by Joe and Cindi Ferrini | Mar 20, 2023 | Caregiving, Medically Fragile, Special Needs Parenting
Adjusting to any challenge is difficult, especially when the challenge is physically and emotionally draining. A life-altering diagnosis shifts attention on the problems and issues of the person needing care, and often the caregiver’s needs are overlooked, or at best,...
by Evana Sandusky | Feb 8, 2023 | Down syndrome, Medically Fragile, Special Needs Parenting
My daughter’s heart has never been normal. That’s a tough sentence to write, but it’s true.Seventeen years ago, I strolled into the NICU for my mid-day visit with my daughter, Jaycee. She was in the middle of her first echocardiogram to examine her heart. I sat...
by Evana Sandusky | Jan 4, 2023 | Caregiving, Medically Fragile, Special Needs Parenting
As the hours into the trip went along, I felt more and more discouraged.It started with my family of four going on an overnight trip. My daughter with Down syndrome had several specialist appointments in St. Louis over two days. We decided to spend the night in a...
by Joe and Cindi Ferrini | Dec 19, 2022 | Medically Fragile, Mental Health, Spiritual Growth
As the days drew nearer to His birth, Mary found herself in a time of waiting. Could she have understood what it meant to carry the Christ-child? Humbly, she endured the looks and speculations of others—perhaps including Joseph. Even still, they persevered and...
by Evana Sandusky | Dec 5, 2022 | Caregiving, Medically Fragile, Special Needs Parenting
Christmas is one of my favorite times of the year. I enjoy decorating our home and setting up the Christmas trees. I love unboxing our ornaments and placing them on the tree. Each ornament displays different aspects of our life as a family over the...
by Evana Sandusky | Nov 9, 2022 | Medically Fragile, Special Needs Parenting, Spiritual Growth
This time of year always causes me to be a bit more introspective. Thanksgiving reminds me to be grateful in all seasons of life. I have spent many Novembers in a funk as I struggled to care for my child with Down syndrome and her many medical diagnoses. A few of our...
