Wednesday, May 30, 2012

Rites of Passage

One of my favorite places to be is our cabin.  Nestled in the woods "up north", our family always enjoys great times at the cabin.  It was originally built as a hunting shack, but has become something much more these last couple years.  Kevin has brought the girls up there for "dads and kids" weekends while I've been away scrapbooking and whatnot, and it has been brought to my attention that weekends with dads only are much more fun...because they allow more candy eating.  In fact, while I refer to the cabin as "the cabin", the kids often call it "candyland."

Well, Sam got to enjoy Memorial weekend at the cabin with us.  It was the most relaxing weekend we've had since Sam's arrival  And it was fun!!  We own the cabin with two of our closest friends and their families.  Altogether, there were six adults and ten kids in the cabin, ranging from 8 weeks old to 14 years.

Boys love mud and things that go vroom, right?  Sam will be no different!  What boy, young or old, wouldn't LOVE to hop on a 4-wheeler and go cruising down the road or through the mud?  And how many 8-week old infants can say they've ridden on a 4-wheeler?  All the moms got to escape for a long walk Saturday afternoon, and in my state of relaxation, I lost track of time and nearly missed one of Sam's feedings!  We were about a mile and a half from the cabin when he started fussing.  Sam doesn't fuss, so I knew something was up.   Sure enough, after checking the time, I realized that he was probably hungry.  So dad came to the rescue on the 4-wheeler and gave us a ride back to the cabin.  Snug in his infant carrier while I held it close, Sam took his first 4-wheeler ride!  He had a look of wonder on his face the whole way back - I think he liked it!  It was definitely a rite of passage from baby boy to big boy!  (Sam also had his first wood tick.  Ewe.  Luckily it wasn't attached!  That's all I really need to say about that....ewe.)

Even before Sam was born, we planned all the great things our family would do at the cabin.  When we go there, it's all about fun, no rules and making great memories.  After Sam's diagnosis, I think there was a part of me that thought our family would change so much in the sense of what we'd be able to do as a family.  I don't know why I ever thought like that, because I was so wrong.  Of course, Sam and I didn't partake in the making of mud-pies with the girls this past weekend, but I would bet my left arm that he'll be out there too in a few years.   We are so lucky in that Sam will run and play just like the other kids.  He'll learn to drive those 4-wheelers, he'll learn to shoot pop cans like the other kids, and someday, he'll spend precious weekends at the cabin with dad bear baiting and hunting.

I'm not going to lie, there are still days (like yesterday for instance) when the words "Down syndrome" cast a shadow on so much of what I should just be enjoying about my new baby.  Too often I dwell on all the what if's and maybes.   Saying that we take it one day at a time is easier said than done, because we have to wake up everyday and literally tell ourselves, again, to take it one day at a time.

I am happy to say though, that Sam's teachers and therapists are treating him as though he will progress just the same as any other child would.  We were asked to describe our family dynamics and what our hopes and dreams for Sam are, and my response was: "We are an active family, and always on the go.  Our hope for Sam is that he can be active and keep up with all of us."

We just want his life to be full of precious memories just like ours will be.  Sam is two months old today, and already we've created some pretty precious moments.  And I do truly know that even with the days that I feel our joy is overshadowed by our new life with DS, there are many precious memories yet to be made and there are many "rites of passage" yet to experience with our little man.  I understand they're going to happen according to Sam's time, but each one will be exciting and rewarding.  He's going to do great things - heck, he's only two months old and he's already changing lives.

