Best Friend

Best Friend.

BFF.

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.

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.

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.

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.

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 touch...it equals WOW.

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."