Happy Tears

Wow - wow - wow!!!  I can hardly believe we're living a completely different reality.  Amazed, grateful, humbled, stunned . . .

Lily is a different kid, so much more like her exhuberant self, but so much more mature.  She's sweet again.  Kind to her brother, even when he resists, is unkind to her.  Fun and loving with me.  Funny, beautiful, smart, aware.  It's breathtaking.

She's getting great grades and getting along with her peers. 

She's proud of herself.

And I'm so proud of her.  So humbled by her courage and honesty.  She inspires me.

Our world is changing so fast now.  We can play games together as a family.  We watch tv or movies together.  We laugh and play.  We get through our conflicts with much less trauma.

Lily is making tremendous efforts with her brother.  And he's holding on to a sense of bitterness over how hard things were. In family therapy, we talked about how he lost her, his closest sibling, when things got bad for her.  She targeted him for so much of her frustration.  And he loves her.  She's getting it - seeing him as the loving kid he really is.  And she's loving him back again.

But part two of all that is that he not only lost his sister in her illness, he lost his mother.  I was here, but not.  Lily needed so much, 24 hours a day.  I was terrified.  I attended to my youngest son, but in such a limited way.  I knew it wasn't fair, but could only pray that he'd be OK until things somehow changed. He behaved perfectly.  Got straight As at school.  Had perfect attendance, kept his room spotless.

And now he doesn't have to.  He's struggling more in school, spends too much time at the computer.  He's behind on his assignments, his room needs a good cleaning, and his behavior can be difficult.  Yet he still can be so loving, cuddly, sweet.  It's quite a combination. 

The other day he wanted to stay home from school.  We had a tough time, I made him go, even though he cried and yelled.  I told him I understood it was hard to face his teachers with missing work, but it was important to do it, that I knew he'd be fine. So he went, and he managed, and next time it won't be quite so hard. 

And after I tucked him in that night - (I know - thirteen, but it gives us time together!) I started to walk away, and he stopped me.  He said, "Mom, thank you for making me go to school today."

So heartbreaking.  He's incredible,  And he was thanking me for seeing him, for being there, being a mom, for doing what he's been needing all along.

I knew he needed me.  If I could go back and figure out how to keep Lily safe and be a better mom to my son, oh - I so would!  But I didn't know how to then.  I  still don't know what I could have done differently.  But I'm so profoundly grateful I can be there now.  That it's not too late.  We're so incredibly fortunate that he's resilient.  That he's forgiving and has a really good, kind heart.

Which brings me full circle.  Life is amazing right now.  I dind't know if we'd ever be this happy again.  Lily is now off not only the risperidone, but the topomax as well.  She's not tapping when she hears "ck" words.  She's easing up on her diet restrictions. She tolerates being around others better.  She even sat with us when we all had ribs on Mother's Day!  These are behaviors that caused considerable distress before.  Again - wow!

So Lily is recovering beautifully, from being misdiagnosed and over medicated, from her own problematic thoughts and fears, from being a young woman in a society that beats young women down.

Her brother is teetering on the edge of trust and hope, and I know we can nudge him over.  He is loved - by me, by  Lily, by anyone who knows him.  I'm getting a do over, and I'm not going to let him fall through the cracks.

I'm graduating from college next week.  Finally.  I got to finish - and I'm so grateful, truly grateful, for the chance to complete something 30 plus years in the making.  No more homework, no more disappointment that I didn't finish something so fundamental to who I am.  I'd love to go to grad school, but what I really want is to just be a mom for awhile.  To focus on the kids, and juggle work and home, without the trauma and drama of the last several years.

So happy.  We are just so happy.

Progress Report

It's been a very busy couple of months since I last posted.  Lily settled in to her new semester amazingly well.  Really.  I expected difficulty.  Transition is so hard for anyone, and especially Lily.  She has a new schedule, new classes, new teachers, new classmates.  Just when she finally was functioning well in the old classes.
And she handled it really well. I just can't say that enough.  She's become a champ. And the last several weeks have been so interesting!  Lily is now completely off the risperidone.  She has been for a couple of weeks.  We brought her down off of the anti-psychotic under the direction of her psychiatrist.

