Of Wolves and Blue Fairies  

Posted by Heidi in

Stuck to the ceiling or flattened to the floor--during his growing up years (prior to accurate diagnosis and effective medication), my Big Guy was usually one or the other. In adults bipolar disorder presents as years of depression (or mania) quickly followed by a bout of mania (or depression). Not so with children. In fact, the Big Guy was a rapid cycler which meant he could experience several bouts of devastating depression followed by intense mania several times a day. Or an hour. In fact, he was very often in a “mixed state” which meant he experienced both depression and mania at the very same time. The end result was almost always tantrums, aggression, even outright violence. I remember well the day I was six months pregnant with my second child and forced to call my husband and insist he come home at lunchtime because 11 tantrums from my very large five year old was all I could handle in the course of one morning.

Denial was an effective route to survival but little by little, day by day, tantrum after tantrum, it was, in fact, devastating. For the best part of the year during which I accepted that he would never be “normal”, never be “right”--always be wounded--I walked around my house/my hours/my days/my life feeling as if someone had kicked me in the stomach. It was a death of a child with no funeral, no flowers, no notes of sorrow. No closure.

There were many times when I would sob, wondering if I would ever again see my little boy, the one I carried in my womb, the one I nurtured through his first few years made difficult by constant ear infections, lack of sleep and much worry over his failure to walk when he should, talk when he should . . .

. . .the one I knew to be smart, funny, generous and loving and to have a sense of humor in spite of all his trials. We didn’t know that in addition to his physical, developmental and learning disabilities he suffered from a mental illness and so we did not know--could not know--if there would ever be hope for his recovery.

Today he is almost 22 and though medicine has been an immense help in balancing out his mood swings and minimizing the aggression, he is rarely ever his “true” self. Deep dark depressions are rare (we don’t have to hide the steak knives anymore, thank goodness) though he does experience a bit more mania than most of us are comfortable with. These are the moments I call his “King of Siam” moods, when he barks orders at people and insists that undereducated and thoroughly reliant him is capable of everything and anything at all.

True to form, he continues to be a study in contradictions. One moment his 6' 1" 260 pound frame is folded onto the floor, a la criss-cross applesauce, while he laughs like a hyena over a dog toy that lights up when it bounces. The next he is quiet and reserved, using words like “discuss” and “issue” and “anxious” and “lonely”. Fortunately he is as distractible as a puppy and can be easily persuaded to take up the lighted bouncing ball once again because there is no solution to the issues he wishes to discuss.

And then there are the times when the stars, moon and sun all line up, when Pinocchio vanishes and my real boy sits down beside me and begins to speak with intelligence, appropriateness and with soul. It almost always happens at bedtime when I am tired and mostly undone but I stay rooted to the spot because the celestial constellations only align as such perhaps once or twice a year--and because I never know what treasure he will pull from the depths of his soul to present to me of his own free will without my having to wheedle or cajole or threaten it out of him--and because I miss him so much.

Last night it was all about church. He felt that he wasn’t getting enough out of it, that he wasn’t doing enough to serve others. Naturally, these are words we would never hear from the wooden puppet whose strings are alternately jerked by the imbalance of chemicals in his brain then set adrift by the raft of meds he takes each day; this gentle giant who requires tons of service from others on a regular basis. He explained that his assignment to ask someone to say the closing prayer at church wasn’t good enough anymore. “I need a better calling,” he said, “maybe something like a teacher or the Bishop. Yes," he said with a nod of his head, "I would really like to be the Bishop.”

Quickly, I bit back a smile at this oh-so-obvious contradiction in his nature (this from a man-child who can’t dish up his own jello or spread his own peanut butter, who will never graduate from college, or hold down a real job, or marry, or live a normal life or ever, merely, truly live) lest I conjure up some emotion that would disturb the delicate balance of his brain and cause the real boy to flee.

I must have succeeded because after a while he moved from his dissatisfaction with all things church onto the opening of the door to his anxieties and fears—

--not silly paranoias about things that don’t matter but carefully considered wolves--as he shared his true thoughts, those of the perfectly intelligent, balanced and logical man he was for the moment, the same one I knew would be gone all too soon.

“What will happen when you and dad pass away?” he asked with a delicacy I hadn’t known he possessed. I would have expected him to say “DIE” like I would have at his age (both chronological and cognitive). At the same time, I didn’t expect him to say anything of the sort since he studiously avoids thinking about these things in an effort to keep his own brain level.

“Oooh!” I thought at this fingering of my personal fears and my chin began to wobble.

“I am afraid that M (sister) and P (brother) will put me in a rest home and leave me there.” Hadn’t I worried often and often about this very same thing? My eyes began to sting with tears.

“As long as all of you are alive, I’ll be fine but if even one of you dies, I.Will.Die.Too."

For the first time in a long time (after all, one can’t grieve every minute of every day) I felt that hollow-but-filled-with-pain sensation in the pit of my stomach as I tried to hide from him the tears that were flowing freely down my face. I struggled with the choice that all parents have to make, the one that prompts you to stay quiet when you would rather speak, the voice that reminds that some things must be learned and not told, that there are times when mere words cannot convey what life will teach.

And so I said the only thing I could. “I love you.”

He sighed and got up to go to bed, but as my boy walked away from me, his legs turned to wood.

(I have never done this before but I am asking that if you find this post helpful towards understanding bipolar disorder, could you please stumble it or link to it on FB, etc? Thank you! Meanwhile, more blog posts about the Big Guy can be found in the side bar.)

This entry was posted on Monday, August 15, 2011 at Monday, August 15, 2011 and is filed under . You can follow any responses to this entry through the comments feed .

