Words from a Grandmother

*You are an experienced Grandmother of children with disabilities or special needs. But you weren’t always such. Do you remember what it was like when you first began to realize that my nephew was facing many challenges? How did that feel as a Grandmother?

Actually, we knew almost from the beginning that Seth wouldn’t lead a normal life. At the time, we were afraid he wouldn’t even survive. As a grandmother, it was heartbreaking to realize that my grandson would never live up to his potential but have to struggle throughout his life. 

*I remember spending a lot of time with them when they were babies, the heart monitors always going off when they were sleeping, but I’m sure I missed a lot. Can you talk a bit about what medical needs they had as babies. Doctors? Therapies? Medications?

Once Cameron was stabilized, they realized he would need heart surgery. It went well, and he was able to develop normally. Seth had hydrocephalus and then a brain bleed after being put on a special ventilator to aid his lungs. Seth spent about 2more months in the hospital than Cam because of the seriousness of his problems. After he came home from the hospital, a yearslong round of doctor visits and rehab sessions began. *What role did you play in caring for the boys?

We would try to go over at least once a week to play with the boys and give their parents some relief. We also helped out financially when we could. 

*How has it been to watch them grow up into adults? 

It’s been a roller coaster ride. So many ups and downs. They said his cerebral palsy was so bad that he would never walk. He did and he attended school. He has made the best of a bad situation, and now lives with many health issues that make day to day living difficult. 

*Did you ever see Cam struggling as the sibling to a kid with disabilities? If so, in what ways and were there ways to alleviate his struggle? (Asking for a friend ;-)

Cameron is the most levelheaded and even tempered person I have ever seen. If there were difficulties I’m not aware of it. He is still a loving and attentive brother. 

*Do you have any advice/words of wisdom or inspiration for Grandparents on how to support their children or the grandchildren with disabilities or special needs?

Just love them, be cognizant of their and their parents’ needs, and never assume you have any idea what they are going through.