Just a few months ago, I was sitting in my 2-year-old son’s hospital room during his 4th of six hospitalizations to date. We were close to discharge, his asthma symptoms having abated again after an onslaught of medications, and I was desperate for J to sleep. He was exhausted, but the combination of unfamiliar surroundings, frequent interruptions, being hooked up to various medical equipment, and medications that make him restless and jumpy never resulted in much rest for him or us.
He finally fell asleep on my shoulder while I sat and rocked him in a hard, creaky wooden chair that had become all too familiar to us during our stays. J felt heavy and sprawling as I held him, and I had the thought that if these repeated hospitalizations continued, I didn’t know how much longer he would still fit in this chair with me. My arms, shoulders, and back ached from holding him up. He insisted on being covered with his thick green blanket while holding his favorite stuffed penguin, the combination of which soon began to make both of us sweat. He shifted and turned throughout the nap, as if he was attempting to mold my body into some kind of memory foam mattress for his comfort.
I stayed as still as possible because he needed this sleep. And I started to reflect on this whole nightmare, which had begun just before J’s 2nd birthday. This has by far been the most difficult experience of my life. Nothing has felt even close to as painful as watching my little boy struggle to breathe while we desperately tried everything at our disposal to alleviate his discomfort. Then we would get him stabilized in the hospital, take him home, and it would happen all over again. And again and again. My daily life was blanketed by fear. Hypervigilance over every little cough and breath, anxiety and worry about an exacerbation, all of which were almost paralyzing at times. J wasn’t always sick, but when he became symptomatic, things went downhill very, very quickly.
Sitting in J’s hospital room, I also thought about the other children we had seen on the pulmonary floor of this children’s hospital. Their rooms decorated, indicating how long these kids had been confined to such a sterile and colorless space. I felt both incredibly fortunate and horribly unlucky at the same time. While we don’t yet know what triggers J’s symptoms or why they take such a severe course, he does recover. We know we won’t be dealing with this frequency or severity of symptoms forever, but so many of the children on the pulmonary/CF floor will continue to be very ill lifelong.
I found myself thinking a lot that day in the hospital about how to be the best mother I can be for J. Many days, the worry is suffocating. All we can do is get through each minute, hour, day, with the threat of hospitalization looming over our heads. But life still happens during the intense worry, frustration, and fear. No one reminds me of that more than J himself. While I’m counting the days we have stayed out of the hospital, hopeful that we can string together another week or month, he is growing. I think what saddens me the most about everything we have been through the past few months is that all my worry and fear makes it difficult for me to truly enjoy this amazing time in his development that I know I can never experience again. He will only be an energetic and inquisitive 2-year-old once, learning new phrases and testing his capabilities and limits.
Against all odds, in between hospitalizations, we made it to California for a vacation and family member’s wedding. He wasn’t completely healthy when we were there, but J’s first trip to the beach was entirely magical for him. I, on the other hand, struggled to stay in the moment while I kept an ear out for the sound of his breathing against the crash of waves and children playing. I was aware of what I was trying to balance during that trip, and I resented both the circumstances and my own mind that prevented me from fully basking in the experience of my child playing in the ocean and sand for the first time. I hated that while J was so full of joy, I felt the heaviness of inner conflict and fear.
I worry about how the emotional trauma of all these hospitalizations and medical intrusions will affect J as he grows. At times I believe I haven’t done my job as a parent to protect him from repeatedly experiencing such distress, and I wonder if what he has gone through makes him feel unsafe or distrustful of the world and the people around him. I know he looks to us as his parents to help him understand what’s happening and what to expect. While this feels like immense pressure under stressful circumstances, it’s also an incredible opportunity and challenge for both J and me.
I have struggled at times with wondering if I should do a better job of pretending. Although I can keep a pretty straight face during sessions as a therapist, in my personal life, my emotions are written all over my face. Combine that with a child who is highly attuned, and I’m quite certain that even if I tried to hide my fear and anxiety from J, he wouldn’t buy it. And is that even what he needs? The longer we deal with this, the more I believe he needs a mother who feels and acknowledges her emotions – all of them. Because he feels them too. My job is not to teach him to be oblivious – I want him to be aware, to feel and notice all of it, and to acknowledge the unique mix of emotions he is experiencing in a given moment. I could use the reminder to do this more myself.
At home the other day, I watched J delight in dropping a plain piece of white paper in the air, watching it float and dance its way to the ground. I marveled at the thrill he felt in watching something so seemingly ordinary, while also listening to his breathing as he bounced and giggled around the room. Was I engaged enough? Did he sense that I was worried about his level of exertion? I ask myself these questions all the time. While I can’t pretend I’m not concerned, maybe my worry doesn’t have to take me away from him and these moments, spiraling wildly down a road of scary thoughts and worst-case scenarios. I nudge myself towards feeling and holding all these disparate emotions at once, juggling and balancing their various weights as I try to decipher what J and I both need. If this process sounds complicated, it’s because it often feels complicated to me, especially at this juncture in my life as J’s mother. But this time, almost without thinking, I suggested we drop two papers in the air at once. When his eyes lit up and he squealed with glee, I think he knew I was with him.
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