This is how a typical day goes with my son, Max:
First, I dress him; he’s 9 now and getting big, and lifting his body to put on pants isn’t easy on my back (he has balance issues and can’t step into them). After I help him eat, I give him a teaspoon-and-a-half of anti-seizure medication; then the bus picks him up and he heads to school. Every afternoon, when he’s back home, he gets a therapy session—either speech, occupational therapy (to help his hands move better) or music therapy (to encourage vocalization). Every day, I usually call or email at least one of his therapists, or his teacher or a doc, to ask questions, troubleshoot or make appointments. Once I’m home from the office, we go over homework as many times as is necessary for Max to absorb it. After we read a book or two, I hold a cup of water to his lips with a towel beneath so it doesn’t drip out onto the bed. Then I kiss and kiss him good night.
I love my son. I worship my son. I admire him for all that he’s accomplished and all that he’s overcome; he has cerebral palsy. I give myself props, too: Raising him is a whole lot of work. And so I read the post adapted from Jessica Valenti’s new book Why Have Kids?, in which she posits that motherhood is not the most important or toughest job, with a you-haven’t-walked-in-my-shoes-sister ‘tude.
Valenti, a savvy feminist and excellent writer I’ve long respected, poses the question of whether moms believe their jobs are harder than those of a pediatric oncologist, firefighter or factory worker. I say, there’s no comparing; all of these jobs are challenging, all have major value. But I do think raising Max is the most important job I’ve ever had, and also the hardest one. I’d venture to say that most parents of kids with special needs feel the same. Yet by investing so much effort in our kids, we’re doing both them and society major good.
When you have a kid with disabilities, parenting is typically more demanding than it is for other moms: physically, emotionally, financially, every which way. Obviously, the challenges vary. Max had a stroke at birth that resulted in brain damage and cerebral palsy. The disorder messes up how your muscles work and as a result he has a lot of trouble articulating words and using his hands. Even drinking a glass of water is a challenge because his tongue doesn’t move like tongues are supposed to move, and his fingers have trouble grasping cups. Therapies have helped, though insurance doesn’t cover most of them.
Max is an exceptionally sunny, charming, adorable kid, which trumps the toil and trouble. I’m lucky, too, that I have a saint of a nanny who’s there for the kids while I work; that we generally have enough money to pay for Max’s therapies; and that over the years I have assembled an amazing group of specialists and therapists, aka Team Max. Raising Max and his little sis have not prevented me from having a successful career as a magazine editor. The pride and joy I experience as Max’s mom are the pride and joy any mom of any kid feels.
But, yes, raising him is labor intensive. There is a whole other kind of “work” involved that has nothing to do with hands-on care and everything to do with helping him find his way in this world,and helping others accept him. At playgrounds, in the mall, wherever we go, children stare. Adults do, too. They notice Max is different. They’re not sure what’s “up” with him As Max’s mom, I’m constantly finding ways to bridge the gap.
“He drools because his mouth likes to stay open,” I patiently explain to young children who ask. “He loves the movie Cars 2—ask him about it!” I’ll tell older kids, trying to get a conversation going. I want them to understand that even if Max looks and act differently, in many ways he is still just a kid, just like them. This is a never-ending uphill battle and sometimes, the fact that he is so alienated gets to me. The other day, two “typical” boys Max’s age walking home from school with their backpacks crossed the street in front of my car cracking up over something, and it made my heart hurt.
Even though my spirit runs low at times, I’m fueled by love. The effort I pour into raising Max is all about giving him a good life—and getting him to be the best person he can be. In doing this, I’m also making a valuable contribution to society. Over the years, people have told me that the only thing that really matters about bringing up Max is that he’s happy. Well, yes, that does matter but he has plenty of potential to contribute to this world. I’m here to maximize that, whether it means spending hours with him doing homework or programming the app on his iPad that speaks words for him. My son can make a difference in society; he just needs more time, effort and help than other kids in getting there, and that falls on my shoulders.
Years ago, kids and adults with special needs were shipped off to institutions; society did not consider them valuable human beings. That perception still exists. But now, parents like me can make a difference in giving our kids the assistance they need to grow up to be productive adults. My motherhood work isn’t just personal—it’s for the public good, just like that of a pediatric oncologist or firefighter.
Jessica Valenti says that too many women think the most important thing we can do in this world is raise children. Here’s a basic truth: Nobody else can do exactly what I can for my son. He is more dependent on me than other kids are on their moms. He needs me to be his caretaker, nurse, teacher, cheerleader and publicist. And so, yes, the most important thing I do in my life is bringing him up. This is not depressing to me. This is my reality. This is the motherhood I got. This is the kid I got who makes it all worthwhile.
Read more from Ellen at Love That Max
More to read from 1000 Perplexing Things About Parenthood: