? All I know is that people seem to think that Owen is super cute (and they would be right)!

Despite the fact that people notice Owen, they will rarely ask. A converstion with someone will go a little something like this:

Scene
Enter Owen in to a store or restaurant. He walks beside his mother with a confident stride looking extrodinarily cute. Other customers begin to notice the little boy and stare at him with amused looks on their faces. Owen walks by a particular woman,gives her a grin and then runs back toward his mom.

Woman: He's adorable!
Mom: Thanks! We think so too.
Woman: How old is he?
Mom: He just turned 2.
Woman (with a bewildered look on her face): Oohhhh.....

90% of the time this is where the conversation ends. I can tell that people are confused but once again, they don't ask.
Not that I can blame them. I'm sure people think it is rude to ask and under different circumstances, maybe they would be right. I suppose I could start explaining Owen's dwarfism without prompting, but I'd feel a little strange launching into a explainaton of achondroplasia without the question from the other person.

So I'm here to say "ASK ME!!". I don't mind at all! I welcome the chance to talk about Owen's dwarism. Owen is my very favorite subject so you can never go wrong being curious about him (espicially if you throw a few "He's so cute!'s" in there).

So I said, 90% of the time people don't ask. What happens the other 10% of the time?When people DO actually ask, here's usually the routine.

Mom: He just turned 2.
Woman: Really? He's so little!
Mom: Yeah. He's a little person.
Woman (chuckles): He sure is...wait...you mean a "little person"?
Mom: Yup. He has a form of dwarfism called achondroplasia. It's the most common form. Do you ever watch Little People, Big World?
Woman: Yes! I love that show!
Mom: Owen has the same form of dwarfism as Zach and Amy.
Woman: How tall is he going to be?
Mom: We are not exactly sure but the average height of little people is around 4 feet. I'm assuming it will be somewhere around there.
Woman: Well he's adorable!

That's almost verbatum some of the conversations I've had. Painless! In fact, a while ago, Dan and I were in the Children's Museum in Flint. We had passed this woman and her family a few times and everytime we in close proximity to her, she went crazy over how cute Owen was. She finally came up to me and asked "Is he a midget?" You all know how much I hate that word. In this case however, it didn't bother me because she had asked out of curiousity. There was no hostility or repugnance (go thesaurus.com,go!) in her question. My point is, if the genuine interest shines through, you can ask me anything!

Owen and I had a playdate with a friend the other day and she was asking me questions about Owen. She stopped in the middle and said "Does it bother you that I'm asking?". I of course told her no and expressed how I wished more people would ask. Especially my friends. In fact thinking about it now, my next post will be the FAQ's of Dwafism. Maybe those afraid to ask can learn a little more.

So now, all that said, I can only speak for myself. I do not know if other LP's or parent's of little people feel the same way. Do you?

Catching up with Oboe Part One: Outsourcing Parenting Duties

I know, I know. Once again, I've been conspiciously absent from the blogging world. No good excuse other than just being very, very busy. Hmmm...I suppose I should tell everyone how Owen is doing, but to tell you the truth, I don't really know!

With the official Pistons season kicking off at the beginning of the month (anyone hear about that AI trade?), Dan and I have been working A LOT!. As a result, we've had to outsource our parenting duties.

Thank God he loves daycare! I mean he LOVES daycare. He is getting to the point where he won't even say goodbye to us. He leaps out of my arms and runs downstairs to the other kids before I can even get a kiss. (Insert sad face here) Belive me though, I would rather have him run away from me with joy than cling to me crying. I would be a guilty wreck if I had to deal with that everyday.

We take him to an in-home daycare (Gennie's Little Tykes) and if I told you how wonderful this place is, you wouldn't believe me. He comes home at least once a week with art projects. I get a report card everyday of all the days activities including a down to the minute detail of all diaper changes (3 BM's yesterday at 12:59, 3:06 & 3:53 pm in case anyone is interested). The best part is that I can just tell that Gennie and the rest of the kids genuinely enjoy having him. When we drop him off, the kids run screaming to the door "Oboe!!! Oboe!!".
Oboe, somehow became his nickname at daycare. Even Dan and I call him Oboe sometimes. I suppose he could be called worse than a double reed musical instrument of the woodwind family. He could be nicknamed something terrible like "pea-brain" or "Shit-sandwich". That would not be good.

