When I was pregnant with Von, it was a very complicated pregnancy. The complications were primarily on my end and not at all related to how Von was developing. In fact while pregnant there were no indications anything was wrong. He measured small in size, but beyond that, his heart and organs all looked good. While I was pregnant, we had the discussion about going through genetic testing. Todd and I both agreed we would not do the testing. What was there or not there genetically made zero difference. We loved Von before he was born, and we simply wanted to be his parents. Neither of us believed that love should be conditionally based on whether all of his genetic pieces were present.
Over the past three years, I have heard a lot of really insensitive questions about Von. It’s a part of parenting a child with a disability and a life limiting disease. I truly believe people have a very difficult time wrapping their heads around a child being sick and facing so much adversity. The one question of all questions I hear that bothers me more than any other is “Would you still have had him had you known while you were pregnant?”
My initial reaction when this question comes out of their mouth is to reach over and strangle them. I’m not a violent person. However, I do feel my fingers tightly curl in to a fist and see my knuckles become white. When this is asked to me, I genuinely wonder if the person truly understands the magnitude of what they are asking. They are asking me if I would have killed Von and terminated a pregnancy at 20 or more weeks. None of his issues would have been evident in an ultrasound until at least that point in time. Can you imagine terminating a pregnancy at 5 months pregnant? I have met babies born at 23 weeks and I have seen them beat all obstacles and thrive. The thought of terminating a pregnancy based on something like missing genetic pieces or organs missing seems cruel to me.
A lot of times I have to remind myself that questions like these are asked because this situation is incredibly uncomfortable for most to handle. Sick children make people feel uneasy. It is not natural for parents to bury a child, and it’s not the norm in society for a child to have to fight to survive. Most children grow, develop, and thrive. They don’t require multiple doctors, therapists, nurses and medication to learn, grow and live. However, for Von that is his reality. There are a lot of kids living in our community like Von. I just happen to be a person that is putting the story out there. Most families sit in the shadows without a voice and face unspeakable discrimination and prejudice. I think this is why people feel like they can ask these questions to me. When I answer, I am answering for all the families that would say the same thing.
When you become pregnant and start planning your life, you have dreams and hopes for the child. However, the truth is they are just dreams. We as parents have no control about what will happen. There are many things that can steer things off course. Children can have all kinds of issues that don’t fit in to our perfectly wrapped up box of what we want for them. In parenting a child like Von, I have learned you need to be very flexible. You don’t get to have the same kind of dreams. We don’t dream about marriage, high school graduation, prom, driving, or first girlfriends. Our primary goal is getting Von to a place where some of those things are attainable. However, the truth is he may never get there. He has a lot of diseases working against him. That doesn’t mean we stop trying, stop helping him, and give up because he’s sick. He still deserves to be a child, laugh, grow, learn and explore. As long as he is my child he will do all of those things.
Doctors have been very clear with us that we have no prognosis for Von. There is nothing that can tell us what his life expectancy will be. We enjoy every single day we have with him. We parent him, love him, cuddle him, kiss him, and give him the best we can so he is happy. There will never be a crystal ball for Von. However, we have hope and faith. We have faith that our doctors will help us, we have hope he will grow and learn, and we have faith that God will keep Von safe as long as it’s possible. It’s not easy at all. I would much prefer a child that had all of his glands working. The reality is that I do not. I would love him to not have neurological issues that cause his brain to be overly large or to have a cerebellum that is overgrowing his skull. These medical issues are who Von is as a person. If we have Von, we have Von for what he has in his body. I’d rather have Von than a million well children because he’s taught me so much about being a better person, better fighter, advocate, and how to have grace under immense stress.
If you ask me again if I would have terminated had I known again, I will let you with most certainty, “Absolutely not.” Then I will look at you and ask you “Would you have terminated your child because they may not have been everything your dreams wanted them to be?” The learning lesson here is simple. Don’t ask the question.