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Category: Parent to Parent

The Joys and Fears of Parenting a Medically Fragile Child
Published Jan. 25, 2019
By Kizzie’s mom, Amanda I still remember the day that I found out I was pregnant with our little Kizzie Jane. I was overwhelmed with joy and fear. I was so excited to be pregnant again after a miscarriage. But I was scared as well because of the iss…
Celebrating Nathaniel's "Inchstones"
Published Dec. 28, 2018
By Nathaniel's mom, Alysha "To have joy in your heart, one must know how to appreciate the small things in life."  - Unknown Our son Nathaniel was born with a rare SCN2a genetic mutation. Because of this mutation, he is nonverbal, non-ambulatory whe…
Facing Challenges Together
Published Dec. 21, 2018
“We all know that there are no days off when you’re a parent,” Jeffrey says. “However, many people don’t understand that when you’re a parent of a special needs child, there aren’t even any moments off. When Gabriel goes to sleep, we can’t really re…
Raising an Orchid
Published Aug. 24, 2018
Ten years ago, Oscar sat with his wife in a hospital room, his six-month-old son in his arms, and learned about the disease that had changed their lives forever. Spinal muscular atrophy. As Oscar listened to the doctor describe the progressive muscl…
Reagan and Ron
Published June 17, 2018
“My favorite memory with Reagan is sitting on the beach in Cape Cod with her last year,” Ron recalls. “Reagan was in an adaptive beach chair that my wife bought for her. We were just sitting on the beach. She was watching the waves and the wind and …