Owen's other parents are my mom and dad. They live 5 minutes down the road from me which would have been a horrifiying situation when I was 18. Now, however, it is an absolute life saver. It's nice having my mommy & daddy right down the road. Without my parents help, we wouldn't be able to work where we do and we couldn't even think about having a life!
Babysitters are expensive now!! I suppose it's justified. I am leaving my childs life in the hands of a teenager. I would be a little suspicious of a bargain basement babysitter. Our babysitter is WAY better than I ever was. She has taken classes at the Red Cross and made flyers to promote her services. She plays outside with Owen & takes him on walks. Holy Cow! When I was a babysitter, I used to turn on a video as soon as the parents left, plunk the kid down in front of it and will him to fall asleep early. I was not the best babysitter in the world. Anyway, Dan keeps saying we should just adopt an 18 year old girl to watch Owen. I think he's kidding. I hope. Pervert.

Back to my parents....

They of course love Owen and love having him. For Owen, the feeling is mutual. He loves being over there (even more than being home actually). I love the fact that my parents house will be come like a second home to him (hell, the way we've been working, maybe even a first home). It's a little bit sentimental for me to think that the house I grew up in will feel like a safe place for him too. Sniff, sniff ~tear~. Owen absolutely lights up when he sees my parents. It's like an "Oh boy! Here comes the fun!" type of look.

We are very, very, very lucky to have all the help we do. Dan's mom and day are always willing to watch Owen at a moment's notice. They live about 1 hour away so we don't get to see them as often as we would like. But Owen defintely loves it when we do.

So maybe someday we will be able to take care of our child on our own but not now. God, can you believe we are thinking about having another one?

PICTURES!
My baby sister's bachelorette party was a few weekends ago in Tampa. Here are the only pictures I can show you!

I bought Anne a tiara that said "Bachelorette". It was totally cheesy but Anne loved it! She but it the night before her party and didn't take it off until....well, I'm not sure she's taken it off yet. The last pictures I saw of her were on Halloween and she was still wearing it! Me, Anne and her best friend Bre Anne was the life of the party wherever we went. She tried her hand at lead vocalist for the band.

Is My Child Disabled?

I recently had the question posed to me "Do you think of Owen as disabled?". My immediate response was 'Of course not!'...OK...it was acutally 'Hell, no!'. But as I mulled it over in my head, the issue started to become a little more complicated.

The government considers my child diabled. I can apply for SSI and Children's Special Health Care. Owen's physical therapy is part of the special education program and he is eligible to recieve an IEP (individualized eduation program) throughout his life. Owen may even get to cut in line at some amusement parks (yesssss!!!). His technically 'disabled' status allows him advantages. But what about the disadvantage of being labled?

There is an inherent negativity associated with the term disabled. You are automatially assumed to be less in someway. Less able, less capable, less skilled, or dare I say less of a human being. I wonder though, are a technically disabled person's abilities' less or just different?
A person who has lost their legs cannot run, but may have more upper body strength that you and I combined. Is that less abled or just different? A child with autism may struggle socially, but could have an enviable amount of focus on a specific task. Is that less abled or just different? A severely mentally disabled person may not have the same rational thought process as you or I, but he has never looked another human being in the eye and purposefully hurt them. Is that less abled, different or even something to emulate?

I would do a disservice to Owen if I were to distance him from those labled as disabled. In the quest to be "normal", it would allienate him from the kids he has shared struggles with in physical therapy and from my own family and the members who have special needs. And let's call a spade a spade. Owen is not average. However, I would encourage the use of the term "differently-abled". It's seems more indicative of what the reality of the situation is. "Differently-abled" however, has to be an all- inclusive term. It has to encompasses everyone.

