A new baby means a lot of sleepless nights, noise, and worry for new parents. But when a baby has special needs, the amount of work can even double or triple. About one in 700-800 babies in the U.S. is born with Down syndrome, and for many parents, finding out about their unborn baby can be overwhelming and heartbreaking.
This post may include affiliate links.
Such was the case with this mother, who posted a raw confession about how she didn’t think she could raise her DS son. “I know it can be rewarding, but I want a life as well,” she wrote with searing honesty. However, a year later, she came back with an update that made many people smile.
A year ago, a new mom shared her honest confession about being overwhelmed with raising a baby with Down syndrome
“I can’t do this for the rest of my life,” she admitted, asking for support and help online
Her confession was met with an outpouring of support, as other parents shared similar experiences and how they cope
Many parents feel grief after getting a Down syndrome diagnosis for their child
Parents of children with Down syndrome do experience grief. It may be different from the type of grief one experiences with the loss of a family member, friend, partner, or a child, but it is grief nonetheless. As a clinical family counselor who specializes in work with children who have neurodiversities, Samantha French explained on the LowDOWN Podcast, it’s about coming to terms that you’re not going to experience parenthood the way you expected.
“This is a situation where you had an expected life for yourself, and for your child, and then you suddenly learn that your future and your child’s future is going to look different than you thought,” French said. “It’s not that you stop having a life for yourself or your child, it’s just going to be a different life than you imagined.”
As the mother in this story discovered, anger and sadness are the first stages of this type of grief. As time goes by, parents of children with Down syndrome realize they have some control over what they can do.
“They discover resources and supports that help them through that process, give them a clearer idea of what to expect, and what they can do to help their child have the best life possible,” French noted. “But that takes time, and there will still be moments when they may slip back into sadness or even anger.”
Parents can’t help but feel anticipatory grief. They worry about what’s going to happen to their DS child in 20, 30, or even 50 years’ time once they’re gone or unable to take care of them any longer. But even when they’re prepared, they might feel that sadness and anger. This kind of grief is understandable for parents with a child who has Down syndrome, and they shouldn’t feel ashamed or be shamed for feeling that way.
99% of parents report loving their child with Down syndrome despite dealing with doubts initially
The change in perception that this mother experienced happens for many parents who have a child with Down syndrome. Initially, many parents experience emotional distress after the diagnosis. According to a 2022 study of mothers of children and adolescents with Down syndrome, 40% of mothers experience some sort of detachment, disappointment, or rejection of their child.
Nevertheless, as the child grows, parents’ attitudes change. According to a 2011 study, 99% of parents of children with Down syndrome report loving their children. Only 5% felt embarrassed, and 4% regretted having them. For 79%, having a child with Down syndrome contributed to a more positive outlook on life. What’s more, DS children tend to strengthen marriages: research shows that parents who have a child with Down syndrome are less likely to get divorced by 7.6% compared to other couples.
This shift in attitude is common. According to board-certified medical geneticist and co-author of Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Brian G. Skotko, shock and anger are normal first emotions after a Down syndrome diagnosis, but most parents get over them. “Believing in their child leads to incredible promise and expectations,” he explains.
“There has never been a better moment than now to be born with Down syndrome,” Dr. Skotko adds. “While the science hasn’t changed and the genetics haven’t changed, we as a society have changed and continue to change to accept, include, and value people with Down syndrome.”
Recently, the mother posted an update that was way more hopeful and heartwarming than her original post
“It’s so valuable for parents facing these diagnoses to hear that it’s not the end of the world,” commenters reacted
