A Boy's Life, A Girl's Life

Ann, of Salvageable asked me, “What was the best advice ever given to me?” I had no idea how it would manifest, but it was, “Remember, Lori, sometimes it’s not about you.” What? Not all about me? You must be kidding, right?

He was born yellow and came out crying and stayed that way for a long time. Jaundice, colic, and a little problem with his heart and lungs figuring out the proper beat to life. He spent his first five weeks in neonatal intensive care unit, starting out in the safety of the very back of the big room full of tiny little fragile dreams and futures full of questions. His bottom was clothed in a diaper so small it fit comfortably on a Cabbage Patch doll. He sat nameless and without visitors, except for the volunteer grandmothers who came by and sat in the rocking chair and wrapped him lovingly in a quilt, rocking him and cooing him to give his rigid body, racked with pain, some comfort. To give him a sense of belonging to the world he had not chosen, and entered far too soon. For months he had laid safely inside the body of his birthmother, instinctively shielding from harm the other delicate and even smaller form growing there. The scarily tiny girl was covered with a fine dark hair who if you happened to get a mere glimpse of, you might think she rather resembled a baby monkey clinging tenaciously to her tenuous existence. Like a good big brother, he came out three minutes ahead of her just to make sure all would be well for her.

Eventually, after weeks passed and no one came to visit, the nurses named them Jason and Janey. Just to have something to call them as they poked and prodded them, restarted their breathing, inserted tubes, and soothed the crying. Day by day, their strength grew and they moved closer and closer to the double-wide swinging doors that led from NICU to the rest of the hospital. It was a right of passage. They would survive.

After scrubbing for what seemed like hours and covering myself in crisp, sterile clothing, head cover, and mask, I walked into the large room full of the sounds of unsatisfied babies speaking in the only voice they had. I heard the voices of parents frantic with worry, voices full of resignation, and watched nurses who moved with determination from baby to baby, ensuring vitals were checked, tubes adjusted or feedings completed.

With trepidation, I looked into the first incubator and saw this furry little lump of sassiness. Her lower lip jutted out and I could see it written all over her face, “Oh yeah, says you.” She was scrawny, but she was a fighter. It was as though I could see through her to the future - she’d be okay somehow, no matter what. Her fingers were the tiniest things I’d ever seen. Her belly button stuck out a mile – a hernia, I was told. She had dark spots all over her back – Mongolian Spots, I was told. I saw bright, undeveloped eyes taking in all the fuzzy view she could. She made me smile.

I then looked down at this boy, with a deep yellow pallor and wearing a little yellow cap to match, mittens and boots, covered in a foster grandma’s homemade quilt. Much larger than his sister, he did not look pleased at all to be here, and less pleased to be disturbed. What I saw was a child who would need my help. This child would need more to find his way. He was me – he, like his breathing, would have its own erratic beat.

The doctor looked down and said, “These types of children can have any number of problems ranging from mild to severe, and we don’t know what that will mean. They could have brain damage, there is a possibility they will not develop fully, we don’t have health history, we don’t know much.” His academic uncertainty and the certainty in which he stated what he thought the obvious astounded me.

I picked each up and held them, terrified they might break from even my gentlest touch. In that moment, they picked me. I felt it.

They’d not take their first steps until 18 months. They’d not say their first words until months after most babies. Their fingers wouldn’t work right, movement was clumsy and uncoordinated. They couldn’t hold scissors like their preschool classmates or race around the playground. Their speech was impaired. Their eyesight was impaired. There would be epilepsy and Guillan Barre to deal with, setting them back even further. I would be told that if I was lucky, Em would maybe someday be able to wipe tables at McDonalds.

There would be good teachers and bad teachers. Fights with school systems to get the maximum special education services. Teachers to be reminded of educational goals and that I was there to make sure they remembered. Teachers who had trouble remembering they had the quiet, painfully shy students in their class. Teachers who would move mountains to stretch them even an inch more. Patience when they had gone as far as they could for the moment. Doctors to prod to advocate on their behalf. Appeals to be won, logistics to be resolved. The cruelty of children to be cried through.

Em (no longer Janey) and I were driving in the car after her IEP (special education plan) review on Thursday. I had just heard from all of her teachers that they love Em. No one tries harder, no one smiles more, and no one is sweeter—but the girl has an edge. I love an edge. Her progress is still very slow, but she makes progress every year. She gets along well with her classmates and the teachers. They all want a class full of Em’s. She has a wide range of friends, some of whom joined her for a birthday sleepover Saturday. It wasn’t always that way, she went years having no one to play with but her brothers. Her bright eyes still shine and that jutting lip is still present in moments, but more often, it’s replaced with a prize-winning smile and laughter that saves me from the sometimes dull rote of life. She’s funny and observant and loves sculpting and painting and reading and fuzzy puppies and small children. She’s loving and empathetic – her art teacher has a terrible class – and Friday, they made the teacher cry. Em related that she waited until after class and, as is her custom, helped her teacher clean her classroom, but not before giving her a hug and telling her everything would be okay. I almost cried, because I cry over everything. And, for Em, it will be okay.

The other night, I picked up J-Man (no longer Jason) at a party. I have never seen him so happy. Not ever. He was laughing and silly. Carefree. My boy finally found carefree. He’s trained himself to be a friend – despite his inclination to hold people at bay. His friends of many years hang together because, I think, they get that we all have our quirks. J-Man, despite his innate discomfort with people, has a longing to be part of what people have to offer and who will accept him for all that he is, just as he accepts them in the born-an-old-man way he has about him. I almost cried, but then, I cry over everything. He’s a writer, a thinker, a runner, a dreamer. He’s logical and pragmatic. He’s both contradictory and predictable. He’s still got his own beat.

This week they celebrate their 15th birthday. They stand tall, healthy, and beautiful. They have friends, they have dreams, they have their own vision of their life and how they are going to get there. They are survivors.

I keep remembering, even today, that it’s not all about me. Never was.

Happy Birthday babies.