“So What Exactly Happened to Her Anyway?”: 5 Questions to Never Ask a Special Needs Parent

We’ve all been there: delightfully enjoying the normalcy of a typical moment with our special needs child when a well-meaning stranger, or even friend, interjects her curiosity.

  1. “So what exactly happened to her anyway? Did they ever find out? Be honest! What meds did you take in early pregnancy?” Just because something is wrong with my child’s heart doesn’t mean something happened to her. Definitely doesn’t mean it’s my fault. And often, like in our case, there’s no known cause. For the record, I declined the meds offered to me early pregnancy in willing, full fledged, sacrificial election of spending my mornings hunched over our guest bath toilet bowl…all for the sake of Annie.

2. “So how much has she cost you now? Wouldn’t it have been cheaper at another hospital?” Multiple millions, yes. Even a $43,000 med flight that our insurance still isn’t sure they want to cover. And who cares about Christmas spending now: we have January to worry about, when our insurance deductible starts over for a new year. But thankfully our insurance has covered most of those multiple millions. Instead of being afraid of the financial burden, we’ve asked God to provide. He has! To date, we’ve been able to pay every single bill in full. But let me ask you a question, “How much is your child’s life worth to you?” That’s what I thought…

3. “Do you regret choosing life?” This needs no answer.

4. “Is she developing ok? I haven’t seen her (insert activity here: talk, crawl, walk, etc.) Just because you haven’t seen it doesn’t mean she doesn’t do it. More importantly, I’d rather discuss her development with a trained, caring professional instead of a ‘concerned’ onlooker.

5. “How long do they think she’ll live?” Longer than you if you keep asking questions… Kidding. But ummm no one knows if any one of us has tomorrow so that is an unfair question! She will live the perfect amount of days that a loving, sovereign God has planned for her life. Same as me and you.

But honestly, I know so many questions come when faced with someone who’s different, whether she looks like it or not. Most special needs parents are more than willing to talk about our child because for us, it’s a way to celebrate that child’s life! So questions can be welcome; conversations bring awareness.

But maybe not so much while I’m trying to catch up with her as she sprints out the door, dives across monkey bars, or climbs over your kids up the slide.

All said in love. If you have a question about Annie, send it my way!

Enjoy Today

Late into the night I wrestled a chubby, sleep-fighting wriggler. She stroked my face and giggled while she listed the names of her favorites: “Ah, Momma! Ah, Dadda! Ah, Sis-der! Ah, Mimi! Ah, Zha-Zha! Ah, Pa! Ah, Dake! Ah, Dake (sorry, Josh)! Ah, Essie!”

9:30. 10:30. 11:30. Still she giggled and named. Giggled and named. Giggled and named. Midnight. She finally giggled and slept.

I think this is what I always wanted: snuggling, whispering, hugging, loving, reaching into the depths to give of myself when I feel there’s nothing possibly left to give. I’m grieving and grateful all at once in a messy moment, joyous that I got something I was told I’d never have; heartbroken that another piece of our time together is already gone.

I think this is what it means to not miss your one chance at this life. To know the value of seconds. To yearn for millions more. To rest quietly in the comfort that they are all sovereignly, perfectly numbered.

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6:42 felt much too early when a lined morning hand rested gently on my cheek and warm morning breath nuzzled my nose to whisper, “I’m hungry for breakfast, Momma. Let’s make oatmeal before Annie wakes up!”

Yes, Love. Let’s get up– full, grinning faces to the sunshine that floods our hearts with the sacred beauty of more moments to share!

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Life is a gift. Time is a treasured commodity. Grab hold of your moments and treasure your days! Let’s not miss it.

I think I’m learning what it means to enjoy today.