After a twenty-minute speech about what our daily routine would entail, followed by a list of possible complications, the Hematologist looked at me pointedly…
“You know, it will be a steep learning curve for you all, but you will settle into a routine, and more quickly than you think. You’ll see. He’s just a boy.”
I knew that this must be my take-away. It certainly appeared, from his perspective, to be the single most important thing he had told me during our consultation. I felt myself blush as I shoved the small, incomplete stack of my son’s medical records and pages of my seemingly endless questions about Hemophilia back into my bag.
I was almost embarrassed about how anxious I’d become as I listened. There were risks, to be sure, but it all seemed so… manageable. Here was my boy’s soon-to-be doctor sitting across from me and telling me that he would live a very normal life here in America. I wanted so badly to exhale, to let his words bring me comfort, but I struggled to find any semblance of peace.
The truth was, we had taken one look at our little guy’s face and said, “Yes – we want to adopt this boy – he is our son.” We’d seen his picture on a waiting child list, and oh, I could not possibly describe how sweet this baby was – fifteen months old, tired eyes, tiny mouth slightly open, wearing a black and white striped sweater and corduroy overalls adorned with Rudolph’s red-nosed face. He was so squishy and cute, dressed in stereotypical Chinese orphanage winter garb. Layer upon layer… upon puffy layer.
We chose him with the impulsive, gut-driven way in which my husband and I seem to make the majority of our big life decisions. Gut feeling corresponded with little serious thought about what it truly meant to raise a child with a chronic bleeding disorder. I should say that we believed we were thinking it through, but as is the case with many things in this life, it is difficult to gain true perspective on something until one is living it.
Sitting in the doctor’s office that afternoon, wondering for the first time what on earth we were doing, I looked at him and nodded. “I get what you’re saying. Of course I do. He’s just a boy.” And on some level I did get it. On the other hand, I was thinking to myself: “DOCTOR, he isn’t just a boy, he is MY boy, my first baby, and he happens to have severe Hemophilia, he happens to live in an orphanage halfway around the world, and we won’t meet him for many months, I don’t know what his days are like, or who is taking care of him, if anyone is taking care of him, and what if, heaven forbid, he has a bleed?!?!”
Thoughts and fears swirled around my overwhelmed, tired little brain while the doctor continued to speak in hypotheticals about what sports he might play one day. I found myself zoning out, oddly visualizing his words on a giant poster board in my mind. At the top of the page in huge letters: “DON’T WRAP HIM IN BUBBLE WRAP! HE CAN DO ANYTHING HE DREAMS OF DOING!! HE’S JUST A BOY!!” and at the bottom, in tiny ones, and in parenthesis: “(with Hemophilia).”
I began my very own internal pep talk, right there in the examination room. “Faith! Get it together, lady. You must let this man’s words guide you or you are going to make yourself even crazier than you already are. He is a beautiful little boy who happens to have a teensy blood condition. You will handle this. You and Keith will be competent – maybe even good – parents. And, furthermore, the ayis will keep him alive until you get to China.”
I shoved my big fears aside as best I could, and went home, “faking it until I could make it” was my best (my only) plan. That night, I sat down to explain everything I’d learned to Keith. The gist of that talk was something like this, though less formal and more interrupted:
1. Hemophilia is a rare genetic bleeding disorder.
2. There are different forms, but they share one commonality — the absence of one of the proteins that help the blood to clot. Practically speaking, this doesn’t mean what you might think. A person with Hemophilia isn’t going to get a cut and bleed out. Rather, when he experiences a traumatic injury, he is at great risk for internal bleeding. This bleeding can occur spontaneously, but more often corresponds with trauma. Internal bleeding often occurs into the joints, especially the knee, elbow, and ankle. Not only is this extremely painful, it can affect range of motion, and ultimately be crippling. He will need to be monitored closely during dental procedures and surgeries for abnormal bleeding.
3. We must be mindful if he falls, especially if he hits his head, because he is at risk for bleeding in his brain.
4. There are varying degrees of severity; our little guy has severe Hemophilia B, meaning he has almost no measurable quantity of a clotting protein called Factor IX. Because of the severity of this deficiency, he will need frequent intravenous infusions of a product (also called Factor) that will replace the missing protein in his blood.
5. The average lifespan for someone with untreated Hemophilia is 24 years. Twenty-four years. In many countries, including China, treatment is given “on demand,” meaning that a person receives infusions only if he has a bleed. This can be very problematic because people often experience joint damage and other serious complications before they ever receive Factor. But, advances in treatment over the past several decades mean that for people with severe Hemophilia in America, infusions are given prophylactically.
