Blissful Moments

Do you hear that?  The long, soft, quiet sigh?  That's me, breathing through the end of Lily's second week in school . . . aaaahhhh . . .

It's premature as tomorrow is Friday, but today was a landmark day.  I dropped Lily off at 7:40 this morning, and before I could get on the freeway, she called to say she didn't feel well and would be calling after turning in her work, to come home.  I asked her to hang in there, try to breathe deep and stick it out.  Then I phoned the school psychologist, who graciously informed me that they have a plan in place for Lily.

Oh - My - Goodness.  Really.  They have agreed to route Lily through the nurse's office to her case manager/tutorial teacher, who will then work with Lily to help her regain her composure and stay in school.  And it worked.  The last couple of years at middle school, the office always had Lily call me to come and pick her up if she came in with a somatic complaint.  I always felt I had no choice.  If the nurse calls, you go pick up your kid.

Until now.  They're on it.

So I went to my classes.  I admired the sun and mountains and reservoir on the way.  I got to campus early and nibbled on watermelon and read before class.  Then I waltzed and spun and laughed.  I sat through my philosophy lecture without dozing off.  I had a healthy sandwich for lunch and then went for a swim.

Is this my life?  I feel almost like I'm dreaming, but not quite, because I don't want to miss one moment of each blessed day.  I'm listening to music I like, walking, feeling a delicious sense of peace that I've so missed.

And Lily is cracking jokes, doing her homework, getting up and pulling her things together for her day.  She looks really good, happy a lot more, and less zoned out.

That's not to say things are perfect.  She can still have emotional outbursts and be difficult when she's upset.  But the periods of happiness and productivity are amazing.  This is so good for all of us.

We're All in School!

Making progress here - and it's feeling really good!  Lily ended up starting the year at the local public high school, and we seem to have a team in place that's invested in her success there.  It's so interesting, because the new team is working with the idea that we need to accommodate Lily less so that she adapts to the world around her.  And I love it.

Seriously.  After walking on eggshells for the past year, afraid I'd stress Lily out and she'd end up hospitalized again, I'm shot.  We were on an unsustainable path, stretched to the limit by trying to avoid anything upsetting to Lily.  Like "ck" words.  When our TBS therapist was here last week and I apologized to Lily for saying a "ck" word (the word back I think), the therapist looked at me like I was nuts.

Aha moment.  "Ck" words don't necessitate an apology.  They are not dirty words.  What were we thinking?  Every time we made a special accommodation for Lily, she upped the ante and needed something more.  Classic boundary testing.  And because I was traumatized by what I thought Lily was going through, those boundaries became only about physical safety.  She was missing out on boundaries that reinforced appropriate and courteous behavior with family, friends and the outside world.

So yes, I contributed to Lily's difficulties by confirming her belief that she should be accommodated in every possible way.  She has her own dining chair, most of the long sofa, her own dishes, pots, glasses, flatware and cupboard shelves.  Even I was wondering where it all would end.  Shared space has been shrinking as Lily's need for personal space has grown.  Want a good laugh?  Lily was even instructing me on how I should be washing her dishes.  Whoo Boy.  I created a total monster.

And general consensus is that Lily truly believes that she needs the accommodations to be safe.  She believes that she's not well and manifests symptoms that she hears about or reads about.  But she may not in fact have schizoaffective disorder,  She may well have Bipolar Disorder, but I'm not sure of anything anymore.  It's been a bizarre year.  From calling Dear Abby on me to our disastrous efforts to have her in school last year, through my retirement this year so that I could cash out my small pension and be on hand 24-7 to care for Lily.

So, did Lily experience psychosis, or did she just think she was experiencing psychosis?  I thought I witnessed mania, but was it real?  I think so, but I certainly doubt myself more than ever.

But that's OK because we have this super cool group of professionals helping to sort it out.  And they're tuned in to the family.  What affects Lily affects us all.  And what affects us all affects Lily.  Finally.  Someone else gets it.  I may be on the very edge of reason, but I'm not crazy.  Hallelujah!

Fall Fabulous Fall

We are busily interacting with a new care team, and getting a very different perspective.  The new team, consisting of a therapist as well as TBS therapists,  a psychologist and soon, a new psychiatrist, are offering an amazing level of support.  Our journey will be an uphill battle, but I'm holding out for greatly improved function for Lily and more balance for our family.

One of the keys to this new approach will be the guidance I receive so that I can more effectively help Lily.  Holding appropriate boundaries, helping her to see that she isn't powerless in her disorder, but that she is strong enough to effect a different outcome.  I've been working on some of these boundaries for awhile, and I have to acknowledge that it's hard for Lily when I change the rules. Still, I'll continue, and I'll keep explaining to Lily as we go along why I'm making the decisions that I am.  It's not a lack of love that influences my decision to enforce a boundary, rather it's the strength of my love that allows me to make a change that's hard, that makes Lily unhappy.

In the end I simply want our whole family to function in a healthy, more free way.  A better environment will help heal Lily's relationships with the family and will lower my stress level.

