Friday, November 5, 2010

Forging Ahead

I haven't posted in awhile.  Lily is home, and we're skating on thin ice.  I don't want this blog to be a pity party, and in my heart, my suffering is second to Lily's, but I have to give voice to this state of being, a parent of a child with mental illness.  I'm doing everything in my power to help Lily live a healthy life, trying to find some measure of peace and joy in her days.  There are three people in my household, and the remaining two also need some measure of peace and joy.  We're lambs on the altar of Lily's illness, and it has to change somehow.

The last couple of days have found us battling colds, or maybe the flu, as we navigate Lily's emotional storms.  She gets so distraught, worrying about her bunny getting ulcers from his too-long fingernails (thank you internet!), or about the multitude of side affects she's certain she's experiencing from her new meds.  And because she's in a depressed state, she can't be reasoned with, I have no credibility with my kid.  She wants "to talk to a doctor!!!"  So, to keep the peace, at 9:30 pm on a Thursday night I dial the psychiatrist's number and leave a message about Lily's possible side affects.  Or do I?  I'm at a new low, lying to my daughter in order to deal with her unreasonable state of mind, anything to avoid another trip to the hospital.

A trip to emergency means, among other things, no sleep, Lily getting hysterical when she's hungry and no vegetarian food can be found, and having to get someone to stay with my son, most likely all night and possibly the next day.  It's horrible, really.  Last time (3 weeks ago?) Lily screamed so loud and so long that her heart rate raced to 195, setting off equally loud and upsetting alarms.  I couldn't get her to calm down, all I could do was sit there and cry.  I don't like to cry in front of people.  I'm strong, in control, capable . . . except that I'm not.  Not when it comes to handling Lily's psychotic episodes.  When the ambulance came to transport her to the psychiatric facility, an hour away, it was a blessed relief, for me and for the nurses who were witness to Lily's rage.

It has been suggested that Lily is not just a child with bipolar disorder, that she has schizoaffective disorder.  Which makes so much sense, after these long three months of medicating for bipolar and still having her be in an unmanageable state.  The treatment is generally with the same meds, but acknowledging that she may have schizoaffective disorder helps me to understand the continued level of distress.

Lily did not get into the Stanford study I was hoping for, but the psychiatrist did phone me and discuss Lily's illness, and it was he who suggested a possible diagnosis of schizoaffective disorder.  I'm working on getting her in to see him for a consulation which will serve as a second opinion.

Last night was awful, but tonight has been - knock wood - better, calmer.    For today, I'll go ahead and post this mish mash, gibberish.  In the days to come, I'll try to get back to some kind of routine in regard to household, personal health and blogging pursuits.


  1. Oh my you poor thing. I hope things calm down for you. My heart goes out to your whole family.

  2. Oh my dear, this is SO NOT "mishmash gibberish". My thinks you are tired and frustrated but not incomprehensible; I am amazed that you find the moment to write anything. I think I would be comatosed in bed as soon as she crashes, avoiding it all as much as I could. Lately, that is what I've been longing to do here and my situation barely can compare. I have been thinking of you often, wondering how you and your two lovies have been doing. I'm so glad to see that despite a lack of possitive response and improvement to the meds, there is hope on the horizon for you and for Lilly with a correct diagnosis.

    Have you networked at all with the Child and Adolescent Bipolar Foundation ( I'm wondering if there might be a resource for you there. I am plugging away daily to try and raise awareness of the Grant they are trying to recieve from Pepsi Refress. Check out: or

    BTW, Did you put your email on your profile for Blogger yet? If not (and you'd rather not) e-mail me and I'll connect that way!

  3. Hi Mel - thanks again - for your understanding and support! And hey - it's a mistake to understate your own frustration based on a comparison - hard is hard, and dealing day in and day out with multiple child challenges can be exhausting and wrenching. You deserve (((hugs))) too! We never know what's around the corner.

    My wish for you today, tomorrow and every day, but one day at a time, is that you have a portion of peace, joy, laughter, and a perfect cup of tea (or should that be a martini?).

    My email is, use it anytime!