We all have different abilities, it is just harder to see what our weaknesses are. Owen's difference is on the outside. There's no guessing as to what his life's struggle will be. I'll bet you couldn't say the same about me. I struggle with who I am vs. who I want to be. I'm not always confident in the person I present. That's a weakness that effects my day to day life but you can't see it right away. But Owen and anyone else who has an obvious difference will always struggle more that I. As parents of children with outside differences, one of our struggles will be watching others react to the people we love the most in this world.

Owen may never be able to reach the top shelf, stair rails or some fast food counter tops but as I can already tell, his sense of ingenuity, innovation and initiative (basially all those "in-" words!), will be finely tuned. He will see and obstacle (literaly and figuratively) and know how to get around it.
In my book, that's not less, it's just different.

Fear itself?

I must apologize for the lack of posts lately. My sister Anne and Drew have been in town for 2 weeks and I've been spending every spare minute with them. I of course will post plenty of pictures from the visit soon. Tonight though, I have different thoughts on my mind

Before Owen, I never realized how much height gets brought up in converstation. Whether it be in a descriptive context or in as a reference point to a story, I now find myself finely tuned in to the subject when it comes up. I fear that discussions may veer off into negativity about shortness and/or that someone will drop the M bomb. The cosmic irony of my fear is that the M bomb always comes out of nowhere.

This weekend Dan and I were with friends and the discussion of someone's height came up. I sat there bracing myself for a derragatory comment but it never came. Just as I started to relax again, one of our friends stated that he wished he had little midgets to bring him his beer. POW! I felt like I had been punched in the gut. Thank God for Dan. As in previous intances, I froze up while my husband handled the situation perfectly. He looked at our friend and said, "You mean little people right?". He said it in such a way that meant, "Bro, do you realize what you just said?". That's all it took. Our friend realized his mistake.

It must be said that our friend would never, ever intentionally hurt us or Owen. He knows Owen and the situation and has been there to support us the whole way. It was a foot-in-mouth comment that was in no way meant to be hurtful or mean. But even knowing that, I couldn't help feeling a little undone.

I'm not sure what it is with me and and that word or why it conjures up such emotion. Luckily, I'm getting a better at handling it and each time I'm able to compose my self a little more quickly. My desire to control my reactions is mainly due to my husband. I think he knows that sometimes people are just unaware of what they say. If we respond too strongly, we risk alienating our friends by putting the focus on our reaction. If the goal is acceptance of Owen and our family, alienation is not really the way to go. That Dan is a a pretty smart guy huh?

Beyond that, I sometimes feel guilty getting up on a PC high horse. There were times when I was not always a spokesperson for sensitivity. I now realize that at some point, I surely have offended someone with an ignorant comment or remark that I thought was funny. I am now mortified that I would have ever been insensitive to differences but I know that I too have never meant to purposely hurt anyone.

It's funny. You never know what people's stories are. A few months ago, when the a guy we had just met started talking to Dan and I about midget tossing, do you think he ever would have thought that we might have a son with dwarfism? Of course not! He felt horrible after we stopped him and let him know our situation. I supposed I would like to give people the chance to say the right thing which is why I should explain rather than get upset.

I wonder though - will the fear ever go go away? When I go out with Owen, will I always dread comments and stares? Owen increasingly draws looks but right now, it's more of a "I know there's something different about that kid, I just don't know what" kind of thing. People don't have time to judge when they don't know what they are dealing with. The older he gets the less he can hide it. How will I react when people react to Owen's dwarfism?

The point is, I can't keep fearing what might happen. That's not a way to live and it's not the proper way to teach Owen self-confidence. Our aforementioned friend apologized profusely and we of course accepted with no hard feelings which is how we have to keep going. I have to keep plugging away and learning to truly let things go. I wonder however if the fear will always still be there? Does anyone else have the same thoughts?

These are a few of my favorite things....

The begging for food....

The bod...
Budda belly
Muscle man arms
Baggy flesh colored sweatpants


Kisses!

