The Mother I Was, the Mother I Am, and the Mother I Wish I Could Be

Brian and Carter have gone to bed, closing out a day that I’d just as soon have skipped. There was yelling today. Also some stomping on the stairs, several episodes door slamming, and, of course, the requisite cursing.

I wish I could say that all the bad behavior belonged to the small person who has good reasons for being unable to manage his feelings, but sadly, no. Brian and I took turns getting down in the dirt and acting like jerks, too.

There were always days like this, days when parenting seemed like a shit job that for which I was simultaneously over-and-under qualified.

Then Carter came and I was, suddenly, out of my depth in almost every minute.

It’s been about 4,492,800 minutes since Carter was born and I think I’ve felt lost, overwhelmed, and/or afraid during at least 4,492,350 of those minutes.

Before Carter came, we taught our kids not to use what we called “rude words.” The list of rude words included all the usuals — fuck, shit, damn, bitch, ass, and all racial/homophobic/gender slurs —plus stupid and hate. Nobody used any of those words in our house unless the kids were asleep (except the slurs; nobody uses those, ever).

Now, it’s a rare and wonderful day when Carter doesn’t call me a fucking asshole or a stupid shit head. He can stomp up the stairs, scream I hate you, and slam his bedroom door with enough drama to put any hormone-flooded fifteen-year-old to shame.

With Jacob, Abbie, and Spencer, I carefully, methodically, taught them to identify their feelings and name them. When they were tiny, I started with the four simplest: mad, sad, scared, happy. As they grew, I added more nuanced emotions: lonely, disappointed, excited. They learned to speak their own feelings and even to identify the feelings of others. One of my proudest moments was when Jacob, about 5 at the time, said, “I think you’re mad, Mommy. Is that why you’re yelling? Are you mad?” (Proud of him; not so much proud of my own yelling self.)

Now, when I name Carter’s feelings, I only escalate the situation. “Quit saying I’m angry you stupid fucking bitch!” In the moment when he says that, I hate myself for the anger that thumps in my chest.

I love him. Dear God, how I love him, my boy, my heart, my lovely and precious child. But in that moment, I can see my hand rising, feel the sting as it connects with his face. Redness and swelling and bruises.

I have never, but the wanting…God forgive me because the wanting feels like doing, and my brain knows it’s not the same but my heart is confused.

Our house was full of angry words this weekend. We added a new medicine two months ago and it worked — Carter’s agitation and anxiety (the things that drive much of his fury) decreased significantly. The medicine also made him fatigued and nauseous and caused him to have a migraine nearly everyday, so of course we had to stop.

And now I’m a stupid fucking bitch again.

Every smallest anxiety feels like life-or-death to Carter. This morning, unable to find one of his shoes, he wailed and hyperventilated as if there was a hungry, salivating tiger loose in the house. The sounds of his fear startle me, cause my blood pressure to rise, and then I am filled with anger.

And then I feel ashamed. Because I am angry at a little boy with a serious illness. I am angry at symptoms, like being angry at a child with the flu for sneezing or being angry at a child with cancer for growing a tumor.

I took him to school this morning. He cried all the way there as if the plan was to drop him into a piranha-infested river instead of at the school he loves. When he was screaming at the door, “Mommy, no! I can’t do it! I need you!”, all I could think was, “Six hours. Get that kid’s ass through that door and into the school and I’ll have six hours of freedom.”

I was far, far (far!) from the ideal mother before Carter joined us, but I was never so utterly devoid of compassion for any of my children.

I don’t know how to find it again when he bucks and struggles against me the way he does.

Four hours now. Four hours to reset myself. Four hours to find a well of patience and compassion inside me before I have to pick him up from school. This is the worst kind of counting the minutes, when I am dreading being with my own child.

This is not the mother I wanted to be.

Disposable People

When I was barely pregnant with Jacob, my friend Rachel had a baby, a little girl named Gabrielle. A lovely, tiny thing with a shock of black hair I was compelled to pet whenever I held her, she was Rachel’s first baby.

Six weeks later, SIDS, that terrible night thief of babies, stole Gabrielle away.

It was every bit as horrifying as you imagine, and worse. Even now, I am pushing away my memories of Rachel in the days and weeks that followed. She was shattered, blistered all over with grief.

Because Gabrielle mattered. She was here, and then she was gone, and she mattered.

