What We Know About My Son, Akira, And How I Live With What We Don’t
Snowpiercer’s Mickey Sumner on her passage to motherhood, and living with an unclear diagnosis for her 4-year-old son, Akira.
Before Akira arrived, like any pregnant woman having their first child, I had so many preconceived ideas about what motherhood would be like and what my child would be like. I would be a mother who wouldn’t need help, who wouldn’t buy plastic toys and who wouldn’t wear sweatpants all day. When I was pregnant, I didn’t want to know the baby’s gender; I would be ecstatic regardless. Around my fifth month, I thought that my OB-GYN had accidentally told me I was having a girl. I shared the news with my husband. We decided to keep it a surprise until the birth. But everyone told me I was having a boy. Everyone. They all said, “Clearly, you’re having a boy, look at the shape of your belly.” I laughed to myself, “Everyone thinks they know everything. I’m having a girl. They know nothing.”
And then Akira arrived. “Is he a boy?!” I remember quizzing the midwife multiple times as I held his naked body in my arms — that was the beginning, where everything I thought I knew about motherhood was turned on its head. I knew nothing.
Akira arrived in my parents’ home on New Year’s Eve, two weeks early. From everything the midwife told me, everything was totally fine. When she handed him to me, he didn’t cry, he didn’t latch, and he was a little bit floppy. I looked at the midwife, as she was rubbing him, questioning her if everything was OK. She assured me, “It’s OK, it’s OK. He’s just small, he’s early, he might need a little bit more time.”
But my mother, who was beside me during the birth, said that Akira came out of my body pretty still and pretty blue, and the midwife had to really get him going. But the midwife again assured me he was fine, and the pediatrician came and said he was fine. He said, “Oh, he’s a little bit cold. Let’s put some clothes on him.” Everyone thought, “Wow, he’s such a chill baby.”
The next day, the lactation specialist came as he still wasn’t really latching. She said, “OK, we might just need another day.” As an anxious person, I was having anxious thoughts. But as an anxious person who felt shame about her constant anxiety, I tried to calm my mind, “Stop worrying, Mickey.”
In this moment, the unshakable visceral weight of responsibility combined with the deepest primal urge to protect and nurture my child crashed over my body. I was in it. This was motherhood.
On the third day, the lactation specialist came back, and Akira had still not latched, he was still floppy, and he had turned yellow. “You guys need to go to the hospital right now. This is not right,” she told us. And so we drove Akira to the hospital, my heart and mind racing, and by the time we got there, he was hypothermic, they couldn’t find a vein to take his blood, and they took him off me and admitted him to the NICU.
When they finally brought me into the ward, he was lying in an incubator, under a blue light. He was glowing. The image was surreal, like some sci-fi movie. They had wrapped his eyes with a white gauze bandage and covered his tiny body in wires, patches, and sensors. There was a tube running up his nose, and next to him, the monitor kept beeping. I felt the ground give way underneath me. His vitals were dropping off, then coming back, then dropping off.
As I sat in the plastic chair underneath the monitor, my body still aching and bleeding from birth, I watched myself move toward the precipice of madness — I could see the edge of losing my mind, I thought, “They’re gonna have to take me away. They’re gonna have to strap me down, put me away and tranquilize me.” I was so close, it looked so inviting, and then I heard a voice inside my head: “You’re a mother now. You can’t go anywhere. You have to stay. Regardless of how awful it gets. Your baby needs you to stay.” In this moment, the unshakable visceral weight of responsibility combined with the deepest primal urge to protect and nurture my child crashed over my body. I was in it. This was motherhood. I was bonded, and I had to hold my shit together.
I’ve always wondered if his difficult home birth was the reason for so many of Akira’s challenges. We were in the NICU for three weeks while they were trying to understand why he was not “thriving.” Finally, they diagnosed him with a rare genetic unbalanced translocated chromosome. The doctors assured me, “It wasn’t anything to do with the birth. It’s because of his genetic translocation.” My gut kept telling me things happened during his birth that seemed wrong to me, but the medical system told me, “No, it’s just because of his genetics,” and so that’s where everything became somewhat murky and confusing, and I found myself playing out his birth again and again, asking myself “If I had done this...?” and, “If I had done that...,” a myriad of questions — just trying to make sense of it all.