6. We won’t have to wait until a bleed occurs — our boy will receive infusions several times a week. This should keep his Factor IX level high enough that most of the risks, both to his joints and to his life, will be greatly reduced. There is no reason that he should not live a completely normal life, barring a few restrictions from contact sports and other risky physical activity.
I watched as Keith listened. I observed his attempt to extinguish his own worry. I remember feeling slightly annoyed because I wanted him to sense that I was worried too, to comfort me, to tell me that everything would be OK. He didn’t read my mind. Perhaps this would be one of the times throughout our journey when I would lift him up — I knew I’d need it in return many times down the road. I gave him the same talk I’d given myself earlier that day.
“He’s just a boy. He’s a boy who happens to have Hemophilia. This will not define him as a person, it won’t define his life, and we just have to repeat these words over and over in our brains until we believe them… or at least until we can get to him. He will be fine until we get him home.”
Days passed and then months. Everything seemed to move so slowly, but in retrospect, it is a blurry whirlwind. Keith was working in a remote area of southern Romania for much of this time, and I was often home alone, obsessing over every detail of our boy’s room – from the giant pull-down map of China to the tiny license plate art bearing his name: Shaw.
We’d decided to name him Shaw. My maiden name. Both homage to my father and grandfather, and a way to keep the name alive. (My sister and I had been the last of the Shaws.) I wondered if I’d call him by his Chinese name, or if he would quickly take to his new one. For that matter, I wondered if two year olds felt any sense of ownership over their names. I wondered what they called him in the orphanage, how often anyone called him anything, who held him and when, if he had a favorite nanny, or if he was anyone’s favorite. I wondered what he was doing at each particular moment.
“Hold on baby, we’re coming. Just hold on until we get there,” I’d whisper as I wondered and worried.
I washed and hung all of his clothes, and sat in the rocking chair we’d placed in the corner of his little room every night, reading my book, looking at all of my hard work, practicing my deep breathing in hopes that I might somehow permanently quiet my fears. I looked at every picture we’d received millions of times, daydreaming about what it would be like to have a child in the house, wondering if he would let me rock him to sleep, and if he’d play as I sat in the same spot, watching over him with joy. I nested. I prepared. I should say – I tried to prepare, as best I knew how.
I read books about adoptive parenting, and raising a child with Hemophilia. I spent night after night scrolling through old posts in the China Adoption forums on Facebook, befriending other moms who were also frantically gathering paperwork, obsessing over timelines, and worrying over children they’d never met. Thankfully, I happened upon a Hemophilia Adoption group, where I saw the words that the Hematologist had spoken to me – he’s just a boy – playing out in real life for families bringing home their boys from China.
It appeared that there was a steep learning curve for the first several months, but over and over again, these families settled into a routine with treatment fairly quickly. Armed with that knowledge, I tried to remember to breathe deeply, enjoying the last few child-free months of my life with intention, whenever I could remember to do so.
In late September, Keith and I signed and sent off our letter of acceptance (LOA) to China. Shaw was ours and we were his. China had said yes! We were over the moon. We started to think seriously about travel plans, mostly where we might sightsee before the adoption. About a week after we signed the LOA, I received a message from our agency’s in-China facilitator. AN UPDATE! I was bubbling over. This meant my very favorite thing — new pictures of my baby. I quickly scrolled through three new photos. There he was. Sitting on a yellow rocking horse. Wearing a button-down, plaid, short-sleeved shirt. He looked so fancy! And so… different.
(I have to pause here and tell you all that I often had this reaction when we received new pictures of Shaw. Photos arrived months apart, and his face would change so much. I would email them to my closest friends and family, and immediately call, asking: “Do you think that’s really him? Are you sure?”)
This particular time, though, something about his face was so shockingly altered. I continued scrolling through the message to the text portion of the update:
“High 79 cm, weight 26.5 lbs, head 48 cm, chest 48 cm, feet 13 cm, he can walk by himself, say ‘mama’, he loves listen children song, he wear size L diaper, he go to bed at 8:00 pm, he sleep by himself, he loves play with other children, he is easy going boy, if you give him a hug when he upset, he will come down and be happy. He drinks milk powder. He had intracerebral hemorrhage in September.… Sorry we just heard that today.”
He had intracerebral hemorrhage in September? What?!? No, no, no, no, no. My heart sank. I had been sitting in the drive-thru line at Starbucks while I read, blissfully unaware until that moment. Feeling as if I must be in some sort of shock, I pulled the car into the parking lot to call my mom. Sobbing. How would I tell Keith? What would I tell Keith? Shaw had been hospitalized for 19 days in China. Almost three weeks. I’d been camping, enjoying baby showers, and celebrating with my friends and family. During that time, my baby had been lying in a hospital bed suffering. We knew that a brain bleed was a possibility, but we’d just never imagined that possibility for Shaw. Again with the things that don’t quite sink in until you live through them.
