The Beautiful Different

handThe joke was on me. After 2.5 weeks at home, 2.0 of them plagued with cabin fever and epic tantrums, The Kid was all dressed up and ready to go back to school on Monday. I kissed him and The Husband goodbye and watched them back out of the driveway, then I headed back inside to where Little Brother waited for his morning meal–which I would be giving him as we both sat on the couch, Season Five of Downton Abbey unspooling in front of us.

But it was not to be. Within minutes, I received what I vainly hoped was a prank text from TH informing me that school resumed tomorrow, not today. TK arrived home shortly after, his winter coat making a mockery of both our plans. I resigned to my fate: no upstairs/downstairs drama for me. As TK pitched another mind-blowing fit on the floor, I bitterly switched the DVR to Mickey Mouse Clubhouse. Meeska mooska, bitches.

All was not lost, though. We just joined the gym at the local church where TK attends preschool, and they have childcare. So it came to be, at midmorning on a day that could have been a wreck, I decided to cut my losses and hand my kids off to strangers so I could run–if not from my “problems”, then around a track at least. I returned to the nursery an hour later to reclaim my baggage, and TK’s teacher informed me that the director wanted to speak to me. Fear struck my heart–I felt like I was being called to the principal’s office, which for someone who in school was never actually called to the principal’s office is a terrifying prospect that doesn’t diminish over time. The older lady said hello, then mentioned TK’s speech delay. And that’s when I realized it.

People are starting to ask questions.

Back when I worked for a living, I was one of the question-askers. So I know what it means when someone says, “Is there anything else we need to know?” or “I’m just trying to figure out ways I can help him.” These questions, with their dual nature of good intention and curiosity, seem innocent enough to the asker but fall like a bullet on the heart of a mother, because this is what I hear:

What’s wrong with your kid?

I can barely handle a question with implications like this, my defenses raised and my ire piqued and the fact that I want to scream it from the rooftops, that he has been through hell and back and is sitting here smiling and that is what’s RIGHT, what is beautiful, but not everyone in the world has been walking this road with us or reads my blog (unacceptable) and so I give her TK’s Bio: The Cliffs Notes, and at the end I know she’s still batting words like autism and spectrum around her head because of how he’s not talking yet and he likes to sit in one particular spot on the carpet and gravitates toward the same toys and I know that I will be answering questions for a while. Including my own.

Heading to the car with TK and LB, I felt a tidal wave of emotion approaching–the fears that stretch out in perpetuity or at least until he starts talking–the sense that TK will be written off by people, placed in a box or assigned a label, and the unfairness of it made me angry and sad. And it was convicting, because I used to carry labels everywhere myself,  and dispense them freely. I climbed into my seat and told my boys I love them, and then I prayed.

The one word that kept poking through as I poured out my messy heart? Advocate. “You are his strongest advocate,” I heard, and it was like a joke because of all the things I was feeling, strong was definitely not one of them. And what a joke it would be, this situation in which we find ourselves: a nonverbal three-year-old with a surgical history and list of unknowns and follow-up MRIs and his little brother whose head is tilting in the opposite direction. This scenario requires more patience and more strength and more faith than I ever signed up for or claimed to have on my customs declaration when I arrived from Non-Parenthood. What a joke this would all be, what an impossible situation, if what I brought with me were all I have.

Grace is a necessity as much as a gift. It is everything. It is what tells me, whispers in my ear and my heart, that maybe I’ve come to the kingdom for such a time as this. That–imagine the thought–this is not a joke, or an accident, but that everything in my life has led me to the moment I’m in and prepared me for it. That grace will, thank you very much, take it from here, and there, and everywhere, because I am not required to produce a resumé but just to be who I am. And grace will work with that and fill in the gaps and take my hand and turn this from a dirge into a dance.

I asked my own question at his last check-up, finally mentioned a word I was afraid to speak, and his pediatrician gave me the answer that was not an answer, not a certainty–and yet it echoed and affirmed what my heart had been telling me. That TK doesn’t fit into a box, that a strict label simply can’t be applied right now, because so much has happened to him and so much is yet to be determined. He is what he is–and right now, as a three-year-old who doesn’t speak yet knows all his letters and numbers, arranges his blocks instead of stacking them, tries to figure out how his toys work and are put together instead of simply playing with him–he is what the world would call different.

And I can work with that. I, a girl who was no stranger to different herself, whose quirks drove her to a keyboard and to a city and to grace and made them all fit. And though I never checked the box marked “different” for me or mine when I was signing up for this life and parenthood gig, here we are anyway: pitching our tent in an area not on the itinerary, where GPS doesn’t work, where answers are in short supply. It’s all very inconvenient, for the world and for the girl with the labels, to operate without a handbook. But I also know that different is what keeps me returning to the well of grace more than I ever would have otherwise. And grace is what renames what we thought we knew: Them becomes Us, in spite of becomes because of, different becomes beautiful, and we go from the being in the unknown to being the Known.

A relative who does not frequently reveal his emotional hand confided that he loves TK even more after all he’s been through. And as my boy grabs my hand and presses it to his face without a word, I hear what isn’t spoken. I look down at him with the eyes grace gives and know that I have never felt more fully or seen anything more beautiful, and I tell him, “I love you too.”

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5 comments on “The Beautiful Different
  1. PJW says:

    “grace will work with that and fill in the gaps and take my hand and turn this from a dirge into a dance.” So lovely, Stephanie.

    I’m praying for you and your family.

  2. MEvelyn says:

    Unique, amazing, phenomenal, stupendous, and so many other amazing words are what I think of for TK and when I read your blog. You are his strongest advocate as we are your advocate by reading your blog, praying, and holding you and the family in our thoughts. Just seeing all the progress over the past year I think of Dr Seuss and “Oh the Places You Will Go”. It seems appropriate for TK, LB, and the rest of your family.

  3. Candace says:

    I love TK and his mama too! Such a sweet post! Thank you for writing this!

  4. The Dad says:

    One day your current fears will be swept in the ash can, and more mellow ones will arrive. To wit, “wonder how dad will take it if James beats him in golf today.”

  5. Amy Lu says:

    I have a little boy, who has grown into a bigger boy, who does not fit into a box. He is “different”, he is “quirky”, and that has been fun and it has been hard. And then at the age of 5 we did some testing, and I was handed the letters “VSL” and the word “gifted”. And I cried. For joy. Because someone was able to fit the puzzle pieces together in a way that was helpful for me. It led me to three books. One giant one all about VSLs, one parenting one, and one homeschooling one. The boy will be 13 this year, and life has not been, and is not now, easy. But he is my boy, and I love him to pieces. Most of my worries can be calmed with a ball of yarn, knitting needles, and a green tea latte from Starbucks (and a lot of prayer) so I think we’re doing pretty good. Maybe look into it. From the little bit you have shared here, I wouldn’t rule it out? Feel free to email if you want to chat more about it!

    By His Grace, Amy

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