The faces

He's got - personality!

I've been watching with great interest, the burgeoning personality of Owen. My fun new pastime has actually been to dissect all it's different aspects.
Is he outgoing or is he shy? A thinker or a doer? Will be sensitive or insensitive (and therefore - like his mother or like his father?)? At this rate, this unhealthy parental obsession will bag him about 16 personalities.

Believe it or not, I've figured a few things out and here is the running list of my observations and theories.

1. Owen is a thinker. His mind wants to figure out how everything works. He doesn't want to crash his toy police car into his fire truck (also toy of course). He wants to figure out how the wheels move and what you have to do to make the sirens go off. Even with books, he's not interested as much in the content as much as the mechanics of the pages. Predicted career: Engineer

2. Owen is fearless. I've never seen him hesitate before doing anything (and that includes going down a flight of stairs when mom leaves the baby gate open). He plunges head first into everything - literally. Is that just him being a baby? Maybe? I think it's a little glimpse into future trouble. Consequently, we are staring a bail fund now. Predicted career: Wee Man's replacemnt on Jackass

3. Owen is fiercely independent. Owen wants to do it on his own (catchy isn't it?). You can see in his eyes his desire to be totally self-sufficient. I believe this is the reason he has excelled in the area of gross motor development. As a little person, this trait is going to be his best friend. I hope it will drive him to conquer the world on his own terms. Predicted career: Billionare mogul.

4. Owen is innovative. If he cannot get to something he wants, he will figure out a way to get there. If he can't go in, he'll go around. If he can't go around, he'll go under. If he can't go under, then he will whine and cry until mom or dad help him (uuggg!). This is probably the most fascinating thing to watch develop and another trait that will fair him well throughout life. Predicted career: Inventor of the cure for cancer.

5. Owen is hilarious. Owen isn't just funny. He's funny in a refined way. He has a very sophisticated sense of humor and seems very tuned into comic timing. He will sneak up on you at times when he knows all the focus will be on him, and surpise you with a well places peek-a-boo. Owen's understanding that he can command a rooms attention by being funny amazes me. Predicted career: The next Will Farrell (hopefully the refined part will skip the "We're going streaking!" stage...despite it's hilarity)

Now, never having parented a 16 month old before, I am willing to believe that these traits may also show up in other 16 month olds. However, as the mother of a future Reality TV star who engineers a cure for cancer by way of laugher making a billion dollars in the process, I think I have a right to believe that my child is a unique genius.

It's a Grandma Thing! / Guest Blogger Alert

Let's be honest here. It's pretty obvious that I have become way to big to write my own postings so I've decided to farm out the job. I was lucky enough to find someone who was willing to work for dirt cheap - my mother! What a sucker! So please give a warm bloggers welcome to my mother Jennifer

It’s a Grandma Thing!

I have been asked to be a guest blogger. Imagine that. I’m not sure if Cat is enabling my blogaholism or if she’s just riding out a streak of writer’s block but I’m going for it! Thus follows random Grandma Thoughts:

• Babies are miracles and in the past year my life has been twice blessed. Owen is spectacular! Drew is beyond wonderful! Can the goofy smile from reveling in their being become permanently embedded on my face? Only time will tell.

• Drew and Owen are so spectacular because their parents are doing such a great job. Hats off to Dan and Cat and Anne and Steve.

• I am inheriting the two best step-granddaughters ever. Alyssa and Carly are extra blessings.

• I love bullet points. Thank you to the Microsoft Word inventor who gave them to me and has allowed me to overuse them in so many documents both at home and at work. I will always revere you.

• Speaking of Microsoft…segue into computer then into internet. Isn’t the internet an amazing thing? The people I have met; the bonds I have formed; the stories I have shared; the tears I have shed; all while leaning over a keyboard and pretending I can type. The great big world has become much smaller. (No pun intended!).

