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Friday, June 14, 2013

A beautiful bipolar pixie who breaks my heart, every single day


I had to begin somewhere....

and she said the most amazing words.

 "Mom, can you look at the braille work I've done and tell me what you use to get it to raise?  I heard the most amazing phrase on Numb3rs! 'Zombie with a gun.  Waiting for words that will never come.'"  This is what my 8yr old Bipolar/LHON/ADD/Anxiety/Possible Aspergers but no one can ever agree/Pediatric Migraines with aura daughter (Bipolar Girl) greets me with as she bounces into my room. She hands me index cards that she has carefully written letters on and above them a very painstakingly copied series of braille dots from a list she printed off the internet.  An interesting set of behaviors from one 8 year old child, I know. I explained to her that to make it actual braille we would need an expensive braille labeler.  Last week I walked past her doing a word find with the word HIPPOPOTAMUS.  She had written down 'mus', as a word.  I tried correcting her and she informed me it was Latin for mouse.  I looked it up.  She's right.  As to her fascination with "Numb3rs", she gets very OCD about t.v. and books.  She insists on science-fiction or crime-dramas that feature extremely smart male figures, like Charlie the math prodigy in "Numb3rs" or Dr. Rush in "Stargate Universe".  Then she talks about them incessantly and drives all of us in the house stark-raving mad (most of us are already there, but still!). 
Bipolar Girl has Leber's Hereditary Optic Neuropathy (LHON).  She's lost enough of her sight to be classified visually impaired.   We're currently training one service-dog-in-training that we rescued from the local shelter, Tinkerbelle, a black lab mix sweeter than molasses.  The children and myself all qualify for a service animal.  So it's uncertain who this point who will benefit most from Tinkerbelle and who will benefit from near future dog/puppy choices.  We wish to train them very close together.  I also believe the dog has lifted the depression and doom atmosphere began by the beginning of The Divorce.

I'm also not sure whether the animal will better serve her as a traditional service animal (depending on how her experimental vision treatment, Idebenone, continues to work long-term) and the fact her bipolarism is extremely strong.  When she's in the moment - she puts that little girl with the spinning head in the Exorcist to shame.  Evil.  Stress is her main button.  State standardized testing this year made her suicidal.  I'll tackle that issue in another post.

I've said all these words, but realize I haven't really described my daughter at all.  She's extremely intelligent according to standardized testing and has huge blue eyes framed by black lashes as big as paint brushes.  She started struggling somewhere between ages five and six with depression and rapid mood swings.  She started throwing herself on the floor, banging her head and pulling out her hair to cope with the stress while she begged me for help.  She loves poetry.  At six, she made me buy her a $35 hard-backed volumn that I knew I'd regret.  I never did, she reads it frequently to this day.  I love her more than life itself.  It would be an honor to take a bullet for her.

I fear that my beautiful, passionate daughter who is now beginning to write her own poetry is being ignored by the world.  Bipolarism just doesn't get the press other disorders do, but I assure you - it's terribly disabling and terrifying.  You are trapped in a brain full of negativity and depression, unable to understand or figure out how to help yourself.  Many adult bipolar patients are misdiagnosed for years, sometimes decades.  Even childhood patients who fit the profile usually are diagnosed with an "Unspecified Mood Disorder", because many experts in the field feel hesitant to rush to a bipolar diagnosis.  It terrifies me to watch her rapidly-cycling between hysterical giggles and throwing household items across the room screaming like a mythical creature.  I'll spend the rest of my life fighting for my daughter's quality of care and a cure for this insidious disease.  I won't allow her to fall into it's black pit and never return.  The suicide rate for bipolarism is 20%.  My daughter won't be the one in five who succumb.

Please support my calls that more attention, research and money be put towards Bipolar research, both adult and pediatric.  Contact your local and national representatives in legislature to let them know this terrible disease has destroyed the life of too many beautiful, bright-eyed children for too long. Call and write letters.  Start internet petitions.  Let's raise a little hell, people!


Finally, a research study!