The only thing I could think was that there was absolutely no way we were cut out for this. I didn’t even know what this was yet, but I knew that we, Faith and Keith, could not handle it. Our marriage was not equipped to handle this kind of stress.
A million questions raced through my head.
Was Shaw OK?
Was his brain OK?
Would he walk and talk?
Have cognitive limitations?
Would his brain continue to bleed until we reached him?
Could we keep him alive and well in China?
And on the flight home?
What did this mean for his future? What did it mean for ours?
And, why was I being so selfish when my baby was hurting?
I spent excruciating hours obsessing over the worst-case scenarios. Two days later, I received translated medical reports from China, which fueled my anxiety so much more — “intracranial hemorrhage,” “subarachnoid hemorrhage,” “parenchymal hemorrhage,” “narrowing of the ventricular system on the right side of the brain,” “multiple hematomas,” “shifting of the midline.” I didn’t know what many of those words meant, but Dr. Google brought me to a point of panic. I quickly realized that Shaw’s face looked so different in the new photos because his head was still swollen from whatever had happened inside his brain.
By that time, I had made contact with Keith. Halfway around the world from each other, we cried into our cell phones, wondering how we would possibly parent this child whose need was so different than what we had bargained for. Clearly, the hematologist had been wrong. Hemophilia was not as cut and dry as he had wanted me to believe. The translated reports mentioned that Shaw had been hospitalized many times over the past year due to hemorrhage. Why had no one told us? I was angry. I was selfish. I grieved the loss of the picture-perfect adoption story I had envisioned for our family. I was so, so afraid. I cannot adequately describe to you the level of fear that I experienced in those days.
I had long, tearful phone calls and conversations with Shaw’s soon-to-be-medical treatment team, my mom, my dear fellow choir members at church, and a few adoptive mamas who kept telling me with confidence that we would be OK. I didn’t entirely believe them in the moment, but over and over again, my people kept saying little things that strengthened my resolve. I leaned on all of them. I needed them. And the beautiful thing was – Shaw LOOKED good, everything considered. He was walking decently well. His face wasn’t droopy. He didn’t seem to be favoring one side over the other.
In the frenzy that had followed our update, the orphanage agreed to hold him back from activity to protect him until we arrived, and to inform us of his condition frequently. We received new pictures and videos almost daily, and in them, he was playing… sometimes even smiling. The swelling in his head was decreasing markedly. I was told over and over again that toddler brains are extremely resilient. Each of these things gave me tiny slivers of hope.
And so a few days later, after I’d allowed myself to sufficiently fall apart and at least slightly regain my composure, I snapped into a mama-bear mode that I never knew I had. I channeled my nervous energy into trying to find some Factor so that the orphanage could treat Shaw until we made it to China, working tirelessly to push the rest of our paperwork through, and book our travel at warp speed. Shaw was loved, he was our son, and a brain hemorrhage would not change those facts one single bit.
Despite my best efforts, I was never able to find a way to get Shaw’s medicine to him before we arrived, but thankfully, we were on our way within a few weeks. There are so many things to tell you about what has happened in the time from that long plane ride over the top of the world until now, but I’ll save those for another day. I think it’s more important that I tell you about my boy.
Shaw turned two in December. We have pictures of him from his birthday celebration. He is standing in his shiny, new red wagon, bottle shoved in his mouth and propped up with his right hand, while his left arm waves in the air, as if to say: “Watch out world, here I come!” (Foreshadowing. Yes, we need to watch out.) Our boy has gone from a wobble-bobbly little thing to a runner, all in the course of four months home. We spent our time in China hovering over him – taking helicopter parenting to a whole new level- holding our arms around him to catch him each time he stumbled. And he stumbled. A lot. I wish you could see him now, walking down the steps on our back deck all by himself, running across our big backyard, giggling while his Baba tries to catch him.
His favorite word is stuck. I swear to you, he spends half his time finding ways to get stuck all around the house, just so he can look up at us and say: “stuh, stuh,” and smile when we say in return, “yes, baby… you’re stuck.” Shaw gets stuck climbing up on the back of the couch, stuck climbing in between the ottoman and Baba’s big chair, stuck climbing to the top of his indoor slide before he flies down, head first. (I mean, who would’ve ever believed we would let him go down a slide headfirst.) (Also, we have an indoor slide, people.) Our living room has become this child’s personal jungle gym, and we could not be happier to watch him get stuck, and then “go, go, go.”
