The Dreaded Sleep

When G was a year-and-a-half old my husband got a job across the state, so we packed up and moved. The kids seemed to go with the flow quite smoothly- MUCH easier than we had expected.

Then bed time happened. My sweet son would slowly progress from sleeping soundly into moans and thrashing, then hit the peak of screaming, flailing and hysterics. For hours. He never opened his eyes, just screamed. And screamed. And flailed and screamed. Stiffened and wretched. We couldn't wake him. We tried shaking, snuggling, rocking, yelling, whispering, singing, television, cold water- you name it, we tried it in an attempt to wake him from these hours-long fits. Nothing worked, and my husband worked nights so five nights of the week I was alone to deal with it. I would hold him, often restraining him because otherwise he'd be unconsciously bashing his body and limbs on the wall, the dresser, his bed rails, etc. I would just hold him, praying aloud for peace and comfort for my suffering son, and for strength and grace for myself. I would often get to the limit of myself and just sob, begging my son to tell Mama what was wrong, tell Mama how to help, what to do- anything, I would do it to help my baby boy. Eventually he would just slowly come down from the hysteria and seem to slip back into peaceful sleep.
While the night terrors were worrying and tiring, so were the other nights when his insomnia took over. I suppose insomnia is the wrong word for it, because he did go to sleep initially, though he was restless and thrashed around for an hour or more before sleep claimed him. Inevitably, however, I would wake up at some point during the "good" nights because I would think there was a prowler in the house. While we were never burglarized, we did have a prowler in the house- a toddler who silently meandered through the rooms, pacifier in his mouth, just playing in the silence. We could not gate him into his room because his sister needed to have access to the toilet, but we quickly learned to put a gate across the top of the stairs. Without it, he would go downstairs, open the fridge and cupboards and make a mess, get into any and every thing, climbing on counters, table, shelves, knocking things over, pouring things out, and sometimes just get lost in the darkness and begin screaming in fright.
During that summer my sister, brother-in-law and niece stayed with us for several weeks while my nephew was in the PICU at a nearby hospital. One night we went to bed late and forgot to put the gate up, and he meandered down to the living room where my sister and her family were asleep on air mattresses. The fright and subsequent screams from both parties woke the whole house up in confusion.
Once we began gating the stairs, we would often wake up to G playing in his room, our bedroom, or one of his favorite places- the closets. He seemed to love packing himself in the small spaces amongst boxes, towels, blankets, shoes, what-have-you, and just sitting silently in the darkness playing with hangers, random objects, a toy, or his hands. I woke with a start every time, my sleepy mind thinking some one had broken in and was rummaging through our home, despite the fact that my conscious mind knew it was just him. We learned to meticulously G-proof the upstairs- which was harder than baby-proofing, because he was bigger, smarter, stronger, and more clever than a baby, though more inquisitive and mischievous, too. Whenever I was awakened by his late-night play, I had no way of knowing how long he'd been awake and he was not able to tell me, because his vocabulary still consisted of, "Ma" and "Da."
Between the screaming fits and the late night play, I felt like I never slept because he only every slept during the day. He was an EXCELLENT napper- 3 or 4 hours after lunch time every day, like clockwork. When I'd try cutting back on the nap time in an effort to improve the night time, it was always disastrous. The boy did not take kindly to being awakened, and when I say that I do not mean simply grumpiness. I mean difficult to wake from his seemingly coma-like state, and when we did manage to wake him, he would scream inconsolably for hours. No, that's not an exaggeration- hours. It often lasted until bed time and later because he was so distraught on top of his usual restlessness and inability to settle into bed at night.
When I'd mention it to anyone else I often got the feeling they didn't believe me, or they thought I was exaggerating. Everyone, that is, but my mom. Whenever I'd mention G's sleep-time quirks to her, she'd just give me a reflective and almost puzzled look and say, "Wow. That sounds exactly like you as a child." That was the first of many times she would say that to me, making a connection between G's quirks by describing to me my own tumultuous and maddening "quirks" as a child.

How to Eat a Cupcake

When G was about 18 months old, we made cupcakes just for fun one day. He was dancing around excited, so I got out my camera to capture some snapshots of my sweet kiddos enjoying their cupcakes.