Three years later, Rachel was dropping her sister Josephina off at home after an evening out when Josephina’s husband opened fire on the car. He killed Rachel, her sister, and a friend who was sitting in the backseat before he ended his own life.

I remember too well that morning in May, 1996. I stopped at a convenience store to buy a cup of coffee and a newspaper and there was my friend on the front page.

That weak-in-the-knees, dear-God-what-has-happened, the-whole-world-is-spinning feeling? Is way too familiar to me. Way too fucking familiar.

So now, with her mother gone and her family scattered to the winds, I visit Gabrielle’s grave twice a year. I trim the grass and scrub the stone until it sparkles.

If I don’t do it, who will?

Gabrielle was here, and she mattered.

In a world that insists constantly that some people don’t matter, I need a ritual that says every person is important.

Why this post at this time? Because of the tragic story of Saiqa Akhter, the Texas mother who murdered her children Zain and Faryaal last week. My reasons are not exactly what you might predict them to be; it is not her actions but the world’s response that has captured my thoughts.

I have no idea what illnesses of mind or body beset Saiqa Akhter and her family (though most reports indicate that at least one of her children had been diagnosed with autism). I can guess at what caused her pain because I have been to some dark and ugly places myself, but I don’t know what corner she turned. I’ve never been to that place.

And this tiny voice at the very furthest reaches of my skull asks, maybe I didn’t turn that corner because my family paid for Carter’s private preschool so I could catch my breath. Maybe, during that dark time when I was far from acceptance, knocked off-balance, lacking the support that I have today, maybe… I can’t imagine that, but I’ve learned too often that immunity is an illusion.

Another thing I can’t comprehend is this: that so many people believe having compassion is equal to making excuses. I have infinite compassion for this mother, and what she did was inexcusable.

But that’s a soapbox for another day.

I was reading the news coverage of this story and found myself (as I always do, glutton for punishment that I am) reading comments. Angry, bitter, hateful comments. Judgmental comments. Ignorant comments.

And then this: I don’t see what the big deal is. We overvalue human life. These kids were autistic. They never would have made a real contribution to society, so who cares if they’re dead?

I can see you, sitting there with your mouth open, your eyes wide with shock. I want to join you in your shock, to view this (anonymous, of course) commenter as an aberration.

But he’s not. In fact, his sentiments mirror a cultural reality of which most people are entirely unaware: some of us are disposable.

Some of us don’t matter.

Some of us are worthless.

Most of the comments I read about Saiqa Akhter’s murder of her children were furious, hateful things about how she should have asked for help. Why didn’t she call for help? Why didn’t she call someone?

Of course, we have no idea that she didn’t, but that’s the faulty assumption that underlies everything: there is help. There is always help. If one asks, help will come.

If you believe that assumption is correct, I think some Hurricane Katrina survivors might like to have a word with you.

Because the kind of help that those commenters mean? It doesn’t exist in most places. One person suggested that she should have called 911 and asked for an ambulance to come get her children.

That isn’t how it works. I’ve heard more stories than I can even remember. Parents of an acutely suicidal nine year old girl took her to the ER where they were told to take her home and give her Benadryl. Children in the grip of florid psychosis are sent home from the hospital after 2 or 3 days. The waiting list for a 30 minute appointment with a pediatric psychiatrist here in Albuquerque is 6 months long. Schools don’t have the resources they need to properly educate children with emotional and behavioral challenges. There are bed shortages, provider shortages, money shortages, every kind of shortages. Go look at the blogs in my blogroll; you’ll find the story of a family struggling to get the services they need at every single one.

We parents? All of those gaps are left for us to fill. There are huge gaps, enormous needs, long stretches of time, during which we are all alone, left to deal the best we can.

If you call an ambulance because you sprained your ankle, that ambulance will take you to the hospital (the paramedics will roll their eyes until they’re dizzy, but they’ll take you where you want to go). If you call an ambulance for a psychiatric emergency, no one is going anywhere unless someone is on the very brink of death.

I’m well read in the historical and political reasons for all of this. You can watch a wonderfully informative documentary about it here. It’s complex, multi-layered, an impossible knot.

Except that it’s not. It’s one simple thing: some of us are disposable. Some of us don’t matter.

Not “some people.” Not “those people who are ill” or “those people who have disabilities” but some of us.

My ritual at Gabrielle’s gravestone may seem silly, like a boy whistling in a hurricane, and that might be true. But if someone is remembering Gabrielle, then someone will remember Carter and every one of the other people who might never make a tangible contribution to society.