Recently, I took him to his 30th infusion of Factor. We’ve been going to the Hemophilia Treatment Center at our local children’s hospital. Twice a week we go, and each time we are called to the back, he sits down in my lap, pulls the chair arm down across our laps, pulls his sleeve way up over his elbow, sticks his arm straight out, and points to his little vein, ready to “help” the nurses give him his medicine. He rarely cries anymore. He barely even wiggles most days. He simply watches them place the IV, and points to all of the medical supplies he wants to play with until the infusion is complete. (Of course the sweet nurses indulge his every wish. They love him too. I get that I’m biased, but frankly, it’s impossible not to be charmed by this little guy. For a two year old, and he handles an IV better than most people would.) Over the weeks, we’ve seen the bruises that covered his little body and face fade away as the medicine gives him new life.
Since we met, he’s gained three pounds, and grown over three inches. I get tears in my eyes typing that to you. The difference that nutrition, one-on-one care, and love have made for Shaw is nothing short of incredible. When we got home, he was assessed by our city’s Early Intervention program. By the time of the assessment, his gross and fine motor skills had improved so rapidly that he didn’t qualify for therapy.
We did start speech therapy at home, and the other day, I got a text message from his speech therapist who told me that she is blown away by how quickly he is picking up English. At almost two years old, Shaw only ever spoke one word in Mandarin: “mama.” He has easily 30 words in English, and almost as many signs. And he is so very proud when he shows us his signs. One night, not too long ago, he saw a bird on TV, and signed bird to me. He must’ve realized that I was thrilled, because he ran to get his favorite book, opened it to the page with birds, made the sign, flipped to the next page with birds, made the sign again, and slammed the book shut with a huge grin. I’m positive that he’s as delighted with himself as we are with him.
Keith and I could type a thousand of these stories; a single theme running through everyone: Shaw amazes us every single day. I never would have dreamed that I’d write these words five months ago, as I sat in that Starbucks parking lot, bawling on the phone to my mama. I never would’ve dreamed it four months ago, on the day that I held him for the first time in that hotel lobby in China. We had a rough start, and we’ve had many rocky patches between then and now (i.e. Baba holding him for thirty consecutive hours on the way home from China, troubles with in-home healthcare, my return to work and our very slow and deliberate trip across the attachment continuum)… but our story is playing out much as the Hematologist told me it would – we have settled into a routine with Shaw’s Hemophilia, and much more quickly than I’d ever imagined.
I do have to take issue with one thing the doctor said to me during that first meeting: Shaw really isn’t JUST a boy. He’s so very special. He is smart as a whip, he’s incredibly funny, he’s kind, he’s insanely beautiful. Almost all of the time, he is an absolute delight to be around. And, y’all, hear me when I say this and understand that this has been one of the most powerful things I’ve ever witnessed in my life: this boy is the absolute bravest tiny human I have ever seen.
These days, it is often said in China adoption circles that the biggest special need is to be born a boy. I see these boys with Hemophilia – even the little ones – they wait and wait and wait for their families. I get it. It’s scary. There are always unknowns.
But there are some things that you can know right now, as you consider whether a boy with Hemophilia might be your son:
– Orphanages are no place for these kids – not that they are places for any children, but in particular, Hemophilia is an extremely dangerous condition to live within an understaffed orphanage.
– Most of these boys are not treated in China at all; the medicine is just too cost prohibitive. Lack of treatment leads many of these little guys to experience long and painful days/months/years while they wait.
– If you bring one of these boys home, his life will not only be prolonged by many years, but the quality of his life will be increased exponentially.
– And – I can only speak from our experience – the joy that this little boy has brought to my life and to Keith’s is absolutely beyond measure. He has given us way more than we could ever hope to give back to him, although we will certainly never stop trying.
Imagine if fear and doubt had gotten in our way. I can’t. I just can’t. When Shaw came home, his favorite things in the whole world were the fall leaves. It was early November, and the leaves were falling from the trees in the brightest yellows, oranges, and reds. We would go for walks in the afternoons, initially trying to combat jet lag, and then because he loved to be outside so much. He’d point to the leaves, asking to hold them as we strolled along. He would hold one in each hand, waving them high above his head, saying “wooooooo, woooooooo.” Shaw means “dweller by the wood.” Isn’t it funny how well his name fits him? We’d given him the name in the hopes that someday, it would solidify for him his important place in this family, but already, he truly embodies it better than anyone. Watching him take such incredible joy in the world around us, even in our own backyard, I’ve learned so much about what it means to be a Shaw.
I’m very proud to call him my son. And I’m so incredibly lucky that Shaw calls me Mama.
– guest post by Faith