Thursday, November 15, 2012

Sammy want a cracker?

Every time I look at Facebook these days, someone is posting something they are thankful for.  Several people are sharing something everyday this month - it's 30 days of thankfulness.  Mostly, people are thankful for their families, their homes, their jobs, their friends - everyone's lives are so blessed with these things, and I can't help but be happy for their happiness too.  It makes me think about what I'm thankful for as well.  I too am thankful for my home, for my family, for my kids, for my job.  My life is so blessed, and while I know that, I also know that I take a lot of things for granted.

Last night, I discovered that Sam likes Ritz crackers.  In fact, it's the first truly solid food I've given him that he doesn't spit back out at me.  Now, I know there isn't exactly a lot of nutritional value to a Ritz cracker, but you have to understand the importance of having him have solid food in his mouth period.  By having solid food in his mouth (and I'm not talking about Gerber baby food...that's mush) he is learning how to manipulate the food around his mouth with his tongue, and learning to chew, and this is all a part of language development for him.  That maybe doesn't make a whole lot of sense to you, but to us, this is a big deal.  So, Ritz crackers it is. 

As I stood next to his high chair last night, trying to coax him into holding the cracker himself, I said to him..."Sam, you have to learn to do this yourself you know. I'm not always going to be around to hold your crackers for you."  Kevin, who was within earshot looked at me like I was nuts.  Did Sam reach out and grab the cracker?  No, I stood there while he nibbled on it.  I was just happy that he had an interest in it in the first place!

Today however, as we were getting lunch ready, I dug out my trusty Ritz crackers to see if Sam would munch on them again while waiting.  I grabbed three, hopeful that he would try.  I put one in his right hand and he grasped it - he GRASPED that little cracker like it was no big deal, even though I was just told last week he was "significantly delayed" in the fine motor skills department.  You know what he did next?  He stuck that cracker in his mouth!  Did you hear me?  He moved his hand up and stuck the cracker in his mouth!!  Granted, it was sideways and he couldn't get his mouth around it, but that's not the point - he put it in his mouth!  For the next five minutes, he held onto that cracker for all it was worth and mashed the heck out of it, completely munching it down!  After that another, and another.  I was astonished, in fact, I was crying.  It might sound silly that I would be so excited over something so small, something that you or I would take for granted, but I was so proud that he learned that he could feed himself.  I was so happy. 

I ran back to my bedroom and emailed his teacher and occupational therapist, because they are half the reason he was able to do this!  All the hard work they've done for him is paying off in something as simple as a Ritz cracker!  His teacher replied that I should buy more Ritz and get him a can of that spray cheese because this was truly something to celebrate.  This was truly something to be thankful for!

A couple hours later, a man from my church called, and started talking about the email that I had sent to his wife about Sam's accomplishments.  I started laughing, and explained to him that I sent the email to the wrong person - his wife has the same name as Sam's OT, and I must have mistakenly sent her the email instead.  But he said, no, it wasn't a mistake.  He asked if he could talk about Sam on a radio talkshow that he's doing tomorrow morning.  They will be talking about thankfulness, and how all too often people just talk about the everyday things they are thankful for - their homes, families, jobs, friends.  He was excited to see us be so thankful for something so small as learning to eat a cracker.  In tears, I said "so, it really wasn't a mistake that I sent you the email by accident."  And he said "no Amanda, I don't think it was."  

Yes, the Lord works in mysterious ways sometimes.

So, tomorrow morning, the story of Sam and his crackers will be aired on a local AM radio show.  You better believe that I'll be tuned in and waiting.    

By they way, anything but Ritz won't cut it.  Tonight, I handed him some Town House "light buttery crisps" and he wanted nothing to do with them.  Guess I'm going grocery shopping tomorrow.

There is a bigger lesson I've learned in all this too though.  I'm so incredibly proud of each of these little accomplishments that Sam makes, but these small accomplishments of his also open my eyes to the things my daughters are doing.  Sam is teaching me to celebrate all the small things - even the things that seem insignificant are worth celebrating and being thankful for.

Monday, November 12, 2012

Glasses and Teacups

Sam had his eye appointment today.  I have good news, and bad news - which would you like to hear first?  Well, I'll give you the bad news and hopefully the good news will cheer you up.  There's actually a couple parts to the bad news.....first, Sam is farsighted.  Like a +3.5-+4.0 farsighted.  So, he needs glasses.  Second, there's only a 50-60% chance he'll grow out of this and not have to wear eyeglasses for the rest of his life.  Oh, there's a third part to the bad news...they don't make infant frames in camo.

Here's the good news - remember that Bayley's assessment he struggled with last week?  The section on fine motor skills that he so gracefully failed?  Well - we have an answer.  He couldn't see the damn Cheerio!

Right now, that's all the good news I have for you.  You see, after Sam was born, I read a book called "Bloom", a memoir of a mom's first year with her daughter with Down syndrome.  In the book, the little girl, Nella, had to get eyeglasses and she was so stinking cute, I secretly hoped that Sam would need glasses too.  Well, have you heard the old saying "be careful what you wish for?"

As I was browsing through my limited choices of eyewear for Sam, my spirits fell.  The glasses made for infants are not exactly fashionable.  Not that I'm all about the fashion (that's Marie's department), but come on.  People already stare at Sam, and now we're going to slap a big old pair of plastic-rubber-wrap-around-shiny-blue glasses on him.

While I pondered this image - I realized - hey, if people are going to stare, let's give them something to stare at.  So, I chose the frame that best fit Sam's face and personality.  I wasn't so into the circular "where's Waldo" frames, and Sam's not exactly ready for prep, this is what I chose:

And let me tell you, he doesn't like them one bit.  Can you tell?  I'm hoping the adjustment to wearing glasses full time goes a little smoother once he starts spotting the Cheerios in front of him, and realizes he can pick them up and eat them!

Sometimes, it's awfully hard to understand where the whole "big plan" is heading.  It's even harder to just accept that we really have no control over tomorrow.  As a control freak myself, this is really hard to accept.  But on the same token, I do believe there is a plan.

Have you ever heard the song "The Potter's Hands?"  I sang this song for my brother's graduation service at church and it was sung at Ella's baptism.  I love this song.  It says: mold me, shape me - You are the potter and I am the clay.

It's not easy to sit back and be the clay, and it's not always easy to trust that the Potter knows what He's doing.  This past weekend, I heard a story that struck a chord. (AND a tear duct with me)  It goes something like this:

There was a couple who took a trip to England to shop in a beautiful store to celebrate their 25th wedding anniversary.  They both liked antiques and pottery, and especially teacups.

Spotting an exceptional cup, they asked "May we see that?  We've never seen a cup quite so beautiful."

As the lady handed it to them, suddenly the teacup spoke, "You don't understand.  I have not always been a a teacup.  There was a time when I was just a lump of red clay.  My master took me and rolled me, pounded and patted me over and over and I yelled out, "don't do that.  I don't like it!  Leave me alone," but he only smiled and gently said, "not yet."

Then WHAM!  I was placed on a spinning wheel and suddenly I was made to suit himself and then he put me in the oven.  I never felt such heat.  I yelled and knocked and pounded at the door.  "Help!  Get me out of here!"  I could see him through the opening and I could read his lips as he shook his head from side to side, "not yet."

When I thought I couldn't bear it another minute, the door opened.  He carefully took me out and put me on the shelf, and I began to cool.  Oh, that felt so good!  "Ah, this is much better," I thought.

but, after I cooled he picked me up and he brushed and painted me all over.  The fumes were horrible.  I thought I would gag.  "Oh, please, stop it, stop," I cried.  He only shook his head and said, "not yet."

