Until There Is No More

Raising a child with mental illness is kind of like navigating your way through Times Square, blindfolded. In some ways you don’t know where you’re going or where you’ve been. Or what obstacles lie ahead.

I have been feeling my way around this for the better part of four years. And still, I can find no way out. It is the elephant in the room, the elephant in his head – large, angry and stampeding. But I cannot see it. Like a cancer, it grows in the dark, winding its way around my boy and refusing to let go.

They tell you: It is Hard. They tell you: It is Going to Get Worse. They tell you: But It Will Get Better.

What they don’t tell you is: It Will Break Your Heart.

When it is your child who has lost touch with the real, who is tormented by things you cannot see, hear or touch, who is frightened by things that lie in the dark corners of his mind – you are helpless. You put on a neutral face, hope that he KEEPS telling you what is in his world. You walk, blank-faced into the psychiatric unit and try to make it okay to leave your child there. You leave him with his pajamas, a pair of slippers, a pocket full of quarters for the phone – and all your yesterdays. There is nothing to fill the sucking hole in your chest.

They don’t tell you – It is Like YOUR Child Has Died. You miss the child you had, you do not recognize the one standing before you. He comes home, the demons are dormant. But he is an Impostor wearing the skin of the child you know. It will never be the same again. And you? Don’t know what to do with that reality.

They don’t tell you – You Will Feel GUILT. That in your secret heart, you do NOT like this child. He is mean, he is angry, he is abusive. He drains your energy, your emotions, your well being. In your heart of hearts, sometimes you hate it. This chaos, this life, this being who will not cease. That those feelings come with immeasurable guilt. You feel bad because you cannot connect with this child. That the disease makes it impossible. That you struggle. That you? Cannot make it better. You know that as a mother, your job is to keep your children happy, healthy and safe. Mental illness robs you of that role. And sometimes it robs your entire family of all three.

Until someone else challenges your actions. Your child. Your parenting. Until someone has the audacity to ask you:

“How much more of this are you going to take?!”

And that’s when it comes flooding back. Your love, your protection – the Mama Bear hiding inside your broken heart. You wrap those arms around your broken child like a shield, and let him know you will do all you can. And you tell those others around you:

“Until there is no more.”

For that is the depth of a Mother’s love.

A big thank you to my first guest blogger. Double Agent Girl is the amazing mother of an 11-year-old son. Together they are navigating the waters of childhood onset mental illness. You can read more about her and her son on her blog Between The Crosshairs.

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  • Mama Bear January 23, 2012 at 5:46 pm

    What an awesome post, putting into words the pain I am walking through today. Thank you.

  • TwisterB January 23, 2012 at 6:20 pm

    Great post!

    The clinical term for what you are describing is "Chronic Sorrow" which was first described in parents of mentally disabled children, but has since been extended to physical disability, chronic illness, and mental illness. It basically describes how you feel a great loss, but your grief never comes to a natural end in the way a death of a loved one would, because you are constantly dealing with the loss every day.

    Doctors aren't trained to deal with chronic sorrow but nurses are supposed to be. I don't know if chronic sorrow is in the DSM but I would expect it's responsible for the high rate of depression I've heard about in parents with kids with mental illness.

  • Anonymous January 23, 2012 at 6:21 pm

    Thank you for this post, it's exactly what I needed to hear today.

  • Double Agent Girl January 23, 2012 at 6:21 pm

    Mama Bear – I know how alone it feels. Sometimes it helps just to know you are not alone.

  • At Home Dad January 23, 2012 at 10:24 pm

    As a Follower of the D.A.G blog "Between the Crosshairs" I have today found myself here, on "The Mindstorm"

    Although I am a new dad, and more recently a SAHD, I can't begin to imagine what that feeling of uncontrollable isolation would feel like.

    My heart bleeds, every time I read one of her experiences, or situations they have found themselves trying to fight against, doctors, medications, school boards, or anyone else telling her, she hasn't or isn't doing enough; knows nothing of a mothers fight.

    My thoughts are with every one of you going through the same or similar situations. Keep up the fight, you ARE doing the right thing, your children deserve it.

  • Chrisa January 23, 2012 at 10:25 pm

    Dear Dad: My husband – a SAHD for 17 years now, the hands on, primary, day-to-day parent of my mentally ill kid, salutes you. (I do too).

  • changeMHLawsinKY January 25, 2012 at 12:52 am

    Dear Chrisa:

    I have only recently found the time to actually read your postings. My heart bleeds for you 'and' your son. I have lived in your shoes for over 20 years. My son was first given "mental health-psychiatry" labels at the young age of 4. Now at 24, he has been labeled with almost everything in the DSM IV, (axis 1) manual at some point in his young life.

    We have somehow survived the pain, the anguish, and YES, (TwisterB) … the chronic sorrow. Years ago, one of my doctors diagnosed me with chronic caregiver syndrome. Later, my endocrinology and central nervous system shutdown. Within 5 years, I was diagnosed with 3 serious autoimmune diseases ~ and at times felt like the depths of hell was here on earth.

    To cope, I finally turned to the Internet or Blogosphere. My son had become an adult; our world was totally upside down. All the pain, discrimination, social alienation, hospitalizations, drug trials, special diets, alternative behavioral therapies, functional behavioral assessments, replacement behavioral trainings (for all my son's teachers year after year) … did not prepare me for the fact that "one day" he would have the right, the choice or 'the option' to make medical decisions on his own, regardless if he was coherent enough to make the right decisions.

    Once your children become adults ~ your world will change fast. I encourage you all to learn what you can now, before they turn 18. Don't live in the moment as I did ~ learn how to brace yourself. Learn about the treatment laws in your state here:

    This is one of hundreds of articles I've written on how devastating it is to NOT be able to help my son.http://changementalhealthlawsinky.blogspot.com/2010/08/system-is-killing-my-son.html

    I pray that you will not have similar experiences. I hope the laws will change before then. However, it is not likely until more advocates like yourselves demand change!

  • Clayton January 27, 2012 at 12:06 pm

    Glad to see so many people giving such a good response. You can help a lot of people with your experience and way with words. Very honest and well-written. Keep it up starfish!

  • marythemom January 30, 2012 at 7:25 pm

    This made me cry. A very eloquent description of what I go through daily. Thank you.

  • Pat April 1, 2013 at 2:38 am

    I can relate to all of this. I have this chronic sorrow. I have never seen so much in words. My son is 26 and this has been a long road. He is in drug court and is sober. But his mental illness is not managed. He just went off at Easter at our house. We help raise his children and the three year old has seen too much. We are watching him as he has had some signs lately.