You who read here? I love you, and I’m counting on you to help me share this message, this most important idea that all people matter.

None of us is disposable. My penchant for moral relativism aside, I am right about this. The alternative is too terrible to contemplate.

On (not) Getting a Diagnosis

When Carter was brand new and cried all day and night, we thought at first that he had unusually severe colic. We’d been blessed first with three easy babies; the bill had finally come due.

But he was not a regular baby who cried a lot. He also hardly slept; he didn’t interact with us much at all. He wanted me and only me, all the time, day and night. He was limp and floppy, mushy as jell-o in a plastic bag. As the crying went on (and on, and on), and was so frantic and shrill, we got scared that he was in pain. It seemed like the only possible explanation, and we were horrified that our poor baby was in some kind of agony. So, although he had no symptoms, we tried several medicines for reflux. No change. What else could we do? At that time, nothing. This was the period during which no one would listen to me; no matter how hard I tried to make it clear that a) I knew what I was talking about and b) that something was not right, I got no help.

So we hobbled along, and when Carter was about 6 months old and his doctor declared him hypotonic (low muscle tone, the cause of his floppiness) and sent us off to see a neurologist, I was happy. Terrible, right? But this was a pattern that repeated itself a dozen or more times. It wasn’t that I wanted something to be wrong with Carter; it was that I knew that something was wrong and wanted someone to identify it for us.

What followed, with the neurologist and the many specialists that we’ve seen since, is a process whereby we’ve identified issues without finding an underlying cause.

It started like this:*


Test, Procedure, or Evaluation

Age

Purpose

Result

Blood tests – lots and lots of blood tests 6 months God only knows Negative
Neurological evaluation 6 months Determine the cause of Carter’s hypotonia Confirmed presence of moderate central (meaning more in his trunk than in his limbs) hypotonia
EEG 10 months Rule out seizures as the cause of Carter’s chaotic sleep patterns Negative
MRI 11 months Determine the cause of Carter’s hypotonia Negative
Full developmental evaluation 11 months Determine Carter’s level of functioning and qualify him for services The team diagnosed the following: fine motor delay (mild), gross motor delay (moderate), sensory processing disorder, separation anxiety disorder, expressive language delay
Barium swallow study 14 months Determine the cause of Carter’s frequent gagging & choking; look for reflux Negative
Barium enema 14 months Rule out structural abnormalities as the cause of Carter’s severe, frequent constipation Negative
Weight check at the pediatrician’s office 16 months I was concerned about Carter’s slow weight gain Carter was diagnosed with FTT (failure to thrive) for the first time
This “frog” sleeping position is fairly common among hypotonic babies.

By that time, we were tired. Weary. And really really tired of people not listening to our real concerns. The hypotonia and motor delays concerned us, of course, and Carter’s constipation was epic. (Seriously; 10-15 days with no poop at all, followed by 2 full days during which he struggled and grunted and strained to move all of that out of his body and into his diaper. The screaming? Never mind. I don’t want to talk about it.)

As much as we were concerned about those things, we were far more worried about his emotional development. There was the crying, of course. The all day, half-the-night scream-fest that our lives became three days after Carter was born. There was the not-sleeping, the mountainous wakefulness of him, his inability to fall asleep without my total participation.

Most of all, there was the unhappiness. Carter smiled for the first time at about 3 1/2 months old (Most babies smile their first real social smiles around 6-8 weeks.) and I was so relieved to see it, I bawled. Even once he had the skill, though, he rarely used it. He was just…unhappy.

He didn’t know how to laugh, either. Even if we tickled him, he did this weird uff uff uff thing that didn’t sound like laughter so much as a person who is trying to drag a heavy box across a room. I would take Carter to playgroup or LLL meetings and cry when I heard other baby’s spontaneous laughter. He finally laughed not long after his second birthday, but just like his smile, he didn’t want to wear his laugher out and used it rarely. To this day, the sound of Carter’s laughter startles me.

After Carter’s full developmental evaluation (via 0-3 for those who know about such things), he was qualified for OT (occupational therapy) and PT (physical therapy). The agency to which we were referred for those therapies couldn’t find us any therapists. After 8 months of waiting, no one at the agency could even give us an idea how much longer we would have to wait.

In place of the therapists we needed, the agency sent us a person whose job title was “Child Development Specialist.” She taught me how to sing Eensy Weensy Spider with Carter. Told me (with a straight face, sitting in my book-lined living room, having moved aside a large stack of books to make room for her purse) that reading to Carter and letting him see us reading was essential to his development.

