Tuesday, November 30, 2010

A visit with Santa!

The mall at Christmas time, not just Christmas time .. but Thanksgiving weekend.  Seriously NOT the place I like to be.  The crowds.  The sales.  The pushy sales people.  I don't like it.  BUT, I've found that it is the absolute best time to tackle the annual "picture with Santa."  People are in shopping mode, but not necessarily in Santa mode.  Which means NO LINE!!  Plus, we go early in the morning right when it opens so that helps, too.  

I wasn't sure what Mason was going to do this year with Santa.  We had been talking about Santa to which he pointed at his picture and repeated the name (but refused to say HO HO HO).  But, he's been going through this separation anxiety thing lately and I thought for sure this year's picture would include my big old mug in the photo.  But, Mason was a pro.  He waved from afar and then we placed Owen on Santa's lap first.  I firmly believe that Mason would walk into fire to follow his big brother.  So Mason had absolutely no problem sitting on the knee opposite Owen.   It's never tough to get two kids to pose when all of the pressure is on.  I can't remember exactly what was said during the winning pose, but Mason was tickled.  And Owen was beaming.   I'll take it! 


Oh, and what they asked for?  I never know what's going to come out of Owen's mouth when put on the spot.  But, apparently, Owen wants Iron Man dress up clothes and, per Owen, Mason wants Yo Gabba Gabba toys.   Santa better get cracking! 

Friday, November 19, 2010

Our trip to JMU!

Over the past few years, we've tried to make an annual trip to Harrisonburg, VA to visit JMU (where I went to college) and take in a football game.   We go to [almost] all of the Maryland football games (where Brian went to college) so it's only fair that we give some love to my Alma Mater.   As an added bonus, my little brother, Kyle, is now a freshman at JMU so there's an added bonus of getting to spend time with him!  

This year, the football game was at 1:30 pm so by the time we got down there, parking was on short order.  We decided to park and stay on campus and eat lunch with Kyle at the dining hall (D-Hall).  I had not been in D-Hall since well before I graduated in (cough) 1997.   It was so nostalgic and crazy for me to be back there after all those years, with my little brother (who was 1 when I started there as a freshmen those so many years ago) and now with  my husband and kids.   Where does the time go?   






Then it was off to the football game .... after a quick stop at Kyle's dorm room so the boys could get in their gear and ready to root for the Dukes! 
It was a great day for a football game ... weather was in the 60's and sunny.  The stands were packed.  And the Dukes won! 




Owen and I ran into the Duke Dog on a potty run.  We tried to find him again later in the game and after the game, but the Duke Dog eluded us.  Next time, I'll get a pic with Mason and Uncle Kyle, too.  


We had a great time at JMU.  And can't wait til next year when we get to go back again!

Go Dukes! 

Wednesday, November 3, 2010

Trick or Treat!

Last Halloween, as we pushed Mason around Great Falls Village in his stroller, I thought ahead to this Halloween.  I thought, Mason will be walking then!  And I couldn't wait to see him walking through the Village in his costume along side his older brother.  Halloween was so nice to come on a Sunday this year.  There was no rushing home from work, no rushing into the costumes and onto the festivities.  Instead, it was one long day of Halloween event after event.   There was time planned in between for Mason to nap.  But, he had other plans, choosing to only slumber for 30 minutes.  No time for sleep ... today was Halloween.  And my boys, dressed as Batman and Robin, had stuff to do!


Batman Owen fighting "the crimes"
Mason, the fearless sidekick
First, was our neighborhood "Spook Out."  It's a couple hours of games and treats... but my favorite part is seeing the local kids dressed in their costumes and catching up with the other parents.  We were happy the local grandparents stopped by the festivities and stayed to suffer through watch the Redskins football game. 

Mason, running off with a neighborhood girl
Owen and our monster pumpkin




Mason and his crazy Poppy!

The dynamic duo, plotting their day
The Caped Crusader can eat a doughnut without any hands!

Robin has no trouble carrying two pumpkins! 

 

We met up with one of Owen's friends who was also dressed as Batman at the Village.  They soon found another Batman and proceeded to terrorize Great Falls.  They had a blast!  (let's not mention the man in the yellow hat they almost took out!)




Robin and his "Super" Daddy!



And I just love this picture ... taken just as we arrived in the Village.  Do you see how Owen is so protective of his brother? ... Look at his hand, just holding Mason back as they survey the surroundings.   So sweet :) 


Last, was trick or treating around the neighborhood.  We loaded up the two superheroes in the wagon and they pretended it was their Bat-mobile.   We trolled until we were sure Great Falls was safe, we had collected enough candy and finally our little superheroes were done for the day!

Happy Halloween!

