‘Hopefully she’ll gain some independence. BUT, but if she doesn’t, she’ll just live with us.’: Parents of daughter with special needs realize they ‘don’t talk about her future’ because it makes it ‘more real’

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“We don’t talk about her future.

Not much anyways.

It’s kind of odd really, when I put it in writing.

There is this unspoken thing we do. Where I know we know. Like– I clearly know. My husband knows. Anyone who has read up on my child’s diagnosis and the long-term prognosis—they know.

There is the outcome we hope for. The one we pray for.

And then there is the possible one we are unmistakably aware of—but we don’t talk about it— not out loud anyways.

Until we did.

The other day, in a rare moment where no children were present and there was time to chat about more than just the schedules, and the bills, and the dinner plans for tonight—my husband began to talk about the future. He began to talk about what we want our future to look like as our kids grow up. And then he began to talk about the reality that our future and her future will be closely intertwined—the reality that we may never grow to be empty nesters.

Sabrina Winter Photography

‘Hopefully she can continue to do well, and she’ll gain some independence to be able to do her own thing. BUT, but if she doesn’t, she’ll just live with us—that will be okay.’

The words nonchalantly slipped from his lips, but they hit me like a ton of bricks.

I’ve never heard him say that. In fact, I’m not sure I’ve ever said it out loud.

Because as parents to a child who is medically fragile, one with special medical needs, one who’s diagnosis presents a whole lot of unknown—we don’t talk about her future.

Courtesy Sarah Lango

We don’t really talk about what sports she’ll play—or what she wants to ‘be’ when she grows up.

We don’t talk about rather or not she’ll ever get to attend a sleepover—or go to play dates unattended by mom.

We don’t really talk about who she will become in middle school—or when she’ll get her first boyfriend.

We don’t talk about the day she’ll go to her first dance, or get a driver’s license, or go to college.

Or about her getting married, or becoming a mom, or what kind of home she wants to own.

Courtesy Sarah Lango

We don’t really talk about it. But then we did.

We talked about this possible reality where we fit into a category of parents who never grow out of 24/7 parenting.

We talked about retirement, with an adult child living with us—needing us still.

Courtesy Sarah Lango

And that felt odd too—as if saying it out loud makes it more real.

As if voicing that potential outcome somehow takes away from the hopeful one.

So, no, we don’t talk about her future much.

Because maybe it feels hard—painful.

Maybe we are just so uncertain.

Or maybe because now, more than ever– we recognize that today, this moment is all we really have.

So, if we talk about her future, give us grace.

And if we don’t, give us grace there too.

Today, is all we are promised.”

Courtesy Sarah Lango

This story was submitted to Love What Matters by Sarah Lango, 30, of Kansas City, Missouri.  Visit here website here. Follow her on Instagram hereDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

Read more from Sarah here: 

‘I excused the thought something was actually wrong. I blamed my husband’s ignorance. What do dad’s know anyway? I just held her earlier.’

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