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!