A recent TV ad says it all.
It follows a mom through her day with a little boy who appears to have some kind of developmental delay. The voice-over tells us he was in the neonatal intensive care unit for over 100 days. Now he looks somewhere between 3 and 4 years old. She makes him a peanut butter sandwich and laughs when he spills the milk. She plays with him and keeps a watchful eye while she goes about daily chores. She washes his hair as he kicks and squirms. She struggles to brush his teeth. Then there’s story time and a kiss good night. All the while, she is the epitome of patience and all smiles.
Then the ad gets real. Having tucked her little boy in, having said she wouldn’t trade him for any other kid, she has a moment alone on the front porch. In that moment we see “the look.”
Anyone who has been there knows what it means. To see it cross another’s face is to feel it in the gut. It’s the shadow that passes through in a moment of exhaustion. It’s the small piece inside that does wish, if only for a moment, that she did have another kid; one who didn’t need her every single minute of every single day.
Then she does what loving parents do: She takes a breath, remembers the blessings of being a mom to this special child, and goes in to get ready for another day and another round of constant care.
Moms, and dads with kids who are disabled or chronically ill know that look and the feelings that create it. They also know the moment that comes next: the moment of renewed commitment that is born of love and hope and determination. Raising a disabled or chronically ill child is not for sissies. If parents weren’t strong before this special child became theirs, they’ve developed strength they never knew they had in them.
Mother’s Day is almost here. Let’s all take a moment to appreciate the mothers who do everything every other mom does plus a whole lot more.
They are the moms for whom the first months of sleeplessness extend into years. They are the moms who become experts on their child’s diagnosis and therapies and education plans. They have learned to manage endless appointments with medical specialists and endless meetings with educational experts. They have learned an awesome vocabulary of medical terminology, education jargon and insurance codes.
Complicated schedules and routines and star charts have become second nature. Those who have kids with special diets know how to spot dangerous ingredients in a cupcake from a hundred yards away. Those with behaviorally challenging kids can handle a tantrum while folding laundry and planning dinner. Many even find the energy to organize support groups, get involved with agencies that offer activities for their kids, and advocate for other families as well as their own.
Contrary to conventional wisdom, most of their marriages are strong. Sure, the demands on these couples are many and constant. But most do better than just cope. They succeed as partners and as parents and develop positive feelings and values about raising a child who is challenged and challenging. The birth or adoption of a child with special needs has taken their lives in unexpected directions that aren’t always pleasant but are nonetheless meaningful and important. When asked, most will say that parenting their child has made them better people.
That strength and love and commitment extends to their nondisabled kids as well. If they thought about it, they could take enormous pride in their success in raising compassionate, competent kids whose experience with their brother or sister with a difference has made them sensitive to the needs of others. Most moms don’t think about it. They are just doing what feels right and good for their families.
For mothers of children with special needs, Mother’s Day rarely means a dinner out or diamonds. A qualified babysitter is hard to find. Money is more likely to go to bills than jewelry. Often the child who made her a mother can’t understand a holiday, can’t carry a tray to give her breakfast in bed and won’t be bringing her a bunch of violets or a card made all by himself. These moms celebrate their day with their different child in a different way.
And celebrate they do. They find joy in the knowledge that they are nurturing a child’s spirit as well as her health. They take satisfaction in knowing that each accomplishment, however small it may look to others, is a major victory. Each of her child’s achievements is at least partly her own. She knows the value of her efforts and the importance of keeping a positive attitude and counting the blessings of every day.
Still, it never hurts to hear all this acknowledged. Loving words of appreciation from a partner, spouse, friend or extended family members do mean a lot. If you know such a mom, reach out this Mother’s Day and let her know that you see her for the amazing person she is. A phone call or visit or card may seem like a small thing but for a mom in the special needs trenches, it can really make her day. The support of others added to her own commitment is what makes it possible for her to take that breath and get ready for another day.