Sitting here writing this story, a squirmy little hand keeps tapping anxiously at my leg. She doesn’t feel well—some new mystery illness or pain that we can’t quite figure out. So, she sticks close to us, doing everything she can to feel better while we, helpless in so many ways, do everything we can to make her feel better. This has been the cycle of our lives for over three years now. Meeting Primrose, and becoming her family, turned our idyllic life on its head and then spun it until we were all dizzy and dazed. And completely, unabashedly, in love.
The first time I saw her beautiful face, I was browsing Facebook and came across an adoption advocacy post. My husband, Chris, and I had known since 2011 we were going to pursue adoption from China. We knew it because it had grown in our hearts for so long, it was inevitably part of our story. So, in 2014, when her photo came across my screen, I instantly emailed asking for information.
It was clear from her photo that she was blind, had the most delicious cheeks and loved a good snuggle. All still true to this day.
Her piercing blue eyes were mesmerizing. She was just a bundle of love that we desperately wanted to be ours. So, we got her "file" and started to have it reviewed by trusted doctors and specialists. Their initial reaction was heartbreaking; words like "this will be too much for your family to handle," and "I think you are getting in over your head," and the worst — "How do you plan to parent a child who is described as deaf and blind? She will live in total darkness. Total silence."
We had one agonizing night of fighting these words and trying to decide—are they right? Is this too much? And, to my horror, we sent her file back to the agency and begged them to get an updated medical file for her so we could have more information. Chris held me while I cried myself to sleep that night. He told me again and again, "If she is ours, she is ours—we can find a way."
A couple weeks later, an email came in that completely wiped all doubt from our minds. While Primrose did have diminished hearing, she passed her new hearing exam. We talked to new specialists who agreed with a resounding, "YES, go get that sweet girl!"
We started the process to adopt her in the fall of 2014. Nothing was keeping us from her. Not the cost or the wait or the unknown. Some days felt so despairing. Two different Christmas holidays came and went without her, and it felt like our hearts would break knowing she was alone, but we were so hopeful and knew, come 2016, she would be in our family forever.
Let me be super clear about this, as well: No matter how sure we were in those long days of paperwork and fingerprints and money wires, we were also terrified. Determination and fear go together on this journey, which is perfect, because years before, this became the theme of our life: Act—even when we are afraid. We were committed to do the hard things because they matter more than the comfortable things.
In January of 2016, we finally put our hands on Primrose, our beloved daughter.
She was so sick—a newly acquired strep infection, we found out soon. She was tiny and listless, couldn’t hold her head up, scalding with fever. We instantly went into battle mode the moment our skin touched hers. I want to walk you through those first three days so you know how hard and how WORTH IT every single step was.
After meeting her and being so confused as to why she seemed so sick, but no one knew what was going on, we walked and walked around an unfamiliar city to try to find formula (she came with none) and meds for her fever. I remember thinking we would walk for miles and never find what we needed. I’ve never been so afraid. Our baby was screaming and so very sick. We were helpless.
I remember getting back to the hotel, feeding her, getting her fever down and messaging with our agency. Sobbing. Wanting to comfort her. Putting on a brave face for our big kids as we introduced them to Prim over FaceTime and explained what was happening. Watching her breathe while she slept for 16 hours—sickness and grief mingle together—and her body just shut down.
We woke up the next day and the screaming began.
So, we set off for two different Chinese hospitals, experienced the most incredible miracles, communicated with an American doctor from Prim’s hometown who called all of the shots through the people assisting us. We finally had the meds we needed. The whole time, I was saying, "Strep—she has horrible strep!!!" and the final diagnosis was systemic strep with blood work that would have had her in ICU in the States.
Getting back to the hotel after nine hours in hospitals, we administered medications and within hours, we start to see her face change. She started to giggle and smile. We got a few actual snuggles. We all slept soundly. Finally.
We woke the next morning to a text from our guide, because they wanted us to wait to adopt her. It wasn’t malice, please know. But to see a couple come for a complicated and disabled daughter, just to find her critically ill, as well, these people helping us couldn’t understand how we could move forward with the adoption until we were certain SHE WOULD LIVE.
I responded verbatim, "WE WANT THIS GIRL NO MATTER WHAT."
Adoption day came. Chris and I clung to one another. I cried the whole day, smiled and wept over the fingerprints we both smudged onto her official papers. She was finally ours. She was ours all along.