• Are my office mates ever going to tire of my endless Grandma Grin? Will they band together and rip down the bulletin board that has fondly been named “The Shrine”? Will they unplug and pitch out the window the digital frame that has 350 pictures of Drew, Alyssa, Carly and Owen ceaselessly cycling for 8 hrs a day? Can I be fired for excessive grandmahood?

• It’s wonderful to share experiences and advice when you are the parent of a child who faces special challenges. I have seen some terrific support offered in this blogging circle. Outside the circle, while exploring other informative sites, I have found some advice to be judgmental and dare I say it, smug! There are folks who have come off to me as “know it alls” and have made hurtful and judgmental comments. Trust your instincts as parents. Know your children and be sensitive to their strengths and abilities. If it appears that they can handle a jumperoo or an exersaucer or even, GASP, an umbrella stroller, discuss it with your physician, listen to his advice and go with your gut. All children are different. Even our different children are all different.

• There are many NEVERS in parenting. Never leave your baby in the bathtub unattended. Never leave your baby unattended in a shopping cart. (Feel free to jump in here…) But, there are many, many gray areas.

• My husband; Cat and Anne’s dad; Owen, Drew, Alyssa and Carly’s grandpa; is the best.

• God Bless bullet points!

DISCLAIMER: The opinions of Ms. Merciez, do not necessarily reflect the view of "How Life Is Measured". Except for the part about Dan and I being great parents and the best. Thanks Mom!

Owen Christopher: The Facts

Welcome all new readers from the Flint Journal! It will be strange to have other readers besides my mother but I'm looking forward to it!

At one year old, Owen is very healthy. This of course is aside from the flu, croup and RSV he's had since October. Hmmm....well...maybe he's not so much... What I suppose I mean is that fortunately, he is not experiencing any of the complications that come with achondroplasia. This is not to say that he won't in the future, but for now, it's smooth sailing (knock on wood).

He is 27 inches, 20 lbs, and has a head circumference of 19 1/2 inches. On the average baby charts he is below the 5th percentile for height, between the 5th and 10th for weight and in the 95th for head size (all those brains!). On the Achondroplasia charts he is between the 50th and 75th for height, the same for weight and 25th for head. These stats will put Owen's size in perspective, but in all honesty, we kinda threw the charts out the window!

Owen is a very happy kid. He pulls himself up on furniture and cruises around the house like he owns the place. He babbles and loves to eat and generally makes it impossible to keep the house clean. See? We are just like every other household with kids!

Through the past year we have experienced a lot of curiosity about dwarfism and expect even more as Owen gets older. Dan and I are have no problems answering any questions that may come about. We are happy that people want to understand. We know that there will be stares and comments in the future and have mixed feelings. On one hand we would like to believe that those ridiculous comments come from ignorance. People just don't know. On the other hand, no one ever wants their child to suffer. It will be hard to stay calm toward people who aim to hurt your child. As of right now however, how we will react is all theoretical. Our family and friends have been nothing but supportive. In fact, I dare say Owen has been an inspiration to a few people.

Feel free to poke around my blog. I have met several wonderful families who are going through the same experience. You will find them in "Owen's friends and other blogs". If you would like to email Dan or I, our addresses are at the bottom right. Our point for the blog and the article was to take away some of the mystery of dwarfism. I hope when you meet Owen or another little person, it will be easier to see the person and not his stature.

Movin'

