Jonah, with mom, Amy
I usually write about kids for Jacob’s Fund’s blog. Jacob's Funds kids are courageous, smart, funny, beautiful, and irresistible. They’re working hard to overcome the difficulties their impairments have brought into their lives.
This time, though, I want to talk about moms, because I’ve thought a lot about them since our trips over the last two weeks to Hilltop Equestrian Center and McKenna Farms.
Kelli, Tara, Shae, Chanta, Linda, Amy, Melissa, Dana, Laurie, Jennifer, Melanie, Sarah, Mary, and others I’ve failed to name: you know who you are.
These moms belong to a special sorority, one they didn’t ask to join. Moms of kids with special needs do all the things every mom does: laundry, cooking, cleaning, paying bills, driving kids to appointments and practices, playing, being silly, laughing and crying.
They also change diapers for children who are well past the age and size diapers are designed for. They puree three meals a day plus snacks for little ones who can’t swallow. They, often through tears of frustration on both sides, work to communicate with their nonverbal child. And that just grazes the surface of the list of tasks they face every day.
Kyle, with mom, Kelli
In many ways, it’s a hard life. But every one of the moms of kids with special needs I’ve known has told me it’s all worth it.
As a dear little mom once said to me, “Mom, he’s not a burden.”
These moms share some jobs that they do find daunting, time-consuming, frustrating and never ending: finding services for their impaired child and managing the enormous paper workload that is part and parcel of their lives.
There is no one-stop shop for help for children with special needs. Instead, there’s a writhing, constantly changing Medusa’s head of government agencies, foundations, and non-profits to push through to get to someone who can help your child with one specific aspect of her impairment. Then it’s on to another entity that can, within the scope of their purpose, provide another bit of support.
And the list of specialized physicians and clinicians their children need to see reads like the staff of a major hospital. For many of the moms of kids Jacob’s Fund supports, full-time employment isn’t an option; the number of doctors' offices and clinics their child is required to visit requires too much of mom’s time.
If the parents are fortunate enough to have health insurance, there’s always a stack of insurance claims to review, denials of claims to appeal, refiling, follow up calling, and calling again. While most of us file our medical records and the associated expenses in a single file folder each year, files for these children take up multiple drawers in a filing cabinet.
So this is our salute to moms of special needs children. I’m not forgetting dads; it’s just that we’re very near Mothers’ Day.
Candace and mom, Dana
If you know one of these moms, wish her a happy Mothers’ Day. Like you, she fell in love with the tiny bundle that was placed in her arms in the maternity ward, and falls deeper in love every day. Just like you.
But don’t tell her she’s a “Special” mom, somehow chosen to care for a child with special needs because she’s got what it takes to care for a child like that. She’s not, and she knows it. She’s a woman. She has talent and ambition. She’s a wife who likes romance and time alone with her husband. She’s a teacher, an athlete, a former beauty contestant, a policy wonk, a writer, or perhaps an artist. She’s a person.
Relegating her to the category of long-suffering ministering angel only keeps her – and you – at arm’s length.
She’s like you, doing whatever it takes to make sure all her children get to live the very best lives they possibly can.
Way to go, ladies. Happy Mothers’ Day.