G gave me the perfect story of how one eats a cupcake using the stuff-and-heave approach:

Step 1: Shove the ENTIRE thing, paper and all, into your mouth

Step 2: Pull out the part that inevitably makes you gag because it's just too much

Step 3: Shove more in as soon as you can possibly close your lips to do so

Step 4: As soon as you are able to swallow the bolus of cupcake, repeat steps 1-3 with the paper wrapper

The Dreaded 'A' Word

At his one year check-up the nurse practitioner listened to our concerns regarding G's lack of speech and many-many quirks. Her immediate response: "Well, let's have him screened for Autism." I was stopped short. In my years of teaching preschool, as well as the internships and student teaching I'd done in many types of classrooms and environments during college I had worked with MANY truly autistic children. My son was not autistic. Her reasoning for wanting the screening done: his lack of speech. Really? Just straight to Autism- no speech evaluation with Early Intervention or anything of the sort? Research told me this was the fast emerging trend of pediatrics.
While I truly believe there are those with true Autism, in my honest opinion it is a fad diagnosis. Just as Attention Deficit Disorder and Attention Deficit Hyperactive Disorder were when I was growing up, it seems every child that is not society's idea of "normal" is being slapped into the Autism Spectrum. Not only is this a mockery of those who truly deal with Autism, but it is a disservice to our children and their futures. We're telling our kids, "You're not perfectly normal, so here- you have this disorder." Disorder. Just the word is enough to make a little kid feel further alienated from his or her peers.
The nurse practitioner seemed totally baffled when both my husband and I immediately declined the Autism screening. We knew our son and we knew something was wrong in his tiny mind, but it wasn't Autism.

The Trouble with Cake

Baby's first birthday!

Despite the fact that everything of the non-edible variety went in his mouth, G was intensely selective on what food he would actually eat. I heard time and time again, "Oh, he's just a picky eater," and "You cannot ALLOW him to be picky. Make him eat what you serve and that will nip it in the butt right away." Yeah, uh, that did not work. We would present whatever we were eating in baby-friendly size pieces and portions and put it in front of him. Some things he would gobble with gusto, stuffing his mouth full with so much he had to cover his mouth with his hands to hold it all in. As a result my husband and I became very adept at the finger-sweep to clear out the bolus of food he would create and choke on, but no matter what we did we couldn't get him to take smaller bites. If we rationed his bites and gave him only one at a time he would literally swallow it whole no matter what it was. Whole. No chewing. Just swallow. It was bizarre, but once again friends, family, and even doctors just said he must have a hearty appetite, he was clearly a big boy, and was just really hungry come meal time since he weaned himself from breastfeeding the week of his first birthday. We just added it to his growing list of what we called "quirks."

Cut off the messy frosting and cake is AMAZING!

   The things G wouldn't eat, however, was FAR longer than the list of what he would. At every meal we would make him eat one bite of each thing offered. A solid 7/8's of what we gave him he rejected with the involuntary heaves, gags, and hysterical screams until they fell off his tongue without a chew. Meal time became synonymous with G screaming unless we were having one of the three following: bread, pasta, or cheese. His mouth violently rejected most vegetables and fruits, especially leafy greens. They seemed to be the worst. It got to the point where ANYTHING green on his plate led to screams of terror. He wouldn't even touch them with his fingers to remove them from his plate.
   During these adventures in 'picky eating' we also discovered two odd contrasts: His hands could not be dirty, but his face always was. If he even had one thing that was sticky or gooey at all stick to his hands or fingers, he would erupt into screams again, flailing his little appendages in panic until he had flung it free or we had wiped them clean.
   At the same time, his face and shirt were always filthy. Always. It was like his hands were hyper-sensitive and his face had no feeling to the same goo. Should we try to clean up his face or shirt, he would scream like we were shoving chopsticks under his fingernails, where as cleaning his hands was rescuing him from torture. Another addition to the list of "quirks."

  

Sound and Movement

Once the binky came into his life, G was a new baby. I think we should have bought stock in Gerber, though, because we bought so many of the NUK pacifiers we could have paid the CEO's salary ourselves. We never wanted to be without one because of how much it soothed our little man, and because they went EVERYWHERE with us, we were always losing them.