And so it begins. Owen is officially on the move. Gone are the days when we could lay him in the middle of the floor and walk away. Gone are the days when our house seemed clean enough for a baby! Now that Owen is crawling around, everything on the floor is now on his clothes and let me tell you, I am horrified by the poor performance of our vaccuum cleaner (yeah...uuhh...it's the vaccuum cleaners fault). On that note, babies make surprisingly efficient mops. Anyways, Owen is crawling, crawling, crawling! He's still army crawling for now. Although, I have my doubts that he will ever get up on his hands and knees due to the simple physics of the whole thing. His legs seem almost too short to bend under. I'm becoming increasingly aware of certain looks that I'm getting when I tell people that Owen is crawling. "How old is he?" they ask. When I tell them he's almost a year, the "He's not walking yet?" look appears. I'm sure many other mothers whose child is not hyper-advanced has experienced this look (dare I say we have all given this look at one point as well?). I'm not too worried about it. It's just an observation. Occasionally, when I have the energy, I will let people know that Owen is a dwarf. Most of the time however, I will smile polietly and pretend to marvel at the fact that this person's 3year old speaks fluent Spanish. But I digress... He is babbling and moving and generally in a great mood all of the time. His year birthday is coming up and like most mothers facing this milestone, I can't believe it's been a year! I've been spending more time on the Parents of Little People Group site. I've meet some great people. One of those people is Sarah Laurin who lives in the Dexter/Ann Arbor area. Her daughter Kaela was born with Metatrophic Dysplasia, one of the most rare forms of dwarfism. She also has a blog that she has allowed me to share. The Laurins. She is just gorgeous! Owen has dibs! Just kidding (but not really). Up to no good Too early for braces? Goofball. Just like mom. Bad hair day.

The M Word

As a parent of a child with dwarfism, I can only be talking about one word - midget. I knew that I would have to deal with it sooner or later and about a month ago, I had my first post-Owen encounter with the word.

I am the business manager of a restaurant and I was in the kitchen chatting with the line cooks. A plate of potato skins came out and they were much smaller than we normally serve. A bartender came back to grab her order and said, "Those look like midget potatoes!" My face flushed & my head got cloudy. "Please don't use that word," I said. She looked at me, shocked. "I am offended by that word. Please don't use it." I ran back to the office, shut the door and cried. The comment lurched me into an brief emotional tailspin. Although I knew I would hear it at some point, I was unprepared to deal with "the M word". As the daughter of a RN with a background in psychology, teaching and constantly gathering our family around the kitchen table for family emoting, my natural instinct was to delve in to why I was feeling so shaken about one simple word.
The bartender had no idea that my son was a little person so I'm sure she didn't use the word to purposely offend me or Owen. I can say with near certainty that the potatoes were not offended (although I'm sure they too would have preferred the term "little potatoes"). Theoretically, no harm no foul. So why then, did I have such a visceral reaction to this word?
Since that experience I have been trying to work out my thoughts on the term midget which has involved some research. From what I can gather, the term seems to be commently used out of ingnorance. There are those who use the term in a cruel manner but frankly I don't want to expend any energy on them at this time.

At one point in my life I thought that midget was an acceptable term for a little person. In fact, I thought it was a term distinguishing proportional dwarfism from disproportionate dwarfism (short arms & legs, large head and trunk). Turns out this is actually correct. Midget was a term coined in the mid 1800's to describe porportional dwarfism and therefore the most socially accepted little people. It is debated as to who coined the term but has ties to PT Barnum at the height of his career. At this time it was "dwarf" that had the negative inferences. In the 1950's The Little People of America had it's first meeting as the "Midgets of America". However, the majority of the people who showed up were dwarves and the group was remamed to reflect both its proportonate and disproportionate members.
Eventually the term fell out of favor although it is unclear as to why. Some theories credit a group of young dwarves in the 70's taking cues from the women's and civil right's movement in a push for acceptance. Another theory is that the word's circus origin lends itself to more deviant uses. Whatever the case may be, many people are ignorant to the fact that it is an offensive term.

In my opinion, I'm not so sure that it's the textbook definition or the history of the word that matters. When it comes to the word, or any word for that matter, it the context and feeling that will define it's meaning. When you say "I love you", it doesn't have meaning unless you truly love. We can give words power and we can take that power away. Dan and I will hopefully instill in Owen the common sense to distinguish the uninformed from hateful and deal with them accordingly.
That being said, I will most likely continue to flinch when I hear or see the word as I did today while listening to "Cheech and Chong's Santa Claus and his Old Lady" song or when I watched the "Family Guy" the other day. Maybe someday I will become immune, maybe I won't. For now, when I do encounter the word, I will patiently explain it's offensiveness(without running off and crying hopefully). And when you ask me what you should call my son, I will simply tell you, "Call him Owen."



