Monday, November 5, 2012

The other child...


I have a daughter and she is not bi-polar.  She is funny, charming, beautiful and socially adept.  She is not prone to emotional upheavals.  Everyone loves her.  But I worry about her.  I worry what being raised with her brother is doing to her.  He is so mean to her so often.  Sometimes he is physically mean but mostly it is words.  Vicious words that she so doesn’t deserve.  I try to ignore the words – I punish when I have to or need to.  I see the look on her face when he is flipping out and she is left alone while her father and I attend to her raging sibling.  I see the look in her eyes – filled with tears – when she needs me to hold her but I can’t because I am either fending off her brother’s blows or holding him when he cries with horrified remorse for what he has just done.  I see her but I can’t be there for her.  Which child do I pick?  It seems unfair to pick the child whose behavior has caused this whole mess.  But it feels like he needs me more.  His issues so immediate and hers so easy to postpone.  She is so forgiving and loving.  She forgives me my neglect and her brother for his hateful behavior.  She does it so easily that I worry.  How much of her own emotional upheaval is buried beneath that happy-go-lucky exterior?  How much effort is she putting into being the good, nice child?  Is she really happy?

Writing all of this makes me want to sob uncontrollably but I am on an airplane and falling apart seems inappropriate.  I do not want the attention because I cannot explain why I would be sobbing.  I can’t explain to anyone how I feel about my kids.  It is so complex and no one has the time to listen to it if I ever had the time to tell it.

I love my daughter but feel like I am doing her an injustice.  I try to pay her extra attention and spend time with her – but I know that I don’t give her enough.  She wants me to herself and so often I have no place to put her brother.  So again – she is neglected.  I am thinking of instituting a Friday night girl’s night out for her and I.  Take turns deciding what to do – dinner and a movie – spa night – shopping.  She would LOVE that.  So why don’t I give her that time – even just once a month?  Because I am drained – I am not creative or enthusiastic anymore.  I am tired and weary and just want to get through the evening so that I can lie in my bed and mindlessly watch TV.  I avoid spending more time with her because it causes me to have to deal with the neglect of her needs full on and then live with the knowledge that it will continue.  No amount of spa days and dinners out are going to make up for the daily slights she receives and handles with maturity far beyond my own.  But perhaps while this times alone together won’t solve the greater issue it may give us both a little respite and ease the burden we both carry.  Spa days and pedicures won’t make her brother’s bipolar disorder go away but maybe I can carve out a little time to treat her really well and tell her how very much I love her and know that I fail her.  I can hold her close and try to make up for all that her childhood is lacking.  We could just escape for a little while and pretend that we are all we have.

Pictures of the past...


I am on a flight bound for Florida.  I have just gone through all the photos on my computer and named each person.  I have never had time or the inclination to do this before.  This is what I learned.  I learned that my son was not completely happy even as a toddler.  I think that I knew this once but I forgot.  Looking at the photos he is scowling in many.  As he ages there is more scowling and less smiles.  When he was little – he smiled more and seemed to enjoy life more.  This pains me immensely.  I am watching him developing and growing and I am helpless to stop the tide of his own emotions.  I don’t understand him a great deal of the time and frequently don’t like him.  I know I am supposed to say that I don’t like his behavior – and that is what I tell him – but deep inside I don’t like my child sometimes.  If he were a stranger – I don’t know that I would spend as much time with him.  I would be pickier and arrange the interaction to be less intense and frequent.  This is a horrible thing to say and feel about your own child.  I do not feel this way about my daughter.  It is not to say that I don’t sometimes find her behavior – attitude – demands irritating but I don’t ever not like her.

So what to do with this…I feel like I am on the sidelines watching my son’s disease progress and I am yelling to the coach (therapist) and the referee (shrink) to help him – he is hurt and going down but they don’t seem to hear me and the game progresses and my son slips further and further away from me – from my arms – from my understanding – from my life.  This is what it feels like.  This is not reality.  In reality my son has the best shrink anyone could ever ask for.  She is attentive, open and imaginative when it comes to my son’s treatment.  She texts me to see how he is doing and ALWAYS returns my calls even on the weekends and usually immediately.  We have a good therapist.  She also returns my calls.  As the years pass, I can see the quiet frustration in her mount.  She has nothing really left to give us.  It is not behavior management or modification we need.  We need medicine to put my son’s delicate and ever changing nervous system back on track.

