Fri. Aug 12th, 2022

It’s common for parents of babies with Down syndrome to experience shock, sadness and fear over the unknowns of raising a child who has intellectual and developmental disabilities. Serious health problems can add to the panic; about half of all children born with Down syndrome have heart defects. But veteran parents have a reassuring message for new moms and dads out there:

It gets better. So, so much better.

Here are 21 things they say they wish they had known from day one about what it’s like to have a child with Down syndrome.

  1. Well-meaning medical professionals might not say the right things.
    “I wish I had realized that the doctor who delivered your diagnosis did not understand the beauty of raising a child with Down syndrome. I wish I wouldn’t have let the harshness of his words affect me in such a profound way. … Where he saw different, I see wonderment. Where he saw delays, I see triumphs. Where he saw pain, I see love.” —Shannon Striner
  2. Down syndrome does not mean a poor quality of life.
    “Down syndrome is not a death sentence. When my daughter was born, I wish I had known that things would be OK — that we would laugh a lot, and that she would bring me so much joy every day.” —Keli Gooch
  3. A complete change of pace in life can be refreshing and fulfilling.
    “Before our daughter with Down syndrome arrived, our life was chaotic and fast. She has forced us to slow down and appreciate the beauty that comes from the road less traveled.” —Shannon Striner
  4. Your baby is still your baby.
    “Your baby is not defined by Down syndrome. Yes, your child has Down syndrome, but he or she will still be a unique little person with likes and dislikes, strengths and weaknesses. Your child will buck trends and stereotypes, surprise you and delight you, also make you mad and disappointed — just the same as your other children. But you will love them, adore them and they will fill your life with joy — just like your other children.” —Sinead Quinn
  5. A child with Down syndrome is a blessing for his or her siblings, not a curse.
    “I wish I had known that having a child with Down syndrome would make her older sister even more kind and empathetic. Sharing the spotlight has made her happy, not resentful.” —Shannon Striner