An Important Story

I’m always thrilled to be asked to write about Carter, to tell some of his story so that more people know him and understand his struggle.

Often, though, when the time comes to put words in lines, I freeze. I’m not nervous, not afraid of judgment, not frozen for any of the usual reasons. I freeze because writing about Carter requires me to pull back and look at the big picture.

I put a fair amount of energy into avoiding the big picture.

The big picture makes all our tiny triumphs recede into utter insignificance and I can’t let that happen. I’m here to tell you, my friends, that denial, properly cultivated, is a beautiful thing.

Carter is eight years old, born July 24, 2002. He is our 4th child, but our only child together. When we met and married I had two children (Jacob, now 17, and Abbie, now 15), and my husband Brian had one (Spencer, now 13). Carter was a very wanted baby, conceived just a few weeks before our consultation with an infertility specialist, on our 19th month of trying to get pregnant. We were over the moon with joy. We knew Carter would be our last child and we were thrilled to have a chance to do the baby thing together, all of us.

But Carter is seriously mentally ill. Hard as it is to believe (and I doubt I would believe it if I wasn’t living it), he was born that way. He has other issues, too, including delays in motor and social development, cognitive and learning challenges, and muscular and health issues. We’ll probably never know the bottom-line cause for all of those things; Carter has endured dozens of tests, some of them quite unpleasant, and we’ve come to the end of that road for now. His neurologist believes he probably suffered a perinatal brain injury (he was born with a true knot in his cord), or possibly a stroke.

He’s had dozens of diagnoses since we first started looking for answers in earnest, but the ones that have hung on and proven to be true across time are bipolar disorder with psychotic features, ADHD, and generalized anxiety disorder.

Whatever caused all of it, the emotional issues are and always have been the most significant and worrisome. Carter’s mental illness has turned our lives inside out; all of us, all of our relationships, my career, our church, our friends, everything is different.

Carter’s illness has broken us financially. I won’t get into all the details of the why and how of that because we’d be here all day. We’ll just stick with the two primary causes: the cost of Carter’s care and my joblessness.

The cost of medical care for a person with a chronic illness is exorbitant. Brian has a good job and we have the best insurance. Even with our fancy, pricey insurance, the costs for some of Carter’s essential therapies aren’t covered. Altogether, with premiums, our deductible, and out-of-pocket expenses, we spent 25.4% of Brian’s gross income on medical care in 2009. In 2010, it was even higher.

High as that percentage is, it would be manageable if I was working. I did try to go back to work two years and it was a disaster. It didn’t work for lots of reasons (One big one? We couldn’t find appropriate child care.), but bottom line, Carter needs me. He loves lots of people, but I am his home. He is dependent on me far, far beyond the dependency of a typical child, even when he isn’t acutely ill.

Our relationships with our other children are deeply damaged. This piece is almost impossibly painful for me to write about, but it’s part of our story, and it’s a large part of the reason I cringe every time someone tells me I’m extraordinary and special and that must be why the universe sent Carter to me, specifically.

The truth is, we were so overwhelmed by Carter’s needs for his first five years or so (and still are today, but not constantly), we virtually abandoned Jacob, Abbie, and Spencer. We met all their material needs, and took them to the doctor and made sure they did their homework, but everything else was lost. Where before Carter was born there were games and long walks at dusk and days spent at the swimming pool, after Carter there was too much TV and frequent instructions to “go find something to do” while we tended to our screaming, frantic, destructive youngest child. Before Carter, there were conversations, silliness, laughter. After Carter there were noise and chaos.

The blessing for them in all of that was, since we shared 50/50 custody of all three children with their other parents, they had quiet homes and un-distracted parents to which they could escape. The curse for us was that they could escape, and they did.

Jacob and Abbie live with their dad now. Deeply hurt and angry, the avoid us and our home most of the time. Someday, they’ll understand that I did the best I could under extraordinary circumstances, but that understanding will never erase their wounds. Our relationships will never be clean again, unmarred by resentment.

Early on, when Carter was still very young, we started losing our friends. When a family has a new baby, everyone expects that things will be chaotic for them and gives them a pass if they break commitments or are tired and distracted. When that goes on and on and on? People run out of patience. Worse, it’s not easy for me to put on a happy face for people when Carter is acutely ill, especially if he is psychotic or suicidal. Even after I learned to stop talking about Carter to avoid upsetting others, I can’t pretend to be happy. People like to be around happiness. In Carter’s first few years, especially, and periodically since, I have been too consumed with anxiety over Carter’s condition to be anything but obviously upset. People get tired of that. Brian and I are fortunate that we’re both introverts because we’ve learned that a significant amount of isolation is part of our lives now.

I don’t want to paint too bleak a picture; much of the time, we have joyful, satisfying lives in spite of everything (Now we do; in the first few years? Not so much.). On the other hand, I don’t want to leave anyone with the idea that our lives are different but just swell in all the differences. My son suffers from his illness, and the people who love him suffer, too. The mental health system (and especially the pediatric mental health system) is grossly inadequate. Research is lacking. Waiting lists are long. Education programs for kids with serious mental health issues are hard to find and harder to get into, if they exist at all.

All those inadequacies leave parents holding a very, very big bag. I love Carter. I want to spend more time being his mom while the professionals manage his medicines, therapies, and all the rest of the things he needs and that I’m not equipped to manage. But no; if I don’t fill in all the many gaps in his care, they won’t get filled, so I spend hours researching, studying, and learning. I am more case manager than I am mom.

Oh, and Brian? Since his job is our only source of income, we decided long ago that it would have to be his top priority. Of course, when there is a life-or-death situation (Carter has been very close to the brink several times.), Brian comes running, but in general, during the 60+ hours per week when he’s working, I’m on my own with Carter. Neither of us minds this; we’re grateful for the good job with its good benefits, but it can be pretty intense sometimes.

The thing for which I am most grateful? My marriage, while far from perfect, is strong. Many (most?) marriages don’t survive a child as significantly ill as Carter, but it has pushed us toward each other. I respect my husband and I know he respects me. In a better world, Brian would work 35 hours per week and I would work 20 hours per week. We would both be fulfilled professionally and have the energy and time for Carter that he needs.

Since we don’t live in that better world, I’m fortunate to have the next best thing: a husband who’s in this with me, no matter what that means. Unless something changes drastically for us, Brian won’t be able to retire until he falls over dead at his desk. That’s a damn big sacrifice for him to make so that Carter can be with me during all his out-of-school hours. When I get to feeling sorry for myself about my lost career, I remember that Brian has lost just as much. No matter how big the storm is, I am never alone in my little boat. That makes all the difference.

The way that being Carter’s mom has changed me the most is this: I have no idea what the future will bring. Of course, no one really knows, but before Carter, I had a reasonable expectation that we would raise our children and send them out into the world to go to college, start careers and families, and live their lives. Since Carter, I have had to learn to let go of all my expectations. Carter might grow up and have a satisfying, independent life, but there’s a greater chance that he’ll need to live with us or that he’ll go to prison. The most likely scenario is that Carter won’t survive to celebrate his 25th birthday.

And that? That’s why I rarely pull back to look at the big picture. Today is easier to manage. Today, Carter had a friend over to play. Today he smiled and laughed and asked me to read him a book. I can’t afford to miss those trees because I’m too occupied looking at the forest.