Wednesday, May 23, 2012

Hospital Sunrises

Unfortunately, I watched the sunrise on Sunday and Monday mornings from a hospital window.  On Saturday night, Kevin was snuggling with Sam on the couch and he asked if I thought he sounded raspy at all.  I picked up him, held his chest up to my ear and it sounded clear as a bell.  He continued to sound fine all evening.  Besides the fact that it took Sam an hour and a half to finish his four ounce bottle, everything seemed perfectly fine.  However, at 2:00 a.m., Kevin bolted upright in bed, shook me awake  and said "listen!"  Sam's breathing sounded like he was struggling for his very last breath.  Every inhale sounded like something between a gasp and a bark, and every exhale sounded like he had three cups of mucous floating around his upper respiratory system.  I got him upright, and started clapping on his back pretty forcefully, half expecting him to just cough.  He wouldn't cough to save his soul.  He finally caught his breath, but his throat still sounded like it was full of gunk.  I warmed up some milk quick, thinking he could "rinse" it down.  After a half ounce, it was clear he wasn't going to get any better.  So, I packed him in the carseat, grabbed my breast pump, the diaper bag and hit the road.  Before I left the driveway, I got settled in with my pump, because let's face it - at 2:00 a.m. as a "pumping" mama, I was hurting!  (if it's illegal to pump and drive at the same time, let's not tell the officials please!)

I arrived at the hospital at 3:07 a.m.  Sam was seen almost immediately by the emergency department doctor on staff, and soon thereafter carted down to x-ray.  The x-ray showed no signs of pneumonia (phew).  So, we settled in to wait for the weekend on-call pediatrician to arrive.  We were admitted to the hospital, and transferred up to the pediatric department around 7:00, and seen by the pediatrician shortly after that.  (Of course it wasn't our regular pediatrician, but luckily this one is as wonderful!!)  Within in an hour, Sam had his nose swabbed for an RSV test, two small viles of blood drawn and an oximeter taped to his foot - all this after he was stripped naked from sleep to be weighed.  Oh by the way, he's finally gaining!  The pork chop weighed in at 10lb 2.2oz!

After giving him a thorough once-over, the doctor said "well, this is a puzzle."  It wasn't exactly what I was expecting to hear, but it was the truth.  He had no fever and no real signs of an infection as was determined by the CBC (complete blood count - no elevated white blood cells)  His tiny ear canals were clear and his throat was just right.  It came down to a common cold.

Sam was just coming down with a cold.  Really?  And we're in the hospital?  Great.

If you can picture his tiny pinky finger, that is how big the biggest main airway is in him, and everything that branches out from there is even smaller yet.  So you can imagine how little it would take for these airways to become restricted either by excess mucous or inflammation.  The doctor ordered nebulizer treatments with Albuterol, a drug that is supposed to help with wheezing and shortness of breath.  The lady who administered the neb treatment, also did BD's on Sam, whereby she used a small rubber ball/disk to "pound" the mucous out of his lungs.  He loved it!  She laid him this way and that way, right side up and upside down,  and pat pat patted away on his ribcage.  He was loving every minute of it, and the lady told me he was the best baby patient ever!  Sam also had three doses of Orapred, which is an oral steroid to help relieve his symptoms as well.

By 11:00,  I was starting to feel like a swamp monster, what with my unwashed hair, dirty clothes and dragon breath.  Luckily, a dear friend of mine lives just a few blocks from the hospital, and she happens to be Sam's godmother, so she was more than willing to come and sit with him while I ran to buy new underwear, a clean tshirt, a toothbrush, and run to her house to grab a quick shower.  By the time I got back to the hospital, I felt like a new woman!  Also by the time I got back to the hospital, I determined it would be wise to keep a bag with these essentials in it in the van at all times!

By 3:00 on Sunday afternoon, I was thinking things were looking pretty good.  But at 4:30, he started in again with the raspy breathing.  I was then told that the doctor wanted to keep him overnight for observation to make sure that his oxygen saturation levels didn't drop to an unsafe level.  So we settled in for the evening.  His sats stayed right around 94-96%, with an occasional dip to 88% - which was nothing to be real concerned with, as long as the dips didn't last more than a few seconds.

Around 8:00, I could barely keep my eyes open, and it was time for Sam to eat.  I was so exhausted, I really didn't have the oomph to pump and get a bottle ready for him.  So, even though we've only tried it a handful of times, we nursed.  We nursed!  Sam did it!  He latched on like a pro and went to town!  It was a wonderful moment for me as a mom, just because we struggled so much with nursing at the very beginning.  He was content, I was happy, life was good.  We tried again at bedtime, and though we struggled as much then as we ever had, I was ok with that.  The nurses were really encouraging me to keep trying, to stop pumping and strictly nurse.  Truth be told, pumping works for me - why fix something that isn't broken?  But it brings me gladness to know that he can do it, and we can do it when we want, on our terms.  We're in control of so little in the big picture, but this one thing we can control!