Towards that end, I returned to school this week and am still working on getting Lily's school placement organized.  For me, it felt amazing to get back to the university.  The drive over was beautiful, focusing on fine tuning my schedule and contemplating the material I'll be studying was great.  I even have a social dance class for my PE requirement.  I was intimidated, but it seems like it'll be low key and fun.  I love dance, and I have no illusions about being a competitive ballroom dancer, but I love the movement, rhythm and joy of a waltz or the hustle.  Two sides of a coin.

I'm going to consider this a move towards getting our lives back.  I know there will be challenges, but if I've learned anything this past year, it's that we don't want to stay on the path we were walking, and I refuse to believe we can't do anything to make it better.  Yes, we can.

Wonder of Wonders

I was concerned about Lily's cycling early in the week - but things are markedly better.  Whew!  We haven't had to add in the Zyprexa, and I'm hoping that her current med cocktail is therapeutically building up in her system.  Because we went up to 50 mg of Lamictal, Lily is a little rashy.  We'll treat that with Benadryl and watch to see if she adjusts and that improves.  Fingers crossed here.

More good news is that we are scheduled to have therapeutic behavior services come in next week, and we are being offered family partnership services as well.  I may get some respite care, which would be such a welcome blessing.

More evidence of Lily's continued improvement:  Lily has been talking to her brother and doing fun things with him.  They're getting along better than they have in more than a year.  No matter how long it lasts, it's a great sign, and so healing!

Best of all, Lily has had these lovely periods of smiling and laughing this week.  At first it looked like it was tied in to some mania, but as that has subsided, the smiles and laughter have surfaced again.  Yes among tears, but still . . .

I am counting my blessings today.

Ouch!

We're suddenly in the midst of some big mood swings, seeing laughter one day and tears all day on the next.  We had cut out all Zyprexa and titrated up to 3 mg of Risperdal.  Lily is also having panic attacks multiple times a day.  I feel so bad for her, and once again so powerless to reach her.  When she's in this space, her health fears take over as well.  So - we're off to our family doctor tomorrow to reassure Lily that her heart is healthy and the scary symptoms she's having are only temporary and will be manageable.

I had an interesting conversation with DocD last week about Lily's transition to the new care team.  She shared what she most wants us to be able to share with the new psychiatrist, including tracking the psychosis with anxiety, indicating that the hallucinations may have been a function of the mood disorder as opposed to schizoaffective disorder.  I dearly, dearly hope so. 

I asked her for her thoughts on Lily's continued struggle with auditory sensitivity, and she said she sees that as an adhd symptom, not being able to filter out background noises.  I finally understand why she prescribed the Intuniv!  That sounds bad, and it's not like we didn't discuss the benefits of Intuniv before starting Lily on it, but her explanation at the time was that it would help with the anxiety.

I'm reminded again that this psychiatrist has been more in tune with what's going on with Lily than I realized, but her communication with me, even when I asked what she thought, was very limited.  I  think she was being cautious, wanting to see what would happen with Lily over a longer period of time.  The difficulty was that I was living with the fear and stress that came with trying manage Lily's illness while handling a life beyond the illness.  Work, bills, other kids, housework . . .  And nothing can compete with handling someone in full psychosis, so most of the regular day to day stuff went by the wayside.

So, my lesson about this is, treatment for an individual with mental illness has to include the family.  My ability to help my daughter has absolutely been influenced by the other needs and stresses in my world.  I need to be calm, strong, and not distracted, in order to take the very best care of Lily.  Family support is one piece that has been missing this long year.

Finally, I'm worried that these mood swings will interfere with the start of the school year, for both Lily and I.  I'm trying to get back in to finish my degree this year.  And I so want some normalcy for Lily.  I sound like a broken record.  The truth is that I want her to feel stronger, more capable, proud of herself.  She's an awesome, beautiful, talented girl.  I want her to be able to feel that.  And yes, I want to be able to move forward for my own benefit as well.

An option for Lily, if things destabilize further, would be to add some Zyprexa back in during this transition.  Lily is opposed to that, but I swear if she shows signs of mania, I'll force the issue before I'll leave her at risk to be hospitalized again.

Our Mixed Bag

We're transitioning to a new care team for Lily - and I'm very happy about our first contact.  We met with a fabulous district psychologist for an assessment in order to access mental health resources through our  public school district.  The end goal is to help Lily be successful in school.  She's extremely bright, and she has high academic expectations for herself.

Last year was so hard on so many fronts.  And yes - we're still struggling in many ways, Lily won't/can't stay alone, her anxiety is still sky high, her auditory sensory issues are worse, as are her fears about meat contamination.  But her psychosis symptoms occur rarely, and her mania is nearly non-existent.  Best of all, she hasn't required hospitalization since last October.

The transition to a new therapy/psychiatry team is long overdue when I evaluate Lily's level of functionality.  But like Lily's academic expectations, my expectations for therapy and psychiatry are high.  Lily and the rest of us still desperately need to make progress and develop a more workable day to day existence. 

I've left my job so that I can care for her, but will not be able to do that indefinitely.  Nor am I the best candidate to facilitate Lily's progress.  I can do my part on the home front, trying to keep things calm and help her feel safe.  But she needs, or maybe I need her, to be able to function in a world outside our doors.  And yes, the truth is that I very much need to have a life outside our home.  I'm suffering from cabin fever because Lily is still on crutches and hates to be outside.  I'm happiest outside.