We taught her to drink without aspirating, we taught her to eat from a spoon and started to help her learn to sit with support from pillows or our legs. We spoke in our broken, newly acquired Mandarin, "Primrose, we love you. Mama and Daddy love you." We told her about her home, her brother and sister and animals waiting for her. We sang songs to her and gave her endless tickles. She slowly began to accept our comforting, and she started to very slowly accept us. And as we lifted into the sky to head back across the ocean, I whispered to her anxious little heart, "You will never be alone again, Primrose."
From those early days to this exact day right now, we have been in the fight of our lives for her health, her trust and her heart.
Grief and loss come hand in hand with adoption. It simply doesn’t matter the circumstances, the age at adoption, the country of origin. Adoption = trauma. We were prepared. We knew she was more than worth every ounce of ourselves, of our two older kids and of the community she would become a part of. But the ways it has changed us … we didn’t expect that.
Primrose is a light. Her joy is all-encompassing. Her laughter is infectious and her brilliant mind ever a mystery. Her spirit is wild and ferocious. Her face is pure magic. Our life is complete with her here. Truly. And I say that never meaning that life is perfect. You cannot walk through life without HARDSHIP, right? None of us are immune to struggle. We did choose her. We chose this life. We chose this hard. But, man. It is absolutely an honor to be her parents, her family.
Primrose has a rare genetic syndrome —6p25—and honestly, we are still figuring it all out.
It is FACT, however, that this rare condition caused her blindness, her unique brain structure, her lack of muscle tone and some other fascinating challenges she faces. This makes the day-to-day living so complicated. So different. Not less beautiful, but somehow, actually, RICHER.
Our family went from comfortably living life, vacationing at Disney, going and doing as we please, to being advocates, researchers, amateur physicians and therapists.
Her body has endured countless surgeries and procedures, medical trauma, crashing in an ER, a life flight in the middle of the night, anguish and pain I cannot comprehend. We don’t get much sleep; we have to perfectly plan every outing. Some days, she cannot leave the house and everything has to stop in its tracks to help her. So, yeah … our lives have been totally upended. Nothing is the same. It is NOT easy. And I hear this all the time: "I don’t know how you do it!"
We don’t either. But let’s look at the other side of this coin for a second.
What if we had NOT done it? What if we had been too afraid? What if I had never seen her face? What if we had not said yes?
Where would she be in a few years? Would anyone else have seen her face and fallen in love like we did? What if they didn’t?
Our oldest kiddos could have missed out on the joy of their younger sister. Our family would be incomplete. Our hearts lacking some magic piece. Our lives a bit simpler, yes. Maybe less stares. Definitely less medical bills and appointments. Certainly less therapies, and most definitely less continuing education in all things sensory.
But also, less joy. Less hope. Less laughter. Less wonder. Less.
Loving a child from a hard place is very dirty work.
It’s impossible to play any part in foster care or adoption and not see and know it and be totally overwhelmed by it. Your hands and heart dig into dirt that seems unworkable, but you dig in again and again. And there are seldom all the answers, and mostly just blind faith, as you dig and work and try. And day after day, the hard work comes with the joy—and sometimes the hard is all there is—but the worth is the precious child. And love doesn’t cure everything, but it is always a start.
Even now, three years later, we don’t always see the hard coming. It shows up just BAM. And we go into "how do we manage this, how do we help?" mode, like a crisis intervention plan at home. For Prim, hard has been her norm for a while. Horrific pain and unforeseen complications from her complex eye pathology caused her to have a double eye enucleation/removal this past fall.
I would never have guessed we would walk that road: traumatic ER visits, PICU stays, multiple surgeries, rehabilitation, PTSD. We have lost a lot of ground since August 2018, but we are here, rebuilding trust and communication and lost confidence.
Patience and persistence. That hard, dirty work with the hands and heart, knowing that time cannot heal everything but it does bring a new season, a fresh sunrise, a beautiful new tide.
I sit here today telling Prim she is safe, that Mama and Daddy are here, that we will hold her every second if that is what she needs to feel better.
We will always chase her heart. And more than anything, we would always go for her, even knowing the great cost to our comfort. We would go again in a second.
Because in gaining a family, Primrose gave us a miracle. Herself. Her precious life. Her worthy and beautiful heart. She has given that to us and it is so much more than we bring to the table. Every second with her is surrounded by magic. An air of anticipation. Even the hard is beautiful because she belongs. Here with us. With her brother and sister. Forever.
And here we cling to one another, all of our messes merging into one big mess, as it is with family. As it should be, unconditionally.
This post is written by Eryn Austin and was originally reprinted on Mom.me sister site CafeMom with permission.