Meet Lucas. A little boy, whose short life is helping spread awareness and hope.
Words from Lucas’ Mom:
Lucas was born on Saturday, December 3, 2016 at 2:09 PM. Shortly after Lucas was born, doctors explained to my husband and I that they suspected he had Down syndrome. His diagnosis was confirmed a few weeks later through bloodwork. After his birth, Lucas was transferred to Golisano Children’s Hospital to assist with his breathing. While there, Lucas was also diagnosed with a congenital heart defect, a complete AV Canal Defect. He became part of the 50% of children born with Down syndrome that also have a CHD. His cardiologist explained that surgery would be necessary to repair the hole; this would take place when Lucas was around 4-5 months old. After spending 12 days in the NICU, we were finally able to bring Lucas home to meet his big sister, Maddie (who had been waiting not so patiently for her little brother’s arrival).
The next few months were filled with doctor appointments, EKGs, blood draws, weekly nurse visits and weigh ins. Lucas had an NG tube placed to help him gain weight for his upcoming surgery. Lucas grew. Slowly. And each day, our family fell deeper in love with our Lukey Duke, as his sister called him. Lucas began receiving early intervention services. He was holding his head up for short times and had learned how to smile. It was the most beautiful smile the world has ever seen. Those smiles were always the biggest and brightest for his big sister. He was, easily the happiest baby you could ever hope to meet.
As the moths pressed on, we learned that Lucas’ heart surgery would take place in May. Our anxieties grew. How could we possibly be asked to hand this perfect little person over to the doctors? But my husband and I kept telling each other “We don’t have a choice.” So, almost 6 months after bringing him home, we drove back to Strong in the early morning hours of Friday, May 19th, and we handed our perfect son to a surgical team. The next 6 hours were the longest of our lives. We waited and waited. Finally, after what seemed like an eternity, we received word that he had made it through like a champ! We saw him briefly as they transferred him to the Pediatric Cardiac Intensive Care Unit.
A few days after his surgery, Lucas began showing some signs of distressed breathing. His team placed him back on high flow oxygen, and several days later we received devastating news: Lucas needed another surgery. There was an issue with his mitral valve; it wasn’t working properly and was causing Lucas’ breathing problems. So, one week to the day after his first surgery, we handed our sweet boy over yet again to the surgical team. After several hours we heard from the OR; Lucas was doing great and the surgery was a success. And so round two of recovery began, only this time, Lucas made leaps and bounds. Lucas was so strong and brave that our family gave him a new nickname: Lucas the Lionheart. Another week passed and we were given the green light to go home. I don’t think our family has every been so happy.
The next three weeks were amazing. Lucas began his PT sessions again, he was eating on his own without throwing up nearly everything he ate. He was so happy to be home with his family, but mostly to be back with his sister. Life was smiles and laughter and happiness. We even received the go ahead to begin rice cereal. He loved that high chair; he could see everything! And the joy on his face after his first bite was simply indescribable.
Our lives seemed to finally be settling down. Lucas was doing fantastic. But then everything changed. Overnight, on June 22nd, Lucas began fussing. He would cry, was unable to sleep and was gagging. My husband and I rocked him, held him, sang to him. We did everything we could to try to soothe him. Was he gassy? Was his NG tube making him gag? We removed it, but he continued to be upset. At around 5:30, Lucas’ breathing began to speed up, and I noticed that he had begun retracting. Chris and I decided to take him to Strong to see what was wrong. As I put some extra items in our backpack and Chris loaded Lucas into the car seat, I noticed that Lucas had gone quiet; I looked over and saw that his lips were turning blue. I screamed for Chris to take him out and I called 911. The ambulance came. I was asked to sit in the front seat. Chris followed in our car. We arrived at Unity and I watched as EMTs did CPR on my baby. They took him to a room and the doctors worked valiantly to bring our sweet boy back, but Lucas was already gone. He became an angel at 7:19 AM in the same hospital where he came into the world.
The next few days were a blur. I know that we made arrangements for Lucas’ memorial service; I know that we went to a funeral home, decided on times and dates; I know that we went to a monument maker and chose a headstone for our boy. We have these memories that no parents should have. We did things that we never thought we would have to do. We had to let go of our son, able to hold onto only his memory, his blankets, his photographs. We had to explain to his sister that he had become a star and was in Heaven. We had to tell her that he wasn’t coming home.
Lucas’ memorial service was June 29th, a week after he died. We were so touched by the outpouring of support from not only our family and friends, but by so many of the people in the Down syndrome community that came to celebrate the life of our sweet boy, people that we only knew from online support groups. These people proved that those in the Down syndrome community, our tribe, are the kindest and best people around. We are so very thankful to know them and thankful to have them in our lives.
A few months after Lucas passed, our family decided to start Project Lionheart to honor Lucas’ memory and to help support the Down Syndrome community. We began with a donation fundraiser, and a few months after began a t-shirt campaign. While online one day, we found a beautiful drawing of a lion. After some research, we were able to contact the artist and received her permission to use her image on our t-shirts; her lion became the mascot for Project Lionheart. Raising money through fundraisers and t-shirt sales, we have been able to make a donation to the Flower City Down Syndrome Network at the annual Buddy Walk, send 47 rainbow lions to the PCICU for children recovering from heart surgery, and buy materials for Gigi’s Playhouse for programming. These activities help keep our minds busy for short periods of time; but the ache of losing Lucas is always present. Project Lionheart has been a way to share the memory of our sweet boy with the world. We wear our shirts proudly, showing our support for the warriors in the Down syndrome community. Maddie loves to show people her “Lukey Lionheart” shirt, as she calls it, and tell them all about her brother, who is a star in Heaven. She wears his picture in a locket, close to her heart, where he will always be.
It was a pleasure to do a special photo session with some local kids who have Down syndrome. I am hoping to spread awareness locally in addition to adding my own flair to the campaign, Changing the Face of Beauty.
Our local news station aired the story on Thursday, April 26th to shine a beautiful light on these adorable kiddos and our photo shoot. You can watch the story here.
BETHANY CHASE PHOTOGRAPHY IS A TRUSTED AND EXPERIENCED PORTRAIT PHOTOGRAPHER IN ROCHESTER NY THAT CREATES CUSTOM NEWBORN PHOTOGRAPHY, MATERNITY PHOTOGRAPHY, BABY PHOTOGRAPHY, CHILD PHOTOGRAPHY AND FAMILY PHOTOGRAPHY EXPERIENCES FOR CLIENTS ALL ACROSS THE AREA. BETHANY CHASE PHOTOGRAPHY CURRENTLY SERVES, BUT IS NOT LIMITED TO THE FOLLOWING NEW YORK AREAS: ROCHESTER, WEBSTER, PENFIELD, PITTSFORD, BRIGHTON, PERINTON, FAIRPORT, HENRIETTA, SPENCERPORT, GATES, CHILI, IRONDEQUOIT, GREECE, CHURCHVILLE, MENDON.
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newborn, child and family photographer
rochester new york