   I was often told I needed to take his pacifier away so he would start talking, but I didn't care. He made enough noise in the first five months of his life that I was okay with a minor speech delay(if indeed the pacifier would cause that) if it meant a happier boy and more peaceful home.
   At about 9 months, G decided he could break away from Mama every now and then, and he wanted to move. He, of course, would not be doing it in the conventional style. Instead he chose his own style of Army crawl. He'd stretch his arms out in front of him, dig his fingers into the carpet and pull himself forward with his legs swimming out to the sides and only the tips of his toes helping to propel himself forward. As a former nanny I had worked with a child with significant gross motor delays and did her occupational therapy work with her daily to help her learn to crawl(at 18 months), so I tried a bit of that on my G. He would have NONE of it. He did it his own way and anyone who tried to intervene would get screamed at through clenched teeth gripping his binky, or screamed at and bit if his binky was absent. As always, my boy did it his way and his way only.

The first of many big boo-boos by clumsiness

   About the time he turned 11 months old, my boy stood one day and walked. He did it with such confidence you'd have thought he'd been walking around his crib for months while everyone else slept. He wasn't particularly graceful, but what new walker is? He had this graceful way about his steps, though, always seeming to be tipping forward with most of his weight on the balls of his feet and his tippy-toes. This fancy style of ballet-walking, however, meant A LOT of boo-boos. He was forever losing his balance and falling head-long into SOMETHING. One particular evening I had the night off and was doing some cleaning in the kitchen while my husband was working on homework in the living room when we heard a blood-curdling scream come from our bedroom. We both sprinted to the sound and found our little guy kneeling at the end of our bed with blood pouring from his mouth. A wet washcloth helped us briefly see inside his mouth and found that his two front teeth on the right side were pushed in and twisted, and a gouge of flesh had been taken from between the two. At that time our apartment was across the street from the hospital so I put the washcloth on G's chin, grabbed my wallet with the insurance cards inside into my husband's pocket and he ran out the door with the screaming baby. Our daughter and I quickly packed a diaper bag and shortly followed in the car. From what we could tell it seemed he'd walked into our bedroom and done one of his famous trip-and-face-plants into our bed frame mouth-first. Several hours, and a melted ice pop in the emergency department later, the doctors decided that stitches would probably be far more traumatizing than helpful, and his incessant binky-sucking habit would keep the saliva flowing and his wound clean.

Enjoying a hike from his tight and secure wrap

   Aside from crying and laughing, however, my boy never said much. He didn't coo or babble. As long as he was happy he just seemed content to sit back and watch with his enormous brown eyes everything and everyone around him, rarely interacting with any of it. Wore him on my back in some type of baby carrier all the time because he hated strangers. ANYONE unfamiliar approaching him would get what we came to call his 'stranger alarm'- a loud "EEEH!" that sounded much like a buzzer. If they stranger did not heed his sound and step back(and they often did not), he would erupt into screams of terror. As he grew older all it took was eye contact from a stranger across the room, across the produce display at the store, etc, and he would begin to scream. He just seemed to have this enormous bubble that no one dare enter or else.
   About this time(11 months old) G started some behaviors that were not necessarily odd, but the frequency with which he did them was frightening. One of his favorites was to bash his head against the nearest hard surface when he was in any way upset. We would cringe as he would have his fingers pushed away from the oven door and he would collapse in screams and begin repeatedly bashing his head on the ceramic tile floor. Other times he'd seek out the hardest surface, appliance or nearest wall to smash his head against at the slightest upset. Surely it had to hurt. Surely he wouldn't be spared serious damage simply because he was barely a year old and it was self-inflicted. Once again we received the same message from everyone, doctors included: It's normal. He's a boy so he's more aggressive in his tantrums.

Fake Nipples and The Dreaded Solid Food

Baby's first food- Mashed avocado!

