Please Don’t Poke the Bear

July 23, 2017 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

Bringing Benjamin Home

July 22, 2017 0 Comments

We are the Young Family. We live in a small town in North Carolina with our two biological daughters ages 16 and 11, and our adopted son Benjamin who is 4. Our story begins like may others. God’s call to expand our family through adoption, a reluctant spouse, no funds, paperwork, and the “What special needs can our family handle physically and financially both in the short term and the long term?”

We chose to more forward in faith and trust that God started this and He will guide and provide until the very end.

We began our China adoption journey in February 2013. Very quickly we were faced with the Special Needs medical checklist. I conquered the Google search of every special need listed and started checking boxes. We glanced over the Cleft Lip and Palate listing and naively thought, “Sure! That one is easy!” We already just knew our son would have some form of a limb difference. I quickly searched for those boxes and checked yes.

On December 30, 2013, my phone rang. As soon as I read the caller ID I knew this was “the call”. I immediately knew in my soul that no matter what my agency said this was our son. I hear over the line, “I was able to match you with a beautiful 6 month old baby boy! He is currently in an orphanage and he has bilateral cleft lip and palate. I am sending over his file and pictures for you to view.”

I knew already our answer was Yes. But bilateral cleft? Wow. That was unexpected.

We rushed home, submitted our LOI and started the research process. We were starting to question how in the world we could do this – years of therapies, surgeries, and even the gut wrenching “What ifs?”…

What if he is bullied for his scars?
What if he is bullied because of his speech?
Will he be understood by his extended family, friends, teachers?

We immediately contacted our closest cleft hospital and schedule a potential consultation appointment for when we should return home from China. After receiving LOA we soon got an update on Benjamin. He looked like a completely different child! China had repaired his lip. So we knew that may be one less surgery he would need – if the one he’d had was done properly.

Less than three months later we were waiting in a humid Nanjing Civil Affair office being handed the most beautiful Chinese baby. It didn’t take us long to figure out that his palate remained opened and he would need additional surgery soon.

After returning home, a friend and a few great uncles (who were Shriners) asked me to look into calling Shriners to see about Benjamin receiving treatment at one of their hospitals. I’d never heard of Shriners hospitals so I made the call to get information to see how one could become approved, and what it would look like financially for our family. They explained that every child who has cleft is accepted regardless of finances. They accept insurance but after that the hospital covers the costs fully up until Benjamin turns 21.

Before I hung up the phone she had me scheduled for a consultation with a plastic surgeon there. I was directed to my local Shriners temple where I found out they would pay for us to fly or drive to Cincinnati, have a Shriner volunteer to pick us up from the airport and transport us to the Hospital where we could stay in their Family Care Unit, again, for free. I was blown away!

We had our consultation and confidently scheduled a surgery date for palate repair.

The day of the surgery we were taken into a recovery room. Laying on the bed was a lovely age-appropriate toy for Benjamin and a bag filled with fun goodies. It was a great comfort for Benjamin. A nurse came into the room to try to explain to Benjamin everything that would happen and showed him pictures of things he would see. Yes, even at one year old their procedure is to prepare the child for what is to come.

The surgery was successful and we were able to head home a few days after. The care we received there was top notch and we are forever grateful for the blessing Shriner’s Hospital has become to us. God truly worked out the details in every aspect of Benjamin’s care.

We now drive to Cincinnati once a year for a routine checkup and they provide us a hotel room on the way there and home which is so nice – we are even reimbursed for our gas! They also offer a volunteer driver to drive families to Shriners hospitals which is also a great alternative if you aren’t comfortable driving or flying.

I’m so thankful for the opportunity to share about our experience with Cincinnati Shriners Hospital. My hope is that other potential adoptive families can understand that they have a very inexpensive, wonderful alternative for all children that have or need Burn Care, Cleft and Palate, Orthopedics, and Spinal Cord Injury.

They truly go the extra mile for their patients and provide for them any way they can. We know Benjamin will have another major surgery in the next few years. I can’t imagine going anywhere else for his cleft needs.

– guest post by Brittany

Waiting to be Chosen: Benny

July 22, 2017 0 Comments

Precious Benny was born March 2015 and is described as an active toddler who loves to explore and interact with his surroundings. He smiles often, and looks at you when you talk to him. He enjoys listening to music and watching cartoons.

Benny is diagnosed with beta thalassemia and severe anemia. Caregivers report he needs transfusions every 40 days or he loses his appetite and cries more often. He is small for his age, but his motor skills and cognitive abilities are reported to be fair. As of September 2016 he could crawl very fast, stand holding onto support and walk with one hand held.

His fine motor skills are good; he can reach out to grab toys, put a block in and out of a cup, and put a cap on a bottle. He has a few simple words in his vocabulary, and follows instructions from his caregivers. Benny likes playing with other kids, but is shy around strangers. He is closest with his caregiver.

Sweet Benny needs a family who will get him the medical care he needs to be healthy and strong! WACAP is offering a $2,000 Promise Child Grant for qualified families. Email WACAP for more information!

Walking His Road

July 21, 2017 0 Comments

It was Memorial Day 2012 the first time my husband, Robert, told me he wanted to adopt. We lived in a delightful little suburb of Dallas and had spent the afternoon watching our three young boys play at the splash park. We were all hot and sticky as we drove home and he said, “I’d …Read More

Even Still

July 20, 2017 3 Comments

“We must learn to realize that the love of God seeks us in every situation, and seeks our good.” 
- Thomas Merton Sometimes things just don’t make a bit of sense. 
 Sometimes, often actually, God allows things to happen that I don’t get.
 Sometimes, in the story, rules change, and I’m confused.
 Sometimes, in …Read More

Trusting My Instincts

July 19, 2017 1 Comments

My husband Derrick and I had been married for almost eight years when, in the summer of 2015, our path to parenthood ultimately led us to adopt from the China Special Needs program. Up to that point, we had never considered what life would be like for our growing family outside of the “typical” narrative. …Read More

Cool Hats and Shaggy Haircuts: Adopting a Child with Microtia

July 18, 2017 1 Comments

(Let me start by saying I are so far from an expert on the topic of microtia and atresia. Just know that I am a loving mother with a son who happens to have this special bonus feature, not an ENT doctor.) When my husband and I filled out a medical checklist in February of …Read More

Still Connecting: What Attachment Looks Like Years Later

July 17, 2017 3 Comments

I think as moms, we would all say we are passionate about connecting to the hearts of our children. For me — children have always been my heartbeat. Children influenced my major, my career and later led to my putting my career with children on hold—to be a stay-at-home mom. I know this is a …Read More

Waiting to be Chosen: Liam

July 16, 2017 0 Comments

Liam was born in August of 2012 and is listed with AAC. When AAC staff first met Liam in May of 2016, he was shy and quiet. But it didn’t take too long for him to open up and show them how amazingly bright he is! When given the choice of toys to play with, …Read More

Unexpected Beauty

July 15, 2017 1 Comments

I sat in my Thursday morning Bible study, sharing my confusion and fears with my prayer partner, Shawna. My husband and I were certain that God had called our family to adoption shortly after our biological daughter, Campbell, was born in 2011. By the time she was 15 months old, we had submitted our dossier …Read More

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