So, my hope is that we can help Lily feel capable of attending school, getting out with friends, doing some of the normal things a 14 year old does.  Gain some level of independence.  I'm hoping against hope that's not too much to ask.  Please, please, don't let that be too much to ask.

This is where I have a small concern about the psychologist from the district.  In discussing options for school this fall, she kept going back to homeschooling.  That's not an option for me, not a good option for Lily.  Certainly not the best way for Lily to get a good education.  I understand many amazing parents home school.  Hats off to them.  But I can't do that.  I can't stay home, indoors, isolated, out of work, with an unfinished degree, and do a good job of educating Lily.  I'll crash and burn.

So, here's to hoping Lily's new team, with some calm and smart advocate action on my part, will help her make the progress we all need her to make.  If we fall short here, I'll have to find a way to get some respite time.  I've been fighting that, afraid of setting Lily back if she doesn't feel safe and happy, but I'm teetering on the edge, hanging on because I see relief possibilities with the new resources.

Frustration, Resentment, Surrender

Just when I think things are good - I get a reality check.  I finished my sunshine post  earlier this evening and went into dinner/evening activities.  Feeding animals, getting the bunny out for his exercise, getting out the separate meals for the vegetarian and non-vegetarians . . .

Lily started too get sort of whiny - I imagine she's feeling frustrated and down, getting a little bored and feeling neglected by friends.  I get that, I can sympathize and problem solve.  We agreed to call friend A and set up a fun day for next week.  But then she started in on her brother.  She doesn't want him to clap, make funny kitty sounds, typical annoying little brother stuff.

OK.  There ideally would be some negotiating, some compromise.  But they're siblings, only 16 months apart in age.  She yells, cries, whines, he responds by doing more of what she doesn't want him to do, neither one listens to me, Lily works herself up into a case of hysterics.  At some point I get him to back down and her to calm down. 

By now I've chased the bunny around because he doesn't want to go back up to his cage, he wants to hang out and play with the cat - and - poop all over my living room.  As I'm working on luring bunny up the stairs with some fresh romaine, Lily is deciding she's hungry again.  About two hours after I've cooked a full meal.  I offer foods easy to get out, fresh peach, instant organic oatmeal.  Nope, she doesn't want those.  Saltines?  She doesn't like them.  She wants stir fried carrots.  It's going on 10:00 PM.  I don't want to stir fry carrots.  I again offer other easy choices.  Lily wants none of them.  Lily is hungry, and wants only stir fried carrots.  If she doesn't get her carrots she's going to fall apart.  Loudly.

I'm trying to hold this boundary.  I've been fetching and cooking and doing for Lily all day.  Since she got up at 8:00 AM.

Lily says she'll cook the carrots herself.  I say fine.  I'm going to get ready for bed.  But Lily can't slice carrots while she's on crutches.  I grudgingly slice carrots and announce I AM GOING TO BED.  Lily crutches her way into the kitchen and asks me to get out the garlic press.  I tell her to get it out herself because  if she can stir fry she can certainly get out the garlic press.  I'm regressing into my own adolescent huff.  Ugly.

Lily gets out the garlic press and tries to manage it while balancing on her crutches.  She does not want to do this.  She wants me to give in.  She cries.  She drools on the floor while crying.  She's very good at this whole routine.  I know, because I was also very good at it once upon a time.  See me, I'm sad, I need someone to care enough about me to do this for me.  If you don't do this, you don't love me enough.

I do realize Lily's mental illness issues influence her distress.  But again, there has to, has to, be a way to hold appropriate boundaries so that her brother and I maintain some sense of sanity.  I've written about this many times.  We keep coming back to it, because when I do try to hold a boundary and I see her falling apart, I do give in.  But not graciously.  With frustration and resentment and then, with remorse that I wasn't gracious and cheerful about meeting needs beyond what my energy level seems able to support.

So I stir fried carrots and complained and scowled.  I vigorously brushed my teeth and made my displeasure known as I got ready for bed.  And I felt awful.

I gave in, and then proceeded to make Lily feel bad about my choice.  Some days I manage with so much more patience.  I love this kid.  And some days I'm the last person she needs in her space.  I would never intentionally do something to hurt her, but my frustration and inability to maintain rational actions on my tired days do hurt her.

I spent a few minutes on my bed, trying to be still and regain a sense of calm.  I went back out to talk to Lily, just to remind her that when I get upset it doesn't mean I don't love her, that I do in fact love her.  I make sure she's settled in and I gently touch her soft brown head before heading back to my room.

Tomorrow morning I'll again ask the universe to give me the strength and patience to be a good parent to Lily and her brother.  I gave up my childhood Catholic prayers many years ago.  My belief system fell apart.  But I have a huge need to reconnect with that part of myself that could find comfort in surrender.

Some Sundays I'm sorely tempted to drive up and park outside a church just to hear the music.  I can't bring myself to walk in and declare a belief I no longer hold.  But I sure don't have any answers now, so why not take comfort where I can find it?