 Around five months old we were able to finally get G to take a pacifier. Because breastfeeding was SO uncomfortable, I tried very hard to keep him from nursing simply for comfort because I would get blistered and sore for days when he did. We tried introducing the pacifier very early on to sooth the constant screams, but he would heave and gag every time we put it in his mouth. The day he actually latched on to the thing was a celebration in our home. RELIEF- And quite possibly a few less tears!
   Then came the time I had to go back to work. Because of my husband's schooling and work, I went back to my previous evening waitressing rather than the preschool teaching I had done before in order to work with our time constraints and avoid the extra expense of child care. I was unable to pump while waitressing so for the first time in my life, I went to buy formula and bottles. I had no idea what I was looking for, but chose what I thought were a good quality dairy-free formula and a bottle meant for breastfeeding infants. My poor son suffered for two full days of my husband trying to feed him from the bottle, but to no avail. I went back to Target and purchased yet another bottle meant for breastfeeding babies. Again, more screaming and hours of hungry baby boy. The next day I went to the store and bought one of every single bottle there was on the shelf, came home and boiled them all, then made my son a bottle and went to work. SUCCESS! Turns out Gerber makes a NUK nipple that is shaped EXACTLY like their NUK pacifier and I had happened to grab one of them. DUH! Wish I had noticed that three days previously!
   As a general rule we do not start our babes on solids until they're six months. Our boy was no exception. I was repeatedly told that perhaps he had what is called "silent reflux" and perhaps that was the cause of his relentless tears, and that solid foods would help keep his tummy calmer. At six months on the dot I marched right up to the avocado display and picked the nicest looking specimen and took it home. I carefully mashed a small portion with a fork, set my little man up in his high chair and gave him a bite- just a tiny bit on the end of the spoon. After less than a second he began heaving uncontrollably until that little bit of fruit slid out of his mouth on a boat of saliva. I thought perhaps I had choked him with the spoon so I dipped my finger into the avocado and stuck it in his mouth, knowing he LOVED sucking on my finger. He quickly sucked on my finger, then began to heave again until the little bit of food again left his mouth in a stream of saliva. Thinking he might want it thinner, I added just a touch of water and basically made a smooth avocado soup. Same results. I thought perhaps it was a flavor issue that he just needed to get used to, so I dipped his now ever-present binky in the avocado liquid and popped it in his mouth. Almost as quickly, the pacifier shot from his mouth like projectile as he heaved and gagged until he vomited. I was at a loss. So I gave up. Maybe he just wasn't ready and his bizarre oral pyrotechnics were his way of showing it.

Chubby bubby!

   So I waited. Every month on the 19th I'd try again, something new and every time it was met with the same gagging. After the second time, however, he seemed to know it was going to mean violent and uncontrollable heaving, so he began screaming every time I put something in his mouth. After our try at 9 months old, I gave up. Quit. I don't care anymore. Clearly the child was not starving- He weighed 25 pounds and wore size 24 months clothing! Between my breastmilk 2/3's of the day and soy formula while I was at work he was surviving and thriving.
   Then one day it happened, and it happened all on its own. As usual, we were all around the dining room table, plates in front of three of us and a toy in front of 10.5-month-old G. As I turned away from my own plate to cut up food for our 2.5-year-old daughter, I watched out of the corner of my eye as he reached out, grabbed a fistful of whole wheat rotini and crammed all of it in his mouth. He didn't gag. He didn't scream. In fact, he grabbed another fistful with one hand and the edge of my plate with his other and pulled the whole thing toward him. I let him. My husband and I just sat and watched as the boy used two hands and devoured an entire adult-size portion of pasta in quick order, then hollered for more. And we gave it!