29 wise, witty and wonderful comments

Heidi, you are so amazing. I am bawling as I read this. What a gift when you can have your real boy for a few minutes, but also heart-wrenching, when he tells you things like that.

What a big spirit he has.

August 15, 2011 at 1:25 PM

Bi-polar is something you can only true "get" if it has somebody in your close family has it. You just never know hour to hour who that person will be. This post hit right at the center. I've not seen the truth put so eloquently for a very long time in terms of this. Thank you for sharing.

August 15, 2011 at 7:37 PM

Your insight and your strength are amazing. And if your son wants to be a teacher---he can have my calling! I dislike it greatly:)

August 15, 2011 at 10:03 PM

All things are done in the wisdom of him who knoweth all things.

August 15, 2011 at 10:51 PM

Oh my gosh.

And after such a sweet and honest post, all I can say is "I love you" too.

August 15, 2011 at 11:22 PM

What a beautiful post!

August 16, 2011 at 5:50 AM

Such heavy things you are both called to bear.

August 16, 2011 at 6:50 AM

Your wonderful son has a great Mother! Thank you for sharing.

August 16, 2011 at 7:10 AM

What a beautiful, sad post. It gave me chills to think about having to answer those questions for him.

August 16, 2011 at 9:35 AM

I agree with Kazzy, anything I can think of isn't right. The only thing that seems to fit is "I love you", so beautiful Heidi, I hope you know I truly love you! Thank you for sharing this!

August 16, 2011 at 10:46 AM

This reduced me to tears, Heidi. So beautiful.

I have a friend whose little boy may eventually receive a similar diagnosis, and she's a single mom and so, so struggling. I'm sending her this. Hoping it helps her.

Wish I could hug you right now, this very minute.

August 16, 2011 at 10:53 AM

Thanks, Heidi, for the tender and insightful post...my mom was BP and as oldest child I often had to read her "moods" to help keep our home "semi-normal" for the sake of younger siblings...when all is said and done, all we can do is cherish the sweet moments as gifts and keep our hearts full of love as you do.

August 16, 2011 at 11:31 AM

Oh, Heids. What a beautiful soul he is. What a beautiful soul you are. This is incredible. My heart is with you both. I love you.

August 16, 2011 at 11:52 AM

Beautiful post Heidi. I have not left a comment in a long time. On this post I must...even though I have no words. You are an amazing mother...

August 16, 2011 at 6:53 PM

Beautiful, heartbreaking, and educational, all rolled into one. Thanks for this, Heidi.

August 16, 2011 at 6:57 PM

That was a very beautifully written post Heidi, about a very painful situation for you....and The Big Guy.
I was especially struck with your comment....like the death of a child, but with no funeral, no condolences or cards etc.
It certainly has made me rethink "disorders" and "handicaps".
I have many thoughts rolling around in my head of how this must be for you (for him) and I can't conjure up the right words to express them.
I did have to giggle at his wanting to be Bishop however.
I love you for your example, and your strength. I think any parent faced with that lifelong commitment to a disabled child deserves a front row seat in the Celestial Kingdom.

August 17, 2011 at 5:04 PM

That was very sweet and tender. I am sure it will bring some comfort and understanding into the lives of others who read the post and deal with similar challenges.

August 17, 2011 at 9:49 PM

Over the past few years I've watched from a distance as my mentally handicapped Uncle (now nearly 60) has dealt with the passing of his father - and more recently the small signs that Grandma is not always going to be his rock. Reading this... well, it reminded me of those glimpses of the person he is deep down inside, and made me grateful for so many relatives who have been willing to step up and take him in... Family is awesome sometimes.

August 18, 2011 at 7:31 AM

Oh, Heidi. This is beautiful and heartwrenching all at once. I wish I knew what to say, but don't, so all I have to offer are hugs.

August 19, 2011 at 8:55 AM

Wow, Heidi. Such a powerful post. I wish I had something to fix everything, but all I can offer you are my heartfelt prayers and my hugs. ((hugs))

August 22, 2011 at 9:05 AM

Heidi, you have brought me to tears. You are such a strong woman, no wonder God sent The Big Guy to you :) Such hard questions with no easy explanations. I love you. Thank you for sharing.

September 3, 2011 at 2:58 PM

And now I see how long it's been since I've made it past "C" in my google reader.

This was amazing to read. It brings me to my knees with emotion.

You are one of the strongest mothers I know Heidi.

September 13, 2011 at 1:59 PM


I love you, friend. I'm sorry for the struggles, and grateful for your willingness to tease the truth out of it all.

And this? This captures parenting in such a breathtaking way:

"I struggled with the choice that all parents have to make, the one that prompts you to stay quiet when you would rather speak, the voice that reminds that some things must be learned and not told, that there are times when mere words cannot convey what life will teach."

September 16, 2011 at 11:10 PM

What an eloquent and moving post. Thank you for writing it.

September 25, 2011 at 12:50 AM

Thank you so much for sharing this post. Tears streaming down my face and a lump in the throat.

September 25, 2011 at 8:17 PM

Thank you so much for sharing this post. Tears streaming down my face and a lump in the throat.

September 25, 2011 at 8:17 PM

Thank you for such a beautiful and heartfelt post. Some moments are so fleeting that they become precious. I enjoyed your eloquent telling of one of your moments.

September 25, 2011 at 10:15 PM

I have a son like yours and this post made me cry. Every once in awhile I will get a glimpse of who he really is and I treasure those moments. I had a spiritual adviser tell me that I can pray to see who Jon really is and it helps me love him more. Thanks for sharing.

December 29, 2011 at 7:00 AM

this is beautiful and heartbreaking and real. thank you!

February 23, 2013 at 1:50 PM

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