Sam was still awake at 10:00 p.m., but I laid him in the hospital crib, moved my pillows to the foot of the bed so I could see him during the night, and passed out.  I slept like a rock.  I'm not talking about the kind of rock you can kick around with your toes - I'm talking like-a-boulder-that's-planted-deep-in-the-ground-like-a-rock-sleep.  I didn't flinch until 6:00 on Monday morning.  Super mom.  I don't know if it was knowing that Sam was on monitors that would alarm if anything went awry, or if it was the fact that I had awesome nurses checking on him every hour, but I slept like I haven't slept since before any of my kids were born.

Monday morning, the pediatrician came to check on Sam around 9:00 and gave us the go ahead to head on home if we'd like.  Yes, we'd like.  But before he left, I asked him "is this going to happen every time Sam gets a cold?"  He explained that while some kids with Downs are born with heart issues, others are born with the inability to handle their secretions.  With his tiny airways, the smallest amount of mucous can cause problems.  We all have a cough reflex, but Sam's is slower and not as strong as ours, so he doesn't cough when he needs to, therefore the fluids collect and cause congestion.  He explained what is ok, and what is not ok, in terms of when to bring him in and when not to.  In other words, this will likely happen again down the road.

So we packed our bags and hit the road.  As scary as the whole experience was, I do know that it could have been so much worse.  We could have been at the hospital for major heart surgery.  While I can't help but think "this is what happens with 'just' a cold?", I also remind myself that we are lucky that Sam wasn't born with bigger problems.  And so, I bring our baby home once again, to take it one more day at a time.  Before I left home Sunday morning, I looked at Kevin and said "I have a feeling this is only the tip of the iceberg."  I see now that it likely is only the tip - I just hope and pray our ship is stronger than the Titanic.

Friday, May 18, 2012

First Hurdle (thankfully small!!)

I have a daycare child who tells me at least once a day around here that Sam is "scrawny".  I say, "no, he's perfect...isn't he cute?"  She just giggles and runs off to play with the others.  This went on for a couple weeks, until last Friday when I took a good look at him and realized he is scrawny!  You can see his little ribs sticking out, and feel his kneecaps, see his ankles.  There's not a baby roll to be found on this baby!  Last Friday, I hopped on my home scale to see where he was at with his weight.  And according to my scale, he wasn't even ten pounds yet.  Then on Sunday, a woman at my church who happens to be a public health nurse and who happened to have her scale in her car, offered to get an accurate weight on him.  According to that scale, he was 9lb 8oz.  That might seem like a good sized baby at 6 weeks, but keep in mind he was 8lb 14oz at birth, and 8lb 13oz at his two week checkup.  That meant he'd only gained 11 ounces in four weeks.  Now, I'm not a pediatrician or a nurse, but even I know that doesn't sound right.

First thing Monday morning, I called our pediatrician, and sure enough, he wasn't satisfied with Sam's growth.  So we scheduled an appointment for Wednesday afternoon.  A quick trip to the scale revealed that Sam is 9lb 12oz and 22 3/4 inches long.  He would be in the 75th percentile for height, but only the 40th for weight.  That's not extremely concerning, but we would like to see those numbers a little closer together and more in proportion to each other.  We talked about what could be causing his low weight gain, and while we ruled out spitting up more than taking in or something blocking the absorption of nutrients, it ended up coming down to calories in versus calories out.  Sam is ALWAYS on the move.  He's the wiggliest little man I've ever seen!  With that, and the big job of growing, my doctor wants me to feed him 1/2 breastmilk and 1/2 formula for now to see if that helps.  (Phew - no big deal!)

But of course, with this new adventure we're on, I'm more aware of people around me and certainly this trip to the doctor couldn't just be routine.

