I see it every week…the contained grief of a special needs mom as they see the missed milestones or hear the test results. I talk weekly to these mamas at my work. And yesterday it hit me clearly that they also need to grieve the parent they would have imagined themselves to be. So I write this and say yes mama, it’s okay to think about the kind of parent you may have been. As a special needs mom, there are times that I am tired, scared, lonely, jealous and…challenged beyond my limits. There are times that I think about my children being neuro-typical and able-bodied, and for some reason I feel guilty doing this. I have decided that there is nothing wrong with grieving what could have been, because perhaps I would have been the PERFECT MOM! Perhaps you would have been the PERFECT MOM!
Perhaps you would have taught your child to be kind and sit with the kid that acts or looks different. Instead you now stand behind your son and interpret his garbled speech and mannerisms and realize your child is the “different one”; the “one” other moms teach their children to be kind to.
Perhaps you’d be the mom who watches their child cross the stage with a beaming grin to receive the award for “TOP SPELLER” and you would clap politely, while inside you were bursting with pride. Instead you watch the endless parade of honor roll and top academic awards, and your heart is crumbling in your chest watching your daughter’s crestfallen face. You don’t expect your child to always get a medal or prize, but it’d be nice if just for once there was an award for effort, or for putting your shoes on without help, or stringing together four words into a coherent sentence….yes, you’d love to see your child receive an award, instead of hiding her report cards marked “needs improvement” and “F”, because while she can’t understand the work, she can definitely understand “failure”.
Maybe you dreamed about how you’d take your child to play groups and sit with other moms and silently pretend you weren’t comparing. And you imagined your child climbing the highest and how he was athletic like his daddy. But instead, you are sitting alone in the sandbox with your son, because a wheelchair can’t roll through rubber mulch and he can’t climb the slide, or run to the swings, or race across the monkey bars. And you see another mother smile with sorrow and you feel the anger roll around in your chest because pity hurts. Pity means he’s a victim and it will handicap him more than his diagnosis ever would.
Maybe you’d be the mom that cringed when their child skinned their knee and hated the sight of blood. Hospitals were where you had your baby and visited other people who had surgical procedures. Instead you are camping out in hospital rooms, living on caffeine, battling insurance companies, and learning to flush the tubes, vent the ports, and insert the catheters. You have become an expert on your child’s diagnosis and it’s all a little heady. Your social circle has become an online parent support group, because not many can relate to the parent you have become.
Perhaps you would have been the mom who whispers sharply, “don’t stare at him”, or “it’s not nice to point” as you quickly usher your child to another section of the store. Instead you are the mom who distracts your son from the stares and the whispers and lays in bed and wipes your little boy’s tears, as he asks why God made him different.
I bet you would have been the mom who didn’t cringe when the school called, you couldn’t outline the difference between an IEP and a 504, and you would look forward to Parent-Teacher Conferences. You wouldn’t worry about cooking a food that touched other foods and your child wouldn’t have a preference for jeans with elastic waistbands in 5th grade.
But then if you were that mom, maybe it’s not better. Maybe its different. And by being the mom you are now, you have a different depth. Perhaps you see the triumph in the struggle and realize you wouldn’t have seen the beauty in the small things. You wouldn’t have appreciated the first words, first steps and the firsts in quite the same way. Perhaps you would have expected the victories, instead of seeing the cost of the triumphs. You would never have known how to pour your own strength into your child. To will them to get up and try one more time. And perhaps the mom you are, understands that if we succeed without failure first, it isn’t that great of a success. But if we fail, we fall down, and it’s scary and impossible, but we get up and do it again and again….oh mama, how much bigger is that. And mama, maybe you can now see that your success as a mother is measured in how well you get up after being knocked down. How deep you dig into the well of determination when you receive the tough news or negative outcomes. This strength is something thrust upon you by necessity and it’s made you into something fierce. Perhaps this mom you have become, realizes that bumps, detours, scrapes and scars are the very things that develop character. Perhaps you are the PERFECT MOM, because when you have a child with impairments, the lens you use to judge success changes. You start to measure performance and milestones by the yardstick of determination and courage. And if this is the case, you are exactly the mother your child needs, in fact, you’re perfect.