Then suddenly he puts me back into the over.  Only it was not like the first one.  This was twice as hot and I just knew I would suffocate.  I begged.  I pleaded.  I screamed.  I cried.  I was convinced I would never make it.  I was ready to give up.  Just then the door opened and he took me out and again placed me on the shelf, where I cooled and waited and waited, wondering, "what's he going to do to me next?"

An hour later he handed me a mirror and said, "Look at yourself."  And I did.  I said, "that's not me.  That couldn't be me. It's beautiful.  I'm beautiful."

Quietly he spoke: "I want you to remember.  I know it hurt to be rolled and pounded and patted, but had I just left you alone, you'd have dried up.  I know it made you dizzy to spin around on the wheel, but if I had stopped, you would have crumbled.  I know it hurt and it was hot and disagreeable in the over, but if I hadn't put you there, you would have cracked.  I know the fumes were bad when I brushed and painted you all over, but if I hadn't done that, you never would have hardened.  You would not have had any color in your life.  If I hadn't put you back in that second over, you wouldn't have survived for long because the hardness would not have held.  Now you are a finished product.  Now you are what i had in mind when I first began with you."

The moral of this story is this:  God knows what He's doing for each of us.  He is the potter, and we are His clay.  He will mold us and make us and expose us to just enough pressures of just the right kinds that we may be made into flawless pieces of work to fulfill His good, pleasing and perfect will.

So when life seems hard, and you are being pounded and patted and pushed almost beyond endurance; when your world seems to be spinning out of control; when you feel like you are in a fiery furnace of trials; when life seems to "stink" this this:  Brew a cup of your favorite tea in your prettiest tea cup, sit down and have a little talk with the Potter.  (Author Unknown)

I am clay.  Sam is clay.  There is a plan, and over the course of our lives, it will take shape.  My friend, David's mom, frequently says "it's hard to understand the big plan" and "oh what I would give for a peek up His sleeve" and I couldn't agree more with her.  I guess we'll just have see this story as it unfolds.  I pray for the strength and courage to enjoy the ride.

And while on that ride, I just might make it my mission to create stylish plastic-rubber-wrap-around glasses for littles ones - they'll come in camo, pink polka dots and many, MANY more.

Friday, November 9, 2012


Sam at a Halloween party, sitting with the
"mystery" gorilla

Tuesday evening....
The girls are in bed.  It's just Sam and I, snuggling on the couch.  Kevin is still at the town hall serving as election judge.  Sam is on my lap, belly to belly and looking up at me with that smile that gets me every time.  He does one of those long "aaaah" sighs and smiles his biggest smile - the kind that reaches his eyes and tugs at my heart.  Then I get the goosebumps.  You know, the kind that nearly bring tears to your eyes.  It was like a surge of love and pride for my precious guy.  After the day he'd endured, it's a miracle that he's got any smile left in him at all.  But the fact that he does, makes me love him that much more.

Right after Sam was born, the staff at our hospital scheduled us to attend a Down Syndrome Clinic at the Coordinated Treatment Center.  Basically, instead of me taking Sam to eight different appointments, to see eight different doctors in eight different locations on eight different days, we go to one place on one day and the appointments and doctors come to us.

That day was Tuesday, and we had to check in at 8:00 am.  For a little guy who's used to sleeping until at least 8:00am, it's been a long morning already.

First stop - cardiology for an echocardiogram.  Sam should have had this within the first few days of his birth, but because the pediatrician believed his heart sounded perfect, we never had the test.  I had asked about it several times since then, but was always told he had a good heart.  I had come to terms with the fact that the doctor was probably right, until I read an article that said "it's extremely important for every newborn with Down syndrome to have an echo."  Why?  Because there is a 50% of major heart complications.  50% is pretty huge - you are either on the good side of a coin or the bad.

The echo took nearly an hour, partly because Sam was getting restless and had no intentions of sitting still.  But also, we discovered that because of the placement of his heart, it was hard to find 'windows' between rib cages to get good pictures of the heart.    In the end, the technician was able to get enough views to conclude that Sam was indeed on the "good" side of the coin.  We also ran an EKG to get a baseline for his charts.

He has a good heart.  This makes me smile.

Next, we were off to meet with an occupational therapist who conducted a Bayley's assessment on Sam.  This basically was a series of tasks to see where Sam was at with his development.  He scored at a 6 month level for his cognition (smarts) and gross motor (rolling, pushing up on arms, sitting), which means he is at the low end of normal and not yet considered delayed.  However, when the OT put a Cheerio in front of him and he didn't grab it, or the shiny red block, or the little yellow duck, he scored at a 4 month 10 day level, meaning that he is "significantly delayed" in his fine motor skills.  At first, I felt very defeated.  I ask myself every day is we're doing enough for Sam for him to achieve, and this felt like a little slap in face saying "no you're not doing enough."  But when I look back now, considering the circumstances, I wouldn't have grabbed that stupid Cheerio either.  He was hungry and exhausted from the echocardiogram.  He was sitting in a Bumbo chair longer than he's used to, so he was getting physically tired.  The last thing on his mind were the Cheerio, block and duck.  He does have some fine motor skills, and it may take a little concentration on them to get them to develop to where they need to be - but it's not something we can't do.  We're on Sam's schedule here, not Bayley's.

Halloween - with Grandma, sisters and cousins
After OT, we met with a nutritionist.  We talked about what Sam eats, how often he eats and stuff like that.  It was pretty basic.  She encouraged me to include meat in his diet.  Have you opened up a fresh can of Gerber Turkey with Gravy lately?  It looks, smells and, I assume, tastes like cat food.  Ugh.  After some calculating, we also determined Sam is in the 89th percentile for height and 87th for weight on the "normal" charts.  They do have adjusted charts for children with Down syndrome, because typically, they grow at a different rate.  Apparently, Sam is in the 100th percentile for both height and weight - meaning that if you were to put Sam in a room with 99 other kids with Down syndrome, he would be the biggest.  Not in the top ten, not the second or third biggest, but THE biggest.  That's my boy!

Speech therapy.  It sounds weird, because he's not exactly spitting out words yet, but it's something that is developing constantly, even at this age.  There's not a whole lot to work on here for now, other than to introduce new foods with different textures so that he has a chance to learn how to manipulate them around his mouth.  In doing this, he will develop the muscles in his mouth, hopefully making learning to talk easier down the road.

We then met a social worker, who provided us with applications for programs that Sam may be eligible for because of his diagnosis.  I struggle, because I have pride, and don't feel that we need any "help" from the state.  But I did learn some interesting things.  For instance, if we feel that we need to be concerned about Sam wandering out of the house in the middle of the night when he gets bigger, we can apply for funds to help install an alarm system in our home.  Or if there are any other improvements that would need to be made to our home to better Sam's life, we can apply for those funds.  It's still hard to think about accepting any help, but the bottom line is that we will want to do everything for Sam that we possibly can - and we are thankful that programs are in place to help people like Sam, both now as a child and later when he's an adult.

We met with an audiologist to test Sam's hearing as well.  He passed the first test (I forget what it was called) where the audiologist measured the pressure in front of and behind the eardrum.  The left ear was great, the right ear was "ok."  In the next test, (I forget the name of this one too...super mom, eh?) sound was administered into both his ears.  His left ear passed, but his right ear had trouble.  The doctor encouraged us to schedule an appointment with an ENT and to have Sam get tubes.  There is such a huge window of language development right now for Sam, and for him to be able to hear things properly is imperative.  It's likely that he has fluid built up, and tubes will help to keep that clear.  We have yet to schedule that appointment.

At some point during one of these visits, Sam's godmother Kim came to join us for the day.  Kevin was unable to attend these appointments because he is an Election Judge, and after all, it is election day.  Kim will tell you that I didn't need her there, that I had it under control.  But I will tell you, it was wonderful to have someone there with me.  Not just to have someone to help hold, feed and change Sam, but someone to keep me strong.  There were a few points throughout the day where I just felt defeated - but having her support there was wonderful, and it helped me get through the day.  In trying to find someone to fill Kevin's shoes for the day, I wanted someone along who would listen as intently as Kevin would have - someone who loved Sam as much as we do.  Kim was the obvious answer.  I am very thankful she could be there with us - especially in the waiting room at the lab...but that story will come a bit later.

Mom's cousin Amber - she's the biggest baby lover EVER!
We got to meet with a pediatrician.  She was fantastic.  She answered so many questions that I had, and still took the time to pick Sam up and snuggle him.  Not many doctors do that these days.  In giving him the once over, she pointed out that he has "chubby boy syndrome" - I won't go into details here, just for the sake of Sam's dignity - but it's sure better than what other doctors have called it - "the magical disappearing penis."  I don't have a penis - but if I did, I'd be mortified if it could "magically disappear."  So, we'll take "chubby boy syndrome" and know that down the road when we're not so chubby, our plumbing will reappear.  The pediatrician also pointed out some really positive things going on with Sam's body - his magnificent heart, his size and strength, among other things.  She said to me "Sam was born with a certain amount of potential, and it's our job to unlock it."  I have taken these words to heart and will live by them.  It makes perfect sense.

Ok, I think I've covered all the stops we made....oh wait, I almost forgot the lab waiting room.  We had left our coats, stroller and diaper bag on the first floor in our "base camp."  Naturally, Sam would choose a waiting room on the second floor to do his business.  And I'm talking DO his business.  Have you ever changed a diaper whereby more of the poop is on the outside of the diaper and smeared down the leg than what's actually inside the diaper?  Yes, this was one of those diapers.  Kim hustled back to the first floor to grab the diaper bag.  In the meantime, I held Sam out away from my body to avoid any more crap being smeared into my favorite bluejeans.  The receptionist brought over a large paper towel to help.  Kim got back and we booked it over to the nearest bathroom.  Guess what's not in the bag?  Guess what's sitting on the bed in our base camp room?  The wet wipes!  No worries, we can just use paper towels and wet them down.  Sure, no problem...until Sam decides to pee every time the towels touch his hind end.  No joke, he peed FOUR times on that changing table - and you're thinking I'm pathetic for not getting the diaper on him quick enough.  But here's the deal - I was down to my last diaper and I had no choice but to soak it up with the paper towels and save the diaper for the hour long ride home.  It took about a dozen paper towels, and the onsie went in the trash because I wasn't carrying that stinky thing around with me - but we got the job done and headed back to the lab.

They drew a LOT of blood, for a CBC and a thyroid screen.  Sam screamed his head off the whole time.  Poor guy, and he didn't even get a sucker when it was over.

The only thing we missed during the day was our eye appointment.  He was supposed to see an optometrist, but after the pediatrician had seen him, she determined it would be better for him to see an opthalmologist.  Sam spends a lot of his day with his eyes crossed, and I'm assuming it's because of a focus thing.  The doctor told me that most infants grow out of this by about three months when their eye muscles get stronger, but Sam's never did, so now we have to see an eye doctor.  That appointment is next week.

Last but not least, Sam got his second dose of the flu shot and we were sent on our way.  We arrived at 8:00am, and left just before 4:00pm.  It was a seriously long day for both of us.  But, I will say it was a great day.  A couple small hurdles were tossed on the track in front of us, but they're not anything we can't leap over and keep on keeping on.   Go Team Sam!

Saturday, October 27, 2012

Best Friend

Best Friend.


Mejore Amigo. (Spanish)

Meilleurs amis. (French)

Miglior Amico. (Italian)

By the way, I have no idea how to pronounce those last two....but all these translate to "Best Friend."

Today, I took all the kids to visit David's family.  First, we visited the Planetarium and watched a presentation called "The Little Star that Could."  Let me tell you, I wasn't exactly a science whiz when I was a kid, and I'm pretty sure I learned more about our solar system today than I did throughout my entire education.  (But that's because I only paid enough attention to get by and pass the tests!)  Sam loved the planetarium and watched the globe above us like it was the coolest thing he's ever seen - wait, it probably was the coolest thing he's ever seen...

Anyway, following the planetarium, we went back to David's house for a yummy dinner and visiting.  The kids played board games and chased each other around the back yard.  Sam and David had their first fight - Sam pulled David's hair, and to get revenge, David stole Sam's sock.  I told you these kids are more like other kids than not.

David's family - they are our friends, and we are blessed that our paths crossed.

After our visit, we went shopping - and not just a quick trip to Walmart like usual.  I'm talking the girls actually found their wallets, made Kevin and I pay up on their chores money and we went SHOPPING!  I'm not sure exactly what I was thinking when I drug four kids into the mall.  We had two stops - Claire's for some new earrings for the girls and Bath and Body Works for all of us girls.  Sam was a trooper, he didn't even complain when we were trying the newest scent of shimmer body spray and he ended up with glitter all over his head.

While we were sniffing every flavor in the store, a young woman approached me, reached for Sam's hand and asked me what his name was.

"Sam" I said.

"How old is he?" she asked.

"He's almost seven months"

Next, she smiled, and in the most genuinely-full-of-love way, she added "my sister has Down syndrome, and she is my best friend."

She didn't just say - she's cool, or she's neat, or I love her - she said she is my BEST FRIEND.

Do you know what it takes to be a best friend?  What an honor for that woman's sister, or maybe the honor is for the woman who spoke to me.  To claim someone as their best friend, they are indicating they love this person so much it hurts sometimes and they would do just about anything for their happiness.  To claim someone as their best friend is to say the friendship is the most important friendship they have.  To claim someone as their best friend means they fully trust, fully believe in and fully accept someone just as they are, with no exceptions.

Someday, I pray, someone somewhere will tell me that Sam is their best friend.  I will be bursting with pride.  Will it be Ella?  Marie?  Grace?  Does it even matter who it is?  I hope for Sam, that we'll raise him and he'll grow up to be an honest, loving, trustworthy, openminded, faithful and caring person, someone that people want to claim as their best friend.  That's the job we take on with all our children I believe.  But after hearing the woman in Bath and Body Works today saying that her sister with Down syndrome is her best friend, and just the way she said it - I have to believe the bond between Sam and his friends will be extra special.

Tuesday, October 23, 2012

The future of a family

Our daughters are very inquisitive little creatures.  They're always asking how things work, why they work, what their purpose is and so on.  The other evening, Ella asked Kevin where Sam's middle name came from.  "Jon" is my dad's, my brother's, Kevin's and his dad's middle name.  Needless to say, it was a no brainer that the name Jon should be passed on to our son.  But that wasn't enough for Ella, so she asked where the name came from originally.

Kevin is and always has been fascinated by family history.  He launched into a lengthy and detailed description of the first Jon (Kevin's great great grandfather) who came over from Sweden to build a new life in America.  He went on down the lineage of our family until he reached Sam.  And Ella, who doesn't miss a beat, says "and Sam can pass the name onto his kids someday."

Well Ella, that may not be the case.  At the risk of stating the obvious, individuals with Down syndrome don't usually have children of their own.  First, pregnancy for a woman with Down syndrome can be very complicated because of heart related problems associated with Down syndrome and that's IF she can become pregnant in the first place.  Typically, fertility in men and women with Down syndrome is greatly reduced - some believe males with Down syndrome are sterile, although it has been reported that two men with Down syndrome have fathered children.  There is also a 50% chance that a child conceived by adults who have Down syndrome would also have Down syndrome, meaning that the pregnancy would often end in miscarriage.  Needless to say, raising any child is a huge task and the same is true for a parent who has Down syndrome.  Supporting a family could be difficult for an individual with Down syndrome.