The truth is that I want this for her, but I've been scared that she would return to a manic, hallucinating, dysfunctional state.  She's had a few hallucinations, but otherwise she's still functioning beautifully.  Which is confusing for me, but so reassuring.  When I feel like freaking out over an episode, Lily's therapist reminds me that Lily is not the same person she was a year ago.  She's not sitting on the sofa, scared or doped up, wanting me right next to her, depressed and withdrawn.

What she is, is funny, witty, engaged in the world around her, appropriately angry, apologetic, sincere, and sharing her feelings with us.  With her therapist, with me, with her brother.  I'm humbled by her strength and desire to be authentic, to tell it like it is, while recognizing a need to be aware of others' feelings, of how she affects others.

She is also acting out occasionally in a developmentally appropriate way.  She's fourteen. She sometimes is that kid who knows everything, runs out of patience and picks on her brother.  So wonderfully normal.

So, why is she experiencing hallucinations? She's not sleeping enough.  Without the sedative effect of the risperidone, she has a harder time going to sleep, and sleeps much less than she was.  Sleep deprivation can cause hallucinations.  When this all began 2 years ago, Lily was having trouble sleeping.  Sometimes I gave her Benadryl to help her get to sleep, but her psychiatrist recently told me there can be issues with cognitive impairment/hallucinations there also.  He advocates a more natural approach for sleep regulation.  That makes sense to me.

So we're staying the course. Having written that, none of us got any sleep last night.  Lily was a bit scared, and asked her brother to keep her company for awhile.  They were both tired, and both ended up scared.  They both wanted to climb into my bed, and that just wasn't going to work.  A queen size bed isn't spacious enough for  a fourteen year old girl, a thirteen year old boy and this cranky old mom.  So we all camped out in the living room for a bit and struggled through the night. But - both kids went off to school today.

And me?  In spite of my gratitude and pleasure about Lily's progress, I'm stressed and overwhelmed by my responsibilities.  I'm trying to keep Lily on track, give her brother the attention he finally is demanding, complete my final semester so I can graduate with my BA, and deal with my own mother issues.  I'm not taking care of myself, which I think is pretty common in the world of parents of special needs kids.  But it's kind of eroding my confidence.  Being tired, achy and stressed out isn't healthy.  It's not who I want to be.

I want to be poised.  Confident.  Calm.  I want to be fit enough to move with ease.  My body is slowing down and any pretense of grace has long ago left the building.  I know what I need.  Regular walks outdoors. Good music.  Less tv.  More healthy meals, less junk food. 

But I know myself, I won't be able to do all of this right now.  An occasional walk would be the best start.  A walk resets my stress level.  I breath better, I look at the trees, water, scenery.  I listen to birdsong or crashing waves.  It gives me a mental  break.  If I can do that, and work on meal choices one at a time, I can move forward.  Not perfect, just better.

Then I can be more the mom I want to be.  And enjoy life, enjoy my kids.  They're pretty damn amzing.

And Downs . . .

Lily had a rough time last week, after a nice Christmas.  I'm still fighting the desire for an instant and complete return to my idealized version of family life, even knowing how ludicrous that is!  But writing it out helps me maintain some perspective, so here goes.

We traveled to a distant town to spend time with my older daughter and her family.  One of the motivations was to watch my grandson while she returned to work for the first week, a difficult thing to manage with a new baby.  This meant less direct attention for Lily.  It also meant she'd need to be somewhat independent with grabbing meals and meeting her individual needs.  She's been more independent in the past, so I know she's capable, but it didn't go well last week.  She was angry and frustrated, and also clearly jealous of the adorable 10 week old baby.

We also had titrated down a bit on her risperidone.  So when Lily reported a couple of hallucinations, and I witnessed her struggle to remain calm and co-operative, I wasn't sure if it was from the med change, the frustrations of being  away from home, or a combination of both.  We did get through the week, and a miserable ride home, but it wasn't pretty.

I also need to keep in mind that she's fourteen.  She criticizes most things I do, or represent, and that's part and parcel of the difficult push for independence from your parent.  But I don't like it.  Especially when she criticizes something she's asked me to do for her, a favor that meets with disdain and/or snarkiness.  Because, really, I'd much rather be doing my own thing than help someone who's rude to me.  I could be reading, walking, writing, even cleaning house would be preferable.

