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.