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.


Anonymous said...

She is so beautiful. I just happened upon your blog tonight. I look forward to reading and your amazing photos.

Anonymous said...

She *is* beautiful. It's wonderful to have grandparents who understand. When our daughter Julianna was born in '07, we were pretty shellshocked and had trouble bonding for the first couple of days--but her grandparents were there, loving all over her, and their love and support has never wavered. After some of the stories we've heard about families *not* accepting our children, I feel doubly, triply, exponentially blessed.