Please Don’t Poke the Bear

July 23, 2017 adopting as first time parents, BAHA, Craniofacial, declining a referral, Family Stories, hearing loss, hemifacial microsomia, July 2017 Feature - Craniofacial, medical needs checklist, microtia, referral, speech therapy, waiting for referral 1 Comments

I call my daughter baby bear. For my first Mother’s Day, my husband presented us with matching mama bear/baby bear bracelets. SJ saw them and exclaimed: “SJ. Mama. Same!”

Though I’ve never considered myself a shrinking violet by any means, this process, this crazy-beautiful, seemingly impossible way of becoming parents, has seemed to draw out my fiercest instincts, starting with the relentless pursuit of our baby girl’s file. So, while July is craniofacial month, our story is as much about the blessed other side of “saying no” to a referral as it is about my daughter’s special needs (unilateral microtia, hemifacial microsomia, and hearing loss).

When I was a self-indulgent, petulant teen, God shook up my suburban Canadian, only child existence and broke my heart for the orphan. That’s when things stopped being comfortable — and thank goodness. I ended up going into teaching while utilizing this specific skill set to serve in various capacities with several organizations in China (New Day Foster Home; True Children’s Home, etc). I worked with a lot of special little ones who are forever etched in my heart.

Somewhere over the past decade, I blinked and my “small” school Bake Sale raised over $40,000 for child surgeries. Along the way, I met my beloved Taiwanese-born, bilingual husband; he committed to me, and to adoption as our “Plan A.” Despite its trademark willingness to accept immigrants, our country and province have fairly challenging adoption laws. Most children that come home from China have been LID-track referrals here. Our Medical Conditions Checklist was quite broad, and we were prepared to parent a child with multiple needs. Suffice it to say that every single closed door, at just the right time, blew wide open for us.

Never occurred before?
Not supposed to happen?
Can’t be done?

We trusted our unknowns to a known God.

For us, the absolute hardest part of the process was waiting for the file transfer. SJ’s photo first appeared in a message from a supermama advocate: “We no longer have this file, and assume she’s long been placed, but are you open to this combination of special needs?” Actually, I was staring at my daughter’s face.

Through another series of unbelievable circumstances, this child who we literally lost-and-found turned up on the shared list within days. Literally, and I mean precisely as our agency reached out to CCCWA to have her moved to their private list, another agency snagged her file. I’m also not kidding when I say I could not get out of bed that weekend.

Once I pulled myself together, we decided we were going to petition to have her transferred. I guess this was the first of my, ahem, “mama bear” moments. Thanks to the wonder that is this beautiful community of adoptive parents, we tracked down the placing agency and put ours in contact with them. We waited three excruciating months for our lives to be changed with a one line email: “Please have your agency contact us to start the transfer process.” This was faith fulfilled.

During our pre-adoptive training, we were led through an exercise: write down the qualities your “fantasy” child possesses. Next came the instructions to rip up the paper: e.g., learn to adjust your expectations. That’s the funny thing about things on paper. SJ’s file, the one passed up by families at 5-6 agencies prior, said: “Deaf of both ears.” An ABR (Auditory Brainstem Response) test was included, but it didn’t take our specialists long to point out it was administered when she had a severe ear infection in her non-microtia ear, and the results were questionable at best.

Doctors helped us craft carefully worded questions for an update. The answers, combined with video, continued to indicate her file was inaccurate. Still, we threw ourselves into learning ASL (my sweet father even enrolled in night school; our favourite Youtube Channel is still Patty Shukla’s Baby Signing Songs) reached out to the Deaf community, and installed smoke detectors that operated through light as opposed to sound. We had to hope for the best and prepare for the worst, but no matter what? She was ours.

On Family Day, it was immediately apparent that our daughter was hearing. Once home and settled into a routine, it also became clear how much she’d been cherished. It wasn’t so many years ago that I stood on the other side, praying over little girls and boys and whispering to them of their worth. Whether it was our daughter’s foster mama, nanny, or teacher, someone modeled empathy and allowed our girl’s little light to shine.

SJ is an absolute lionheart: smart, observant, compassionate, silly, funny, determined, joyful, quirky, and cheeky. She is far beyond simply the embodiment of that “dream” child I’d recorded the characteristics of earlier, or anything contained in her official adoption file. You see, what a file cannot convey is the way a child shrieks with laughter when she wears her baba’s shoes, or the way she pats your back when you cough, or the way her perfect crooked smile will bless you what seems like a million times a day.

We are still stymied that SJ’s file bounced around for almost two years. But, what – and who – may be right for one family… may not be for another. Serendipitously, we ended up connecting with several mamas who’d previously reviewed her file. Mostly, they said there was no “real” reason to say no; she just did not feel like “theirs”. Another admitted they were not entirely comfortable with such a visible special need. SJ’s microtia is extremely “low set.”

Right now? At three and a half, my daughter carries a mirror in her purse. She totters around in high heels, painstakingly applies lip gloss… to her chin, mostly, and never leaves home without a bow. She’s constantly singing. She needs one of those shirts that reads: “All my pants are sassy.” She believes she is beautiful, fearfully and wonderfully made. I tell her daily that it’s actually her kind heart that makes her glow.

Interestingly, SJ definitely sees herself as having two ears. I noticed this early on when she carefully adjusted her toy stethoscope for an uneven fit on her sweet little face. We navigate hurdles here, absolutely. Any pair of sunglasses that stay up with her “little ear?” They come home with us. We have to buy infant-sized hats as her head shape is unusual. We sort of kick ourselves for giving her an English name with an “S”, (two actually!) as it’s a difficult sound for her.

Sometimes, people stare. Point, even. I’m working on responding with more grace. Mama bear, like I said. Despite my best intentions, some days my claws are sharper than others, though I am trying to lead by example. I want SJ to thrive in the wild.

But mostly, people tell me that my daughter radiates joy. That’s what they first notice.

We’ll need to make our first surgical decisions in the next year or so. I look at SJ and honestly think: “Fix what? That face is perfect!” It’s so very challenging to have to make these choices before our daughter can truly weigh in herself. We yearn for wisdom here. On a day-to-day basis, life is as “normal” as can be with a cat-squeezing, ice cream-gobbling, Peppa Pig-watching, bubble-bathing, pretend kitchen-playing, dress-up obsessing, tri-lingual (English; Mandarin; ASL), Abba-loving, Elsa fangirl. She’s pretty much picked out her future husband (a Korean adoptee with gorgeous eyelashes).

We do speech therapy (both private and public) to work on articulation (I understand about 90% of her English, while many don’t, and my husband comprehends maybe 75% of her Chinese), hope to try out a BAHA (Bone-Anchored Hearing Aid) shortly, and have dental surgery scheduled this month at our children’s hospital.

Some issues, such as fused teeth, are related to her special needs; others are due to lack of early dental care and possibly even genetics. Three pediatricians later (it’s a dangerous thing to get between a mama bear and her cub), and we are finally being checked for syndromes. No stone unturned.

Ultimately, this “no” for so many other families has been our greatest yes. I see a lot of pained posts in Facebook groups about declining referrals. We reviewed other files prior to hers, too. Turning them down was agonizing, but we knew that our “no” was someone else’s SJ, more precious than rubies, exceedingly more than can be contained in a paper file.

SJ baby, mama loves you… ferociously.

guest post by Kate

One response to “Please Don’t Poke the Bear”

  1. Es says:

    Wonderful, wonderful post! So glad I’ve been able to journey with you guys if even only for a short time!

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