I was walking down a busy New York City street recently when I saw something that punched me in the gut: a young woman in her early 20s looking for a taxi and lugging a large black artist’s portfolio. There was nothing about her that should have caused such a reaction, except that she could have been my daughter Becca. Should have been my daughter Becca. Becca heading off for an interview to be a graphic designer somewhere—at a progressive political organization or a socially-conscious company. If only. If only.
You grieve for the loss of the future you expected for them, for the things that will never be.
So many if-onlys. If only her father hadn’t died suddenly when she was 13, such an open-wound age under even the best of circumstances. If only I hadn’t floundered so much in dealing with her spinning skid into depression and anxiety. If only she’d been at a school that didn’t treat kids with different, difficult personalities as delinquents. If only I’d managed to find her such a school. God knows I put hours into trying to figure that out. If only, if only.
There’s a special kind of grief you feel when you have a child with mental health issues. You constantly bump up against a sense of loss for what isn’t there in the present, and for all that might have been. You grieve for the loss of the future you expected for them, for the things that will never be.
Getting Her Off the Sofa
“We had to fight to uncurl her from the couch.” Image: Gregory Pappas/Unsplash
In those high school years after her dad died, there were so many mornings when I looked out the window at the kids walking toward school, lugging their books, bumping against each other and shrieking with laughter at things on their phones. I wanted that for her—I ached for it. And then I’d turn around and spend an hour trying to cajole/nag/bargain/push her to uncurl herself from a fetal position on the couch and go to school.
Sometimes she went; sometimes I had to leave her there and go to work. There were psychiatrists, therapists, meds, different meds. She was officially diagnosed with severe clinical depression and anxiety, and I carefully doled out her medications. And still, most mornings, we had to fight to uncurl her from the couch.
I hated—I admit it—hearing about friends’ kids, their debate team wins, their science fair projects, their normal lives. I wanted that. I hated the innocent question: What are your kids up to these days? I hated that I ducked the question, answered vaguely, changed the subject.
I’m a natural optimist, and on the good(ish) days, I’d think, It’s getting better! There’s a phrase for this that I heard in the support group I go to at the National Alliance for Mental Illness: Hoping against hope. It’s a stage that family and friends go through, and the first time I heard that, there was a clank of recognition in my brain. I have spent so much time—so many years, really—in that stage. Hoping that this day will be better than the last, or that because she got an A on the first paper, she’ll hand in the second, or that in this job, she won’t implode in a few days/weeks/months and quit.
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Grown Child Disappointment: Adjusting Expectations
When you have a child with mental health issues, you learn to adjust your expectations. From a young age, Becca had such a talent for combining words and art with a sly and edgy humor; back then, I imagined her working for an alternative magazine or doing subversive ad campaigns for enlightened companies. But I realized she wasn’t going to join the staff of the high school literary magazine, though her writing pulsed with emotion. She wasn’t going to take the school’s college-level art class, though the art teacher pushed her to and hung her angry, vivid art in his classroom.
So I had to celebrate what she would do. She wasn’t going to run for student government and fight for the things she thought her school should do better. But when she saw a poster in the hallway for a self-defense class for girls, she designed a poster of her own and hung it underneath: “Instead of teaching girls how not to get raped, shouldn’t you be teaching boys not to rape?” That got her a trip to the principal’s office—and the principal got a call and lecture from me.
The school finally, halfway through her junior year, put her into a program where they shoved the kids they’d written off, and there she began to uncurl a bit under the care of a wonderful social worker and the program’s director, who saw so much promise in her, who encouraged that passion and talent for art and words. When she wrote a long, wrenching, emotionally-howling poem about her dad’s death, he didn’t send her to the school shrink—he told her to read it at the school’s poetry slam. And she did: She stood up in front of the polo-shirted dads and blonde-bob moms and their kids who all dressed alike, with her purple hair and ripped everything, and held the mike with shaking hands.
In her senior year, when I thought that she’d only be able to handle the local community college, even though the expectation in my extended family is that everyone goes to a four-year school, that program director encouraged her (and me) to set our sights higher.
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The Uncertain Future
I take no solace in the fact that I was right—it was too much for her. She will always have this: that out of 1,000 applicants for a particularly competitive school of art and design, she was one of 40 who got in on the strength of that angry, vivid artwork. And she’ll always have this: that she, as she put it, couldn’t hack it, blew it, lost that opportunity.
I still brace myself against that question, How are your kids?, when I run into people I haven’t seen in a while.
