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Special Needs Parenting: When Your Support System Fails

Jamie Sumner
Special needs mom, author and blogger
09/24/18  9:23 AM PST
support system

One late summer night, when my son, Charlie, was four months old and only a few weeks out of the NICU, my husband came crawling into the kitchen on his hands and knees. It was a sign of the state of things that I hardly looked up from the couch where I was negotiating with Charlie on the last few ounce of his bottle.

The scene went something like this:

Husband enters stage left in full hockey gear, groaning. Only his head is visible where he lays on the kitchen floor.

Wife, center stage, is backlit by the streetlight and rocking her newborn son.

Wife: “Please, Charlie. Two more ounces then you’re done.”

Audience senses a sign of struggle before child knocks the bottle from her hand.

Wife: “Two more ounces and then we don’t have to do this again for another two hours and twenty-seven minutes. Please. Please.”

Silence.

Wife sets the bottle down. It is still half full.

Husband, from the kitchen: “I think I need to go to the emergency room.”

Wife pinches the bridge of her nose and picks up the phone to call her mother.

As it turned out, my husband had ruptured a disc in his back and would require surgery and six weeks of rehab, which included a ban on lifting anything over ten pounds. Charlie had just reached the ten-pound mark. This is a period in my life I do not remember with any clarity. I was getting little sleep. Charlie, who had a fresh tracheotomy, was refusing to eat. He slept with a pulse-oximeter wrapped around his foot that went off periodically through the night if the wind so much as shifted. We were a household in crisis.

support system

So, we did what any desperate family would do and circled the wagons, packed up everything, and moved in with my mother. It was a temporary but tense solution that tested even the best of marriages and mother-daughter dynamics. But we survived—partly because of the g-tube Charlie got a month into our stay. It gave us a reprieve from the bottle and time for him to grow into himself. And my husband looked dapper with his cane.

Just a few weeks ago and six years later, almost to the day, my husband came home again in full hockey gear, dragging his leg behind him. In the last ten seconds of the game, he took a bad hit to the knee. An MRI would later reveal three torn ligaments, and yes, the need for another surgery.

Here’s the thing: I knew this go around wouldn’t be so terrible. I am not in the emotionally fragile place I was in during Charlie’s infancy. We are not walking on a wire between hospital stays, between healthy and sick. The trach is gone. The g-tube is gone. Charlie has just started kindergarten.

support system

But just because I can rationalize the impact of this kind of crisis doesn’t mean I can lasso my feelings around it. Something happened this time, when I kissed my husband before they wheeled him off to surgery. I fell straight back into the well of fear that had felt so deep and lonesome six years ago. Despite the help we had then and will have now, I am terrified of taking sole responsibility for the family. I am panicked at the thought of being stretched so thin with medication regimens and trips to physical therapy not just for Charlie, but also for his dad now, that I’ll tear into a million pieces, a shredded tissue of my former self.

This will not happen. I know that. I am stronger than I give myself credit for, as are my kids and my husband. But it doesn’t chase away the anxiety, not completely. As parents to kids with special needs, we all fear the moment when we might not be able to hold up under it all. We fear our own incapacitation or that of our support system. This is normal. This is the thing that gets me through: if I have weathered it before, I will weather it again. This crisis is not forever. It is a moment. “This too shall pass” sounds cliché, but clichés can still be true. And right now, I am in the business of summoning all the kindest truths.

special needs parents

Jamie Sumner is a special needs mom, author and blogger.

Discover her new book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood.

Read her blog, The Mom Gene.

Follow her on Facebook.