So once again, I'm trying to be mindful about balancing my response to Lily.  It's normal to feel frustration with a rude teenager, but this kid also needs a lot of reassurance.  I need to let her know when she crosses a boundary, so she'll learn from the experience, but I also need to be certain she knows I believe she's lovable, talented, capable, worthy.  Because she is.

In the end, we settled in at home and Lily returned to school this morning without any negative drama.  We get a gold star for that, as it is a group effort.  Yay us!

Reasons to be Grateful

Our family had a lovely, peaceful Christmas, and I'm thinking about this past year and how much things have changed.

Some of that is small.  Today I took out recycling and didn't think twice about leaving Lily in the house without me.  Last year she would have wanted to be with me, meaning I'd wait until she had her shoes on before venturing out the door and to the bin.  Even now, Lily is upstairs in her room, enjoying privacy, not scared, not yelling at her brother to be quiet (he's talking on-line to his school buddies), not screaming at me to be up there sitting in her room.  It's a different life in so many ways.

The fall brought milestones that felt miraculous.  Lily attended a dance party, and when I went in to pick her up, she was laughing, dancing, and holding hands with other kids.  I can't even begin to express how meaningful that is. 

Laughing.  Such a small act that says everything about her state of mind.  She spent last year either sedated to a stupor, or depressed beyond words.  I missed her laughter, the sweet, gentle and silly sound of genuine happiness.

Dancing.  To modern music.  Uninhibited.  Joyful.  In a room full of people.  Normal - and so very far from the emotions how she expressed  last year.  My jaw dropped.

Holding hands.  The child who wouldn't accept a hug, a light caress, a pat on the arm.  I knew she needed to be hugged and held.  I've needed to hug and hold her. And this, happily, is becoming more common.  Lily wants me to sit close to her, not because she's scared, but because she's willing to allow herself to be loved.  That's how it feels.  She gets silly and wants to duck walk, or poke me playfully when we're out. 

And there's more.  She's willing to be silly, look funny, make outrageous sounds together when we're out shopping.  She's having fun.  And so am I.

Which doesn't preclude conflict or adolescent drama, but gives me some much needed perspective.  When Lily is grouchy, it's balanced a bit by good humor at another time.

And she still will have times when she's overstimulated and needs space, or a quiet break.  But she's easier to work with when this happens.  She calms down faster and is able to move on, and sometimes to rejoin the group.

Socially we're still navigating and exploring how to connect with genuine friends.  And how to deal with the disappointments that come with being left out of other friends' get-togethers.  Lily doesn't understand why girls will talk about going shopping together and then fail to call her and let her know when and where.   She's still learning how to be proactive socially, how to do the inviting and pull something together.  It's not so easy for her.  She gets her feelings hurt, and she feels it deeply.

But I know for sure, that this is one more hurdle we'll overcome.  Lily is incredibly resilient.  She has an iron will, and I believe in her.  I  believe she can be happy.  That she has tremendous things to offer the world.  That she will ultimately use her experiences towards a good end.  And I'll help her all along the way.

Cool Kids, Geeks and Blessings

Life has recently kept me from my keyboard, and I've missed writing, but life has also been so very good recently!  Lily is functioning, beautifully, mostly normally, and that allows our family to function normally.  I am so damn grateful.  Truly, gushingly, tears of joyfully, grateful.

Lily is managing school.  Since our last set-to about attending (see Drama Drama Drama) she has been ready to go each morning with little or no drama.  She's not always happy about it, but she's doing it.  And . . . she's connecting socially with other students!  Not just the group of girls she thinks she wants to be friends with, but other kids in her classes who, it turns out, are actually nice.

If you haven't yet been through this kind of social torture, adolescent girls band together and either let you know you're really cool, or let you know they're only letting you hang out with them as a favor to you.  Not in so many words, but by cell phone manipulation.  You call and they answer, you're in.  You call and get their voicemail, don't expect a call back in this decade.

Lily thinks she wants to be in with these mean girls.  And it ticks me off that they're callous.  But meanwhile, Lily is becoming closer to kids you wouldn't find in the cool kid lineup.  I love it.  These are not the kids you'll find partying on the beach Saturday night.  They're kids who have quirks not so different from Lily, or at least quite different from the average popular kid.  So, they're more accepting of Lily if she says something a bit off, if she misses the social cues that fuel the in-crowd.