Living with a kid with mental health issues often means letting go of the future you’d always assumed would come. It means accepting what the kid can do, rather than what you’d hoped they would do. It means acknowledging that almost every day will be a struggle, that many people won’t understand why she doesn’t just “get going and do something,” and that much of the time, you don’t know the right thing to do.
Becca ended up at the community college, finding some success, and still blowing some of the chances. She’s 20 now, living at home, taking time away from school while she applies for retail jobs and attends a half-day therapy program—the very good psychiatrist there diagnosed her with bipolar disorder, which clarified so many things. Every day she wakes up with a storm in her brain, and somehow finds the strength to get out of bed.
I still brace myself against that question, How are your kids?, when I run into people I haven’t seen in a while. Most of the time, I don’t duck it anymore. “Becca has mental health issues,” I say, as matter-of-factly as I can. “It’s a struggle, but she’s making her way.” And always, always, they’re sympathetic. I try to focus on the now and not worry too much about how she’ll make her way in the world. But I do worry about that, of course.
Living with a kid with mental health issues means cutting yourself slack for all the mistakes you’ve made, for the things you haven’t figured out. I’m working on that.
A version of this article was originally published in May 2017
Marg says
Thank you for this article. I can relate to it so much. My son is now 29, he is married and has put his wife through so much. His mental health started to decline in his Grade 12 year. He developed an eating disorder and at 6′ 3″ was down to 120 lbs. He regained his weight, then developed severe OCD. It was terrible to watch. He was able to see a good psychiatrist who got the cocktail of meds right which helped, and he saw a psychologist who literally saved his life. He met his current wife, she knew of his issues and loves him despite them. He went to bible school and got a job as a pastor, by this time he was off his meds and doing well. Then my husband who my son was very close to was diagnosed with a brain tumour…Glioblastoma. My son relapsed and had to go on disability. He was diagnosed with PTSD, his OCD is back but not as bad and also has now been diagnosed with Borderline Personality Disorder. They are trying to get him into a day program which will help him work through his mental struggles and get back to living. We waited for 7 months for one program and it got cancelled so now we are waiting again. His wife has been so loving and kind but I worry how much she can take. My husband was very brave during his chemo and radiation but passed away 364 days after his tumour was discovered….his passing has really taken a toll on my son…my daughter is 32 and resentful of how much we all have to bend and adapt due to my sons mental health. I am alone now and miss having someone to share the load with who loved my son and daughter the same as I do. Today is a bad day, I can’t stop crying worrying about whether my son will be able to get well and live a “normal” life. I too struggle when my friends (their kids are all doing really well) ask about my son…I am heartbroken over some of his decisions, and its hard to explain to them why he doesn’t answer their kids texts when they reach out to him. I remember during the eating disorder I slept on the couch as I was so worried he would take his own life…it has been so many years of heartbreaking worry and the realization that I can’t make him get better…he has to want to get better. I wonder where I went wrong, did I do too much for him, what could I have done differently. I pray and hope…
Barbara Weddle says
I too have dealt with years of bi-polar in my family–my mother, sister (both now deceased), and most difficult of all, a grown son. Another son (I have four) suffers from PTSD after being in the military. I am glad that you wrote about this subject. I have found that facing reality (as I did, and you seem to have done) helps. In a weird sort of way I’ve even embraced it. Is is what it is and acknowledging it lessens the burden. All of my sons are compassionate. The two with mental issues are perhaps too compassionate for their own good. The oldest, in spite of his issues, has led a full life: he works and although he has problems with romantic relationships, he’s raised a son and has a good network of friends/acquaintances. His brother is more prone to isolating himself; however, he is self-sufficient also. He is also kind and thoughtful. I am very close to each of them. I know what you’re going through. It’s tough. I thank you so much for sharing. -Barbara
Nicole says
Wow the disappointment in this article can really be felt. My heart goes out to her daughter who has suffered the loss of a parent.
L Harvey says
You totally missed the point of the article.