With that said, Sam having children is not something that we are anxiously awaiting.  That's not to say that we wouldn't want him to have children, because of course that chapter in the grand plan is a long ways out yet.  However, we have accepted the unlikelihood of Sam giving us grandchildren.  Does that sadden me?  Yes of course, because the gift of a child is quite possibly the greatest gift there is.

Now, try to explain this to a nine year old.  

In my early adult years, I experienced some extreme anxiety and panic attacks.  I've said many times that I'm lucky I didn't scare Kevin away with my constant state of fear and panic.  Unfortunately, I think I've passed a little anxiety on to my children.  When Kevin was trying to explain this whole "Sam-probably-won't-have-kids-and-pass-on-the-family-name" thing to Ella, she went into a state of panic.  She was hysterical and ended completely shutting down.  We let her be for a few minutes and then I tried to talk to her, and it really didn't go so well.  Between her sobs, she choked out phrases like "our family is going to end" - "our family is going to disappear" - "I hate Down syndrome" - "it's not fair" and the worst, "it's Sam's fault!"

My heart broke.  When I've had this conversation with other adults, it's easy to crack jokes and say things like "it's ok, the girls will have lots of babies and then Sam will be 'Uncle Sam'!"  While that gets a good laugh, it still hurts on the inside.

There are most certainly things in life that will be different for Sam because he has Down syndrome, and there are most certainly things in our lives as his parents that will be different as well.  But different isn't always a bad thing.  Our family will have the privilege of experiencing things that other families don't - some good, and some bad - but it all makes us just a bit stronger in the end.

Thursday, October 11, 2012

Beiber Fever

the Paparazzi snapped this shot recently near St. Paul, MN  (teehee)
It seems that wherever we go these days, everyone knows who Sam is.  I take him to the clinic and I barely have a chance to announce who we are and why we're here before the receptionist says "so this is Sam" with a big smile plastered across her face.  Today, while standing at said receptionist's counter, I heard an audible gasp from far across the room and glanced over to see a lady in the eyeglass store ogling over Sam.  It's like having Justin Bieber riding my hip everywhere I go, only this star pukes on me.  My kid is like a celebrity.

And I've been told we should celebrate.

Sam's teacher and therapist come every week, and every week they sit in my living room playing with him and remarking over how strong, and wonderful, and amazing, and smart and awesome he is.  While I think so too, I can't help but wonder how much of what they say is for my benefit.  I expressed these concerns to Kevin and to my sister in law, and they both said "ask them!"  So a couple weeks ago, I point blanked them.  I asked them how much of the praise is for my benefit and how much of it is true of Sam.  Our occupational therapist said they do share some of these things because they want to encourage me and want me to take pride in all the wonderful things that Sam is doing.  Before she could finish her sentence though, Sam's teacher interrupted with a firm "both."  She agreed with our OT, but she added that they really are impressed with Sam and where he is at.  They have been doing their jobs for many many years, and in all those years they've worked with a lot of different children and they believe Sam really is strong, wonderful, amazing, smart AND awesome.  Does that indicate anything about Sam's future?  No, not at all.  Does it mean that Sam will do better, go farther, achieve more?  Not necessarily, but his teacher said (and I quote) "you have reason to celebrate."

Reason to celebrate.

Oh how I wish I could go back to those first few hours after Sam arrived and take back the time I wasted feeling sorry for myself, for my family.  I would give anything to be given the chance to go back and celebrate.

But, since we can't go back and erase the mistakes we make in life, we can make up for them by celebrating this moment.  Today, Sam had his six month checkup - he weighed in at a whopping 19 pounds and 5 ounces and is 28 inches tall.  He is healthy, and he is growing and we are celebrating!   We are celebrating each small victory as they come - each of his individual accomplishments, each eye he has opened, each heart he has touched.  We are celebrating this amazing little man, this amazing gift in our lives.  Tomorrow morning when Sam wakes up and starts scratching at the side of his crib like he does every morning, I will celebrate that I get to share another day with my miracle.

Sunday, September 23, 2012

Cooled Off

So, we've had a little time to cool off over the whole use of the "R" word thing.  You see, we do realize that the joke was not directed at Sam, or even directed at people with Down syndrome.  It was just poor use of a word that is all too often used improperly.  Unfortunately, this happens all the time.  Kevin and I have both experienced it much too frequently in the past several months.

Joking about "retards", "mongoloids" and "idiots" or using these terms to name call, is not only hurtful, it's incredibly disrespectful.  Not one person on this earth is without fault or imperfection, and one should take that into consideration before choosing hurtful words.

After our tempers were heated though, we were asked by a few of our family and friends - "at what point do you just let it go, knowing that it's not directed at Sam?"

The answer for us is simple: never.

We became Sam's parents when he entered this world, and we also became advocates for Sam and for millions of special needs individuals.  If we can open eyes, one person at a time, we'll have done our job.  The use of the "R" word, is too often used as a demeaning and degrading term, but by helping people understand how demeaning and degrading it is to families like ours, perhaps we can eliminate the word altogether.

As I said before, our tongues all slip from time to time and we all say things that can be hurtful towards others.  I know that I have changed the way I think.  I want to change the way others think too.  Words can have such a huge impact on the people around us.  I will show you that Sam's life is valuable, and you will grow to admire his accomplishments, and hopefully you'll completely stop using degrading language when speaking of others.

Tuesday, September 18, 2012

Heavy Hearts

As Sam finished the last drops of his bottle tonight, Kevin came over and scooped him from my arms.  I thought that he was just being nice - I'm sure he could see how much work needed to be done around the house and holding the baby so I could get the work done is more his style than washing the dishes himself.  I got a load of laundry done, dishes washed and the floors swept and I brought an armload of toys into the living room to put away.  And as I did so, this is the story Kevin shared with me:

"Today at work, JimBob and Harvey (I've changed the names of the people involved to protect them...although I feel they don't even deserve protecting at this point) were talking about a piece of property that is for sale right behind Hank's house and JimBob says to Harvey 'wouldn't it be funny if they built an insane asylum in Hank's backyard and a bunch of RETARDS could sit and stare at Hank?"  At this point, Harvey joins in the boisterous laughter as the joke hangs in the air.  Kevin was standing right there.  Until he walked away of course - and realizing what he'd said JimBob says "I mean RETARDS like criminals."

Wow.  That is ignorance at it's finest there folks.

To think, just before these statements were made, these men were friends.  These men were people that both Kevin and myself respected and we believed they respected us. 

I realize that our tongues slip from time to time, and we all say things we wish a hundred times over that we could take back.  I just wish, I pray, that people would think before they speak.  And I'm not just talking about what they say to us or about us - this goes across the board.  Respect is something that we earn of and from each other, and unfortunately, not everyone deserves or earns the respect they wish to have.  Respect, I believe, is earned through our words, our actions and the way that we treat others.  

While Kevin added a few *bleep bleep bleeps* about his feelings towards these men at this point, I added that I hope that people like them open their eyes and hearts when they get to know Sam, if they're ever given the wonderful opportunity to know him. 

And if you JimBob, or Harvey, are reading this - I want you to know that what you did to my husband was hurtful and I fully believe you should apologize to him.  He's lost respect in both of you for what you said today and it's a shame.  I hope that before you say something so completely inconsiderate again, you'll stop and catch your tongue.

Hey, I'd be pissed too.
Think before you speak - it really is that simple.  And please, before you use the word RETARD as a slang for 'criminals' of all things, go grab yourself a flipping dictionary and do your homework.

