“A squirmy small hand taps impatiently at my leg while I sit here writing this storey.” She isn’t feeling well, as if she has a new mysterious sickness or pain that we aren’t sure of. So she clings to us, trying everything she can to make herself feel better, while we, helpless in so many ways, do everything we can to make her feel better. This has been the pattern of our life for more than three years. Our precious life was turned on its head and then spun till we were all dizzy and bewildered after meeting Primrose and becoming her family. And utterly, undeniably – in love.
I initially noticed her lovely face while scrolling on Facebook and stumbled across an adoption advocacy post. My husband, Chris, and I have planned on adopting a child from China since 2011. We recognized it because it had been growing in our hearts for so long that it had become inextricably linked to our tale. So, when her photo appeared on my computer in 2014, I immediately emailed her, asking for further information.
Her portrait revealed that she was blind, had the most delectable cheeks, and enjoyed a good snuggling. All of this is still true today. Her piercing blue eyes captivated me. We immediately wanted her to be ours because she was a bundle of love. So we obtained her “file” and began having it evaluated by reputable doctors and specialists. Their immediate reaction was terrible, with phrases like ‘this will be too much for your family to bear,’ ‘I think you’re in over your head,’ and, worst of all, ‘How do you expect to parent a child who is characterized as deaf and blind?’ She will have to live in complete darkness. ‘There is no sound.’ We spent one excruciating night debating these words and attempting to figure out if they were correct. Is this going to be too much? And, much to my surprise, we returned her file to the agency, pleading with them to obtain an updated medical file for her so that we could obtain additional information. That night, Chris held me while I wept myself to sleep. ‘If she is ours, she is ours, we can find a way,’ he said repeatedly.
We received an email that removed any doubt from our minds a few weeks later. Primrose’s hearing had deteriorated, but she passed her new hearing test. We spoke with some new specialists, who all said, ‘YES – get that wonderful girl!!’
We began the adoption process in the fall of 2014. Nothing was going to keep us from her. Not because of the price, the wait, or the unknown. Some days were incredibly depressing. We felt like our hearts would shatter knowing she was alone for two different Christmas holidays, but we were so hopeful and knew — come 2016, she would be in our family forever.
Also, let me be clear about this. No matter how confident we were, we were afraid during those long days of paperwork, fingerprints, and money wires. On this voyage, determination and fear go hand in hand, which is lovely because this has been the theme of our lives for years: act – even when we are terrified. We were determined to undertake the complex tasks because they were more important than the easy ones.
Primrose, our darling daughter, was eventually handed over to us in January of 2016. We soon discovered she had a recently acquired strep infection. She was frail and listless, unable to hold her head up and suffering from a high fever. As soon as our skin contacted hers, we went into fighting mode.
I want to take you through those first three days to see how challenging and rewarding each step was.
We walked and walked around an unknown city trying to buy formula (she didn’t have any) and fever meds after seeing her and being perplexed as to why she seemed sick, but no one knew what was wrong. We may wander for kilometres and never locate what we needed; I remember thinking. I’ve never felt so terrified in my life. Our infant was wailing and ill to his stomach. We couldn’t do anything.
I recall returning to the hotel, feeding her, lowering her fever, and communicating with our agency. Sobbing. I wanted to console her. We put on a brave face for our older children as we introduced them to Prim and described what was going on over FaceTime. Her body just shut down as I watched her breathe for 16 hours as she slept – sickness and anguish mix together.
The shrieking began the next day when we awoke. So we travelled to two separate Chinese hospitals, witnessed beautiful miracles, and connected with an American doctor from Prim’s hometown who directed everything through the individuals who were aiding us. We were finally able to get the medications we required. ‘Strep – she has awful strep!!!’ I kept shouting, and the final diagnosis was systemic strep, with blood work that would have landed her in ICU in the United States.
We supplied medications after returning to the hotel after 9 hours in hospitals, and within hours, we noticed a difference in the patient’s face. She began to laugh and smile. We got a couple of genuine cuddles. We all got a good night’s sleep. Finally.
We received a text from our guide the following day, asking us to hold off on adopting her. Please understand that it wasn’t out of malice. These folks who were assisting us couldn’t comprehend how we could move through with the adoption until we were assured SHE WOULD LIVE after seeing a couple come for a complex and challenged daughter only to find her gravely ill as well. ‘WE WANT THIS GIRL NO MATTER WHAT,’ I said flatly.
The day of the adoption arrived. Chris and I were clinging to each other.
I cried all day, smiling and crying over the fingerprints we both smudged on her official documents. Finally, she was ours. She has always been ours.
