The Unexpected

When we are growing up we think about how we want our lives to be, how many children we want, if we’re going to get married, what kind of house we want to live in, all kinds of things. Those are the simple things that I wanted in my life just like everyone else but simple was not what it turned out to be.

I became a mother when I was a teenager. I faced the challenges of what all teenagers go through but in addition to that I had to take care of a child while trying to finish High School. In that journey it was difficult for me but imagine having a child who is ill all the time on top of that. Being a parent is a great responsibility. It’s our job to love our children and protect them. When I had my son I had no idea what I was in for. The first two years of my son’s life was very difficult, he was always ill and we didn’t know why. We had countless doctor’s appointments, overnight hospital stays and emergency room visits.

It was a mystery to his doctors as to what was going on with him. We had been tested for HIV, various cancers, sickle cell and the list goes on but all came back negative. After doing some research his doctor found out about a disease called “Chronic Granulomatous Disease”. They tested both me and my son and it came back positive. It was not what I wanted to hear but it was a relief to know what we were dealing with.

It was very difficult for me to understand what was going on with him and I kept thinking what did I do wrong.

I am a X-linked Carrier of Chronic Granulomatous Disease (CGD). What that means is that I’m the carrier and any boy that I have has a 50% chance of having the disease.

CGD is a genetic disorder that affects the immune system and the body’s ability to fight infections effectively. Being a carrier led me to feeling guilty, helpless and angry at the same time.

I love my son so much that I had to take all the strength I have and put it toward his well-being. At times it was difficult but I made sure that he would laugh, play and be “normal” as much as possible like other children.

We had so much support from our family, hospital staff, classmates and other families who understood what we were going through. He died at the age of 20 and I appreciate and love him with the time that we spent together.

I know what it’s like to love, nurture and take care of a dying child. Losing a child can bring on grief, depression and emptiness. But we don’t have to do it alone.

I am here to share my journey and offer support to parents and caregivers.