We are Blessed

By Laura Nacamuli 

“I want people to know this. Please don’t limit me. Just give me the chance, and I will show you what I can do.”

Catching herself on the Time Square jumbo screen before the NDSS Buddy Walk.

With those words (greeted by a robust round of applause), my daughter Alexa concluded her speech delivered at the 31^st National Down Syndrome Society (NDSS) Annual Gala, for which she was invited last year to appear as a guest speaker.

Alexa certainly has so much to be proud of – and not just because Echo Dots around the world respond to the sound of her name!

I truly believe that Alexa’s life is a testament to the idea that a person shouldn’t ever let their disability limit their goals, efforts, or life ambitions.  One of Alexa’s first experiences when she came into this world 25 years ago was open heart surgery for a heart defect. She tackled that hurdle like a champ, and she has surmounted every other obstacle that has come her way since then.  I love Alexa’s spirit, positivity, sassiness, precociousness, and just overall zest for being part of the world.

In addition to speaking at the NDSS gala (click here to watch!)…

• Alexa has worked as an intern ticket scanner and usher for the NJ Devil’s.
• She currently works at Shoprite 3 days/week.
• She’s a competitive bowler and swimmer with Special Olympics.
• She attends a dance class for young adults with special needs.
• She participates in the annual NDSS Buddy Walk, where just this last year, she was featured on the huge jumbotron screen in Times Square.
• She assisted in the launch of a program called Creative Spirit (link), an initiative that advocates for companies to hire people with special needs. Alexa actually helped launch the program at Ad Week in New York!

On the steps of the US Capitol!

Alexa is also a passionate Down syndrome advocate.  Last year, she attended the NDSS Leadership Summit in Washington, D.C. to educate our leaders and advocate for individuals with Down syndrome.   There, she stormed the steps of the U.S. Capitol with her fellow advocates and met with several members of congress. That same weekend she also was a part of a unique dining experience pop up restaurant called C21 on Capitol Hill. C21, signifying the extra 21st chromosome, showcased to the world that individuals with Down syndrome are ready, willing and able to work! C21, the hottest restaurant in our nation’s capital was exclusively run by almost 40 individuals with Down syndrome – its doors welcomed several members of Congress, parents, and other VIP guests. Alexa was a hostess and worked beside two members of the cast from the A&E Show Born This Way.

Speaking of being “born this way”….

With members of the “Born this Way” cast.

Alexa’s Down syndrome was a surprise to us when she was born. There was no indication of Down syndrome during my pregnancy. I remember holding Alexa for the first time, studying her beautiful face and almond-shaped eyes, and wondering… I recognized something in her features and later said to my husband, “I think she has Down syndrome.”  It soon became apparent to all that Down syndrome was a possibility. Tests were run, and within a week, we found ourselves at the geneticist’s office. It was confirmed – Trisomy 21.

Of course, at first, it’s very scary. You experience a range of emotions. But then, as the beautiful poem “Welcome to Holland” describes, you catch your breath…you look around…and slowly but surely, you start to realize all the wonderful and unique things about having a child with Down syndrome. We sent out a birth announcement with a special note letting our family and friends know about Alexa and asking them to accept her into their hearts without pity or reservation and to just share in our joy welcoming this new precious child into our lives.  A very dear friend of mine, who, herself, had a child with Down syndrome, flew to see us within days of Alexa’s birth.  What she said that day stayed with me ever since.  As she cradled Alexa in her arms, tears began to flow.  She looked at me and said “I want you to know that I’m not crying because I’m sad for you.  I’m crying because, I know how overwhelmed, scared and sad you are right now. But I also know that soon you’ll see how much joy she will bring to your lives and be so amazed by that.” How blessed I am that God put her in my life.

Alexa at the NJ Devil’s internship.

25 years later, it is very difficult for me to think of anything negative to say about parenting a child with Down syndrome. Sure, there are some differences. You may travel down this path at a slower pace, requiring more patience, but each milestone is celebrated and appreciated that much more. Our lives have been enriched by all of her special gifts, and, in many ways, we have learned so much more from her than she has from us. The words unconditional love, kindness, forgiving, uninhibited, humor, patience, joy…all come to mind. Simply put, Alexa has helped us to redefine what is really “important”.

There is one overarching, ever-present fear: we don’t know what the future holds for us.  Although she has a loving and supportive family, we worry about how she will fare once we are gone. I think that anyone who has a child with an intellectual or developmental disability probably has this same fear. This is one of the many reasons we are so happy to have GiGi’s Playhouse in our lives. GiGi’s offers parents an opportunity to connect, to network, to share their thoughts, ideas and even their fears and concerns and be a source of support to each other.

Walking into GiGi’s for us is like going home. Alexa has her core group of friends there. Alexa loves Fantastic Friends, TEAM, and EPIC programs.  Attending these programs has not only improved her social skills but also her life skills and overall confidence. At TEAM, she learns about making healthy lifestyle choices and to cook healthful meals on her own. “Liz lets me use the long knife,” she tells me with pride (thanks, Liz!).

Winning the gold at Special Olympics!

GiGi’s is endlessly positive. There are always teaching moments that occur. Their doors and arms are open, offering a place to gather, to learn, to grow, accepting and valuing each of our children for who they are. The fact that all the programs are free is a monumental help to the families! We feel so very fortunate and blessed to have our GiGi’s, the staff and all of the AMAZING volunteers that give so generously to our children.

They say the first step toward change is awareness.  GiGi’s mission is to raise awareness and change the way the world view Down syndrome. I wouldn’t change Alexa for the world…but GiGi’s Playhouse is helping to change the world for her.