autism · cancer · Down syndrome · parenting · special needs parenting

Always Waiting For the Other Shoe To Drop

We are on a bit of a roll over here.

We have a steady respite person. This week I got an application for a self-determination employee, someone who will take Ben out and work on community living skills with him, and Ben’s caseworker has things lined up for ABA therapy to start soon.

Not only that, but his health seems to be fairly stable. we have the steady stream of appointments lined up to maintain stasis, but his sinuses are relatively clear this year, and after several months of a MRSA infection, that is clear too. We’re barreling toward 3 years since his last hospitalization, a personal best.

His new psychiatrist is using a combination of medications and supplements which seems to be effective, meaning no violent outbursts in the last two weeks (a big deal here). By every measure, we are making progress, loose ends that I have pursued for years are coming together. We are moving past many of the dead ends and setbacks we have slammed into through again and again.

Only an itty bitty piece of me indulges in celebration. A morsel that is quarantined away, so as not to grow or infect any other part of me. Carefully encapsulated, observed and disciplined, so as not to risk any loss of control. I’m reluctant to even mention any measure of success.

Instead, I steep myself in caution. I mentally list all the things that might go awry, cataloging them repeatedly in chronological, alphabetical, and decreasing and increasing orders of severity. With an epilogue full of asterisks in case of some unforeseen and unforeseeable event.

Because we live in the land of the unforeseeable.

In complex parenting, a hospital discharge can mean a return with a worse diagnosis later.

In complex parenting, medications come with reactions and side effects that strike at any moment.

In complex parenting, a routine appointment too often turns dreadful.

In complex parenting, we brace for the worst-case scenario, not out of fear, but out of habit.

In complex parenting, we don’t rest on success or achievement, because there’s always more to accomplish. Because the bottom can fall out at any time.

We live precariously balanced. We unravel knots while tying up others. We tiptoe around, not on eggshells but on shards of blown glass, knowing that any misstep leads not only to breakage but to harm. We guard our hearts against joy and celebration, no matter how hard-earned, because we’re braced for a crash.

It’s a superstitious, ritualistic juju dance of not jinxing ourselves and warding off the bad by keeping our fingers crossed and a loose grip on the good.

BrenĂ© Brown called it Foreboding Joy, and I reaffirm my departure from her on this. If you get excited when I share my news, I won’t join you. When you tell me you’re praying for it, I won’t bother telling you I don’t exactly trust God to keep us from the fire, rescue us from the fire, or keep the fire from consuming us anymore because experience hasn’t borne that out.

I’m keeping my armor fastened, with a crest of foreboding joy on my breast, and charging forward as always. I don’t know if it’s smart, necessary, or maybe even slowing me down, but without it, I stand naked and terrified.



For the People who Wish Moms were More Real

Sometimes I see posts on social media about how we shouldn’t just show our good side off, that we need to be real. So whoever it was that shared those posts, this is for you. 

  • I’ve been in my pj’s since 6:17pm. 
  • I fed my kids leftovers for dinner. 
  • My husband called while working out of town and said he had to get off the phone because he was pulling into the restaurant where he was going to have supper. 
  • I hung up quickly to avoid saying something trite. 
  • I said it anyway, and double checked that the phone had disconnected first. 
  • I should be getting Ben’s meds ready right now but I felt like farting around instead. 
  • I yelled at Ben for melting down while I fixed his drawer because I was “too loud”, even though earlier today my ears felt funny and a noise was driving me batty and I empathized with his auditory sensitivity and promised myself I’d be more compassionate about it. 
  • The boys and I have all been staring at electronics for far longer than is good for any of us. 
  • I feel guilty about most of the above. 
  • Now there’s a puppy on my lap, so I’m not moving any time soon. 
  • I think I’m the only mom in the world who loves daylight savings time, and it’s because Ben now gets up at 5-something instead of 4-something. 
  • A day like today happens more often than I care to admit. 
  • I’m admitting it anyway and hoping that the people who say they want real life aren’t just saying it and don’t throw me too much shade.