When we arrived at the clinic and finished all the check-in stuff, I sat down in the waiting room.  As usual, I left Sam in his infant carrier to make it easier when the nurse calls his name.  I sat his carrier down in front of me and started talking to him.  I could see that there were two people straight across from me, so I glanced up to give them a friendly smile and guess what?!  Sure enough, the lady on the right had those oh so familiar almond shaped eyes I've grown to love.  I smiled at her and then smiled at her friend next to her.  Suddenly, I couldn't get Sam out of his carrier fast enough.  I wanted to hold him, show him off - I wanted him to look at her and say "I'm just like you!"

I sat him on my lap so he was somewhat facing them.  I talked to him, and tickled his chin to try and get him to smile.  Instead, he puked down his shoulder and onto my arm,...it trickled down the chair and landed in a small puddle on the floor.  There goes my magical Down syndrome moment!  The lady on the left laughed and made a comment about the joys of motherhood.

Soon after I got us cleaned up, the nurse called Sam's name. (they call him Samuel, which just sounds so dignified!)  After his appointment, of course the two ladies were long gone.  I had to wait, because I had an appointment as well for my postpartum checkup.  I sat in the very chair that only moments earlier sat a woman who had lived her entire life with that extra magical chromosome.  I hope she saw Sam, and I hope in some small way she felt blessed to see a new life, a life like hers, sitting before her.

I only had a few minutes before the nurses called me back for my appointment, but in those few moments I realized something.  I realized that for the first few weeks after Sam was born, I was scared to show him off - I was scared of people's reactions, scared of what they would say or think, or even of what they wouldn't say.  I found myself not uncovering him when we were out and about, I'd leave him snug inside his carrier and covered in blankets.  If and when I did reveal him to people, I felt the urge to blurt out "he has Down syndrome".  It's not that I was ashamed, I can't really explain what I felt in those moments.  I didn't want people to have any reaction other than a "normal" reaction to a new baby.     And I think I convinced myself that if I just told people right away, they would know to say something kind and positive and not react negatively at all.

But yesterday, when I couldn't get Sam out of the carrier fast enough, I realized that my days of not wanting to share him with the world were officially over!  These past few weeks, I've been so proud to show him off, and I no longer feel the need tell people he has Downs.  It doesn't matter, and I know that now.

Grandma got him to smile....again!
I have to share also that Sam is smiling now!  It's so exciting to see his personality develop just like any other baby would.  He's so darn cute when he grins!  I try and try to get him to smile for me, but my attempts have been pretty futile.  So I play smart, and head to grandma's with camera in tow, because for some reason, my mom can coax a smile out of him on command!  How could you not fall in love with a face like this!!

Tuesday, May 15, 2012

Perspectives

I do pray.  On occasion, I'll get down on my knees, clasp my hands together and pray.  But more often than not, it's more of an "open line of communication" with the big guy upstairs.  And most of these conversations take place in the vehicle on those rare occasions when I'm driving alone.  More than one of these said conversations have been about how blessed my life has been.  My life has taken many turns that I didn't exactly anticipate, but in the end...it's been perfect, and for that, I'm extremely grateful.

In high school, I worked at the local hardware store.  Everyday at 4:30 I'd wait for this certain "really hot" guy that works at the electric company to come shopping.  He did so quite often, and I would do my best to flirt with him and catch his eye.  Of course, I don't know that I ever came within 20 feet of him, but that doesn't matter.  In the end, I got the guy.   Shortly after we got married, I wanted a baby - bad.  It didn't take long, and we were expecting our first little one.  I wanted a girl, and I got her.  Then I wanted another baby, and we got pregnant again.  This time, I wanted another girl because I grew up with a brother and Kevin with a sister, and I wanted our oldest to experience having a sister.  And we got another girl.  Then we found ourselves expecting again, and guess what?  I wanted another girl!  (Pink was all I knew at this point, so I figured it was a safe route)  And another little girl blessed our lives.  For two years I begged to have another baby, and just when I thought I wasn't going to get what I wanted, Kevin caved, and we were expecting one last time.  This time, I wanted a boy.  I wanted blue.  I wanted Tonka trucks and John Deere tractors to trip over.  And I got my boy.  We got our boy.  I'm kind of spoiled when you think about it.  Ok, I'm really spoiled.  But for the sake of not sounding like a brat, we'll call it "blessed".  I can seriously say I have everything that I want in life, aside from that new house we're dreaming of.

