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.