NY DAILY NEWS EXCLUSIVE: Taylor Swift music helps teen battle disorder

Meredith Engel March 1, 2015, 2:30 AM For a teen battling an extremely rare brain disorder, Taylor Swift is just what the doctor ordered.Johanna Benthal, one of Swift’s biggest fans, can often be heard belting out “Love Story” and “Shake It Off” with the help of her music therapist at NYU Langone Medical Center.Benthal, of Jamesport, L.I., was born with the CCM3 genetic mutation, which has been documented about 100 times around the globe. It causes blood vessels in her brain to develop abnormally and leak blood. The disorder has landed the 18-year-old in the operating room a staggering 91 times.  But the power of music helps the brave teen feel her best. “It gives me a sense of purpose but also an opportunity to show what I have to offer to the world,” she told the Daily News. Benthal’s music therapist, Joseph Lee, meets with her and other patients [...]

2017-01-08T20:42:47-05:00 March 1st, 2015|Categories: In The Media|0 Comments

Shed doubt, step out of the boat … and walk

“After Jesus dismissed the crowd, he went up on a mountainside by himself to pray. Later that night, he was there alone, and the boat was already a considerable distance from land, buffeted by the waves because the wind was against it. Shortly before dawn Jesus went out to them, walking on the lake. When the disciples saw him walking on the lake, they were terrified. “It’s a ghost,” they said, and cried out in fear. But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.” “Lord, if it’s you,” Peter replied, “tell me to come to you on the water.” “Come,” he said. Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!” Immediately Jesus reached out his hand and caught [...]

2017-01-08T20:42:47-05:00 October 26th, 2014|Categories: Life on Purpose|0 Comments

The power of language

Have you ever read the book, “The 5 Love Languages” by Gary Chapman? It’s pretty cool. I read it years ago. Chapman categorizes love languages into: words of affirmation, quality time, and acts of loving service, physical touch and receiving gifts. The other day, I took the online love language profile to see if my love language has changed over the years. Nope, it’s still the same. Words of affirmation are my primary love language, followed by a tie between quality time and physical touch, then acts of loving service. Receiving gifts didn’t even rate a 1 on a scale of 12 points! All my husband needs to do is listen to my heart and tell me how he loves me while we walk on the beach holding hands- and when we get home, clean the house! Forget the gifts, they don’t rate for my love language! Words are my [...]

2017-01-08T20:42:47-05:00 October 19th, 2014|Categories: Life on Purpose|0 Comments

Afraid but strong, choosing light over darknesss

Originally Published: As I lay on the cot in the dark room, the quiet drone of the IV pump and the hissing sounds of oxygen played in my subconscious like an old familiar song. Hours before, I was dressed in a paper suit and face mask preparing to go to the operating room. I was covered from head to toe as I accompanied my daughter, Johanna into the operating room for her ninety-first surgery. This was an all-too-familiar experience, one that parents pray they never need, that has become a frequent part of my life over the past eighteen years. I did what I always do; I helped her onto the gurney as we joked with the nurses and anesthesiologists in the bright, cold operating room. I understand the lights and the sterile environment, but I keep forgetting to ask why the operating room is so very cold. The [...]

2017-01-08T20:42:47-05:00 October 14th, 2014|Categories: Uncategorized|0 Comments

Martha’s hands and Mary’s heart: Life on Purpose

Illustration by Hannah Conti When I get to heaven, I have a lot of questions to ask, like: “How do we make sense of suffering?” and “Where did Moses and Abraham hang out before heaven was open?” But one question I’ll be sure to ask is prompted by Jesus’ response to Martha when He was a guest in her home and she asked for help: “Martha, Martha, you are worried and upset about many things...” (Luke 10:41) When I read those words of Jesus, I just want to ask: “How could you be so rude to Martha, when she was so nice to invite you for dinner and she did all the work?” Behind the scenes of this comment, Martha (and I suppose Mary) were hosting this little dinner and they invited Jesus to come. Now, Jesus was all about dinner. Some of His most important conversations happened over meals. [...]

2017-01-08T20:42:47-05:00 August 3rd, 2014|Categories: Caregiver, Life on Purpose|0 Comments

Do you look but don’t see?

I hate wearing glasses. Since I am near-sighted and my near-sightedness is getting considerably closer, I should wear them more, especially when I am driving. But I hate the feeling of something sitting on my face and framing my vision. I lose them often because they just get in the way. My visual struggles got in the way big time last week — once on land and once on the water. Last week, my daughter and I were handing out flyers on Love Lane in Mattituck for our Canine Companion event. While in one of the shops, we ran out of flyers. When we walked back up the street to get more flyers, I saw an eager look on my daughter’s face and I knew she wanted to bring them back to the store by herself. Raising a child with developmental disabilities is always a balancing act and a lesson [...]

2017-01-08T20:42:47-05:00 July 27th, 2014|Categories: Caregiver, Life on Purpose|0 Comments

True beauty comes from within

MaryAngela, my second daughter, was joyful and excited about life from the womb. She too was a feminine beauty. On my last pregnancy check up, the day before she was born, the midwife gave me a wide-eyed look of shock and laughter as she completed the exam. I had felt the baby move, but I had no idea what just transpired within me. The midwife explained that while this little one had no intention of arriving that day, the baby pushed her head into the midwife’s hand with a greeting-like movement, seeming to say “hello!” and then retreated back securely in my womb. She had a jovial personality from the beginning. As much Anna loved to wear dresses to twirl while she danced, MaryAngela loved dresses for their parachute value as she jumped from the highest places she could climb. Both of my daughters exuded confidence and delight as they grew [...]

2017-01-08T20:42:47-05:00 July 20th, 2014|Categories: Caregiver, Life on Purpose|0 Comments

Faith, love and family, grown like flowers of the field

My husband and I were married on July 12, 28 years ago. To this day, the blue hue on the sides of the road, emanating from a beautiful wildflower that that blooms in July called bachelor’s buttons, reminds me of my wedding. I remember when my mom and I met with the florist for my wedding, just two months before the ceremony. We were discussing the bridal party bouquets. I was adamant that I wanted a bouquet of white roses for myself and single roses for the bridesmaids. After trying to dissuade me, the florist finally conceded and asked to show me the many different options for flowers for the chapel. My husband and I were getting married at the church on the college campus where we met. I stood up and shook the florist’s hand to thank him, explaining that my friend would be picking wildflowers the morning of [...]

2021-02-19T19:59:08-05:00 July 13th, 2014|Categories: Caregiver, Life on Purpose|Comments Off on Faith, love and family, grown like flowers of the field