Deborah Main says
Great article. When the bottom fell out for our daughter, starting with migrains, upon entering middle school, we had no idea what lay ahead. It only got worse and she was diagnosed with major depressive disorder and PTSD. We finally took her from the high achieving college prep program and put her in special ed. It only got worse. But we let go very quickly that our daughter would ever go to college. The problem is we knew her before the bottom fell out from years of emotional abuse prior to being adopted by us at age 7. After 10 years of weekly therapy with us and the best team of psychiatrists ever, the highs and lows of helping her cope with her depression, she began to blossom and build confidence. Deep down shes incredibly strong and talented. We found her internships, shes beyond gifted in fashion and jewelry design. We thought getting her to move into an apartment at age 21 with our exchange student would be a way to help her transition to adulthood, to begin the separation from us. Instead of looking for a job she replaced our parental love and care for her (my hubs and I have always been very close with her) with a 54 yr old man and now lives in San Antonio under his care. It’s been very tough to deal with this But we’re trying to let go. After 6 agonizing months of feeling like a predator was stealing our daughter, with all the professional help we could get, we realized she was 21 and there wasnt a thing we could do but keep our home and lines of communication always open to her. But its hard to not feel like we failed her somehow, even tho we know we can never carry her burden of abandonment. I have never written this publicly to anyone, but your article gave me permission to speak. Its too hard to remain silent. But none of our family or friends know. Thank you for letting me open the door a crack. Shes only 21. He hasn’t hurt her. We pray she’ll regain the confidence she had felt before. But then, as you say, ” Our daughter has mental health issues”. She no longer keeps in touch with us and is under his influence. She appears safe and happy and that’s all we know. We’re trying to give her space to make her own mistakes and find her way in what is to her a very scary world that she does not want to be an adult in. We’ve laid a strong foundation with her and pray she’ll come back to Austin and pursue her talents again some day. Thank you for sharing your experience. We don’t know any other parents who have been thru what we have and we really need to join National Alliance for Mental Illness, so we can be prepared for what the future brings. Shes still young and has a lot to learn. We have faith that the foundation she and we worked so hard to create will support her through her lifes journey. But we won’t be here forever and her future is still so unknown….. Trying to keep the faith to remain hopeful. Im afraid to expose myself and my family publicly like this, but when I discovered Next Tribe, it instantly spoke to me, thank you!
Christina Hill says
Margaret Ames
Margaret Ames says
Thank you. This goes to the heart of the matter. If only is right.
Jennifer Castro Smith says
Thank you for sharing this. This kind of situation is absolutely heart breaking. Not many people talk about this kind of grief. It is especially disheartening when there doesn’t seem to be any effective treatment. No one talks about what it is like when your child is going through excruciating suffering everyday. They look to their parents for help and all the options have been exhausted. There isn’t any where left to turn. It is a very isolating type of pain. You are literally watching your child die a little more each day. I try to remain hopeful but I get so weary.
Melanie Ann Miller says
Raising two young children with disabilities, I know the pain. Even something as simple as a flyer in the pediatrician’s office “Your Child at 10” can be a punch in the gut.
Next Tribe says
Heart goes out to you. Stay strong!
Debra Oakley says
I needed to read this.❤️️
I shared it with my husband. Our child is so smart, talented in so many ways. She has struggled all her life with IBS, Vagus Nerve disorder, Anxiety and Depression.
All we as her parents know to do. Is be there for her.
She decided to move and go to College in Japan. She had a friend from high school that was in college in Tokyo. So we said ok. Give it a try. She has lived there 3 years now. She is teaching English as a second Language to preschoolers. And loves it. She still has her struggles. But she is trying. That’s all we can ask of her.
Next Tribe says
So glad it was helpful. Good for her, for finding her own way. Sounds like you’ve handled it all well.
Joni Consani says
Great article!
Julie Peters Brichacek says
Omg….your article is a sign that there is grace in this universe….. Exactly what I needed to read today. Thank you.
Next Tribe says
Wow! I’m glad this article meant something to you. I’m sure it’s such a hard situation you’re in. Virtual hugs to you.
Suzanne Thuring Auletti says
There are far more parents who can say “us too” and mean it than can say “everything is perfect” and mean that.
Beth Dawley says
This says it all.
Kim Scott says
Good article. I can relate.
Lisa Krupinsky Davis says
You post the best articles!
Next Tribe says
Oh wow! Thank you. We try. Please sign up to get a weekly update on new stories. And please spread the word. Thanks.
Belinda says
It was years before I could see the child in front of me and appreciate him instead of who I felt he should have been.
Susan Long says
Our son now 27 is on the autism spectrum. He is higher function, has a part time job and is talking about marriage with his girl. We have needed to rethink our goals many, many times. God willing he will do well.
Laura Payne says
Powerful article!
Sarah says
This is so important, and so beautifully written. Thank you—from someone who understands.