Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts

Saturday, October 3, 2009

Sweet Love


During breakfast my husband, Gary and I were talking about how Megan thrives on this one thing~LOVE! She is the happiest child if you give her LOTS of it.  Along with that, there are two other things which make Megan very happy.  Hugs and Kisses.  If you ask her for a hug or kiss~she will gladly share without hesitation.  Actually, now that I think about it, you don't even have to ask Megan for love and affection~she gives it freely.  In fact, she blows kisses to everyone, whether she knows them or not!


Our conclusion: 
 Megan is a LOVE SPONGE!!

Tuesday, September 29, 2009

A Sweet Walk...For A Sweet Cause

Even Megan's Little Feet are Going to Walk
Please Support Her by Joining a Buddy Walk in your Area

I just went and got the mail from my mailbox.  Today I received the DSA|OC Buddy Walk Invitation. I am so excited for this years walk!  We are going to have Bake Sales to raise money. While selling all sorts of sweet treats, we'll not only be raising money to help fund research and programs for individuals with Down syndrome, we will also be raising awareness. I love what the invitation says: "Changing Perceptions...Changing Lives"~that is what it is all about. Remember, I am a mom on a mission.  A sweet mission. A mom trying to change the way people perceive Down syndrome.  And a mom trying to give my daughter everything life has to offer her~even though she was born with Down syndrome. Cause one thing I know for sure, her diagnosis isn't going to stop her!! It's just going to open up doors and give her amazing opportunities to give back to others. In unimaginable ways.

If you live in Southern California, Save this Sweet Date....

Buddy Walk Day
Angel Stadium
Anaheim, CA 
Sunday November 8th, 2009
Buddy Walk
11 AM-11:30AM
Fun On the Field 
9AM-2PM

For more information on the Buddy Walk click here: www.buddywalk.org/




Saturday, September 5, 2009

Sweet Megan~A Sweet Story about My Princess with Down Syndrome



Megan.  I feel an intense bond with this little girl of mine.  Although she was born with Down syndrome, her life is like so many other 7 year olds.  However,  there are challenges that she faces daily that are hard for us "typical" people to fully understand.  Yet, Megan always has a smile on her face and rarely finds a reason to be upset.  She's pure joy.  

Recently, Megan and I spent a tremendous amount of time together during our road trip to visit Utah, Idaho and Wyoming.  The entire trip, she was my little partner.  We did a lot of hand holding-her and me {and do everyday for that matter}.  She even prefers one hand over the other~my left!  And she likes to really hold hands--not just a finger, which I love. The cute part,is that she puts her hand out for mine, and then says this one simple word, "hand?" Yes, her voice fluctuates up when she says it~as if she is asking me the question, "you wanna hold hands, mom?" Complete sentences are still few and far between.  But one word really does say it all!
When we went to Yellowstone, I walked hand-in-hand with Megan ALL over that National Park!  It is stuff like this, that, as a mother of a child with Down syndrome, brings such an incredible amount of excitement and pride!   Typically, Megan  tires out fairly fast!  So usually, I throw Megan into the stroller and push her around everywhere.  But this time I didn't want to do that!  It was going to be too much work.  Yellowstone is a place which requires a lot of getting in and out of the car and hiking around--in order to view and experience all of the amazing aspects of nature there. Walking was simply the only way.  She was a BIG girl and handled it amazingly well. She rarely complained. To be honest, she did far better than Gary and I thought she would! Megan is always surprising us! And she more than surprised us on our trip!!  She seemed to just sit back and take it all in.

One night over Labor Day weekend, while I was cooking dinner, I turned around to look outside at the girls playing.  BOTH Megan and Katie were on the swings.  Flying high!  BOTH were smiling and giggling. It was such a beautiful, sweet "mommy moment".  Seeing my daughters loving each other.  Loving life.  Loving being together.  Loving to have fun.  It brought such joy to my heart and soul.  Later that same evening, we sat down together as a family and watched the movie, "Rin Tin Tin".  The kids all seem to like movies where animals are the stars.  And in this case it was a German Shepherd, like our Buddy dog.  Anyhow, throughout the movie Megan kept saying the words, "cute" and "funny". With Megan the littlest things she does mean so much.  Just to hear her responding to the movie was sweet.  And to hear her speaking words so clearly brought smiles to our faces. 

During the movie, Megan eventually fell asleep.  She looked so peaceful, as all children do while they are sleeping.  I picked her up and held her in my arms, much like I did when she was first born.  Megan spent the first week of her life in the NICU at Brigham and Women's Hospital in Boston.  I'd go down to the NICU by myself and hold her until the nurses would tell me I had to go.  I remember Megan's pregnancy, eight years ago, so vividly.  It was a most memorable, life changing time.  

As I put Katie to bed that night, she was tucking her beloved stuffed animals into their beds. However, there was one special animal which she had picked to sleep with her.  It was a fluffy white dog.  I felt compelled to tell Katie the story behind this little puppy.  

When Megan was six weeks old, her tiny heart became enlarged and she went through congestive heart failure.  After an alarming visit with Megan's Cardiologist, Dr. Marx informed me that she'd have to be admitted into the hospital and undergo an emergency open heart surgery! When Megan entered the world,  all of her doctors really hoped she'd be big and strong before crossing that dangerous road.  But with a defect as severe as hers, that goal just wasn't going to be achieved.  I am happy to say, her surgery was a success. Once we were given the okay to go see Megan in the CCU, Dr. Marx led us to where Megan was recovering.  Gary and I followed close behind, hand-in-hand. We found our precious little angel with tubes coming out of her body. She was hooked up to all sorts of machines.  However,  at the foot of her bed, was a heart-warming sight.  This adorable little white dog was sitting there and Megan's sweet nurses had her itty-bitty feet propped up on him.  There was a beautiful card attached to the dog.  When I opened and read it, I discovered it had come from her Nana and Gramps, 3,000 miles away!!

As I told Katie this story, tears filled my eyes.  2001 and 2002 were some very emotional years for me. They helped define who I am today. Sweet little Megan makes me a better person.  She makes me laugh.  She brings a smile to my face.  She is always doing things that warm my heart. She truly is a sweet blessing in our lives.