Wednesday, October 27, 2010

Down Syndrome Awareness Month - Our Prenatal Diagnosis Story

I have wanted to write this down for a while.  At first, it was a little too raw.  Then, as a full-time working mother of 2, I just couldn’t find the time.  Or I didn’t make the time.  Now it is October 2010 and it is Down Syndrome Awareness month.   I have a beautiful 2-year-old son named Mason.   And he has Down syndrome.   I couldn’t think of a better way to celebrate awareness than to share our story.  This is the story about the struggles we encountered after a prenatal diagnosis of Down syndrome in December 2007 and the joy we experience every day with our son Mason. 

“I just want to make sure everything is okay.”  That is what I told my husband, Brian, when he asked, “Tell me again WHY we are getting this procedure done today?”  It was December 10, 2007 and the procedure he is talking about is the Nuchal Translucency or NT Scan.  We had recently found out that we were expecting our second child in June 2008 and we couldn’t be more pleased to have a brother or sister for our other son, Owen, who was then about 17 months old.  I remember it was a busy week.  We were in the midst of purchasing a new home and selling our “starter” home.  Christmas was just around the corner and the movers were coming the next week.    With everything going on, I just wanted a chance to make sure that this new baby was healthy so I could focus all of my energy on packing, moving and making Christmas in our new home extra special for Owen.  Ironic.   Because our world was just about to be turned completely upside down. 

An NT Scan is a sonographic prenatal screening scan (ultrasound) to help identify higher risks of Down syndrome in a fetus. The scan is carried out at 11–13.6 weeks pregnancy and assesses the amount of fluid behind the neck of the fetus - also known as the nuchal fold or 'the nuchal translucency'.  To be honest, this is more than I knew about the testing going into it.   Our first indication of a problem was when the doctor performing the exam kept measuring and re-measuring the area behind the neck.   Then, the bomb dropped.  You see, at 12 weeks of gestational age, an "average" nuchal thickness is 2.18mm.   Mason’s was 5.1mm.  We were told solely based upon these readings, we had about a 50% chance that there was some sort of chromosome defect in our child and that high nuchal fold thickness measurements were usually associated with congenital heart defects.   Great.   I’m generally a glass-half-full kind of girl so I heard this as a 50% chance that our child was just fine.  Or maybe I was in denial.  Brian, on the other hand, focused on the words “defect” and couldn’t shake it.  The doctor who performed the NT scan consulted with our OB and then sent us up to the lab to get the blood tests (the second party of the screening) done.   While we waited for the blood test, Brian was all over my iPhone, looking for something positive and reassuring but only finding words like “disability” and “abnormality.”  After the blood tests, we went straight to a meeting with our OB who was actually very comforting and supportive.  She hugged us both tight and we knew that it was not good.  She told us our options (1) we could do nothing and wait to see what happens (2) we could have a CVS (Chorionic villus sampling) which entails using a needle to get a sample of the placental tissue and testing it for chromosome abnormalities.   We didn’t hesitate for a second in stating that we wanted the CVS.   There was no way that either of us could make it through 7 more months of not knowing.   This was Monday.

We could schedule the CVS for Wednesday morning.  Those two days seemed like an eternity.  We shared the news with our families and they put on a brave face.  They said what we wanted to hear, “I’m sure everything will be okay, but if it’s not, you can handle it.”  We can handle it.  We can handle it.  You aren’t supposed to “handle” a child.   This is supposed to be a happy time.   Brian was reclusive, searching the Internet for best and worst case scenarios.   I did a little bit of research, but put most of my faith in the fact that everything will be okay.  God wouldn’t let this happen.  This isn’t supposed to happen to us.  I will pray.  It will be okay.   It will be okay.   The CVS was uneventful.  More measurements.  We had a meeting with a genetic counselor who told us the doom and gloom of the measurements.  More odds.  They hovered between 50% - 75% chance of something being “wrong.”  Let’s just get this over with.  It will be okay.  You will see.


Mason's ultrasound at 12 weeks (CVS)
  The test results came back the next morning.  It was Thursday, December 13th.  Brian’s birthday was the next day.  We were moving the next week.   Owen was having Christmas pictures taken that evening.  Life was moving.  We had things to do.  And then it stopped.  I was working at home when the genetic counselor called me.  She asked if we wanted to know the results over the phone or schedule a meeting to come in.   I told her to just give it to me.  We had waited long enough.   And everything was going to be okay.  Wait.  What?  Down syndrome?  Everything is not okay.  Miss Doom and Gloom Genetic Counselor is telling me that this child will probably have a heart defect.  He will have significant medical problems. I will probably miscarry.  She’s giving me information about abortion clinics.  Is there nothing encouraging to tell me? This is my child we are talking about.  Hello?  What just happened to my life?   In a daze, I call and give the news to Brian who tells me he is coming home right away.  I barely remember the telephone call I then placed to my mom.  I’m sure she was faithful and reassuring because that’s who she is.   I just cried.  I thought how difficult it is going to be.  Do we just sit around, waiting to miscarry?  What do we tell people?  Do we tell people?  