*I read some really interesting articles while researching this post. I'm including the links below:
This one is a great historically based article on the PBS website by a man whom I've frequently come across on the web. Dan Kennedy's daughter Becky has achondroplaisa and he wrote book called "Little People: Learning to See the World Through My Daughter's Eyes".
PBS Article
Dan Kennedy's Website
The next one is an article by Leonard Sawisch, psychologist and former president of the Dwarf Athletic Association. There is some offensive material in the beginning question but scroll down to his article to bypass.
"What Offends Us"
Last is an exchange between actor Daniel Woodburn and Rodger Ebert. Warning - There is quite a bit offensive language. It very much highlights that some people just don't realize what they say.
Rodger Ebert

Giving Thanks

For once in my life, it wasn't about the food!
This is in no way a slam on my mothers cooking of course, but more of an indicator of what an incredible year we have had.
I have so much to be thankful for this year. I am thankful that my son is alive. I am thankful for everything we have been through this year. I am thankful that because of my son, my view of the world has changed. I am thankful that I have found such a wonderful support system. I am thankful for my family's unconditional love for my child (and for me). I am thankful to have a husband who is completely crazy about our son. I am thankful that I have have ended up in Holland.

That being said, my heart breaks for those whose stories have not turned out as mine has. Most notably the Dungey's and Candi (a woman whose eagerly anticipated daughter did not make it). My thoughts are often with them.

As for Owen's thankgiving. He was thankful for the mashed potatoes!

This will be fun to clean.

Owen's first word - tryptophan.

In the grand tradition of men everywhere, the pants are off!

That weekend was the traditional tree cutting day! Owen was no help. He didn't help pick out, cut down or load up our tree. This kid better start pulling his weight.

Has it really been 6 months?

Today it really hit me. Today was the day when I looked at my boy and went "Holy (explitive deleted), your getting so big!" I spent some time watching videos of newborn Owen. I of course became completely weepy and sentimental. This ride we've been on for the past 6 months has been the best thing that has ever happened to us. My perspective on life has changed. I feel that I have more character.

Here's a fun visual chart of Owen's progress

ONE MONTH The beginning of the Budduah belly TWO MONTHS Here Owen demonstrates his puppy dog eyes which will someday be accompanied by "But Ma, that tree came out of nowhere!" THREE MONTHS I see a pretty big difference in Owen between two months and three months FOUR MONTHS Yes, Owen's hair is significantly shorter due to Daddy's barber shop skills. Can you believe I let my husband near my son's head with scissors? I must really trust him! FIVE MONTHS Seriously, could this kid get any cuter?

