Eugene Havens and Percy at five months
The day that changed our lives
At 27 weeks gestation, our unborn son was diagnosed with Down syndrome. It was a shock. As parents with dreams for their child, Down syndrome felt like a life was ending, not beginning.
It wasn’t true, we’d learn. Down syndrome is not the enemy of a good life. It’s a condition, that’s all. We pressed on, knowing we wanted to meet our baby and help him.
We pressed on, knowing we wanted to meet our baby and help him.
Our first good news came from a renowned children’s hospital. Specialists there walked us through all the steps. They introduced us to a new world with positive news. We hadn’t believed the gloom and doom we’d been hearing about people with Down syndrome. We knew there had to be a life, a future for our son. And there would be.
We hadn’t met a baby with Down syndrome until that December evening when Percy was born. We couldn’t help thinking, “he’s not less at all. He’s more.” We were witnessing the hidden way this world works. Those who seem lesser are, often, greater.
Percy has charisma about him. People want to see him. Doctors, nurses. People in the store. On the street. They want to know the story of this special little guy.
The day that changed our lives was a change for the better.
So do we. Percy has an amazing life ahead. The day that changed our lives was a change for the better. If only expectant parents could know what we didn’t. A special-needs diagnosis is the beginning of a journey. Just like any other.
“My son Percy is teaching me, when you face big challenges you get huge blessings.”
— Eugene Havens
Who am I?
I’m not a professional caregiver. I’m no expert. Like most, I came into special-needs parenting unexpectedly. What then?
Like most, I came into special-needs parenting unexpectedly.
I had a lot of things planned. My son coming into the world with special needs wasn’t one of them. It was a decision to push aside everything else for the inherited crisis of my son’s health. It wasn’t a difficult decision, not at all. It was a deliberate decision, however. Suddenly, Percy’s care affected every waking moment of my life for three years.
Parents in my situation have a few choices. If they learn of their child’s condition early like we did, they can make an unfortunate, permanent choice. They can also make a choice for life. And yet, the decisions don’t end there. Parents must sacrifice a large part of their personal lives, at least in the beginning. What will our attitudes be? Will we find a way to cope with a new normal? Will we enjoy our child in the process? Will it be a struggle? Will we let ourselves feel discouraged?
When parents choose their children over themselves, it’s the highest form of love.
I’m writing this blog because, for me, these questions were real. When parents choose their children over themselves, it’s the highest form of love. And yet, there’s the day-to-day life we have to live afterward. What does it look like?
This blog is the culmination of three years of struggle to get my child healthy. It doesn’t play up the drama for clicks. It also doesn’t minimize the hardships. We’re sensitive to the portrayal of children with special needs. We want new parents just finding out the diagnosis to choose life like we did. And yet, people know it’s a struggle. I don’t think most parents are afraid of struggle. They want to know, is the outcome worth it? Can I do it? I believe many parents are looking for a reason to say yes. They need to hear real experiences over crafted narratives.
Raising my son Percy has been the most challenging thing I’ve ever done. If you know anything about me, it’s saying something. I moved to New York City at the age of 21. I broke in the competitive media industry. I’ve spent years pursuing a career writing books. I started my own literary press. Then, with my wife I moved to a rural community that is the opposite of the world I knew and preferred.
This blog is the culmination of three years of struggle to get my child healthy.
All to say, I’ve sought out challenges. It’s nothing compared to helping to nurture the life of your own child, especially when that child has serious health and developmental problems. Is the outcome worth it? Could I do it? I found out. Now, I’d like to share those experiences with you on this blog.
Please share your experiences as well. Let me know what you think. Contact us.