One step at a time.   I turned to the Internet.  I need to learn all I can about Down syndrome.  All I knew was Corky from Life Goes On.  I needed to know everything I could.  As we scoured the Internet we began to realize that everything still could be okay.   Down syndrome is not a death sentence.  You can live a long and productive life even with that extra chromosome.   And studies show that siblings of people with Down syndrome actually grow up to be more patient, empathetic, and understanding adults.  God has a plan for everybody.  And maybe our plan included this child.  Or maybe it didn’t.   But it wasn’t my place to decide.  I am a control-freak.  Self-admitted.   Yet, it was somehow reassuring to know that this was out of my hands.  If this child is meant to be in the world, let him be.   And somehow it lifted this weight off of my shoulders.  

Over the next few weeks, we treaded carefully.  We told our families right away and took it slow with friends.  Most people didn’t even know I was pregnant.  How do we tell people, “hey, I’m pregnant and by the way our child has Down syndrome?”  Here, I have the benefit of hindsight because I now know that Down syndrome isn’t that big of a deal. But back then … every time I said it, tears welled in my eyes and I felt daggers in my heart.   I mourned the son I will never have.  The son who would go to college, get married, and have children.  I mourned the brother than Owen would never have.   We told a few people in person, but it was uncomfortable.  They didn’t know what to say.  So, I stopped doing that and decided that email was the best way to communicate our news.   With email, I could carefully craft my message and they would have time to think about how to respond rather than being put on the spot.  I was going through some old emails and found an email I sent to some friends back then:

I have some news (some good, some not so good) to pass on and I thought this would be the best way to get it out there. The good news is that I am pregnant with our 2nd child, due in late June … the not so good news is that we found out the baby has Down syndrome.  We won't have any idea of the extent of any medical problems until early February when they will do a detailed ultrasound and fetal echo cardiogram.  We have had to adjust our expectations but have accepted that while this baby will be different, he (yes, it's another boy!) will be just as loved and as much a part of our family.   Best case is that they will not find any significant medical problems.   It is not easy to have a time that is usually so joyous be filled with so much unknown and trepidation but we have faith that we will be able to manage whatever the future holds.

Wow, I must have been channeling my future self when putting together that email!   I wasn’t nearly as brave as I pretended to be.   With each day of the pregnancy, it got easier and easier.   I don’t think it was until well into my 2nd trimester that I really let myself think that this baby would actually be born.   I kept a little wall up so I wouldn’t completely lose it if something went wrong.  But, with every test we got more good news.  No heart problems.  No medical issues.  This might just be okay after all.   Take that, Ms. Doom and Gloom Genetic Counselor.     We had some more roadblocks, including 2 months of bed rest due to early labor contractions (which may or may not have been related to the Down syndrome).   We connected with the local Down syndrome association and while on bed rest, I had to opportunity to meet with a local family who had a then 6 month old with Down syndrome.  This was the first time I had ever met anyone with Down syndrome.  And it was so reassuring to see that this little girl was just like any 6-month-old baby.  I was ready to meet my little boy. 

Owen giving his brother a kiss before leaving for the hospital

It was just about 6 months after receiving the diagnosis that Mason was born.  June 8, 2008.  It was a happy day.  We couldn’t wait to meet our new little boy.  We had grieved.  We had mourned.  And now we were excited.  The only tears that we shed that day were happy tears.  And I was so glad that we had received our diagnosis before Mason was born.  It was tough during those six months to await the unknown.  But, I’m sure, for us, finding out on that birth-day would have been a hundred times worse.

Mason's first picture!
Daddy's boy.

A family of four

Best friends from the beginning ...

And now here we are 2+ years later.  I don’t feel daggers or cry when I hear the words Down syndrome.  Life with Down syndrome is just like your life.   Mason is like any 2-year-old boy whose most uttered phrases are “mine” and “no.”  He fights with his brother one minute and the next minute he is chasing him down to give him hugs and kisses.  We go to football and baseball games where Mason chants “GO GO GO!”  Mason loves Dora, Batman, and Yo Gabba Gabba.  He goes to school and to daycare.   Mason loves to dance and sing his ABC’s.  Yep, just like any old 2-year-old.   And Owen is growing up to be patient, understanding and oh so encouraging to his little brother.


The boys wrestling

Hiking with the family
Happy boy!

