Julius Needed A Caregiver. But He Also Needed His Mom.

juliusHeaderDenise and Trimbak were thrilled to learn they were about to have a baby. They didn’t want to find out the sex beforehand because they wanted to be surprised. It was a boy. Julius. Eighteen hours later, they had another surprise. A visit to the ER and eventually, a diagnosis: Julius had SMA (Spinal Muscular Atrophy), a terminal disease that causes deterioration of the muscles and impaired mobility.

Denise explains, “It was so hard to hear, ‘You have a newborn baby and you have to think about an end of life plan.’” Despite Julius’ illness, he was a very happy baby and only cried when he needed something. And he needed more than they ever imagined. Denise and Trimbak became full-time caregivers. “We decided we did not want to hook him up to machines or keep him in the hospital.”

“I went online and I read about Hospice Hawaii. We called and they came. Everyone was extremely helpful. They’d call to check in and visit. The nurse gave great suggestions, helped with medications, and just talked with us. I had resuscitated Julius so many times…one minute he was smiling, happy and vibrant, and the next minute he’d be gone. Blue…white lips. As a parent you have that terrible internal struggle of when do you stop doing that? I had a conversation with one of the Hospice Hawaii nurses…when do you stop doing? And just start being with your loved one? That was an incredibly liberating conversation for me. She helped me realize I could just be his mother in those last days. It was the best gift anyone could’ve ever given me. Hospice Hawaii left a big impression on us because we had a lot of support at the most critical time. They suddenly became a vital link to our family survival keeping us emotionally intact through the crisis. When Julius passed, our nurse came and helped us through the process. To have someone like her show up at five in the morning and just take care of things made it as easy as it could possibly be. I can’t imagine anything that would touch me more than having that incredible support at my absolute most vulnerable moment. I feel like she’s a lifelong friend now. They all are.

“Hospice Hawaii allows people to have grace and dignity at a time when it feels like your world is falling apart. And for us to have this valuable time with our son and to be able to face his death courageously is really quite amazing. The only regret we have is that we didn’t call them sooner.”

 

“We can’t change what’s going to happen, but we can make it better.”
– Dianne, Hospice Hawaii Nurse Practitioner