Akira was misdiagnosed during those three weeks — we were told he had the Zika virus; he had microcephaly; that his optic nerve was damaged; and finally he had a degenerative brain disease and might not make it past 5 years old. When we left the NICU, holding our tiny, mysterious child with a precarious future, the neurologist, who had given us these bleak diagnoses, advised us, “Don’t expect much from Akira.” I wanted to punch her in the face. I also wanted to curl up on the floor and not move ever again.
And that’s where I really admire Chris, Akira’s dad, because I assumed, “She’s the doctor. You listen to the doctor,” and his attitude was, “No. We are finding the best of the best specialists, we will comb the planet for the best,” and he went on a mission. He found two specialists who dismissed these diagnoses. “Yes, your son has a rare genetic condition,” they said, “and I can’t tell you what his life is going to look like, but Akira does not have a degenerative brain disease, and his optic nerve is fine.” If anyone out there is looking for advice from this article, here it is: Get a second opinion, get a third opinion — hell, get a fourth opinion. People make mistakes.
On days where my anxiety creeps up on me, when I worry about his future, this is what I always come back to: People feel good in his presence. He is like sunshine. My tiny mighty sun.
Four years later, and I think I have arrived at a place where the hows, the whys, the what-ifs surrounding Akira’s birth and diagnosis matter less — he is here, and that is all that truly matters. He is here with all his miraculous uniqueness. He’s on a big journey. All the medical questions around Akira become moot when I look at him shining his humanity with such deep joy, curiosity, love, and presence. The only question I have: How did I get so lucky?
Everyone who meets Akira pulls me aside and whispers, “I think Akira and I have a really special bond.” Everyone does it. I bite my tongue and want to say, “I hate to tell you, but it’s not just you!” This is one of Akira’s gifts. He makes everyone he encounters feel special. At this moment in time, Akira is nonverbal, he is not walking, he is hard of hearing in both ears, has hypotonia, and global delays, and yet, regardless of all the things some people think he might be “missing,” he can connect with people on a level that makes everyone feel deeply seen and deeply loved. On days where my anxiety creeps up on me, when I worry about his future, this is what I always come back to: People feel good in his presence. He is like sunshine. My tiny mighty sun.
There is no match for Akira’s translocation in the genetic database. Doctors always said to us, “We don’t know how he will develop; he could plateau, watch out for that.” He has yet to do that. He does things in his own beautiful way and on his unique schedule. For me, the unknown can feel so terrible and terrifying. And yet, there is an advantage to not having a pure diagnosis. No one can say, “This is what’s going to happen. This is what he will do, this is what he won’t be able to do,” and therefore, we can believe anything, and everything is possible for Akira. And we do.
We have seen countless doctors, started so many therapies, early interventions, and read so many books. At some point, I had to come to understand: “My child is not a project. We are not working on an Akira improvement project here. He doesn’t need to be fixed.” I really had to acknowledge that Type A need in myself. So much pressure and emphasis is put on “Oh, he’s got to make the milestones,” and I had to really take a moment, “Hold on. What the fuck is a milestone? Does he really need to make them? Whose milestones are they? Why are they there? Can he just be allowed to be himself?” That was a deep learning moment for me. I’m still learning.
At some point, I had to come to understand: “My child is not a project. We are not working on an Akira improvement project here. He doesn’t need to be fixed.”
At the same time as loving my kid for exactly who he is, it would be a lie to say I have not struggled with grief. Grieving for what I thought my life would be like, for the life I thought Akira would have. Becoming a mother shifts your identity. I felt like my entire identity had been jolted at Akira’s birth, and then once again when I left the NICU — I felt deconstructed, reconstructed, and resurrected. I was reborn. Every atom of my being was different. It felt incredibly isolating, and some days I felt fear was my only friend. I found it hard to relate to my friends and family, especially those who had neurotypical kids. I feared going to their houses, I feared the resentment bubbling up in me, seeing how much more simple parenting looked for them. Why does my son have to deal with so much in his life? It was painful to see younger kids “overtake” Akira developmentally, and I had to school myself, “Don’t be jealous, don’t show your rage.” I felt shame for these feelings. It’s hard to even admit them now. I felt guilty for wanting what they had. It has been a process to let go of this.