Apparently, our child had all of his problems because we were too stupid to know these things. Although I seriously considered it, I never gouged out the eyes of the visiting “specialist.” (Though specialist of what, exactly? You don’t need much formal education to teach people to do things they already know how to do.) Several people said to me, “You know how things are in New Mexico; there are so many people who need to be told things like that!” Fair enough, but seriously, the book-lined walls weren’t enough of a clue for her?

Weary and frustrated, we gave up.

I was ashamed of that decision, but the search for a diagnosis had worn us down. I needed time to regroup. We didn’t resume our search until Carter was almost three years old.

One struggle I had was finding providers who would listen to our whole story. I didn’t believe then (and don’t now) that Carter’s many issues were unlucky coincidences. Except for his allergies and asthma (which he inherited from his dad), I’m convinced that there is a common cause. We were hunting for the bottom-line diagnosis that would explain everything.

We returned to our search for that diagnosis when Carter began to have symptoms of CVS, though we didn’t have that diagnosis yet.


Test, Procedure, or Evaluation Age Purpose Result
Full developmental evaluation 2 years 11 months Determine Carter’s level of functioning and qualify him for services (again) The team diagnosed the following: fine motor delay (moderate), gross motor delay (mild), sensory processing disorder, separation anxiety disorder, right-sided weakness
Well-child check 3 years Annual check-up Carter was diagnosed with FTT for the second time (he hovered at a very low weight for a long time)
More blood tests 3 years We were trying to rule out pretty much everything And we did – all negative
Child Find evaluation 4 years 5 months Determine Carter’s level of functioning and qualify him for services (again, but this time services would come through the public school system) The team confirmed all of the findings of the last two teams at 0-3 and added visual processing difficulties, slow processing speed, and some kind of memory issue that they couldn’t name
Evaluation and treatment by a developmental pediatrician 4 years 10 months Rule out autism and try to diagnose (and therefore choose appropriate therapies for) Carter’s increasingly troubled behavior ADHD, severe generalized anxiety disorder; Carter got his first prescriptions for psychotropic drugs and (life-changer, this one) meds for sleep!
Evaluation by a gastroenterologist 5 years Diagnose the cause of Carter’s episodic vomiting Cyclical Vomiting Syndrome diagnosed
Well-child check 6 years Annual check-up Carter was diagnosed with FTT for the third time
IEP evaluation 6 years Determine Carter’s eligibility for special education Confirmed presence of memory issues and slow processing speed and other learning disabilities; IQ test put Carter in the borderline range
Evaluation and treatment by a pediatric psychiatrist 6 years Arrest Carter’s spiraling instability, violence, and self-injurious behavior Confirmed ADHD and severe generalized anxiety disorder diagnoses; diagnosed bipolar – changed one year later to bipolar with psychotic features
Genetics evaluation and metabolic and genetic blood tests 7 years Rule out metabolic and genetic disorders as the cause of Carter’s issues; we were especially suspicious of Fragile X Negative
Neurological evaluation 7 years Find out if, with all the new information we’d gathered since Carter’s first neuro evaluation at 6 months, we could make a diagnosis No definitive diagnosis, though the neurologist does believe that Carter’s issues have a single neurological cause, possibly due to a stroke or hypoxic brain injury in the weeks or months before his birth

And that’s where we are today, with our not-quite-a-diagnosis. I have a hard time describing how I felt when the genetics tests and the second neurological evaluation came up (mostly) negative. I can’t describe it because I don’t exactly understand why I needed (need) it so much. Carter would require the same therapies; he would take the same medicines. We would face the same struggles and live the same joys.

I suppose there’s some validation in having a lab-confirmable problem and I craved that. No one looks at you askance when you say “hypoxic brain injury” the way so many people do when you say “mentally ill.” There’s community, too, though since we gave up (and not temporarily this time) our search for the bottom-line diagnosis, we’ve found a community of parents whose children are mentally ill.

I was surprised, after we decided that the time had come to stop searching for a diagnosis, to find that I was grieving. Somehow, I had become attached to the idea of finding out why. I’m no different than any other woman who has given birth to a child with problems; I’ve searched my memory over and over for the things I must have done wrong.

So I grieved, and although it makes me sad (and might always), I’m learning to live with the not-knowing.

