Two days after our first Maine blizzard in 2005, a long-awaited soul peacefully entered this world. My husband and I finally welcomed our first child after losing two pregnancies. This little spirit’s timing seemed all-knowing: he waited out the storm in utero so Daddy could unfreeze the bathroom pipes and the snowplows could get through for driving Mommy to the hospital. This sprite then waited until Dad had thoroughly enjoyed the New England Patriots’ championship win. He even gave Dad the ultimate excuse to miss work the next morning: the birth of his child. When our precious soul arrived, he was tucked inside an adorable 22-inch-long body. He was healthy, and he was ours. We named him Miles Julian, which means “beautiful soldier.”

What started as a wondrous jumble of cuddles and messy diapers and happy wellness checks quickly faded into darkness. We had no idea that our lives would soon be turned upside-down caring for our unwell child indefinitely, and fighting for his future. We had no idea that having a child of our own who we loved so much, but could not adequately help, could bring so much grief.

When Baby Miles was five weeks old, S and I were shocked by the pediatrician’s news that he has Down syndrome. We cried on the beach and tried to reframe our shared future with our usual positivity. Still reeling from this botched late diagnosis several months later, I watched our baby start with frightening neurological symptoms while nursing one morning. Just days later, Miles was diagnosed with a rare and catastrophic pediatric seizure disorder called infantile spasms. It quickly escalated to over 100 subtle but developmentally devastating seizures a day. Infantile spasms completely stole our baby from us as we tore our hearts out trying desperately to save him. It was a race against time to give him his best chance. The impossible imperative was to gain control of every single spasm, when these horrible seizures are mostly resistant to the available treatment options.

Despite our valiant medical efforts and some important successes, our precious son is severely disabled and medically fragile, and requires total care. After the diagnoses, we found ourselves functioning as caregivers as well as parents. From the start, we committed ourselves to keeping Miles home all the days of our lives, but each day is difficult. As Miles gets bigger and we get older and continue to promote his independence with activities requiring more of our physical assistance, our caring for him at home gets harder.

This is Miles’ story from my perspective as his mother. I also happen to be a professional writer. This has ironically given me zero immunity from the writer’s block I have experienced in trying to share our complicated journey. It is a story I’ve been trying to write for literally years. Recently I’ve been buoyed by a wonderful and supportive writing group that gets inspiration from the accomplished author Sarah Orne Jewett. I’ve been schooled again by simply rereading my favorite childhood books and marveling through discerning eyes at their gorgeous simplicity. Finding the right words while finding the energy in the face of my caregiving exhaustion makes the fruition of this blog quite a personal victory for me. Thank you for giving me an audience, even if only for this page or this moment.

I wish this could be Miles’ story in his own words. It pains me to have to describe him as nonverbal, especially because he is very social and communicative in his own ways. Because he cannot speak per se, I am his willing mouthpiece and advocate whenever necessary. By serving his myriad needs, I have learned how to be a very squeaky wheel, and that has served us well. I hope to do right by him in the way I tell my version here.

This is also not my husband’s story. S has experienced fathering Miles in his own way, which is quite different from mine. Thankfully, our styles and temperaments complement one another. His more relaxed approach calms down my Type A qualities. We are a team that has made impossible decisions together for our child. We have handled countless medical scares and emergencies. We have lived in the hospital for months with Miles. We have nearly lost him more than once.

I’d be lying if I said this wasn’t also my story as Miles’ sometimes-resentful primary caregiver. I often feel trapped and claustrophobic with the demands of the job. I desperately need freedom and space, but also refuge, whenever possible. The truth is that my unconditional love for Miles, and my difficult feelings about his care requirements, co-exist within my heart. Some days I am furious at our situation, but I never love Miles any less for it. I daresay that most caregivers would be greatly helped by being encouraged to fully express their true feelings without being judged as unloving. Trust me—the two emotions are not mutually exclusive.

For families like ours, life with a chronically sick child is often lived in survival mode, full of struggle and unseemly emotion and, yes, outbursts. It is raw. Love is sometimes the only way we get through.

I’d be very remiss in not sharing that Miles has a healthy, typically developing younger brother who brings us great joy and makes our hearts even more swollen and fragile. Sticking with our original family plan and having another child after Miles was scary, but also the most normalizing and healing thing we could have done. Our joy at having Z enabled us to remove our “sick-kid blinders” to a degree. It also somehow made us appreciate and celebrate Miles even more. Our two sons could not be more different. For Z, we have challenges upon us in making him feel that he gets equal attention and love from us. Siblings in families like ours can suffer quite a bit from the fallout. I am witnessing firsthand that it can be a quiet suffering, so I employ my advocacy skills for him as well. Some days, I only know how to make things better by hugging it out with my precocious and sometimes-lonely little boy.

Fighting for Miles’ cognitive life and his very future created considerable fallout. Our marriage was ransacked for a number of years by the shared loss, stress, and grief that S and I experienced. My will to live disappeared for a time, when our baby was seizing all day and we could not make it stop. Hope left our marriage, and pain and despair became our daily food. S and I just wanted our mostly idyllic life back. Most of all, though, we wanted the healthy baby that had been promised to us for so long in our dreams. We had kissed him and held him in our arms. It turned out that that perfect, brilliant Miles was a figment. We wanted to wake up from the nightmare of a doomed life for our child. With years of devotion, and a couple of miracles, we have turned “impossible” into “bittersweet.” We have grown into wisdom. We take little for granted anymore.

This is my story of trying my best to love and lift up my totally reliant son, my gifted and needy other son, and my devoted partner and best friend. It’s a survival story of locating hope and joy once again. My work of healing and finding meaning never ends.

This motherly love inside compels me to tell the world how having an utterly helpless child has redefined and reprioritized my own life entirely.