So being a mean mom has allowed me to give Lily the gift of normalcy.  She can be aggravated, bugged, repulsed, or just embarrassed by my mere presence.  She can be at school where a shared experience makes allies of unlikely souls, banded together by totally having to put up with their uncool parents and the oppressive regime of high school.  They are a motley group of survivors in modern society.

Thank you Spirit, Lord, Universe, for the blessing of a kid who is not cool.  Viva la difference!

Drama Drama Drama

Or should I say Teens, Teens, Teens . . .

Lily is accustomed to getting her own way in almost everything.  That dynamic has been in flux since starting with the new therapist during the summer, and of course Lily is pushing limits to hold onto control.  I don't blame her, but it sure makes life interesting in some challenging ways.

She's in school (YAY!!!) and achieving good grades - fantastic!  She's so smart, so capable.  But it is hard for her.  Socially, she really struggles, so being around hundreds of other teenagers is uncomfortable.  We're just beginning to work on socialization issues, and I believe we'll make good progress.

But she's becoming more resistant to attending school.  She's getting up in the morning and complaining about being confused.  I don't think I really buy that anymore.  She knows me well and plays on my sympathy.  I love her, I want things to be comfortable for her.  But that's not the best thing for her.  Life can be hard, and she needs to be able to cope.  I can't, don't want to, always pave the way for her.  She'll never become more confident if I'm stepping in so she doesn't have to handle things.

So I'm getting better at holding a hard line.  Last week she missed a day of school after a morning full of drama.  Crying, refusal, pleading that she was incapable of going to school.  I was rushed, trying to get her brother to school on time, not wanting to facilitate Lily's behavior.  I ended up leaving her home alone, her choice, while I drove her brother to school.  I told her to get her things ready and I'd take her to school after I dropped her brother off.

She phoned her grandma to complain that I left her home alone and didn't care that she didn't feel good.  She wanted Grandma to rescue her.  To my mom's credit, she talked with Lily, reminded her that she's a strong, capable girl and that she'd be OK.  She also told Lily she could stay with her while I attended my classes.  I wanted to get to my classes, and I gave in and took Lily to my mom's.

Today was different.  I got Lily's things together, insisted she get her shoes on and insisted she get into the car.  She cried and yelled all the way across town.  I kept telling her she'd manage, that she could get through school even if she didn't feel well.  I told her she didn't have to be perfect, she just had to be present.  She yelled some more.

We dropped my son off first and drove on to the high school.  Lily spent her time trying to provoke me.  Tapping on my face, blowing snot indiscriminately, kicking the dash.

Worst mommy moment?  When I told her if she didn't leave my face alone I was going to smack her.  I wouldn't, but I can't say I didn't want to.  I've already called her therapist to ask for better ways to handle this one.

Best mommy moment?  When I told Lily that even though it had been a fucking hard year, I was still her mom and would tell her what she needed to do, where she needed to be, that she would attend school.  Yeah.  I said that.

I parked across the street from the school and got out to walk Lily in.  I pulled out her backpack and waited for her to climb out.  Yes, I was that angry mom standing on the sidewalk shooting her dear daughter mean looks while angrily exhorting her to get out of the car and get into school.  When I finally threatened to take away her computer privileges for a week she got out of the car.  Then she wiped snot on me and I took computer privileges away for a week anyway.

Lily still wasn't ready to go to class, so we went right in to see the vice principal and Lily's resource teacher.  Can I just say that this is an amazing team?  Amazing.  They were calm, respectful, and firm.  They backed me up and efficiently confirmed that yes, Lily needed to be in school if she had no fever and wasn't throwing up.  I clarified that spitting on the floor didn't count as vomit.  Was that petty?

Lily was sent off to class with a tardy pass, and I left, tired but victorious.  Not elated, not celebrating, but having won an important battle for Lily.

She will attend school.

Family Functionality

I'm out of sorts this week, and it's my own fault.  Lily had a rough start to her week last Monday (Fun and Games with Law Enforcement) but we had a good session with her therapist on Tuesday and moved into a more positive mental space.

So what's the problem?  I was called out of town mid week, and planned to take Lily and her brother with me. My mom offered to take care of the kids so they could stay in school while I was away.  I had misgivings and talked with mom about her ability to handle things, but she reassured me she was comfortable with it.  So, I accepted her offer.