Okay, so it’s not all tea and roses but whose life is, really?  What’s different, you ask?  We probably have more doctors’ appointments.  Mostly preventative stuff since they know so much about medical issues that kids with Down syndrome have an increased risk in developing.  We go to speech and physical therapy every week.   Mason gets frustrated when he can’t communicate what he wants or needs.  His speech is delayed.   The low muscle tone that comes with Down syndrome has caused developmental delays and Mason only started walking when he was 25 months old.  But, we are so encouraged by Mason’s “can do it” attitude.  You have to understand that low muscle tone means that for every muscle movement that Mason makes, he has to work twice as hard as you do.   But, he’s good natured, a worker and a fighter.   And those qualities will take Mason far in life.  

Why am I sharing this story?   With increased screenings becoming available to expectant parents, more people are receiving a prenatal diagnosis of Down syndrome.  And it makes me so sad to think that roughly 80 percent of those who found out their child would have Down syndrome elect to terminate the pregnancy.  And the way that the diagnosis is presented by so-called counselors with such a negative slant, I really can see why that happens.  I just wish these parents could open their hearts and their eyes.  I wish these parents could see beyond the stereotypes and realize how beautiful it is to be different.   I have recently become aware of a new website available with up to date and real information for expectant parents who receive a Down syndrome diagnosis and their friends and families.  I wish a website like this was available back in December 2007.   It is located at http://downsyndromepregnancy.org.  And I hope that maybe just one couple who receives a similar diagnosis stumbles upon this blog and sees a future full of hope and possibility.  

We truly believe that there is no end to what Mason can accomplish in life.  And we will be there for him every step of the way... and we have a huge support system who backs us up each day.   We know that Mason is still just a baby.  There is a long road ahead.  I still believe he will graduate from high school.  He will get a job.  He may live with us forever.  He may want to live independently (with our support). We hope that he will find true love.   That 47th chromosome makes Mason who he is.   And he is perfect.   Just the way he is.

Some of our support system at the 2010 Buddy Walk ... there are many more!

A perfect 47 chromosomes ... our beautiful boy!

Sunday, October 3, 2010

Welcome Fall!

The weather is finally turning and it is starting to feel a little like Fall.   The only thing I don't like about Fall is the fact that winter comes behind it.   Otherwise, the brisk cool air, football season and reds/oranges/yellows make it my favorite time of year.   This weekend was a perfect Fall weather.  Saturday was full of soccer in the morning and the Maryland football game in the afternoon.  Sunday, we met Brian's mom out at Cox Farms, a large family "pumpkin patch" but with haunted wagon rides, corn mazes, slides, animals, and more...  

On the wagon ride ....  


Milking a cow ....


About to get a kiss from a cow... 


Eating popcorn for lunch ...
 

Climbing haystacks .... 


Dancing to blue grass ... 


 Going over the spooky bridge ...


Happy Fall everyone!!  (Winter, please don't come too soon!)

Thursday, September 30, 2010

Renovations

Our summer project was to redo our two upstairs bathrooms.   I can't say that they were the bathrooms that were original to the house, but they were pretty close.  It has been on our "to do" list since we moved into our house 2 1/2 years ago, and finally we decided to get er done!   I put together some before and after pics of the hall and master bathroom so you can see the updates that were done! 



Master bathroom - before and after
Looking into the new master bathroom

New master bathroom shower

Before and after kid's hall bathroom

Another before and after of the kid's hall bathroom
 What a transformation!   What's next on the "to do" list??? 

Monday, September 27, 2010

Buddy Walk!

It's hard to believe that 3 years ago we didn't even know that the Buddy Walk existed.  We were still a couple of months away from being introduced to the Down syndrome community.  We were so oblivious and unaware of this world.  Now, after schools are back in session and the leaves start to turn, the start of Fall means Buddy Walk time.  And each year, this walk reminds me of how wonderful a community we are a part of.   Imagine a place where kids of all abilities are laughing and playing together.  And nobody cares who has what number of chromosomes.  That is what the Buddy Walk is to me.  And it gives me hope that the outside world isn't too far behind.  



We are so so so thankful to our friends and family who are "Mason's Maniacs."  We raised over $2100 as a team  and over $175,000 as a community for local and national Down syndrome associations.  This money will go a long way in providing learning, research and advocacy programs for people with Down syndrome.

This year we had such a wonderful turn out and we are so glad to introduce new friends each year to our world.   "Acceptance" is an easy word to learn but not as easy to put into practice on the playground of life.  But, kids learn from example.  And we hope that by participating in the Buddy Walk, all children will begin to learn people are people first and that everyone deserves the same love, respect and opportunities.  Go Team Mason's Maniacs!!


Below are a few other shots from the day.






See you at next year's Buddy Walk!   (October 15, 2011) 

I leave you with a sign from the Walk that my mother in law photographed and I want to share with you...