(Submitted by Pat Wright)
HPE is not a rare disorder in our immediate family, 50% of the children have HPE, and it has not prematurely taken the lives of the affected children, as one is 32-years old and the other is 23-years old. It has however taken us down a road of understanding and certainly made me a better person had I not met Mary and Robert Wright.
My disabled children required more assistance than their able-bodied brothers, but a lot can be said for children who are non-verbal and independently mobile. Truthfully, in certain social situations, I have looked at my Mary, and from the expression on her face, I was grateful that she could not express what she was thinking.
I tried to plant the seeds of religious belief in all my children. Two of the four children remain weekly churchgoers, can you guess which ones? Yes, the two who are wheeled into Church each week, as they have no choice.
In 2003, my able-bodied son John was driving a fuel truck for the United States Army in the war with Iraq, on roads set with improvised explosive devices. Having fully expected to bury two of my children as some point in my life, I was fearful it would include one child I expected to outlive me. He came home safely and completed his service to his country.
When I found out that Robert had HPE like his sister, my son Tom, who was four years old, was with me. I was crying as it was not news I wanted to hear, and Tom told me, “He is still the most beautiful baby in the world.”
No one is guaranteed a long life, and good and bad comes with any life. I have learned to accept that. At times, I have had to insist on or resist particular courses of actions, but I had to do that with all four children. A child is a child and their abilities are simply their abilities and truthfully, the challenges might be different but the challenges are always there.