And it was awful.  Lily is worlds better than even a couple of months ago, but she has issues that will take time to address.  Mom exploded on Lily over an emotional incident.  Lily phoned me, and I talked through the event with her.  I calmed her down and suggested she approach mom with an apology and an offer to take care of kitchen clean up.  Before Lily could get to the apology, mom started yelling again, effectively shutting down Lily's efforts.

Mom wasn't able to regulate her emotions, even after she and I spoke on the phone.  Her tirade continued through the next day.  Lily was upset, but maintained her composure with lots of phone time with me, and lots of support from her little brother.  My older son was able to step in and care for Lily and her brother until my return a couple of days later.

So I have some mixed feelings.  On the up side, Lily did an amazing job of holding it together in a highly stressful situation.  I'm also really pleased that Lily and her brother bonded through this, supporting each other.  I'm so proud of both of them.

Then there's my disappointment over my mom.  When she's good, she's very, very good.  When she's bad, she horrid.  I was worried that she might not handle everything the way I'd like, but I didn't think she'd fly off the handle in such a spectacular way.  I need to talk to her about it, but things are especially hectic and it'll have to wait.

So I made a mistake when I accepted mom's offer.  We have enough history that I should have known better.  And sure, it brings up plenty of stuff from my childhood.  When Lily called and told me what happened, I knew just what mom sounded like.  That's not something I should expose my kids to.  But they love her, and there are times they can enjoy each other's company.

Am I teaching them lessons about acceptance, about our ability to handle faults and adversity?  Or am I teaching them to accept being treated unacceptably?  Will it make a difference if I ask mom to apologize?

The kids are moving on, but what are they taking from this?  Am I making too much of it?  I have no objectivity.  I wish I knew how a healthy family would handle this, but I don't think a healthy family would encounter this situation.  Time to get some professional advice.

Fun and Games with Law Enforcement

Lily and I had an interesting little incident last night.  We were in and out of urgent care, three times last week, for her headache pain.  After examinations, sinus x-rays and a CT scan, the doctors being consulted put their heads together and agreed that she most likely has a mild sinus infection being exacerbated by seasonal allergies.  She’s on an antibiotic and allergy medicine in addition to her regular meds.  Because the antibiotic is contraindicated with her acid reflux med, she has to avoid taking them at the same time.

As a result, her stomach is upset, compounding her discomfort.  I understand.  I’ve offered many home remedies in addition to the meds (saltines, flat coke, hot tea).   She won’t try the home remedies.

Last night she wanted me to take her to the emergency room at the local hospital.  I explained that we didn’t need to go, based on the test results and the advice of the doctors.  Lily became agitated and began crying and yelling.  Then she pulled out a previously effective tool, making crazy faces at me.  I realize this sounds insensitive, but here’s the thing, it’s nonsense.  She’s acting out, trying to convince me she’s going into psychosis.  This time last year, I was doing everything in my power to appease her and calm her down.  Which sometimes worked and sometimes didn’t.  Her new therapist has weighed in, saying she believes Lily does not have psychosis.  Does. Not.

Which doesn’t mean Lily doesn’t think she has psychosis.  But for me, it means we can, and are, working to get back to a normal level of relating and holding healthy family boundaries.  Which also means, Lily gets her way far less often than she did all last year.

But remember, Lily is the most doggedly determined being I know.  So when I refused to take her to ER and suggested she go to bed, she called 911.  Yeah.

The sheriff came calling.  Two deputies actually.  One spoke with Lily, one spoke with me.  I explained, clarifying the events of the last week and Lily’s medical and psychological issues.  Bear in mind, that while making her 911 call and speaking to the deputies in person, Lily was calm, articulate, and clearly not in physical distress.

So we had an evening of Lily drama.  Better drama than when I was terrified that she was losing her mind.  I’d much rather deal with a difficult teen than a child suffering from psychosis.  It’s just a lot less scary.  But that doesn’t mean I’m interested in taking on behavior problems right now.  I’ve missed three weeks of Monday classes because it’s hard to get Lily back to school Monday morning.  She is making progress, but as usual I want more.

I sound greedy, I am greedy, but I’m ready to have a life again, with moments that don’t revolve around Lily.  We’re actually pretty far from that.  But much of the time I spend on Lily these days is at least more productive.  I can help her with homework, facilitate a cooking project, or just talk and laugh together.  It’s mostly so much better, vastly better than even a few months ago.  But I still exist in a Lily centered household.  We need more balance.