Human Growth Hormone

I know, I know. I've been neglecting my blog! After 45 hours a week on the computer at my job, I find that the last thing I want to do is get back on the computer at home. Last night, a segment aired on 20/20 about the importance of height. They posed the question from the point of view of a dwarf and from a giant. The show later chronicled the journey of 2 short teenagers who made the decision to take human growth hormone (HGH) in order to make them taller. Owen has an apointment with an endochronologist (hormone specialist) on the 13th. Originally we were told that HGH would not make a difference to Owen's dwarfism. It would get him to his maximum height faster, but would not make him any taller. However, our genetisist told us that recent studies have shown that HGH can actually add inches. He suggested we see the endochronologist for a consultation. This possiblity of HGH for Owen changed our question from "could" to "should". Dan and I are now pondering some big decisions. If it is a reasonable option for Owen, should we give him human growth hormones? From where Dan and I stand, we have serious worries about how this decision could effect Owen. Would giving him HGH cause him to think that he is not good enough because he is short? Dan and I NEVER want him to think that he is anything less than perfect just the way he is. Will he see his height as a problem that needs to be fixed? How would HGH effect Owen's character? If we try to remedy Owen's short stature, will he be unable to fully accept who he is? Will he never find the peace that being comfortable with who you are provides? Will Owen's height amoung his little people peer group matter? I have not yet learned enough about the culture of little people to know what effect height has within their own community. Is it an advantage to be a tall dwarf? I would think not, but people are still people - little person or not. If we are being honest, height is generally and advantage. And the really big question... Just because we can do something should we do something? On the other side of the spectrum, perhaps HGH is a good thing. Medical technology is available for the betterment of human health. Why should I refuse medical advances based on philisophical doubts? Perhaps the inches HGH will add would give Owen more confidence as it did with the teens from the 20/20 show. Is there anything wrong with narrowing the gap between Owen and his friends. Maybe Owen will see that we love him enough to do whatever it takes to make him happy. Maybe there are medical benefits to HGH (I do not know yet). All these questions still leave one enourmous factor out of the equation... What will Owen want? Ultimately it is Owen who will have to live with the decisions we make on behalf of his body. Maybe this is something that he will have to decide somewhere down the line. In this grey area of ethical decisions, he is the only one who can determine whether or not they are right or wrong. Perhaps I'm copping out or maybe this is truly the right thing. Either way, all these questions are currently theoretical. However, with these types of questions looming on the horizon, it doesn't hurt to gather my thoughts. I would love to know what everyone's thoughts on this. Please post a comment and tell me what you think. On another note, there will be a National Geographic special on "The Science of Dwarfism" on Monday, June 30th at 9:00pm. The 20/20 segment was done in conjunction with this piece. Click on the link and the video is on the right hand side.

Promises

I promise you Owen Christopher....

...to allow you to make mistakes. No doubt you will make them, but we will always love you no matter what.

...to teach you to be open. You should never ever be embarraseed of who you are. If you are open, people cannot be ignorant.

...to always laugh with you. We will have fun - lots of fun. I want you to always rembember a home full of laughter.

...to provide you every avenue of support that you need. You are not alone. I will make sure that you have other little people to grow up with.

...to instill in you a sense of self. You get to decide the things that define you as a person. No one else can do it for you.

...to help you see dwarfism as a gift. With your big smiles and big personality, you can let others get a glimpse into the world of little people.

...to always cuddle you. You can't escape it, not even when you are a grown man. "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be."

...to make you strong. You will inevitably face cruel people. I want you to know that they can only hurt you if you let them.

...to foster your dreams. There are no limits for you. Your height will be a challenge, not a dead end.

...to love you unconditionally. That will never change.

How is life measured?

Owen was 4 months old today. It's hard to believe that our rollercoaster ride began only 4 months and 6 days ago. It seems so very far away from the "normal" everyday family life that we lead. (I of course, use the term "normal" loosely as a homage to Tonya and Knoah who are currently dissecting that term on their blog What is Normal? ) Owen has been definitively diagnosed with Achondroplasia by the geneticists at U of M. For my husband and I, this diagnosis was relatively easy to take considering what we had faced a few months back. I can't help but think that perhaps God put us through all the drama in order in order to prepare us for our new life. Before Owen, I had never given much thought to a persons height and how it effects the world's perception of a person. Of course, everyone makes snap judgements of people. "He's 6'6. He must play basketball". "She's 5'2. She must be delicate." Beyond that, how will Owen's height effect the person he is?

I wish for Owen the same things that I wished for him before we found out he had achondroplasia . I want him to be a strong, happy, good person. I'm so curious to see what life is going to bring us. He's such a happy little guy right now. I hope he doesn't turn into one of those sullen teenagers whose answer to every question is "Fine." Although, I suppose that's inevitable.

There are a few things I hope to accomplish with this blog. I would like to provide hope for parents who have been given poor prenatal diagnosis as Grace did for me. The Roloffs have opened their doors and are shattering the stigmas associated with dwarfism. I too hope to provide some insight into the world of little people. Basically, I just need to chronicle my journey. It always helps me to get everything out and onto paper (or a computer screen in this case). I probably won't write everyday and it will most likely be very random thoughts. I can promise honesty. Please, please, please, leave a comment or a post if you want. I can't wait to meet more people like me!