Thoughts on Walking...

It's kind of ironic, I used to hate walking.  In high school, my mom would darn near beg me to go on walks with her, and I would come up with every excuse in the book not to.  Why?  Because I was a lazy teenager.  When the haybales were put up and the calves fed, that was enough for me.  I bet my mom walked 10,000 miles while I was living at home, and I only joined her for about 10 of them.  Literally.

As an adult though, I LOVE walking!  For me, there is nothing better than stretching the legs on a brisk walk in the great outdoors.  It's even great to pack the stroller with a kid and go.  Where I live, I have to plan my walks carefully though - if I head east, I have to climb back up that massive hill.  But if I start out going west, I have to avoid being eaten by the man-eating chihuahua that lives next door.  Ok, it's not a chihuahua, but it's about the size of one, and ok, it probably couldn't take me down, but it'd be too close of a call for me to risk it.  Regardless, I make these treks regularly because I love walking.

People walk for causes all the time.  There's the Alzheimer's Walk, the Cancer Walk, the Walk for ALS, the AIDS Walk, and so many more.  We power walk, speed walk, and we walk and talk.  We put one foot in front of the other, and we walk.

How about a Buddy Walk?  In 1995, the Buddy Walk began as a way to raise awareness for Down syndrome - to promote acceptance and inclusion for individuals born with Down syndrome.  That first year, 17 walks took place across the United States.  This year, there will be over 250 walks held worldwide.  What for?  To open people's eyes, and raise awareness.

I participated in the Buddy Walk this past weekend in Watertown, SD.  I will confidently say it was the single most inspiring day of my life.  I was in awe as hundreds of people formed a line and walked to support people like Sam.  The day was filled with music, fun activities, great food and best of all, dancing clowns!  The whole atmosphere was one of celebration.  We were celebrating amazing lives and celebrating our own ability to advocate for people with Down syndrome and raise awareness that everyone, no matter what their ability or 'different'ability deserves acceptance and inclusion.  Let me say, it was pretty stinking cool.  It was pretty stinking emotional too - after gazing at the biggest American flag I've ever seen and listening to the National Anthem, the walk began with the song "Together We Can Change the World" blaring across the yard at the Redlin Art Museum.

Sam and David
Team Sam

Team Sam was represented by myself, my dear friend Jodi, Sam and my three girls.  We joined David's family at the walk - David's mom made a new tshirt for Sam that reads "Love doesn't count chromosomes."  We are gearing up for another walk in St. Paul.  The walk in St. Paul is actually a Step up for Downs walk, which has the same goal as the Buddy Walk - to raise awareness.

David and mom, Sam and myself
So, I have to be honest, I've been asking myself a lot lately - what exactly are we raising awareness of? I know that sounds silly, and the answer maybe is really obvious to the average passerby, but to me, it hits really close to home.  What is my goal as the mother of a son with Down syndrome - why am I walking?  What message do I want my miles to count for?

First, I not only want, I NEED people to know what Down syndrome is.  I can copy and paste another dictionary definition of it if I need to - but simply stated: at conception, the chromosomes split incorrectly, and a person ends up with three of the 21st chromosome instead of the usual two.  That may sound very scientific, but I also need people to understand (though it took me a while to understand this myself) that there was no science involved in Sam's third chromosome.

Second - I want people to understand what it means to have Down syndrome.  At this point in the game, I myself don't know the answer to this yet.  But as we continue this journey, I hope I can open myself up enough to fully understand what life will be like for Sam - the good and the bad.  As much as I fear that Sam may struggle with acceptance and inclusion,  I hope we can show the world that while there may be things he's not so great at, there are going to be things that he excels at.  And I pray we find ways to use those gifts of his to inspire others and open hearts to cheer him on along the way.  There's more to this...a lot more, I know I have a lot to learn yet.  Life right now is like it would be with any other baby - other than the bonus of having teachers and therapists here to help us progress.

Lastly, well, thirdly...(I suppose there will be no 'last' as this part of advocacy will continue throughout our lives) I want people to see the important role that people with Down syndrome play in our lives and in the communities in which they live.   A person with Down syndrome is as valuable to a community as is the bank president, as is the mayor, as is the teacher, as is the grocery store clerk.  Their friendships and relationships, responsibilities and achievements are as important as any other.

Without Sam in my life, I would still be the same closed minded judgmental person that I had tended to be in the past.  Without Sam in my life, the depth of my love would never have grown.  Without Sam in my life, my life would have been fairly simple - BUT, I would never have known my own strength and I would never have understood just how many blessings I have in my life.  As Kelly Clarkson said once or twice - "my life would suck without you."  With Sam, I see more, love more, understand more, believe more.  And that's just what he's doing in my life - imagine what he'll do in his community in the years to come.  If you take what he's done for me,  and multiply that by the number of people whose lives he's touched and will equals WOW.

Wednesday, September 5, 2012

Times are Flying

September is here.  The air is still hot, but the leaves are falling like it's October at our house.  The seasons are once again changing, and it's just a gentle reminder of how quickly time is flying by.  We sang happy birthday to Sam last Thursday in honor of is "5 month birthday".  Where have these five months gone?

Sam is changing so quickly.  Every day he is stronger, every day he is more alert and active.  We had him in for his four month checkup a couple weeks ago, and he was 16lbs and 26 3/4 inches long.  He was in the 50th percentile for weight and the 90th for height.

We've been on a little break from therapy but are looking forward to that beginning again this upcoming week.  He will see his teacher and his occupational therapist once a week.  Up until this point, Sam has done nearly everything we've asked of him and expected of him.  I worry that when we start this fall with therapy again, it will be more work for him and that we will begin to expect more of him.  I'm so very scared for the day that he's unable to do what we ask him to do.  I have to remind myself that Sam is in charge of the pace, and whether that pace is quick or pokey, it's ok.  He will accomplish each skill and reach each milestone like every other child, just at a different pace.

I've been doing a little "end of summer" cleaning around here.  I came across a huge stack of cards and well wishes from friends and family that we received after Sam was born.  I don't know about you, but I can't keep all the cards we receive.  Can you imagine?  You'd need a semi-trailer parked in your backyard to store them, along with all the extra papers that come home with the kids, and other things that we think we ought to save but really don't have room for.  So, I have a rule of thumb around here.  I keep the cards that have personal messages in them, and scrapbook them or tuck them safely into each kids keepsake boxes.  In Sam's case, there were some cards that had very kind words from very kind people in our lives.  I sat down the other day to sort through all the cards and to read the messages in each one.  I'm not sure why I thought I could do that without feeling a flood of emotions, but I did.  On tough, discouraging days, these messages bring us hope:

"Congratulations on the birth of this beautiful gift from God!"
"What wonderful news you bring!"
"Congrats on the new addition to the family!  He has so many new people to love him!"
"Welcome to the family Samuel Jon!  So glad he is here to love and celebrate his life!"
"Congratulations on your precious baby boy!  What a blessing!"
"Sam-you are a very special little guy!  You are so lucky to have such special loving parents and 3 adorable big sisters who will love you always.  We are so happy to have you in our family!"
"To Sam and family - God enriches our lives with children."
"Sam - so happy to meet you!  You are an amazing baby boy - I see great things happening for you and because of you!"
"Congratulations on your beautiful baby boy.  'Samuel' means 'gift from God'"
"Wishing you much love and God's blessings on your family.  Samuel is a beautiful gift and completes your group.  The girls are awesome sisters and we love your family dearly!"
"Welcome Sam!  We have been waiting and praying for your arrival!  God loves you and so do I"
"Congratulations on your new son!  Samuel is one special person to be born into a wonderful family as yours.  Life is so precious, enjoy him abundantly."