This kitty was given to us by Sam's teacher
to remind us of how wonderful our
kitty is!!
While I didn't pray and ask for a child with Down syndrome, I'm starting to realize that it might have been what I didn't know I always wanted.  One interesting perspective on DS I read was this: It's like dreaming of getting a puppy, one that you can teach to play fetch, roll over, sit, shake hands, etc.  You spend time dreaming of the "perfect" puppy.  So you head out to the pet store and gaze adoringly at all those cute little fuzz-balls until you finally find the perfect one.  You put them safely into your pet carrier and drive home, all the while so excited to get home and start this adventure with your new puppy.  When you get home, you open the pet carrier and out slinks a kitten.  There will be no teaching this kitten to fetch, or roll over, sit or shake hands.  What has gone wrong?  What are you going to do now?  Friends say, "it's ok, you can teach kittens to sit and maybe even play fetch."  "It'll be fine, kittens are nice too."  You are crushed.  All the dreams you had about your new puppy have vanished.  You feel sad, you feel cheated, and you really don't know how you're going to go on.  Then one day, you wake up and take a good long look at your new kitten and you realize that kittens aren't so bad.  You kind of like your new kitten, and you don't really want to train him to fetch or roll over.  He's perfect just the way he is, with all the things he may or may not be capable of.  In fact, it turns out you wanted a kitten all along, you just didn't know it.

Perspective is simply a matter of how something seems to appear or how you view something.

A friend recently gave me a neat perspective on something.  Remember my comments on the Grand Canyon, how it couldn't "just happen"?  Well, she reminded me that these amazing landmarks in our world only exist in certain places.  There's only one Grand Canyon, there's only one Mt. Everest, there's only one of every beautiful and amazing landmark.  There's only one of every beautiful and amazing individual.  There's only one you, and one me.  And we are placed in specific places for specific reasons.  With that said, it's safe to conclude that Sam was placed with our family on purpose.  Our kitten fits in this family WAY better than any puppy could have anyhow!

This past Sunday was Mother's Day.  Our day was fairly uneventful, we attended church in the morning and then went to have dinner with my parents. (my dad grills one hell of a burger!)  We headed home late in the afternoon, and it definitely felt like one of those don't-worry-the-housework-will-still-be-there-when-you're-done-being-lazy kind of days, so I opted to lay on the floor next to Sam and just chill with him.  The girls were all outside playing.  I started thinking back on the all the things I've wanted in my life.  Sure, there are things I thought I wanted, but I've gotten along fine without them.  For instance, I thought I wanted a black Mustang with hot pink racing stripes, but my van suits us better.  In all seriousness, I truly have everything I've ever wanted.

When I was pregnant with Sam, I remember dreaming up all the things I wanted for him, for our family.  Of course, that's all changed now.  I'm starting to forget the child I dreamt I was pregnant with.  I'm starting to forget all those things I thought I wanted, and I'm starting to realize that this IS what I wanted.  I wanted a child as special as Sam.  I wanted, no, I needed Sam to come into my life to teach me to love stronger and deeper, to find happiness in all things big and small and to never ever take anything that I have for granted.  I have everything.  In reality, none of it is anything fancy - but I have love in my life, I have joy, and I have beauty - my children are the most beautiful people in the world through my eyes.  There's nothing I want....I'm spoiled, er, I mean blessed.

So, though I didn't know it, I wanted a kitten and I got myself a kitten.  I myself am a cat person, always have been...I guess I just didn't know it. 



Monday, May 7, 2012

Ice Cream Sundaes

Yesterday, we met the neatest little guy in the world!  He's got a smile and laugh that will melt you to pieces.  I have a feeling that he and Sam are going to be very good friends someday.