The last four years has taught me the insides of the word “resilience,” which I am grateful for, but if I’m honest, it is an exhausting lesson. People have complimented me with, “You’re so strong,” and I say “thank you,” but sometimes I want to respond, “ Fuck you!” Can’t I just be vulnerable? Is it OK if I’m just a mess? Do I also have value for being a puddle on the floor?
I’ve struggled with the tendency I see to make everything surrounding motherhood and babies so blissfully positive. Motherhood through the filters of social media can feel pretty isolating. My experience of motherhood has been a rollercoaster of emotions and mental health challenges. I’ve been diagnosed with postpartum anxiety and postpartum OCD. It’s not something I’ve seen written about frequently. Whereas postpartum depression was something I knew about, read about, was on watch for, I had never heard of postpartum anxiety; I simply thought I was losing my mind.
Even in the darkest days of Akira’s first few months, I knew something was “wrong” with me, but I kept saying to myself, “Well, I can’t have postpartum depression because I don’t feel depressed.” I felt the opposite: super amped up, hyper-vigilant, incredibly controlling, profoundly fearful, and highly productive. I could not sleep at night. The intrusive thoughts were constant. I would say no to a lot of things, my fear being “What if we get into a car crash on the way?” “What if I drop the baby?” “What if… what if… what if…” This was postpartum anxiety. And four years later, I’m still dealing with it. I’m now getting treated for it. I realized, especially as Akira’s getting older, more independent, and more mobile, I cannot be the mother who wraps him up in cotton wool to soothe my own anxiety. I’m still learning.
Now I choose to dream for a world where Akira is accepted for exactly who he is. I dream for a world where Akira has equal opportunities, and believe that it is more than OK to shoot wildly for the stars because the universe is beautiful, mysterious, and belongs to no one and everyone regardless of abilities.
My life as a mother shifted into a different gear when Akira went to a program in Los Angeles for 2-year-olds with disabilities. It was beautifully run by speech, occupational, and physical therapists. Akira started going there for two hours every morning. Akira made new friends, and I quickly became friends with their parents. Suddenly I had people I could relate to. Our kids would play, and we would laugh and cry about how hard it was and how amazing being a parent is. How awful it is, and how lucky we are. We stuck together, trading specialists, and therapists, and horror stories of IEP assessments. They became my people. I really feel it was a pivotal moment in my life. I felt less lonely for the first time. I felt hope, not just for Akira, but also for myself.
I left the hospital so afraid to hope for too much. When the neurologist told me “not to expect much” from Akira, I believed I should not have dreams for him and there was something shameful about having them. I was so afraid he would die I didn’t dare dream. Over the past four years, that fear and shame thankfully dissipated, and Akira is leading the way, showing us his light, his determination, his curiosity, his love. Now I choose to dream for a world where Akira is accepted for exactly who he is. I dream for a world where Akira has equal opportunities, and believe that it is more than OK to shoot wildly for the stars because the universe is beautiful, mysterious, and belongs to no one and everyone regardless of abilities. I believe Akira has big things to do in his life, he is a powerful teacher. Whatever he chooses, it is my job, and my joy, to advocate for him, support him and guide him on this big journey of his. We are in this together. I am his mother. And I still know nothing.
As told to Taylor Harris.
Though we’d never met, I quickly found myself in old friends territory with Mickey Sumner when we collaborated on this essay. My job was to interview her, to help her shape her postpartum story into an essay that she would write and share using the transcript of our conversation. We were nodding and gasping and tearing up as we unraveled bits of both of our stories over Zoom. Each of us has a young son with genetic differences but no clear diagnosis or understanding of what to expect for their development. Each of us expected motherhood to be one thing, and found it to be something else entirely, more incredible and haunting than we could have imagined. We spoke as strangers and yet close friends. We spoke for ourselves only, and yet I couldn’t help but consider Mickey’s story an invitation to any mother whose world has been shaken by the very child she adores. — Taylor Harris