A special contribution by guest blogger Marissa Marinan
Marissa shared her story via our Stories of Hope questionnaire.
How has your child exceeded your expectations
Gannon surprises me every day. His determination to master task is inspiring. He works so hard and because of that he has met his milestones on time thus far.
Who has helped you in your PWS journey?
Our families have been so encouraging and loving. Without them it would be a lot harder to maintain a positive outlook.
What would you say to a parent whose child has recently been diagnosed with PWS?
Never put limitations on your child. They will do so many amazing things. They will continue to surprise you.
What gives you hope for the future?
The amount of research being done gives me hope that things will continue to be discovered to improve our children’s way of life.
What are you thankful for?
I am thankful for my son Gannon, he is the light of my life.
What positive life lessons have you learned from having a child with PWS?
I have learned that hard work is so important and that is truly pays off.
What does this quote mean to you?
“Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness.”
When Gannon was born and had to be in the NICU for five weeks, it was the hardest thing my marriage had been through. Then we received his diagnosis, and yes, my husband and I went through a grieving moment, but we realized that it was our job to protect our son and be strong advocates for all of his dreams. I have had to fight hard for many things and I know that will never cease but I am ready.
How about this one?
“Most people see what is, and never see what can be.”
People are not always going to see the potential that I see in Gannon because they will hide behind a diagnosis. I will always choose to look beyond that. Gannon is such a tenacious little boy and I truly believe he can do anything he sets his mind to.
Do you have a story of hope to share with others about your experiences with PWS? Send it to us!