Backup to March 31....The day after Sam was born, the hospital got us in touch with a family from a neighboring town who also have a son with Downs.  The mom graciously came to the hospital to visit with us and to help answer questions we had.  The doctors and nurses were great about answering the medical and technical questions, but we wanted to talk to a "real" person who had experienced it.  She came and shared pictures, and stories and real life stuff with us.  It was the greatest thing anyone could have done for us at that time.  We were grieving, heavily...and she stepped into our room and basically said "hey, don't be scared.  I've been where you are, come follow me."

After we brought Sam home, we kept in touch with this family to give them updates.  They invited our family for dinner, and we were so excited!  They have two older daughters that are the same age as our oldest and second daughter...we couldn't wait!  So we marked the calendar and anxiously awaited the big day.

Truthfully, I was excited, but so nervous at the same time.  I was so scared that I would go meet this little boy, who is 3 1/2, and get a taste of what my life would be like in 3 or so years.  I was scared of what it would "taste" like.  What would he be like?  I have never in my life spent time around a person who has Downs, so I can honestly say I had no idea what to expect...but a large part of me was afraid it would be not so great.  I feared I would see a glimpse of the problems we would be up against down the road.

I couldn't have been more wrong....it was like the biggest best ice cream sundae I could have dreamed of!  Hot fudge, caramel, a little strawberry topping, whipped cream AND sprinkles!!  All in one bowl!!!  We pulled into the drive and the little guy came running over to me with a huge smile on his face and put his hand on my leg.  Now keep in mind he has no idea who I am, but he treated me like we'd been buddies for years.  Then he greeted Kevin with the same enthusiasm!  Wow!  There were tiny tears welling up in my eyes as I grinned from ear to ear.

This little guy was so full of life.  He was so smart!  He immediately started talking to us in both spoken and sign language.  He was so energetic!  He never stopped moving and engaging in activity the entire time we were there!  He made me laugh all evening long - joy, he is joy!  Instead of being afraid of what or where Sam would be in three or so years, I now can't wait until he's there.  I can't wait to see his personality develop, and watch him learn new things.  Downs or no Downs, a boy is a boy is a boy, and his mom told us - "you just wait, your time is coming." (she said this as her little guy trotted around the living room with his cowboy hat on saying "yee-haw!!")

As we suspected, the girls all got along great too - jumping on the trampoline and giggling together all evening.  The mom and I easily chatted all evening long and the guys hit it off too.  I can't help but think that if it weren't for Sam, we probably would have never met this wonderful family.  Already I can see a great bond forming between our sons, between our daughters and between ourselves.  Just another wonderful thing Sam has done for us - thanks man, you're the best!


Good Reason

Do you know how many times we've all said or heard the words "everything happens for a reason."  Do you believe it?

My dearest friend lost two babies in less than six months, and do you know what I said to her?  "It'll be ok, everything happens for a reason."  It wasn't ok, her and her husband were in so much pain.  But I still believed that there was a reason for what happened.  People lose their jobs, their homes, their spouses, and though it may be difficult to understand at times, it's all a part of a plan.  There is a reason for everything.

There is a reason my plans in life changed so drastically right out of high school.  I went to college with the dream of being a famous composer.  At one point, I even filled out an application to transfer to a music college on the East coast, but changed my mind.  Why did I do that?  I could have had the chance of watching my dream come true if I would have just had the courage to venture out there.  You realize though, had I gone, I wouldn't be here, and neither would Sam....and there's a reason for that.

There have been several times in our marriage where we've been struck by something so beautiful, it just cannot be explained.  For instance, the edge of our property is on a huge hill, and it's probably one of the highest points for miles around.  We sometimes drive our four-wheeler up there just to look at the world around us.  Once, Kevin said "look at that, that didn't just happen."  There is no way you'll convince that man or myself for that matter, that the earth is the result of some fancy impact.  Could you stand at the edge of the Grand Canyon, look into it, and believe there wasn't an upper hand in the molding of that landmark?  Do you ever sit and enjoy a sunset, listening to the sounds of the night coming alive around you, and not wonder at the amazement around you?