*I didn’t include any of the diagnoses that Carter was given (or that we considered) but were ultimately rejected. Those short-term and provisional diagnoses would more than double the size of these already unwieldy tables.

Driftwood

Depression is rage spread thin. ~George Santayana

I hate everyone and everything. Even the coffee I brought with me to my desk is all wrong. I hate flavored coffee, and I hate the person who used up all the regular coffee and didn’t go buy more.

I hate that the person who did that was me. Today me hates yesterday me.

I can’t be the only person who has days like this, right?

I hope not, but honestly? Maintaining my emotional equilibrium isn’t easy for me in the best of times, and this is far from the best of times.

When Carter was busy screaming through his second year of life and I had just begun the process of accepting that he was somehow different, and potentially very different, in ways that weren’t going to magically disappear, I had something of an existential crisis. I asked everyone I knew, “Why me? Why is this child, with his huge and relentless need, mine?”

I didn’t ask that question because I felt like I drew a short straw. It wasn’t the question of a woman who thinks the universe is unfair, but the statement of one who knows the universe has made a mistake.

Everyone has a baseline level of functioning. Some people are always on top of things. They have energy, optimism, and resiliency to spare. They live to their emotional, intellectual, spiritual, and physical potential most of the time. When life brings these people a crisis or tragedy, they feel their painful feelings and, in time, return to their baseline. I call these people one hundred percenters. Most of us function somewhere less than 100%, all the way to people who are completely non-functional.

Any factor you can think of, internal and external, impacts a person’s level of functioning. For a thousand reasons large and small, I’m not a high functioner.

Someday, I will tell you about some of my limits, but for now? You need to take my word for it.

So when I looked at Carter during that second year, screaming day after day and gathering new symptoms like a snowball rolling downhill, I asked, “Why me?” because I thought God had fucked up, and fucked up big. To send me, a barely adequate parent to the children I already had, this bundle of bottomless need and mystery, seemed like a cosmic mistake of the first order.

People often make comments to me about how much stronger I must be since I became Carter’s mother, that I must be more compassionate and patient than ever before. All of that is true, but equally true is this: Carter has showed me my own considerable capacity for anger, pessimism, and fear-fueled bitterness.

Hence the hate.

Brian and I, in the moments in which we are capable of counting our blessings, are grateful that we rarely descend into the dark and angry places simultaneously. Most of the time, one of us is present enough to keep our lives moving forward while the other claws his or her way back to the light. Most of the time.

This afternoon, when Brian called me from work and heard me struggling against the surface of things, flailing away, over-reacting, and failing miserably in my every attempt to restore order to my internal reality, he came home to take over. First order of business: take Carter to his afternoon appointments.

Let the weeping commence. The shock of this change in routine was more than Carter could bear quietly and he wailed, “No, Mommy! You always take me to my appointments! Daddy won’t know what to do! Please, Mommy! Pleeeaaase!”

Carter’s great well of need, always present but not always visible, opened wide in front of me. That need it limitless, bottomless, and forever hungry.

Me and my stupid limits.

When I was asking my question of everyone I knew, “Why me? Why didn’t this child go to a different kind of mother? A one hundred percenter?” people offered one of two answers: a shake of the head, or an unhelpful platitude.

Propelled by desperation, I continued to ask my question, not really expecting to hear an answer but compelled nevertheless. Finally, a friend said, “Maybe he’s yours because you know that feelings matter. Maybe he needed someone who would try to understand his feelings more than he needed someone who could stay calm and optimistic all the time.”

A drowning person will grab hold of any floating thing, no matter how small and feeble. That little chunk of driftwood, the knowledge that, more than anything else in the world, Carter needs me to really see him, has been just enough to keep me afloat on lots of days.

I don’t know if there’s a reason for everything. I don’t know if Brian and I needed Carter, of if he needed us, or if Carter’s issues are just a fluke, what we call “The Double Jones Effect.”* Thankfully, my spiritual beliefs don’t require me to find an answer, nor does my religion (at least my tiny corner of it) force an answer on me. There is no platitude that can wrap around and neutralize the experience of raising a child like Carter.

No matter how often people paint me as an exceptional or heroic mother, it won’t be true. I’m only me, unexceptional. Ordinary. Clinging to my driftwood because there’s nothing else to do.

*I didn’t take Brian’s name when we married; we already had the same name. Virtually everyone to whom I am related, except Jacob and Abbie, is named Jones.