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.

A Good Week!

Considering this is my first official month of retirement, it's been awfully busy.  But we're getting so much done - it's both exhausting and exhilarating.  I have health benefits through the end of the month, so all medical, dental and vision check ups have been in full swing.  Vaccinations, fillings, crowns . . . we're happy to be getting that stuff done.  Strange, I know.

But the best news for now is that I had an intake with the county psychiatrist to push through an evaluation for Lily in connection with her IEP.  This professional was wonderful - insightful, patient, thorough.  She indicated she'd push for an extradited process because she knows we're trying to get Lily's psychiatric care set up for continuity as we change health plans on August 1.  She offered to help.  Offered.  I went a little crazy and got a mocha frappuccino to celebrate on my way home!

Being busy has been a blessing in some ways.  Lily will be on crutches for another 4 weeks, she needs to be kept occupied, and I'm dying to get out of the house.  We've been so busy running off to appointments that we haven't had time to dwell on any of that.    I still have creative/summery things I'd like to do before we're all back in school, but I'll have to be patient about fitting in those fun projects.

Lily is more calm these days, perhaps a result of the introduction of Risperdal as we titrate down on Zyprexa.  She still gets anxious about what school she'll go to this fall, she wants answers now.  Gee, where'd she get that?

What I know for sure, is that in this moment, on this day, we're OK.  I'll take that.