Our sweet Lillie

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It was an unseasonably hot and humid November day in 1998 and Ben and I were poised and ready to become parents.  The nursery was ready, car seat installed and we had read and re-read “What to Expect When You’re Expecting” no less than 10 times, but nothing could prepare us for the miracle we were about to welcome into this world.  

In the first few moments of her life, Ben & I knew that the little girl we had been blessed with was a very special child.  Fragile and fiercely determined to fight for her first breath, we instantly knew what it felt like to have our hearts walk around outside our bodies.   As the doctor placed our new daughter in my arms, the world stopped and yet our lives had truly just began.

It’s hard to believe that fourteen years have passed since Lillie was born and yet there are qualities about Lillie that make you feel like she’s been here much longer.  A devoted follower, Lillie’s faith influences every aspect of her life.  Her compassion for those in need, convictions for what she believes in and capacity to care for others have already made an impact in this world.  She has a heart for those who struggle and a desire to help them know their worth.  Aside from all of the other wonderful qualities she has been blessed with, I believe the way she treats others is her greatest gift.

Happy Birthday, Lillie.  We could not be more proud of the lovely young lady you have become and the way you have demonstrated love and grace to every life you have touched. 

We love you.

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Remembering my Mother

 

64 years ago today, the most incredible woman I have ever known was born into this world.    She was the embodiment of selfless love.  The proud mother of five children, she devoted her life to raising a family.  Intelligent, funny, creative and compassionate this woman had no idea how special she was and yet, those defining characteristics shaped me into who I am today.  This woman made me believe I could do anything, and become anything…a writer, an actress, a teacher, an advocate and most importantly, a mother.  Because of her strong example, my decision to become a mother became the centerpiece of my life.   She inspired and encouraged me at every turn.  She will always be a source of comfort and support in times of celebration and sadness.  She is my mother.

Sadly, my mom passed away a little over three years ago and my heart still hurts.   Time does not heal, it just helps. 

One of the things I loved the most about my mom, were the conversations we shared.  She was a wonderful listener and always had good advice to share.  I remember one of the last conversations I had with my mom before she died….

I was just a few weeks pregnant with Bitty.  At the time, Ben and I did not know that Bitty, like Beau, had Down syndrome.  I remember my mom saying that she hoped the baby we were expecting would also have Down syndrome, so that Beau would always have a best friend by his side. 

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Bitty was born 5 months after my mom passed away.  And just like my mother had hoped, Bitty was born with Down syndrome.  While mom wasn’t here on earth to welcome Bitty, into this world, she was with us in spirit.

Today, I celebrate my mother’s birthday by remembering all of wonderful moments we shared together and the many conversations I will never forget.

 

Lillie knows Beau

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I am Beau’s oldest sister, Lillie.  Eight years ago, the cutest little baby boy came into this world and into our home.  I thought he was perfect.  When I learned that Beau had Down syndrome, it really didn’t take any of the perfection away.  How could it?  He is the sweetest, cuddliest, happiest little boy you could ever meet.  I love him soooo much! I wouldn’t trade him for the world.

If you have met Beau, you know he is one of the most mannerly eight year olds you’ll ever meet.  “Please”, “Thank you”, “Excuse me”…these are all things Beau says daily.  Beau loves his Kindle.  It’s like a “vacation” for him when the world gets too crazy.  If you’ve been with Beau, you have heard him jam out to “Afro Circus” from Madagascar 3.  It’s the cutest thing!  And of course, he continually spins without dizzying to the whole song.  So sweet!

Probably the best thing about Beau is how much he misses us when we’re gone.  He has to be the first one to answer the door and then he looks at you and screams, “Lillie!”  He runs into your arms and straps himself on like a little koala bear.  I love him and am DEFINITELY proud to say that I know Beau.  I love you, Bubbie!  xoxoxo  

The Ability Choir

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There’s a phenomena that happens in the world of Broadway musicals when actors stop their dialogue and burst into song.  It’s an organic moment for everyone involved…the actors who allow the tune and the lyrics to tell their story and the audience that is unconsciously transported to a new time and place.  This moment occurs when words are not enough.  

Interestingly, a day at the Wright house is filled with these moments, too.  Whether it’s the silly songs we sing to Beau and Bitty while getting dressed in the morning or the lullabies we rock them to sleep with at night, there is music constantly bouncing within the walls of our home.  Perhaps this is the reason Beau sang long before he ever spoke a word.  Music is one of Beau’s many gifts.  Music has allowed him to share what is in his heart and soul, even when he cannot find the words.

I believe this is true for many people living with intellectual disabilities.   With the arts, there is no right or wrong answer. It is simply created, shared and appreciated.  For people with intellectual disabilities, the arts can be an important outlet for self-expression while helping build self-confidence and self-esteem.

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With music at the heart of our family, it was an easy decision to continue growing our mission by creating an opportunity for people with ALL abilities to express themselves through music.  This new endeavor is called The Ability Choir.   The choir is open to people of ALL abilities, and when we met for our first rehearsal last weekend, it was a true melting pot of talent.   It was obvious from our first minutes together, that this was going to be a very special experience.   In addition to our special children, we were joined by moms & dads, teens and tots and even a few grandmothers.  Our abilities ranged from children that had never sung a note to teens that have starred in dozens of shows and everything in between.  At this rehearsal, I witnessed moments of compassion, patience and mutual appreciation as people “buddied” up to help one another find their way through choreography and remember lyrics.  I’m fairly certain that for some of our choir members, this may have been their first experience working with someone living with a disability.   I am equally certain that this experience changed them forever. 

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As our rehearsal came to a close, we gave ourselves a standing ovation and lots of hugs.  And as we drove away, I overheard Beau singing to Emma Grace in the back of the car…afterall, this was one of those happy moments when words just weren’t enough.