Last Saturday, the annual spring preschool conference, New England Regional Seminar for Families of Children with Visual Impairments, was held at Perkins School for the Blind in Massachusetts.
Each year, parents with their infants and toddlers who are visually impaired, their brothers, sisters, and grandparents from the Northeastern states gather together. It is an amazing experience and meets a deep need for these families because often this is their first time to meet other families and to learn about all the resources and information available to them.
NAPVI has been a part of the planning team for the conference throughout its 27 years—so as NAPVI National Representative I had the opportunity to welcome and address the parents to let them know that this conference was very close to my heart.
When my son Alex was diagnosed at 10 months old with retinoblastoma, a rare form of infant cancer, I was devastated and searching for support and information and found out about the Perkins School for the Blind outreach services and the annual preschool conference. When I attended the first time, I knew I was no longer isolated in my experience. I met so many families with similar needs, and I found a wealth of information that I needed to know to cope and raise my son.
My message to the parents: I feel the greatest love is that between parents and their child, although some people would disagree so I’ll say, one of the greatest, most powerful loves is that between parents and their children—to nurture and protect their child. Even more so when a child is born blind or with a disability—you as parents become born advocates, with no choice. I’ve met many mother tigresses!
You as parents are the most important significant people in your child’s life. There will be many professionals—medical and special educators who will work with your child, many wonderful human beings that will open up a whole new life for you and your family—but your role is the most significant because you know your child best, you are the constant throughout your child’s lifetime.
My son is now 23 years old and graduated from Cornell University in 2009 magna cum laude. He currently has a job doing medical research at the neuro-scientific lab at Brigham and Woman’s, a Harvard-affiliated hospital, working on various disorders and injuries of the brain. My son wants to give back and make an impact in life. Ultimately his life was saved; he had one eye removed and has useful vision in his remaining eye.
Did I know what the future would hold when I was a young mom and my son was a baby fighting for his life and his sight? No, noone knows what the future will hold—we don’t even know what will happen for the rest of today or tomorrow. What I want to express to you is never lose hope: no matter what your child’s situation is, as parents we keep loving, protecting, and advocating for our children and having expectations.
Being a mother is enduring and you need to make sure that you try to take care of yourself. And I know that is difficult to do because most mothers have an instinct to always take care of everyone else, BUT you really do need to take care of your own physical and mental health. Now I’m acting like a mother to you—make sure you incorporate exercise and eating healthily into your lifestyle, and keep your own interests that can be stimulating for you and can be a stress reliever. These suggestions I’ve learned from raising three children who are now independent young adults, with some grandchildren on the way!
Enjoy the upcoming Mother’s Day weekend with your family and I look forward to hearing from you on www.FamilyConnect.org. This forum is for you.