That last one also included the following verse:  "Jer. 29-11 I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."  This verse has become a bit of a theme verse for me.  In fact, in the bottom of my purse as we speak, there is a smooth white rock that has Sam's name written on it along with the first phrase of this verse.  It comes with me everywhere I go, and each time I go in search of my chapstick, I bump into it and my heart smiles just a bit.

Yes, time is flying.  We say all the time to ourselves and to each other to not take a single day for granted, to stop sweating the small stuff and to enjoy each day like it might be our last.  All of these things are easier said than done as we fly through each day in such a hurry from one thing to the next, as we  worry about the laundry and housework and as we forget to stop and smell the roses.   I myself am as guilty at the next person when it comes to all of these things.  I need to slow down and take more time to enjoy my children, to appreciate everything in my life.

In fact, just yesterday as I was feeding Sam, him and I were enjoying some peace and quiet in the downstairs of our house.  Upstairs, the girls were supposed to be cleaning their room and the play room.  Anyone who knows these girls knows that a task like that could never be completed without at least a small amount of bickering.  And of course, before we knew it, they were yelling orders at each other and complaining about who was doing more than their share of cleaning.  I really needed them to get those rooms clean, the mess was really getting under my skin.  I can only take so much of the arguing before I myself chime in and remind them what they should be doing, and to stop yelling and arguing with each other.  Funny thing, they didn't hear me the first time.  So, I yelled a little louder.  Believe it or not, I still was not heard - so I  hollared.  At this point, Sam started kicking his little legs on my lap and cranked his head around to look at me and his eyes very clearly said to me: "mom, chill.  It's not a big deal, don't sweat it."  And then he went back to his bottle.

He may not be able to talk or communicate with us yet, but his messages to me are very clear.  "Slow down mom, take it a day at a time, and stop worrying about the little things.  Enjoy this, enjoy me, enjoy my sisters - time is flying mom."

Thursday, August 23, 2012


I think I left the hospital with my fists flying.  I had this idea that the whole world would be "against" Sam and his "different" abilities and that I would spend my entire life defending the value of his life.  It didn't help that as we walked down the hallway of the hospital on our way out that day, a lady commented on the adorable quilt that was draped over Sam.  Um, what about the adorable baby underneath?  I simply said "thank you" and went on my way, but it stuck with me.  It bothered me and I couldn't help but think did she see Sam, and think he wasn't adorable?  Did she see there was something "wrong" with my baby and the only thing she could think of was to make a remark about the quilt and go on her way?  I'm hoping she's an avid quilter who honestly only saw the quilt and never even saw the baby, but I highly doubt it.

I remember feeling so anxious when I had Sam out in public the first few times.  Now I sit back and laugh at myself because I feel nothing but pride for my Mr. Wonderful.  It was not shame that I felt, it was fear.  Fear of him not being accepted, fear of him not being loved, and fear of what people thought.

In the months that have passed, I've discovered I didn't need to leave the hospital with my shield up.  More people than not are overwhelmingly loving towards Sam, and eager to accept everything that he brings to the table.  However, I'm sad to say we get "looks" every now and then.  Sometimes, I (strangely) wish that Sam had more physical features of Down syndrome so that people didn't have to stare so long to figure out what is "wrong" with him.

I've gotten looks that say "I'm sorry", I've gotten looks that say "how precious" (these people know, and I would venture to guess they have someone like Sam in their lives) and I've gotten looks that plant a big question mark on people's faces.  Why is it that we stare?  Why is it that we do a double take when someone who seems different than us walks by?  I know I've done it myself, but I don't quite understand it.  And now, I'm the mother of one little boy who people stop and stare at.  I'm the mother of one little boy who makes men and women alike do a double take, as if they've see a unicorn prancing by.

I was talking to my sister in law, Kelly, about this.  She sure has some wonderful advice sometimes.  The other day, I was ranting on about the people who look and stare, and I asked "what do I do?  What can I say to them?"  She says...."Why don't you say: 'hi, this is Sam.  Sam has Down syndrome.  The next time you see someone like Sam, why don't you stop and say hi and do your best to make them feel special."  Nicely put.

I, on the other hand, have considered starting a t-shirt business, and my top sellers would say:

"It's just an extra chromosome, don't worry,...I don't have the cooties"
"I love my son (brother, grandson, nephew, godchild) with Down syndrome."
"Am I rocking this extra chromosome, or what?"
"Down syndrome doesn't discriminate, why do you?"
"My baby has more chromosomes than your baby!"
"There's really nothing to feel 'down' about."

9 out of 10 people just smile at us.  Thank you.  For those of you on this team, the ones who accept and love Sam, and commit to spreading the word that he doesn't have cooties, we love you.  It will be my job, one from which I'll never retire, to spread the word that we are all more alike than we are different.  And if you don't hear me the first time, I'll gladly make you a t-shirt.

Monday, July 30, 2012

Don't you Dare

I woke up on the 16th of July with a new song in my heart, literally.  I'm a composer, and before I left the hospital with Sam, I knew there would be a song to be written someday.  That Monday morning, it started to surface.  With it came a new sense of calm and peace - a giddiness and excitement a long time coming.  I was in such a mood that Ella said "mom, you're acting weird today."  I now call it the day the clouds lifted.  It only took 109 days of gray attitude, but the sun was finally shining.  Am I still scared as hell about Sam's future?  Yes, I will always be scared.  Do I still wish with every ounce of who I am that he hadn't been dealt this hand?  Of course.  But am I sad anymore?  Heck no.  Have I finally embraced what could be the best thing that's ever happened to me?  Yes, finally.

I brought Sam along to our hometown kickball night that week, and I remember sitting in a camp chair with him on my lap.  He was in one of the best moods ever and was chattering up a storm with me.  I talked back to him and we had ourselves a great conversation.   Children came running over to say hello to "baby Samuel" and pet his fuzzy little head.  I've wondered when the day will come that the other kids start asking questions.  The day is here.  The days like this will continue.  "Why does his tongue hang out all the time?"  "Why does Sam need a teacher?"  "How come he can't sit up?"  "Why are his eyes funny looking?"

Unfortunately, when Sam was born, I think we received more "I'm sorry to hear that" comments than the standby "congratulations".   I got so tired of hearing the word "sorry" that I wanted to puke.  I didn't want to be the center of people's pity.  I didn't want to be felt sorry for.  I didn't know exactly what it was that I wanted at that time, but I knew it wasn't sympathy.

I've since discovered what I want.  I want to share him.  I want to share his love with the world.  I want you to know how unbelievably lucky I am to be his mother.  If you could just once, be the one to peel him from slumber in the mornings and see him crack his eyes open, take one look at you and offer up the most beautiful smile ever, you would understand.

The questions, the comments,'s in my nature now to stand up and defend, and I suppose it will always be that way.  But I want to share something with you that I find so remarkably beautiful, I can hardly comprehend that it was my child who did this...

"Dear Sam and Amanda,
This is a little late in arriving but the message is the same.  Thank you, Amanda, for trusting me to hold Sam during worship services.  I felt so very privileged to hold God's precious gift in my arms.  Thank you, Sam, for being so good and for providing me one of the best worship experiences I have had.  I just held you, felt your heart beating, listened to you breathing and listened quietly to the entire service. I didn't worry about the words and notes to the songs, listened to the liturgy, and sermon and just felt the worship.  It was truly a beautiful experience.  Thank you both for providing me that and any time again."

I am the organist at my church, and on the Sundays that Kevin doesn't attend services with us, members of the congregation literally argue over who gets to hold Sam.  I overhead the woman who wrote the note above say to her daughter in law "it's MY turn, you got him last week."  I love it.  They're fighting over my baby.  I know he's always in good arms while we're there and I'm so thankful to be a part of loving church family who welcomes and accepts Sam for all that he brings.

