Magical People

At a neurodevelopmental appointment with my son I am reminded of the amazing people in our lives.

When retelling anything, my tendency is toward too much detail, context, too much information. Along with facts of his birth and a medical history too long for such a young child, it was hard not to mention certain people to our most recent new provider, neurodevelopmental. Listening to our story, she reassured, she was empathetic, compassionate. You had a hard time at the beginning, she began, words that bring tears to my eyes when said out loud. But you have these magical people who have fallen into your life to help. We do not have family here, instead we have Magical People.

From the beginning, when he was a newborn, it was striking how differently people treated me – the human kindness we are all capable of – both friends and random strangers. This first showed itself in all the supportive, caring responses when friends learned via social media that something was wrong and we were still in the hospital a week after my son’s birth. He was several days old before I found the courage to post the first photo. There he was, attached to numerous machines by tubes, wires, and patches monitoring his vital signs crammed here and there on his small, fragile body, enclosed in an isolette – an image I was still processing, not yet ready to share. Ours did not match the newborn photos that popped up in my newsfeed from time to time. In that first photo, a selfie of course, I am holding him, tubes, wires and patches all neatly wrapped up, tucked beneath a NICU baby blanket. You know the kind of blanket I’m talking about. He fell right to sleep, a rare moment in his mom’s arms.

Messages from caring friends buoyed me more than I knew was possible. Friends, some I hardly knew, sent personal heartfelt messages. If there’s anything you need, let me know. Once he was finally home, they came to visit – people I would not have expected, people I will never forget.

Rob was our first Magical Person, before even leaving the hospital. In the dimness and uncertainty that surrounded my son’s birth, Rob was a constant, smiling, beaming presence. He and his daughter occupied the hospital room next to ours, after my son was downgraded from the NICU to the medical floor. He was one of few infants on that floor. Rob was there to let me know I was not alone, that everything would be Ok.

Eve was Jasper’s first babysitter. She fell into our lives easily, a connection through my prenatal yoga instructor. I didn’t think so at the time but Eve was exactly what both Jasper and I needed. He was almost three months old and still felt impossibly fragile and small and had yet to have a normal EEG – he will never have a normal EEG. Eve was a pediatric nurse for ten years, she adored babies, and she adored Jasper. We did not click at first but I stuck it out because she loved my son. Although she was a nurse – by she then worked in geriatrics, the opposite end of the spectrum – she was far from conventional. It was hard to ignore the cloud of patchouli that enveloped Eve. She no longer wore patchouli, it simply seeped from her pores from years of over use. Originally from Scotland, she was in her fiftes, unpartnered. She had short, cropped, dark auburn hair, and adorned herself in the most brilliant colors she could lay her hands on. Eve did not drive but rode around our Seattle neighborhood on a hundred pound vintage bike. She often told me Jasper needed more tie-dye in his wardrobe (he had none). No matter how I had dressed him, after being with Eve, Jasper would be wearing the most colorful ensemble upon my return. Eve was a yoga guru, or instructor. She sometimes wore Jasper in a bright pink Baby Bjorn while leading her students through yoga poses in her small living room. Her home was equally hyper colored, something out of Alice in Wonderland. Eve was with us for about six months. When I decided to move back to north Seattle, I took my time telling Eve. It would not be logistically practical for her to watch Jasper anymore. Eve had a wisdom I had grown to appreciate and crave, that kind of motherly advice that was missing my whole life. We always chatted for a good while after babysitting. Moving day was hard – saying goodbye – tears flowed out of nowhere. “I don’t know what I would have done without you.”

Dan is a friend I barely knew in the before times. A vague bike racing connection, specifically cyclocross, the name was familiar, but would I recognize him outside of the bike racing world?? Dan was one of those early visitors. After we moved, he offered to watch Jasper. Can Jasper come over for the afternoon? You can go for a bike ride, how long do you need? No hurry. No hurry, are you for real?? Dan had two kids, so Jasper spent the afternoon with a family. The bonus was that Dan is a firefighter and his wife a NICU nurse at a top local hospital. My son could not have been in better hands.

Jeannette is a fairy godmother. We met in a Writing Children’s Literature class. My children’s literature story was of course, about Jasper, and remains unwritten. Jeannette was moved by our story, curious about his progress, whether we had family here, and if she could help. She’s a retired preschool teacher who loves babies. Back in Michigan before retiring she volunteered in an infant room, with special needs kids. And she is an artist. Jeannette’s genre is literally fairies, she writes and crafts about them. Each tiny fairy is an original creation, tiny sweaters and mittens knitted by hand. The fairies live in fairy houses made from dried gourds. Jeannette spends time with my son every week. When I open the door, Jasper reaches for her like a grandmother. He gives her Big Hugs, the kind he gives me. Once, when heading out for a brisk bike ride during Jeannette time, she told me, You get your endorphin fix by riding your bike – I get mine from Jasper.

You might not know it but airports are filled with Magical People. Like on our flight home from DC, the only time my mom got to meet her grandchild. A long flight, following a long day with distant family. Jasper wasn’t a year old yet, still an object of attention. He’d recently tapered off all seizure meds, our kind of milestone. The short Seattle-DC visit meant I was reeling from jetlag, tired before our evening flight had begun, I would be more tired by the time we landed. Next to my typical aisle spot, a man with long black dreadlocks occupied the middle seat. It wasn’t long before we started talking. The man had four kids of his own, back home in Sudan, he told me, while he worked in DC. He would love to hold Jasper on the flight, “So you can rest.” My son was already asleep and perfectly content with the transition. Sleep did not come for me because I was on a plane. Closing my eyes, I wanted to fall asleep but each time, feeling that falling sensation at 35,000 feet was too much, and woke me up. Jasper stayed put in the middle seat all the way to Seattle. The man held Jasper while I gathered our carry on. Handing him back to me, this total stranger who held my sleeping child for six hours and I hadn’t even asked his name. This happens a lot. “I’m so sorry – I didn’t get your name??” “Gabriel – my name is Gabriel.” Gabriel.

Years later, we board planes early even though my son is well past the under two mark. Following the announcement for military, parents with young children, people with disabilities, those who need extra help, we step up. We fall somewhere in there, the definition of needing extra help. Determined to board the nearly empty plane with my son, it doesn’t come easily. My son appears a happy, smiling, able bodied child. His now invisible disability makes it hard for others to see we need help. Taking a deep breath, I brace myself for looks from other waiting passengers. Just then, an older man I hadn’t noticed is standing beside me, “Go on and board early,” he urges, “you have him – you have to take care of him.” Turning and smiling in gratitude, we move toward the jetway. When I turn back to look for him, he is nowhere to be seen, his message delivered loud and clear.

Other Magical People include special mom friends – other moms with special needs kids of their own – who offer to watch my son when I have a job interview or an urgent medical appointment of my own. They make the work of caring for more than one child with a disability look effortless, and genuinely enjoy my son. There are Jasper’s teachers and therapists. He attends an inclusive school two days a week. Picking him up from class, his teachers say what a great day he had, he drank from a cup, or chose to do art, or put his mat away on his own after circle time. Simple things it had been hard to imagine he would ever do on his own. I feel such gratitude for them, what they do for my son, it is hard to put into words.

These Magical People fell into our lives. It was not a matter of doing the hard work of seeking them out – the Magical People found us.

Originally published November 28, 2012 and slightly updated.