On the Edge of Normal: My Motherhood Story

My daughter, who is almost 12 now, has autism. She is afraid to swim, so she attends year-round swim lessons. Each week, the teacher asks her to jump in the deep part of the pool: “On the count of three, I want you to jump in, okay? One…two…” She pauses before three, and begins the count again. “One…two…THREE!” Enthusiastic threes aren’t enough for my child on the spectrum. Jumping into a pool means my daughter is going underwater, facing the biggest fear of her life.

Eventually she did jump in—and after resurfacing, she scrambled for the wall, screaming, no doubt traumatized, like the fear had been delivered from her head and born into her body. It broke my heart to see her this way. But this first plunge took her one step closer to feeling normal about swimming, and every plunge thereafter has purged a layer of fear, and will eventually give way to normalcy.

I have three redheaded children. My first child, a girl, was born on her due date with no known issues. Five years later, after many developmental delays, she was diagnosed with autism. My second child, a boy, was born at a healthy weight, with two large marks on his stomach. Three weeks later, he was diagnosed with mastocytosis, a rare blood disorder. My third child, a boy, was born once ounce heavier than his brother, but had trouble nursing. Three hours later, he was diagnosed with a bilateral cleft palate.

As you can see, normalcy isn’t something I deal with as a mother. But it became normal the more I learned about them. Just like my daughter, I’ve stood on the edge of my doubts as a mother, wishing I didn’t have to swim the unknown waters of my children’s diagnoses, wishing I could just have normal. I never expected to have children who had challenges, who weren’t normal in the eyes of the world. Yet here I am, with three differently diagnosed children, treading an ocean of uncertainties with a tide I have no control over, struggling to keep my head above these waters of isolation, confusion, and fear. We all stand on our own “edges of normal” for a while until we are ready to jump into the uncertain waters.

Before my daughter was diagnosed with autism, my mind was clouded with concerns. I wondered why she didn’t smile all the time or make good eye contact. I worried about her delayed milestones. Instead of facing these worries, I tucked each one neatly into the farthest corner of my mind, a hidden pocket in my brain, thinking that if the worries rested there, they might not amount to anything. Besides, facing these concerns might mean my cream-faced, button-nosed redhead wasn’t normal, and I certainly didn’t want that. Normal was safe and predictable, and in my comfort zone.

So I tiptoed on that edge until I was given the first push, or nudge, closer to the edge, by a neighbor who knocked on my door when my daughter was 17 months old. I invited her in, and she sat down on my scraggly thrift-store couch with a very worried look, and said, “I think your daughter has autism.”

 

My hidden brain pocket was ripped open in an instant. Every worry I’d had since her birth was thundering before my eyes, and soon that thunder gave way to rain. Tears, sobs, and big heaving breaths filled that tiny apartment living room. Hugs were shared, and after our goodbyes, I sat with my redhead on my lap for a good hour until the rainfall dissipated. I tried telling my brain that what my neighbor said wasn’t true. Then Google became my new best friend—sometimes it confirmed my hopes, other times, it confirmed my fears. So I said goodbye to Google and kept walking the balance beam between normal and un-normal, and then my second redhead was born.

However, with my new baby boy, there was no teetering on the edge of normalcy. With him, I plunged right in because he developed strange symptoms after his birth. Several times a day, his entire body would slowly turn red, like he had a horrible sunburn, and the marks on his stomach would blister. This wasn’t normal at all, and I knew it. I was a mom on a mission, and when the pediatrician couldn’t figure him out, and the dermatologist was booked solid for months, I had to do more. When Googling and calling and pleading and begging and crying were getting me nowhere, and my infant boy continued to exhibit these frightening symptoms, all I had left to do was pray.