Grief and Joy, Uneasy Partners

I have this tremendous, hard knot of grief trying to rise out of my chest.  I've been so low, and couldn't figure out why.  I'm in school, Lily is in school, my younger son is thriving, things are improving, dramatically.  But I need a good, ugly cry.  You know the kind, sobbing, snotty, cathartic.

I feel like someone who just survived a ten car pile up on the freeway.  Someone who walked away, not unscathed, but on her feet.  And after seeing things will be OK, I just fall apart, post crisis.

That's where I am.  I didn't know during this past year if we'd ever be OK.  I really didn't.  I was terrified that Lily would never function at her high level again, never regain her sense of absurd humor, never be open to affection, giving and receiving love, hugs, the small touches so important to close relationships.  I didn't know if she'd be able to function outside of an institution, if she'd be able to recognize reality, let go of her paralyzing fears.

I didn't know if she'd remember how much she loved her younger brother, how close they'd been in our super sized blended family.  How they were partners in crime when they were little, cohorts in mischief and silliness.  Would she ever stop treating him like an enemy?

I didn't know if she'd ever trust me again.  Let me in.  Listen and understand when I told her I loved her, wanted her to feel safe.  I've so missed holding her, like I love to do with all my children.  Encircle her with my love and protection.

And there it is.  That protective love that couldn't keep the demons at bay.  Couldn't protect her from her own tortured imagination.  Sometimes, too many times, I'd try talking to her and she'd just shut down.  Eyes open, but not seeing, not hearing the truth of whatever I was trying to get through to her.

I've had a hard time letting go of my fears about my own future.  Would I be able to return to school and finish my degree?  Would I be able to get off the couch we shared for so long because she was scared?  Would I ever be able to get outside and go for a walk by myself?  Listen to my music, cook with love and freedom, write more than a paragraph or two?  Would I end up spending my life providing daily care for someone who was suspicious and scared and unhappy, limiting my every move, practically my  every breath?  Someone I so love that it breaks my heart to see her and remember what she was before?

Before we were blindsided by symptoms of mental illness without a clear diagnosis.  Before we were held captive by a changing roster of psychotropic meds with life changing side effects.  Before our world stopped cold, in such darkness that I couldn't see how we'd get past it, regain any of the joy we all needed.

I knew I needed to keep putting one foot in front of another, but I didn't know where those steps would take us.  I knew I had to try everything I could to help Lily heal and to help my other children know I was still the mom who loved them and wanted to take an active part in their lives.  Even if no one else could see it.  I was, am, still me.  Still the parent who wants most of all for each of her children to be happy, healthy and well loved.

And yes, I still wanted joy and purpose for myself, outside of my children's needs.  Even outside of Lily's tremendous needs.  I've been so afraid I'd be lost in that.  It sounds so horrible, because I love her so much, but I've been afraid that my identity would revolve only around caring for her.  And that I'd resent it because that's not enough for me.

Guilt, guilt, guilt.  The most important part of my life has been my children.  Will always be my children.  But I want more.  I do.  I'm intelligent and creative.  I want to do something with that.  I need to do something with that.  But in the face of my child's suffering, how could I even think that?  She's been in hell.

So have I.  So have my other kids.  And I wanted out.  I didn't want to abandon Lily to it, wouldn't have, didn't.  But I yearned for a day on the beach, a night of peaceful sleep.  A life out of the shadow of anxiety, mania, psychosis.

We're on the other side now. Seeing change I hardly dared dream of.  I see humor and affection and creativity in Lily again.  The rest of the family is moving on, doing well, living a good, happy and productive life.  We'll have more challenges, some of them will involve Lily.  But we're coming to the surface, we can breathe again.

So I need to process this grief for our hard year.  I have to make way for the beauty and surprise of what's in store for the future.  Time to let go of my desperate grip on the moment and reach for something else.

One Day at a Time

I went into this weekend feeling like I wanted to focus on repairing our family.  We've gotten so far off track, we were living a sort of parallel existences, in the same small living space, but so separate.  Eating together was, still is, rare.  Being in the same room without arguments, yelling and tears, has also been rare.  Little glimpses of harmony, like our car trip to Southern California in August, made the typical daily grind all the more frustrating because I knew what things could be like.