Sam is four months old today.  I have no idea where the time has gone.  I'm in a place where I am thankful for the emotions I've experienced, because I have discovered a person inside of me I never knew existed.  I'm proud that my strength has been tested, because now I can truly believe that what doesn't kill us only makes us stronger and that it's true that we're only given as much as we can handle.  The clouds are gone, the sun is shining and I am happy.  I am proud.  I am thankful.

So go ahead, ask all the questions you'd like.  Go ahead and make comments, good or bad, about my child.  Be ignorant or be accepting.  Be cold or be loving.  Disregard or believe in Sam.  But whatever you do, don't you DARE feel sorry for us.  We have been given a gift, and if you'd like, I'll let you take a peek inside and experience a little bit of Sam's love.

Friday, July 20, 2012

Getting the facts STRAIGHT!!

Naturally, I want to learn as much as I possibly can about Down syndrome.  I have to.  The internet is great, most of the time.  You can type in any topic from A to Z and have about a million choices of information to choose from.  It's great, most of the time.

I bought a few "text" books so that I could read up on the most current information pertaining to Down syndrome.  The reading is a little dry, and down right terrifying, so I put those books on the shelf.  I'll refer to them when needed, and only when needed.  As I go about my day, I may Google a burning question or two.  For instance, today, I ran a search for information about the use of animals and pets as part of therapy for kids with special needs.  Specifically, I was hoping to find information about cats.

Nala, in the stroller with Sam,
snuggling in with her bud.

We have this cat named Nala, she's Ella's cat technically, but beloved by the whole family.  She is the most tolerant, mellow cat I've ever known.  The kids can hold her in the cradle hold and pretend to feed her like a baby, and then throw her up over their shoulder, to burp her.  This cat loves Sam.  It's strange how much this cat loves him.  She will crawl up into the stroller with him and snuggle into him and fall asleep.  When I sit on the deck to let Sam get some fresh air, Nala comes over and stands on my lap too and nuzzles his cheek with her nose.  I have a friend who has two daughters with special needs, and she swears animals know when a child has special needs, and they pay special attention to those kids.

Back to my search.....I can't find information specifically about cats in therapy yet, but I do find information about horses and dogs.  Well, we've had enough bad luck with dogs for me to confidently say there's no way in hell I'm getting Sam a dog anytime soon.  And Kevin has, more than once, said he'd rather have his kids on drugs than on the back of a horse, so that's out too.  So, I guess it's back to cats.  Sam is getting his very own kitty next week - her name is Gems.  G for Grace, E for Ella, M for Marie and S for Sam.  She's the sweetest cutest thing ever!

But while I was searching for the information I needed, I came across untrue things relating to Down syndrome.  There are a million and one sites that have "the basics", like diagnosis, symptoms and the like.  On one I came across, it stated "parents of children with Down syndrome are more likely to have another child with Down syndrome if they should choose to have more children." This statement is FALSE!  Yes, in some cases this is true, but not in all.  Sam has nondisjunction Trisomy 21, which happened randomly as his cells divided after conception.  In translocation Trisomy 21, the extra chromosome is the result of one of the parents genetic information.  In that type of Down syndrome, the chance of having another child with Down syndrome is much higher, but for us, the chances are no greater than they were when Sam was conceived.

So what is truth and what is myth?

Myth: Down syndrome is rare.
Truth:  It's not rare at all, there are approximately 400,000 Americans living with Down syndrome as you read this.  It happens in every country around the world, and it happens to every race, every religion and every economic class.

Myth: People with Down syndrome don't live very long.
Truth:  With the advancement of medical care, people with Down syndrome commonly live well into their 50's and beyond.  It's true that in the past, the life expectancy for people with Down syndrome was very short, but that is no longer true.

Sam, with me...his "young" mom.
Myth: Only "old" women have babies with Down syndrome.
Truth: While it's true that there is an increased risk for Down syndrome as a mother ages, young women have babies with Down syndrome as well.  I was only 30 when Sam was conceived, and I met a woman last week who was only 19 when she delivered her daughter with Down syndrome.

Myth:  People with Down syndrome are "severely retarded".
Truth: Most people with Down syndrome only experience mild to moderate intellectual disability, and with loving homes and early intervention programs, most people with Down syndrome go on to lead a productive and fulfilling life.  Instead of viewing them as a person with a disability - let's call it a differentability.

Myth:  People with Down syndrome can't work.
Truth:  People with Down syndrome can indeed work, in fact they are more likely to do their job happily and enthusiastically than you are.

Myth:  People with Down syndrome are always happy.
Truth:  Yes, it might seem that way, but in fact people with Down syndrome experience the same emotions that you and I do.  They are capable of being hurt, upset, angry and unhappy.

You can do your internet search to find even more truths and myths regarding Down syndrome.  I'm only at the beginning of this amazing journey, and I've learned some facts straight from Sam himself.  You don't always needs books and surveys to tell you the greatest of life's truths.

Fact:  Sam wakes up every morning with a smile.
Fact:  Sam lights up when his sisters walk in the room.
Fact:  Sam brings joy not only to our family but to everyone around him.
Fact:  Sam is the cutest darn little boy I've ever met.
Fact:  Sam is smart and strong and active and healthy.
Fact:  Sam is loved.
Fact:  Sam has taught me to stop and find beauty in all things and to stop sweating the small stuff.
Fact:  Sam is an inspiration to me, to Kevin, to his sisters and our whole family.
Fact:  You can't wait to hug him.

Sam and Grandpa

Please, learn and share the facts about Down syndrome.  With everyone's help, acceptance will grow in everyone's heart.

Thursday, July 19, 2012

Humbling Moments

Have you heard that song "In my Daughter's Eyes?"  It starts out something like this...

In my daughter's eyes, I am a hero.
I am strong and wise,
And I know no fear.
But the truth is plain to see:
She was sent to rescue me,
I see who I wanna be, in my daughter's eyes.

In my daughter's eyes, everyone is equal,
Darkness turns to light,
And the world is at peace.
This miracle God gave to me,
Gives me strength when I am weak.
I find reason to believe, in my daughter's eyes.

When this song came out, it was about the time my oldest daughter Ella was born.  I can remember singing it in my car at the top of my lungs, and breaking down crying when I listened to it, because I had a daughter and I hoped and prayed that I could be a hero in her eyes.  I hoped that she believed I was strong and wise, and I really did find reason to believe when I looked in her eyes.

For all of my children, I strive to be a hero, I strive to be strong and wise.  I wish I knew no fear for their sake.  Recently, Ella has turned the tables on me, and it's her who has become my hero, she has become exactly the person I wish I could be.

We all looked forward to the arrival of our baby boy, our brother, our son.  After the diagnosis that rocked my world, Ella kept saying things like "I'm so glad Sam has Down syndrome" and "I think it's ok that Sam has Down syndrome, I think it's kind of cool."  Without being too outwardly negative, I tried to correct her way of thinking.  I kept saying, "no, this isn't a good thing."  She would ask "mom are you happy that Sam has Downs?" and I would quickly reply, "no, I'm not."  

This past weekend, I was trying to get the billion pictures we've taken of Sam organized so that I could start working on his scrapbook.  Ella was glancing through some pictures, and again she said "I'm really glad that Sam has Down syndrome, are you mom?"  Tears sprung to my eyes and I said again "no, I'm not glad.  I know it's hard for you to understand, but he's going to have a hard time his whole life because of this.  Do I love him? Yes.  Am I glad he's in our family?  Absolutely.  But no, I'm not happy that he has Down syndrome."