Go look out the window - the trees, flowers, the sky above....they didn't just happen.  Go look in a mirror, you didn't just happen.  If you're a parent, go take a peek at your sleeping child tonight...you know what I'm going to say....they didn't just happen.  Everyone and everything happens for a reason, a good reason.

I believe in the very core of who I am that Sam is here for a very special reason.  He's a teacher.  He's going to change so many lives, just by being him.  He's already taught us so much - he's taught us how to love not only him, but all of our children more than we ever knew possible.  He has taught us the importance of taking the time to enjoy even the smallest things in life.  Since he was born, I have so much more patience, because I've learned to stop sweating the small stuff.    For instance, my laundry pile has been about 2 feet deep since he arrived and I couldn't care less.  The laundry will be here tomorrow, right now there's more important things to do - like getting out the playdoh to play!  Sam has taught us acceptance and respect, not only towards him, but towards everyone around us.  He's shown us that difference is the new alike.

I can't wait to watch the impact Sam's life will have on others.

Do you know how many times we've all said or heard the words "everything happens for a reason."  Do you believe it?  I know I do.

Saturday, May 5, 2012

Changing the Way We Think

The best advice I've received since Sam was born came from Kevin's Aunt and Cousin, who both urged us to always see Sam first as a boy, and secondly as a boy with Down syndrome.  Instead of referring to a child with Downs as a "Downs kid" or "Downs child", we should always say "a kid with Downs" or "a child with Downs," because first and foremost, they are a person...a person with Downs, not "Downs with a person." Right?

Well, that very concept makes me think so much about what I say about Sam to others, or rather "how" I say it.  When Sam was first born, when someone would approach me to ooh and aah at him, I felt this overwhelming urge to blurt out "by the way, he has Down syndrome."  That lasted for a few weeks, and was very frustrating and confusing for me.  I felt like I wanted people to know, but at the same time - did it really matter?  He is just a baby,...with Downs.  I didn't need to explain anything to anyone.  Now I let people ooh and aah, and just stand back and smile with pride.

It also makes me stop and think about other things we say.  For instance, the "R" word is no longer a part of my vocabulary.  I never really used it very often, but I have on occasion referred to a poor driver on the roads as a "R", or referred to a situation as being very "R'd". I had never really thought about it much, but it's really flipping offensive. The other night, I checked Facebook to see what the buzz for the evening was, and someone was using that damn R word!!  The fact of the matter is that my son will have some degree of mental retardation, and when you use the word "Retard" for ANY other reason than speaking respectfully of a person who has such a condition, it's really uncool.  Ah, it felt good to get that off my chest!

We (all the kids and I) were in Walmart earlier today, and a mentally handicapped lady approached us.  I thought she wanted to see the baby, but as it turns out, she was just fascinated with the kickball that was in our cart.  She was with who I presume was her sister and a helper, and they had all they could do to keep her from "bothering" us.  It honestly wasn't bothering me at all, it was kind of fun to see how something so simple as a ball brought her so much joy.  And truth be told, with my three daughters in tow, I saw that it could be a lesson.  Because, sure enough, as we were walking away, my youngest girl said, (a bit loudly) "mom, that lady was sooo weird."  I only hope I was the only one that heard her.  I shushed her, and briefly reminded her that that wasn't a very nice thing to say about someone.  It gave me the opportunity to remind my girls that it's very important to be kind and respectful to everyone, including someone who might seem or look a little differently.  When the girls have asked before about people who have a disability or appear to be slightly different, we simply say "that's the way God made them."

We could all take a step back and reflect a bit on how we think and speak of each other, how we judge those who are imperfect, ...those who are different.  Sometimes our differences are beyond our control, something that we didn't exactly choose for ourselves - like Down syndrome, autism, handicaps we're born with, and many others.  Other times, our differences are a result of choices we make - like how we dress, wear our hair, speak or act.  Whatever our differences are, whether God given or chosen ourselves, everyone deserves love and respect.  Because deep down on the inside, we're all made of the same stuff.  Challenge yourself to change the way you think the next time you encounter someone who's "different" than you.  If you dig deep, you might just realize we're all more alike than we thought.