But we have to find our way back, or how are my kids ever going to be able to function in an intimate family dynamic?  Family meals with conversation, game nights with some laughter, mellow outings just for fun  . . .  these things have to coexist with the arguments so that the kids know it's normal to disagree, to get angry, and then to reconnect, make up, love each other and move on.  Let some things go, by keeping perspective.  We don't always get our way.  And that's OK.

I've been trying to make everyone feel like they could get their own way whenever possible.  Meal choices, activity choices, separate from each other to avoid conflict (which it didn't anyway!).  Now I'm remembering and tuning in to the concept that I can make a unilateral decision for the good of all, or at least in my estimation, and be the parent.  Or put another way, they're not always going to be happy with my decisions.  Oh well.  They need the lesson in that.  You don't always get what you want, and you can still participate and have a good time, or even do something just so someone else has a good time.  That feels good, to do something for someone else.

Rome wasn't built in a day, and we won't become the ideal healthy family in a day.  Not that I'm expecting ideal, but a closer version than we have now.  So this weekend I settled for another round of communal housecleaning (rotating core list with an expanded set of responsibilities) on Saturday morning and sitting down to Sunday dinner at the same time and place. 

I really wanted to take the kids for a fun outing, and had made tentative plans for whale watching, but the weather didn't cooperate, which was just as well.  Neither Lily or her brother was all that interested in whale watching, and I realized I was creating more pressure than anyone needed.  We need more normal, low key.  We don't really need a forced fun event.  Special events will happen, but rushing that is a mistake.

So I think the goal of feeling more normal is good.  Our new life has been termed the new normal by our local NAMI chapter.  I understand it's beneficial to lower expectations when you're in crisis.  But I threw out all my expectations, and that's going too far.  I'm claiming some of them again.  It's good to shoot for a higher level of functioning.  We will do this, one day at a time.

High Drama, Good and Rough Times

Yesterday you could have knocked me over with a feather!  Heck, I would have somersaulted and rolled with it! Lila and I went to the market, both of us in good spirits.  When we got out of the car and walked across the parking lot, Lily put her arm around my waist and wanted to duck walk with me to the store entrance.  Seriously.  So we did, laughing all the way.

My daughter voluntarily displayed physical affection.  To me.  I'm still stunned.

Later in the evening she was stressed out about homework, and got teary.  She has one particularly intense teacher and she doesn't yet know how to deal with his energy.  After listening to him on back to school night, I'd say he's a bit different.  Eccentric, but not necessarily accepting of others' differences.

So, I helped her with her homework, rubbed her back and got her settled in bed.  This morning she got up and got ready, but balked when we pulled up to the school.  She had an anxious reaction, upset stomach and tight throat.  I spent a few minutes trying to reason with her  and get her to just go to class, but eventually I needed to drive to my son's school to drop him off.  Lily went with me, so I found a nice place to park after getting her brother to school.  I gave Lily some ativan to take the edge off the anxiety, and we talked through some of what's bothering her at school.  She couldn't pull it together enough to go to school at that point, so we headed home, with the understanding that she wouldn't have access to electronic entertainment until she returned to school.

I was so disappointed and frustrated.  Angry at myself for not getting her to go to school, frustrated with her for not just sucking it up.  I put on some music, one of my favorites things to do, and went home to clean house.  I missed out on my walk (I tried with Lily but she didn't feel well) and my peaceful morning to myself.  I canceled an appointment. 

Lily finally was ready to try to go to class after lunch.  She was going in time to sit in on the dreaded teacher's class, so I have to give her credit.  She's trying.

But I'm super sensitized to the fear of backsliding.  I can't go back and give up my classes, the dancing, the progress we've made on the home front.  I don't want her to slide back into depression and fear.  I want to see more of the laughter and affection.  I do realize she's made incredible strides.  That's all the more reason to want to see it continue.  I think we were mistaken about the level of illness and her inability to cope last year.  She can do more than we realized.  But I need more help keeping her on track.  I need a better game plan, so that we don't flounder before school.  I know our therapists will help with that.  Thank goodness.

Craaazy Tired (Yes, I used the "C" word!)

Things are still so remarkably good, I'm counting my blessings all the time.  The small danger with this is that I have my rose colored glasses firmly in place, and I tend to overlook warning signs and smallish issues that I honestly need to stay on top of.  So, this is me, trying to stay real while enjoying a completely different world.

