I save laundry folding for nighttime. I pile everything on top of my bed, pour myself a glass of wine, and put in my latest Netflix DVD. Its become a very relaxing exercise, methodically folding and piling up this and that, and if the movie’s good enough, the laundry’s folded before I know it. (Putting it away, that’s a whole different kind of chore and I detest it, but that’s sort of beside the point.)
Last night I had a mountain of laundry to fold and no movie to watch, so I channel flipped until I noticed Discovery Health was airing a program about bipolar children.
I wasn’t able to catch all of it as I was also managing baths at the time, but I did catch a fairly good portion of it. Enough to make me feel both sad and lucky all at the same time. Once again, I felt part of a club I have no desire to be in.
When my daughter was first diagnosed, one professional suggested I check out the CABF mailing lists. I did, for a week or two, then I funneled the subscriptions to a folder to read later, and eventually unsubscribed. Its not that there isn’t value in connecting with parents of other bipolar kids – they are often the only people who understand what life can be like when things are really at their worst for families like ours. Its that some of the outcomes were so depressing for me to read I practially lost the will to live just reading the emails. Children the same age as mine in residential treatment. Children threatening to kill their siblings. Suicidal nine-year-olds. Its heartbreaking, and as I was trying to wade through the daily grind of diagnosis and treatment, it just wasn’t helping me. I needed to be able to envision a positive future for my daughter. Even though I know that all of these issues and more are possible, I don’t believe its useful to dwell on the worst-case scenario. Be aware of it, yes, think of how you might handle it if it arises in the same way you do fire drills so that when the house is burning you don’t forget how you’re getting out. But to immerse myself daily in the pain and anguish of parents who themselves felt no hope left me feeling hopeless too. My energy was required by my child and her needs, and I couldn’t find the words to offer them support or to even explain my own story and what we were going through.
Last night, I expected that the show I was about to watch would be much of the same. In some ways, it was – the little boy they featured in the first vignette was working on entering his sixth hospitalization, at the age of nine. NINE. In case that doesn’t shake you up, let me repeat it: HE IS NINE YEARS OLD AND SINCE HE WAS DIAGNOSED FOUR YEARS AGO HE HAS BEEN HOSPITALIZED SIX TIMES. That’s appalling. The next story was a little more hopeful, a bright and articulate girl, talking about how things were for her when she was younger. And they played a tape of her mid-rage, she was maybe three or four in the video. I had to catch my breath – the sound she was making, sort of a mix between grunt, yell, growl – was exactly the sound A makes when she rages. I have never heard another child make that same sound. Then her mother talked about how she was afraid to lose her job because she was getting called every day to get her daughter from daycare because she was having rages, and I just laughed and cried at the same time. I felt like I could be her in-real-life BEST FRIEND, because I so remember those days. The weeks where I had to leave partway through the day more days than I made it to five. The fear that my employer was going to lose patience with me and find another employee with “normal” kids. I got exactly what she dealt with and I know if I sat down and had coffee with her, our parenting challenges would seem very much the same.
What made watching this girl on the TV different and better was that I could see how much improved she was from her preschool years, and I see the same thing in my daughter. I know it has been a struggle, and I am not living in denial that we likely have a great deal of challenge ahead of us as puberty starts messing with her body’s metabolic abilities and throwing her medications out of whack. I know that there very well may be times in the future where we will struggle mightily. But I look at her now, and as I listen to this other little girl, a few years older than my own, I feel really and truly hopeful. This little girl on the TV, this little boy, they have wonderful parents. Smart, caring, lovely parents, people who are keeping their backbone straight while they cope and work to do the very best they can for their child.
Even when the outlook is mixed, I have faith that those children will do the best they possibly can because their parents are engaged, and they were engaged early. Before we reached the point where A could start recognizing and taking responsibility for her own behavior (and she does, oh God, she really does, its incredible to watch right now), way before that we, J and I, we engaged. We sought medical interventions. We did (and do) therapy. We pay attention to school and we talk to her educators. Even now, living apart, we communicate about how she is doing. Issues of concern are raised and discussed. Its crucial, this part of parenting her. There’s no doubt in my mind that if we did not do these things that our daughter would be nowhere near where she is today.
The other thing we did was to not assume the doctors know everything. Pediatric Bipolar is still in the discovery stages. Symptoms present far differently than in adults and there's still so much to be learned. Ultimately, I know my child better than any doctor, therapist or psychiatrist, especially if this professional happens to be issuing instructions to us after knowing my child for only the half hour we've been in their office. I know my child better than anyone else, and I feel most comfortable working with medical people who get that. I appreciate my input being treated with respect and acknowledgment. Its fine if we disagree, so long as we all remember that final decisions rest with me and with her father. Never EVER be afraid to disagree with your child's caregivers or to seek second or even third opinions.
Read everything you can find. More people need to write books about pediatric bipolar, because it seems I've run out of any new options on Amazon. Amazon must be looking desperately for new authors, because I think they paid an entire year's salary after my bipolar book shopping spree.
Don't rule out medication. We don't medicate so that she will be more manageable for us, although that's certainly a side benefit. We medicate because she is happier, she functions better, she is more capable when she is medicated.
Whether or not a parent decides to medicate, the goal is to help your child live the best life that they possibly can. Of course this might not resemble what life looks life for “normal” kids, but that’s not the goal. My daughter is uniquely herself, and her issues make it more than inadvisable for me to compare her progress against children who do not share her illness. I don’t even think I can measure her against other bipolar kids, because this disease has such varying levels of acuity that it would be impossible to determine what other kid might be exactly like her. I can only measure her against what I know of her, about her. And I see that she is shining with a radiance I never knew she could display. She is mostly happy. She has her off days, when her pendulum swings her toward the low end of the spectrum. She might be crabby, fight with her brother, talk back when asked to do a simple task. But where a year or more ago these small incidents might have turned into tantrums or full-blown rages, now they are minor moments of disconnection and perturbation in the backdrop of an otherwise sunlit day.
I want to hold onto these moments with both hands, never let them go. Not let the inevitable slip of time and tide move us past these golden moments into the uncertain waters of the future. And I know that I cannot. What I can do is have faith in what he have done so far, what SHE has done, and trust that we will continue, as we have, striving to do better.