I think my answer was more than she expected.  She put her hand on my shoulder and said "it's ok mom."  Then Grace came along, and found a picture she was in and boldly stated "do you like my smile in this one?  My lips are gorgeous." Nobody provides me with comic relief better my baby girl!

The moment passed and I hoped that Ella's belief that Down syndrome is "good" would finally be put to rest.

Later that afternoon, I took the birthday girl, Marie, and several friends to the pool in town for a swim.  It was hotter than the dickens out and we were all ready to cool off from the hot summer sun.  The girls all got settled into their suits, slathered up with sunscreen and were in the water before I could say "boo."

Rewind to the beginning of June...
I took the girls to the library one afternoon, and there was young woman there who kept glancing our way and smiling.  I had Sam with us too, he was sleepily slurping down his afternoon bottle.  Finally, the woman approached me and asked how old Sam was, and introduced me to three of her kids.  I asked what her kids' names were, and she proceeded to recite all SEVEN names!  I would have never guessed her to be the mother of seven.  And when she walked away, I felt resentful.  I remember thinking to myself, "you and your seven healthy kids, you probably take for granted that they're all healthy and "normal."

Back to the pool....
As the girls were in the water splashing around, a young lady caught my eye.  She had a "look" about her.  Was it her eyes?  Yes, they were sort of almond shaped and slanted upward.  She was short, but so am I.  The back of her head was definitely flatter than I would expect.  Her petite hands and short fingers, yes I think she has Down syndrome.  And what's this?  It's the woman from the library helping her swim.  My jaw about dropped.  Well, maybe she's not her mother, maybe she's a relative helping out or maybe she's a hired helper.  But then I hear her say to her younger daughter, "come and swim with your sister."  This was a humbling moment in my life.

My mind was racing - would it be inappropriate to assume her daughter has Downs and talk with her about it?  Would it be out of line to ask her story?  Would it be ok for me to befriend her after I so wrongly felt resentment towards her last month at the library?

I'm not real good at holding back, and I did approach her.  She was rinsing her youngest off in the shower and I walked past, backed up a step or two and said "I don't want to be too forward, but..." and she interrupted me and said "yes she has Down syndrome."  I replied, "Ok, my son Sam has Down syndrome too."  She said simply "I know.  That's why I talked to you at the library that day."

Wow.  This woman, who I wrongly assumed to take for granted her beautiful children, is no different than I am.  Her and I share something in common that we will always and forever share.  A story.  A story of fear, and a story of unconditional love.

My Ella is right, in a way.  Perhaps it is good that Sam has Down syndrome, because he's doing good things in my life without even trying.  He's opening my eyes to a world filled with beauty and he's opening my heart to see everyone equally.  He's showing me that it's not my place to judge, and he's assuring me every day that the people who choose to judge him or our family are not people we need on this team.

Sunday, July 8, 2012

Good Ol' Summertime

The fifth load of laundry is in the washing machine, and by the looks of the piles I have sorted on the laundry room floor, there are six more to go.  The past week has been filled with nearly all of our favorite summertime activities, crammed into one wonderful week of sun-kissed cheeks, tummies filled with ice cream and s'mores and eleven loads of really dirty clothes, towels and sleeping bags.

Cooling off on the Slip-N-Slide
It began last weekend with a picnic with Joe's family.  Saturday evening was enjoyed by both our families with some good times on the slip-n-slide, bike rides, super swinging on our "Paul Bunyan" swing set and supper hot off the grill.  The weather was perfect and the bugs stayed away long enough to enjoy the entire evening outside.  We've discovered that Sam is not a fan of the heat, and he kind of goes into sleep mode while it's hot outside, but when it cools off in the evening he perks right up to his happy old self!  Our kids all get along so great and we are really enjoying our newfound friendship.

Joe and a very sleepy Sam
Joe's Big Sister with her feet in the trees....we call our
swing set the "Paul Bunyan" swing set...this is why!


This is going to sound silly, but I made myself a goal for our picnic with Joe's family.  The sole reason we are in each other's lives is because our sons have Down syndrome, and if it weren't for that, this little picnic wouldn't have taken place otherwise.  However, as we've gotten to know Joe's family, we've really come to enjoy their company, all Down syndrome things aside.  With that said, I vowed to enjoy the evening with good friends and not talk about, ask questions about or bring up anything Down syndrome related.  I'm realizing that even though, yes, we have Down syndrome in common, it's far from the only thing we have in common.  We enjoy a lot of the same things, and our time spent together shouldn't be shadowed by Down syndrome.  Guess what?  I did it.  A couple times, I just about asked questions pertaining to Down syndrome, but I held my tongue. The closest we came to discussing Down syndrome was when we got an update on how summer preschool was going for Joe. I know in my heart that I can call Joe's mom 24 hours a day if I have questions or concerns, and I wasn't about to spoil a great evening with my questions and worries.  It was WONDERFUL!

At Camp Joy with counselors and friends
The next day, our oldest was off to bible camp for a few days and I got to start my weeklong vacation.  We didn't do anything too exciting Monday or Tuesday other than try to beat the heat at the pool and Grandma's lake.  Sam got to meet a new friend who he'll go to school with someday, a friend from Kevin's work just had a little boy a couple weeks ago.  We woke up on the fourth to the sweltering heat and got ourselves ready for the 4th of July parade in our town.  Our 4H club had a float.  While Sam stayed home with my mom so he wouldn't melt, the rest of us headed to town to toss candy to the many onlookers and encourage others to join 4H.

Immediately after the parade, we headed home to pack for our five-day stay at our favorite place in the summer, Lost Valley Resort.  We had to change clothes before we left because packing left us all wringing wet with sweat!  The first thing we did at the resort was jump into the lake.  Sam was hungry shortly after we got there, so I plopped a camping chair in the shallow part by the shoreline and Sam enjoyed a bottle IN the water.  This is the life!

Just one of SEVERAL
ice cream cones!!
That evening, we enjoyed several different fireworks shows from around the lake and headed to bed WAY past our bedtime.  The following morning, two other families joined us for the weekend.  We enjoyed many many hours in the lake, swimming, tubing and kneeboarding, eating s'mores and ice cream (after our carrots and celery of course), going for walks and bike rides and hanging out by the campfire.

Sam thoroughly enjoyed his first camping trip, spending a ton of time napping in the shade of the birch trees by the shore or in the air conditioned comfort of the camper.  He was the only kid of 8 who didn't sleep in the tent and get flooded our second morning there, and he was also the only kid who didn't eat about a gallon of ice cream over the weekend.  No joke, our group, which included six adults and eight kids, consumed 71, I repeat SEVENTY ONE ice cream cones over the course of our stay!  (Our family racked up 35 of those!!)  I have NO doubt that next year, Sam will add several to that number!

Tomorrow, it's back to work and hopefully a regular laundry load.  This week, we'll celebrate a birthday in our family, as our second oldest turns 6!

Sam's therapy is going great, and he's continuing to make progress.  We tried nursing again while camping (because it's easier than washing all those darn pumping parts and pieces), and while he did a great job, it's back to pumping now.  He's so darn rambunctious while he eats, he barely gets the job done even with a bottle.

Sam is bringing SO very much joy to our lives.  Even at three months old, the girls still fight over who will hold him first, who will hold him the longest and who loves him more.  It amazes me every day how much my life has changed with him in it.  While some days are better than others, I feel like I'm more patient and learning to love deeper than ever before.  I've become a person who accepts everyone and everything more openly, and I'm watching Sam do that to others around him as well.  Every single child is such a blessed gift and brings beautiful things into our lives.  My cup is still truly overflowing, my mind is still truly overwhelmed, my heart is still truly filled, and my family is still  truly blessed.  This life, while not quite what I had planned, is perfect.