Lily is doing well in school.  She doesn't always want to be there, and keeping her on track with attendance will be my challenge.  So far, I've been able to get her to hang in there, even when she calls me because she doesn't feel well.  That's a huge accomplishment!  Having the school on board with that is amazing.

The IEP meeting is coming up, and her therapist will be there, so I feel really good about getting what we need.  Her english teacher may not be a great fit, but that doesn't mean she can't handle it.  I'm keeping very close tabs on her school experience.

So, yeah, I'm tired.  Still trying to accommodate Lily and her brother enough so that they stay unstressed with homework and on track.  I bounce back and forth between them for homework help when I should also be getting some of my own homework done.  But that's largely an issue of time management for me.  I don't have tons of time because of the driving I do every day, but I can get more disciplined about what I focus on.  And the kids both willingly participated in sharing chores on the weekend for some collective house cleaning.  Awesome!

My time management challenge is about the fact that I actually have some now and I want to sleep and visit people and take long walks and shop and read and veg out and go to the beach and on and on . . . all the things I've been missing out on.  But it is time to get serious about my classwork so that I don't get too stressed.

Going to dance classes on the weekend has been absolutely fabulous.  I'm remembering how much I really love dance.  I learned the fox trot last weekend and had so much fun - I feel a little bit like the old me, before kids and other obligations.  I'm not wishing away my kids, who I adore with nearly everything in me, nor am I rewriting my awful childhood.  But I do remember having dreams and a certainty that I could accomplish whatever I chose.  I still have that core belief, along with an understanding that nothing worthwhile will come without a lot of work.

So right at this moment in time, life is good, I'm happy and grateful and feel like we're on a very good path.

Thank you, and goodnight.

I am a Weepy Mess!

I am, truly, but it's a good thing, really!  We had a family therapy session today with Lily's new therapist, at our house.  No kidding.  She comes to us, and she's amazing.  Smart, experienced, intuitive, thoughtful.  She is able to explain things to Lily in a way that seems to be breaking through Lily's hard shell.

It's no secret that this year has been hell.  Lily has suffered so much, and she is depressed and angry and fearful.  Not that she can articulate those emotions (except for the anger, but then that is misdirected).  She has been wanting answers as much or more than anyone else.  So she researches and tries to figure it all out, and when the current therapy or med isn't doing the trick, she self diagnoses with another ailment.  She doesn't trust that I can help her figure it out, she seems only able to trust herself.

But Miss M, the new psychologist, knows her sh*t.  She efficiently and clearly explains how disorders differ and what she looks for in a diagnosis.  And - she's on Lily's wavelength.  Lily has little patience for mindfulness tools that have directions.  She doesn't want to process something as simple as: stop, place your hands on your knees, take a breath for 3 to 4 seconds, slowly exhale, repeat 3 to 4 times.  She has a valid perspective.  When she's angry, frustrated or fearful, she needs something she doesn't even have to think about.  Miss M is on this.  She totally empathizes.  Even I didn't understand this.  I kept thinking, how do you know unless you just try? 

And get this.  Miss M, when I expressed my wish that she let me know where I can improve my parenting, said she thinks I'm a good parent.  I said, oh, well but I get impatient and grumpy sometimes.  And Miss M told me that even Freud said we all should be able to have our rough spots and lumps, that we don't have to be perfect.

So, wow.  That sums it up and yet doesn't even begin to touch this experience.  We have incredible therapeutic behavior providers coming to our home multiple times a week.  The school is frigging fantastic.  I even went to a dance class last weekend.  A dance class.  For me.  And I had fun.  How long has it been since I honestly had real fun?

So yes, I am just completely weepy.  For how amazing things are in this moment.  For how horrible things were the past year.  For the support I now feel.

Can I just say, I've been so scared.  So scared that things wouldn't get better.  So scared that I was to blame (even when I know better, I felt like she's my kid, I'm supposed to have all the answers and understand what she's going through).  So afraid that because I'm a single parent and don't have anyone to step in and share this responsibility that I could be handling it all wrong.  So sad that I didn't have anyone to share this responsibility with.  No one to really lean on.

I feel so relieved and exhausted that I could sleep for a month.  Not that we don't a boat load of work ahead of us, but I'm not doing it alone.

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?