Since Jacob's birth, we have struggled with his heart surgery, immediately followed by 3 broken legs - each leg occurring on a different family member, and all seeming to break within a week of the last person's being healed. Then there was the loss of my mother a year ago to cancer and my father 11 months later to complications from diabetes. In the past 3 years, we have never had more than 7 days of peace before the storms of chaos kicked back up again and we found ourselves struggling to keep our heads afloat and care for our family as best as we can.
After my father's passing, the waters calmed, and we've had more than a month of blissful peace. As I've stepped back and begun picking up the pieces of our fragmented lives, I've had a chance to see where the chaos has affected us most.
Although children are resilient, I've seen the affects most noticeably in my little ones. Rather than rushing to my father's side the moment K.C. came home from work, I've been blessed with quality time with my children (and cleaning my home! - thank goodness for small miracles!).
It quickly became apparent that I get out of them as much as I put in. And recent months have been a dry spell for poor Jacob. I've seen Jacob make more progress in the last month verbally than I've seen in nearly a year. He went from being able to do 12 signs in February and virtually no sound coming from his mouth, to now being able to sign nearly twice that much, babbling all day long, and occasionally trying his hand at a few small words like 'mom', 'dad', 'yay', and 'ball'. Yesterday he even tried to say 'yes'.
The last several weeks he's been exhibiting signs that he's interested in potty training, which was something I didn't think I'd need to address till he was four. I talked to his Pediatrician and she reminded me that even though Jacob has Downs syndrome, we should not limit him. Instead, give him opportunities to succeed.
Sufficiently humbled, I've committed to beginning potty training as soon as the older kids get out of school in June. (Wish me luck!)
And on that leap of faith, I wanted to share an article to the most amazing man who, by any standards, would be considered remarkable. What makes this individual awe-inspiring is that he, too, has Downs syndrome. Here's a teaser about my newest inspiration:
"Award winner and world traveler, Sujeet Desai is an accomplished musician and a motivational speaker who was born with Down syndrome. He plays seven musical instruments and has performed with world-class artists like Kenny G, Candy Kane, Joe Whiting and Quincy Jones, graduated from high School with honors before he finished his post secondary study at the Berkshire Hills Music Academy in Massachusetts. Since the early 2000’s, he has performed in over 40 states in the United States and in 14 countries around the globe. He is a recipient of numerous national and international awards including “The Presidential Award”(Singapore), “The Quincy Jones Exceptional Self Advocacy” award and “The World Down syndrome Day” award(Cape town , Africa). "
Sujeet Desai was asked to share a few travel stories with us. He willingly shared these.
“I have been travelling worldwide for over 15 years performing and speaking. Each trip I have many funny stories happen. Below are 3 stories, “Said Desai. “Years ago, I received award from the President of Singapore. I was supposed to play for three minutes before receiving the award. For that performance, I got dressed up in a Tuxedo with a special new tux jacket that my mom ordered custom made from India. There were over a thousand people waiting for arrival of the president and security was very tight. Security guards were carrying guns all around us. I was waiting with an escort to welcome the president and walk with him down the aisle to the stage to perform my piece and receive the award. I was very nervous with guards holding guns behind me. Just minutes before the president arrived, a guard asked me to take off my jacket. I did not want to do that but he did it anyway as that was there was rule that no one would wear jacket. They wanted to avoid anyone carrying suspect weapons in their jackets and also the president had decided not to wear a jacket that event so it could be casual. I did not understand everything at the time. I got very upset that they took my jacket away and I knew my shirt was not nicely tucked around my Cummerbund. There was no time to fix it and my mom wasn’t allowed in our secured area. I got very nervous and did not want to perform. The big moment came when the President arrived, now with even more guards surrounding him with rifles. He shook hands with me. Put his arm around my shoulder and smiled. Suddenly I stop shaking, I felt very comfortable because the President looked like any other person and I was not scared of him anymore .I played the theme song for 'Mission Impossible.' Every time I see the pictures my shirt sticking out, I think of all that happened at such an important moment of my life. (Another time) When I perform international I have pack all my performance items very carefully; still weird things happen like recently when I visited Romania. I packed my tuxedo shoes. But one was my shoe and the other was my brother’s shoe, two sizes bigger than mine. We had only hours left before I would need to go on stage and we did not know of any store selling these shoes and we did not speak the language either .We were already tired after my rehearsal and had my three instruments and luggage to drag along. A kind man took us from store to store translating to the store staff what we were looking for, dragging our luggage while walking on the road, and at times in a taxi and also on the subway train for more than six hours to finally find a replacement pair of tux shoes. Every time I wear those shoes, I remember the history behind them.”
Currently, he performs regularly in community churches, nursing homes, senior centers, hospitals to help bring joy to those who live away from home and family. This 30 year old ‘uniquely abled’ man enjoys independent living in his own home in upstate New York although he spends plenty of his time outside his home; traveling worldwide to do inspirational solo music performances and self-advocacy workshops.
Besides his love of music, Desai enjoys martial arts and has a 2nd degree black belt in Tae Kwon Do. But his accomplishments don’t stop there. He has won a gold and silver medal in the Special Olympics World Games '99 in Swimming, Alpine skiing, Cross-country running and Bowling. It is no wonder why he is a media darling and his life has been chronicled in two documentaries as well as several dozen TV and newspaper interviews including being featured by The Wall Street Journal, New York Times, “The View”, “20/20”, “Oprah Winfrey”, and WCNY. Recently, Desai was honored by NDSS as National spokesperson for Down syndrome which was published in 40 magazines nationwide as “THE TRAVELER” as part of a Down syndrome awareness campaign. In 2010, this talented young musician was selected as an Ambassador by Down syndrome International (London HQ). Sujeet Desai explained that he is most proud of his 14 international awards for self advocacy and how he has become a role model for others. But he is equally as proud ofhis athletic accomplishments including the medals at the Special Olympics and Belt Belt designation.
His travels has given him the opportunity to meet and perform for some notable celebrities including Eunice Kennedy Shriver, Anthony and Timothy Shriver, John McGinley, Kristi Yamguchhi, Nadia Kamunich, Bart Connors, Scott Hamilton, and Jim Kelly to name a few.
“My mom and my dad both trusted in my abilities and offered me every opportunity to learn new skills and most of all loved me no matter whether I learned or did not learn. That increased my self esteem and confidence to believe I can do anything if I put my mind to it. Just like anyone else. People usually do not believe in that a person born with Down syndrome can live a good life. They do not respect them for who they are. However, my parents never did that. They did not treat me differently and gave me every chance to learn just like they did for my older brother,” stated Sujeet Desai.
Desai has become a role model and has brought inspiration and hope to individuals born with disability, their parents, educators, and the services providers. Sujeet’s motivational workshop “My Story: How to improvise life with multiple intelligences” sends many messages across the world that given opportunities for their abilities individual with disabilities can “Make It Happen!” And his music is more than just an entertainment; it’s educational, inspirational and focused to make everyone’s personal mission possible. To learn more about Sujeet Desai and hear his music, please visit his web page www.sujeet.com or on Facebook at http://www.facebook.com/
By Diana Rohini LaVigne
Once again, I am humbled by the strength and tenacity of the human spirit. I hope you find his story equally has inspiring.