Denial

Baby's First Christmas

When a woman finds out she's pregnant her first thought is not usually, "I hope the baby is happy." I didn't, anyway. After those first few weeks, though, I kept hoping my child would some day align himself with normal. When you DO suspect a problem, though, you don't go telling everyone. Generally there's a rather enormous sense of denial despite that unshakeable undercurrent. Nobody wants to admit their child has a problem. Every time I bore my soul and dared mention his unhappiness to family, they would verbally pat me on the head as if I were an angry child, telling me I was just expecting him to be the sweetly compliant and gentle demeanor of my first. They also continually told me, "He's a boy! You're just comparing him to your girl and he's not going to be like her." I took these statements with a grain of salt, wanting to believe them but still unable to shake the feeling that something wasn't quite right with my baby. He rarely smiled, barely cooed or laughed- just screamed. He wasn't meant to be this unhappy. It just didn't seem right. I read back over my private blogs from that time and I see that I'm just oozing over my sweet boy, how he just wants to be held by Mama, and resolving to break away from the Post Partum Depression that was trying to swallow me. I even had myself fooled from time to time.
   When my sweet gift was four months old, his screams went from "I'm an angry elf!" to "Ouch, that hurts!" Mamas(and some daddies) will know what I mean. Rather than his general angst with life, his screams were sounding panicked, high-pitched, and urgent. He began running a constant low-grade fever that everyone- doctors, friends, family- attributed to early teething. After a week, the fever got higher and his screaming was soon joined by projectile vomiting. One particular sleepless night I had just finished nursing my little guy after changing his clothes and diaper from a vomiting fit at 3am when he began to scream again. Within minutes, the vomiting started again- all over himself, me, and the bed. I woke my husband up on his only night off of the week and told him I was taking the baby to the emergency room. And I went. Five hours, many tests, vials of blood, a catheter for urine collection, and pokingand prodding later, we left with a diagnosis of a urinary tract infection so severe they worried about his kidneys, and dehydration due to vomiting from the extreme pain. My mommy heart broke. My tiny baby had had this infection for who-knows-how-long and the pain was so severe his stomach was churning and rejecting his meals. He was started on oral antibiotics, had ultrasounds and still more catheters and urology exams, and a month later he was written a clean bill of health. And still he screamed. But of course! He was, after all, just being a boy.

In the Beginning

In October 2008 God gave my husband and me an incredible gift. This gift came in the form of a ten-and-a-half-pound baby boy. His labor started with one random contraction while I sat in church on my estimated due date and ended four hours later with one mighty push. As my midwife lifted this extraordinary gift out of the water of the birthing tub and laid him on my chest, he let out a mighty roar. He hasn't stopped roaring yet.
   It was clear to me early on that this gift was something special. He was never what we'd call a happy baby. He cried a lot. A LOT. Most nights he spent screaming, vomiting, and struggling to latch properly. Breastfeeding was adequate, but a struggle from day one. He just never seemed to be able to get it, and it was always painful for me. If I hadn't already breastfed one child for fifteen months I would have given up quickly, but I am as stubborn as they come so I stuck it out.
My incredible gift never wanted to be without touch- and firm touch at that. From the day he was born until he outgrew it, the only place he was quiet and content was wrapped up tight in my cotton interlock wrap. I wore this little man from sun up to sun set, taking him out only to nurse and change his diaper. Once we realized he had a serious dairy protein allergy and I eliminated the offenders from my diet his demeanor improved, but he by no stretch of the imagination became a "happy baby." He would scream for hours for no apparent reason, writhing and wailing in misery until he vomited in his distress.
   I was caring for this child the pediatricians called "high needs" and "colicky"(though he showed no signs of classic colic aside from inconsolable crying) as well as our 22-month-old daughter, and keeping the household in-tact on a shoestring budget while my husband worked nights and went to college full time during the day. We both slept hodge-podge hours when we could slip a few in, rarely seeing each other, and I felt like a house-bound single mother living on minimal child-support.
When my challenging little gift was about two weeks old I hit rock bottom one night. I remember like it was yesterday. I sat in bed in the tiny master bedroom of our country townhouse, holding this screaming, flailing little body and trying every trick I knew of to soothe, care for and comfort him as the hours ticked by. I remember looking at the clock and seeing it was nearly 5am. My husband would be home in an hour, my toddler would be waking up around the same time and I had yet to get to sleep. I broke down and began to sob with the baby. I held him against my chest as I shook and said aloud, "God, I did not ask for this. I was trying NOT to get pregnant. I didn't ask for this." As soon as the words crossed my lips I realized what I was saying. I cried even harder as I clutched my thrashing, screaming infant and begged God for forgiveness. This disconsolate child was mine- my gift, and despite the fact that these two weeks of his life outside of my womb had been filled with anguish, frustration, and misery, I would be lost without him. He was sensational.