And the very next day, my prayer was answered when I got a phone call from the dermatologist, saying they had a cancelation. As I drove to the doctor’s office, I thought about how my child’s un-normal symptoms could only be made normal by one thing: a diagnosis. I was willing to go to any lengths for answers because his life was on the line. The dermatologist took one look at my newborn and declared “mastocytosis” the cause of all his symptoms—and my new normal was defined with one word. Though I was scared of what lie ahead for him, at least I wasn’t treading in uncertain waters anymore. I could move on normal because I had moved past the unknown.

And so while swimming in the calmer seas of certainty with my newborn son, I had to jump out at times and prance around on that normal edge for my daughter, because I had no answers for her. Then I got my next push toward the edge, this time from my mom. She gave me a book, which I devoured and highlighted and dog-eared and margin-scribbled. Then came an official diagnosis of sensory processing disorder, and the following year, the autism diagnosis.


I stood looking out over the edge into the giant ocean of autism, and had no choice but to jump in. And while treading the choppy waters of a fresh autism diagnosis for about a year, I finally set foot on an island of self-discovery: maybe she wouldn’t be considered normal to everyone else, but she’s normal to me because she’s mine. This was going to be my new normal—I could either embrace it or be afraid.

Like my daughter’s fear of water, un-normal things can’t be normal until you face the unknown and accept it as truth, as reality, as your inevitable life. You have to jump in all the way.

But you know, swimming is exhausting, so my husband and I waited before having another child—better to stay afloat than to drown. And when life felt normal again, our own kind of normal, where we could at least touch our toes to the sand, we discovered I was expecting for the third time. So, hoping to put all un-normal behind us for good, we decided to pray every night for one thing during this pregnancy: a normal, healthy child.

Sometimes prayers aren’t answered the way you expect. When our third redhead was placed in my arms and had trouble nursing, and the doctors whisked him away for observation and kept him for many hours, that familiar feeling crept into the hospital room: un-normal. I didn’t like having that feeling again. I had just tossed it behind us, praying it would never come back, but it did: a team of doctors came back to explain that our new baby, just a few hours old, was born with a birth defect, a bilateral cleft palate, and would need surgery to correct it, and would not be able to breastfeed.

A birth defect? A surgery? But we prayed! We prayed every single day! How could this happen? Oh, why did we pray for normal?

We stared at the clock ticking, listened to the monitors beeping, felt the cold of the steel beds and tile floors, breathed the scent of alcohol and soap, and didn’t say a word. Once again, normal had evaded us. But this time, it was going to be different. I was prepared, because un-normal was something I had experience in—after all, I’d done it twice before. I was beginning to think that maybe, just maybe, there was a reason why these special babies came to us, to me, to be their mother. Three out of three had to mean something.

So when the doctors were puzzled as to how to get our newborn to eat, I noticed that he could keep a pacifier in his mouth, even though cleft palate babies lack suction. I suggested that we attach a small tube to a syringe, and feed formula into his mouth as he sucked on the pacifier. It worked. The team of doctors was astonished. “How did you think of that?” They asked. “I’m not sure…it just came to me. I’m his mother,” I replied.

He was kept in the NICU the first night, but once they saw how well I was feeding him with the syringe, they let me keep him in my room. By the third day, one of the doctors said to me: “I’ve never seen a mother so confident in her ability to care for a child with a cleft palate so early on. Usually, the babies are kept here for at least a week. How did you figure it out so quickly?” I don’t remember what I said, but if I could answer him right now, I’d say: “I’ve already swam a lot of oceans with my two older children. This new one seems more like a jump in a puddle.” We took him home after a normal hospital stay of three days. Did you hear that? Normal.

So I ask you, what is normal, anyway? Who can define normal? Normal for whom, compared to what? Doesn’t what you’ve been given become normal once it’s understood and accepted? Normal is so relative. I might have teetered on the edge of normal in the beginning, because facing uncertainty is difficult. It wasn’t until I let go of my idea of normal and made the jump into that vast ocean of my fears that things became normal. And after what I’ve been through, I must say, I’m a really good swimmer now, too.