We taught her how to drink without aspirating, how to eat with a spoon, and how to sit with the assistance of pillows or our legs. ‘Primrose, we love you,’ we said in our broken, freshly acquired Mandarin. Mama and Daddy are proud of you.’ We informed her about her house, her brother and sister, and the animals who awaited her arrival. We sang songs to her and tickled her nonstop. She began to accept our soothing, and, in turn, we began to accept her. ‘You will never be alone again, Primrose,’ I soothed to her worried little heart as we ascended into the skies to return across the ocean.
Since those early days, we’ve been fighting for her health, trust, and heart, and we’re still fighting for her now. Adoption brings with it a lot of grief and sorrow. It makes no difference in the circumstances, how old you were when you were adopted or where you were born. Adoption is a traumatic experience. We had planned ahead of time. We knew she was well worth giving up every ounce of ourselves, our two older children, and the community she would join. But the ways it has changed us have surprised us.
Primrose is a bright flower. Her happiness is contagious. Her infectious laugh is contagious, yet her bright mind remains a mystery. Her spirit is violent and savage. Her face is a work of art. With her here, our lives are complete. Truly. And I never say it to imply that life is flawless. Isn’t it true that you can’t go through life without HARDSHIP? We are all vulnerable to adversity. We did pick her. This is the life we chose. This was a difficult decision for us. But, oh, man. It is a fantastic privilege to be her parents and family.
Primrose has a unique genetic condition called 6p25, and we’re still trying to figure it out. However, it is a FACT that this unusual ailment caused her blindness, as well as her unique brain structure, loss of muscular tone, and a variety of other fascinating issues. This makes day-to-day life extremely difficult. So dissimilar. Not less lovely, but RICHER in specific ways.
Our family went from living life comfortably, vacationing at Disney, going and doing as we pleased, to becoming advocates, researchers, amateur physicians, and therapists. Her body has been through countless surgeries and procedures, medical trauma, crashing in an ER, a life flight in the middle of the night, and anguish and pain that I cannot fathom. We don’t get much sleep because we have to plan every outing meticulously. Some days, she cannot leave the house, and everything must come to a halt to assist her. So, yeah… Our lives have been completely turned upside down. Nothing has remained the same. It is NOT an easy task. And I constantly hear, ‘I don’t know how you do it!’
Neither do we. But consider the other side of the coin for a moment.
What if we hadn’t gone through with it? What if we’d been too scared? What if I never saw her face? What if we hadn’t agreed?
What would she be like in a few years? Would anyone else have seen her face and fallen in love with her the same way we did? But what if they don’t?
Our older children might have missed out on their younger sister’s happiness. Our family would be incomplete without you. Our hearts are missing a magical piece. Yes, our lives have become a little easier. Perhaps fewer stares. There will be fewer medical bills and appointments: fewer therapies, and even fewer opportunities for continuing education in all things sensory.
However, there is less joy. There is less hope. Less giggling. It was less of a surprise. Less.
Loving a child from a difficult situation is dirty work. It’s impossible to be involved in foster care or adoption and not see, know, and feel overwhelmed by it. Your hands and heart dig into what appears to be unworkable dirt, but you keep digging. And there are rarely all the answers, and most of the time, it is just blind faith as you dig and work and try. And, day after day, the joy is accompanied by hard work – and, at times, the hard is all that exists – but the worth is the precious child. And while love does not cure everything, it is always a good place to start.
Even now, three years later, we don’t always see the difficult times coming. It appears with a BAM. And we go into a ‘how do we manage this, how do we help?’ mode, similar to a home crisis intervention plan. For a long time, Prim’s norm has been to work hard. This past fall, she underwent a double eye enucleation/removal due to excruciating pain and unanticipated complications from her complex eye pathology. I never imagined we’d end up on that road. ER visits, PICU stays, multiple surgeries, rehabilitation, and PTSD We’ve lost a lot of ground since August 2018, but we’re still here, rebuilding trust and communication and regaining lost confidence.
Patience and perseverance are required. That hard dirt works with hands and heart, knowing that time will not heal everything but bring a new season, a new sunrise, and a beautiful new tide.
I’m sitting here telling Prim she’s safe, that Mama and Daddy are here, and that we’ll hold her every second if that’s what she needs to feel better. We’ll always be on the lookout for her heart. And, above all, we would always go for her, despite the high cost to our comfort. We’d go again in a heartbeat.
Primrose gave us a miracle by allowing us to have a family. Herself. Her priceless life. Her lovely and deserving heart. She has given it to us, and it is far more than we can offer. Every moment I spend with her is surrounded by magic—a sense of impending doom. Even the difficulty is lovely because she belongs. We’ve got you covered. Her brother and sister accompanied her. Forever.
And here we cling to one another, all of our messes blending into one big mess, just like family. That is precisely how it should be.”
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