Posted by Hilary Parker on May 23, 2011
Caring for a child with a birth defect can be heartbreaking and nerve-wracking. You’re shocked and devastated over the news, launched into a world of scientific and medical terminology that’s impossible to understand and worried about how this development will affect your future. Add the regularly challenging sleepless nights of caring for a newborn and BAM! you’ve got a recipe for depression.
Of course, after the initial terror wears off, it can also be a period of great personal growth — even a spiritual time as you learn to recognize and embrace the human spirit in your child regardless of their heart defect, developmental delay, number of chromosomes or where they sit on the spectrum.
But no matter where you are on this roller coaster track, the ride is exhausting. You’re going to need help, and lots of it.
Friends and family will be a crucial part of your support network. But if, like most of us, you don’t live near your extended family, or if those who are nearby already are caring for the elderly in your family, you’ll find they’re not capable of giving much help. And friends will be a great asset, too, especially helping you to remember the life that exists outside your care-giving duties — one you ought to visit regularly. But neither friends nor family will be able to relate to what you’re going through unless they, too, have dealt with a disabled child.
That’s where support groups come in handy. Part book club and part AA, these groups function as a place where your “new normal” is well-understood and where empathy, not sympathy, reigns. Many of them exist on spiritual or religious platforms if that is also something you would like. But mostly, these groups are full of great listeners who’ve really been there and can help mentor each other through the process. The moms (and dads!) in these groups may have helpful tricks you can use to calm your autistic son, or resources you can use to confidently choose a treatment path for your daughter’s clubfoot.
Of course, there’s not a group on every corner. But that’s where the power of the Internet can make all the difference to you and your family. Chat rooms, condition association webpages and e-support groups offer their knowledge, concern and caring 24/7/365.
And that’s great news, because you’re going to need it. And then you’re going to want to offer your expertise to the next round of new moms who just got on their own roller coaster ride.