When I was in college, my professor posed a question: If you know your child will have a 50% chance of having a life-threatening disease, will you choose to have this child? She told of someone she knew who repeatedly had children with a deadly genetic disease. She had multiple children who passed away very young, yet she chose to take the risk and bring more children into her family. At the time, I didn’t have enough life experience to have an opinion. However, it is a discussion that has stuck with me all these years. Interestingly, that is the same scenario our family has been given. Each of our children had a 50% chance of having vEDS. We just didn’t know it until we had 6 of them. And now 3 of our children will have a 50% chance of passing it on to any biological children they choose to have.
Would Things Be Different if We Knew Earlier?
We didn’t know that Greg had vEDS until 2 years ago. By then we already had all six of our children. I have often wondered what would be different if we knew when he was younger. Would I have still married him if I had known? Would we have biological children at all? How many children would we have? I am sure this knowledge would have shaped our decisions, and our family and life would likely look very different. This knowledge would have changed everything.
Looking at my family now, I’m glad we didn’t know. I’m grateful that we didn’t have to knowingly choose to bring children into the world with vEDS. But then I wonder why this knowledge would make my children less worthy of life. Sometimes knowledge can be paralyzing. I love each of my children, and I’m glad they are part of our family exactly as they are. The ones who have vEDS are not lesser at all. Their existence is miraculous. They are whole, gifted, and beautiful. Their lives are just as valuable as any other child’s life.
Asking Hard Questions
I have had some discussions with one of my children that have left me in tears afterwards. Questions have been asked that I have had to really think about.
“Is it okay for me to get married?”
“Would it be wrong for me to have children?”
This makes me think that maybe knowledge isn’t always power. Sometimes knowledge is scary and mean and life altering. Knowing that you have a life threatening illness when you’re young alters so many things. I have told this child I think they are just as worthy of getting married and having their own children as anyone else out there. I will support whatever they decide to do, but I hope they don’t make their decisions out of fear or shame.
The Real Truth
The truth is that any person could be completely healthy one moment and have a traumatic accident the next. Any person could get cancer or some other life-threatening illness at any point in their lives. The difference between other people and my family is knowledge. Why does knowing what your challenges might be somehow make it harder to feel worthy of having your own family? Why would our children deciding to have biological children become a moral discussion? Is it wrong to bring children into the world knowing they could have some challenges and what those challenges will be? What is the difference between bringing children into the world not knowing what their challenges will be? I honestly don’t think there is a difference. All of my children’s lives are worthwhile, and I am glad they are all here, vEDS or not.
Don’t Let Knowledge Take Your Power
I think knowledge can be powerful. The reasons we decided to have our kids tested for vEDS outweighed the risks of knowing. Because we know which of them have vEDS we can take precautions to keep them safe, we can have an emergency plan, and we can have a medical team at hand if needed. This knowledge can save their lives. That is power because it gives us more choices and options than not knowing would.
But knowledge can also take away your power if you let it. You can give your power away by making decisions out of fear. You can let your circumstances make your decisions for you. If you feel like you don’t have a choice, you are giving your power away because you always have a choice. Always. Your power IS your choices. I hope my children always remember they have choices. They can have a family, a career, and chase their dreams, even though they know they may have unique challenges getting there.