At the age of seven, I was put into hospice care after being diagnosed with cystic fibrosis, a progressive disease affecting the lungs and digestive system. When I was released a year later, I told everyone that this disease wasn’t going to take me. It was not my time.
A couple of days after Mikey’s 4th birthday, we learned of his diagnosis. When you are told your son has neuroblastoma, it changes your life dramatically overnight. It’s been hard, feeling alone at the hospital. Our social worker connected us to There With Care, and that was so helpful…
Debra has Dilated Cardiomyopathy. Her heart does not pump blood efficiently. She wears a bag with a computer (controller) and batteries that is connected to her LVAD. An LVAD is a surgically implanted mechanical pump that is placed in the left side of her heart. The LVAD works with her heart to help it pump blood more efficiently and it works as a bridge to transplant. I carry a bag with back-up batteries and controller at all times. At night, I have to plug Debra into wall while her LVAD batteries are charging …
In late March, Fernanda marked off two milestones. The first was a happy one, as the outgoing teen who loves music, drawing and experimenting with make-up celebrated her 14th birthday. The second was more sobering, as she passed the one-year anniversary since joining the waitlist for a double lung transplant …
I have been told by others that I am strong. Sometimes I too wonder how I do it, because fact is, I never sit still. Nothing seems to come to our family with any amount of ease. After nearly two years of constant chaos and worry, I admit I am tired and emotionally drained.
I am Ella. But, more importantly, I am the grandmother to a beautiful 10-year-old girl named Jaylynn. Jaylynn is a twin and one of five sisters. I feel fortunate to have legal custody of the girls, and my number one priority in life is to make sure that they are happy. I love them and treat them like they are my own.
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