There aren’t any books on what to do when you desperately love your child but don’t like him.  I’ve looked.  There are plenty of books on parenting a bi-polar child – lots of books on parenting – on medication – on behavior management – on diet – on just about everything except what to do when you just don’t like him sometimes.

I so wish that I could say that I only dislike his behavior.  I do dislike it a great deal.  My son has always demanded more from me than I have to give.  As an infant – he could not sleep without being on top or next to me.  He was almost a year old before he slept in his crib.  I know – my failing to detach and let him learn to self soothe.  But you don’t know – you weren’t there.  He would cry and cry and cry and cry.  This desperate cry.  I would try to wait him out but in the end he always won.  I couldn’t let him cry for more than about an hour before I gave in.

As a toddler, I would read to him, we would say prayers, we would cuddle and talk.  Just the actual bedtime routine would take 2 hours.  This is not including bathing.  Just in his bed – him and me for hours.  I would sing to him and we would cuddle.  I would lie in his bed and wait for him to let go and sleep.  Some nights this would take an hour – sometimes 2 or 3.  If I left before he slept – he would scream.  Screams that would wake the neighbors.  He would not stay in his room.  I would hold the door shut and cry.  Everyone told me that I had to stand up to him and gut it out.  Could I imagine what he would be like as a teenager?  It was hell when he was a toddler – he would just be bigger and I would not be able to hold the door shut anymore.

So where did I go wrong?  Genetically – I can’t really blame myself for that.  I didn’t have a choice either.  Not dealing with my own issues?  I was in therapy from the time I was 17 until I was 40.  I have dealt and am dealing with my issues.  I have not made them go away but I have been able to be honest about them and work to mitigate them.

Just writing this makes me feel sick.  I love this child with every fiber of my being and yet sometimes I just can’t be around him.  I feel it most intensely when he is clinging to me – screaming and throwing a fit that would be far more appropriate for a 2 year old not a 7 year old.  I just want to go away and not have to ever come back.  I only feel this way for a few moments and then it passes.  And I never go away – I try but it never works out.  I go to my room – he follows me. I lock myself in my closet – he bangs on the door and screams louder.  What does one do when you desperately need to get away and your child needs you just as desperately to stay?  Who wins?  Who gets their needs met?  In my home – no one.  I can’t give him what he needs because his emotional upheaval has knocked me off center and I am sucked into the vortex of his volatile emotional state.  I just need a minute or two but he can’t let me have it and I can’t regain my ground without it.  His needs aren’t met because his mother wants to be away from him and he is longing for comfort and touch – to be told that it will be OK.  And I do that eventually – but the uproar - not getting the 5 minutes I need to regain my composure hurts us both.  I have tried talking to him when he is “even” explaining that I just need a minute.  But like so much of his life – it doesn’t matter – he needs what he needs in the moment and that is the only moment that matters.  I envy him his presence in the moment – he occupies it so fully and I seem to only be able to briefly come up for air in the present moment and then reality deals another crushing blow and I retreat to a more comfortable place – a place where I do not feel under attack.

I still wish – I know it is not reality but I think that if I stop wishing and hoping that I may not be able to hold on.  I wish that I was not so easily knocked off center.  I wish that I was more patient – that I was not prone to my own emotional upheaval.  I wish that I was different or at least that I could be different for him.  On my more positive days, I know that he feels how much I love him and that our battles are not dissimilar to other parents and their “normal” children.  On my darker days, I am sure that I have ruined him and that every day he slips deeper and deeper into an abyss that even a mother’s love cannot save him.

I miss the little smiling boy that I see in my photos.  I am working on being able to look at those and cherish him – all of him even the parts that I don’t like sometimes.

Saturday, October 20, 2012

Where to begin...

I am not sure where to even begin.  The beginning seems like so long ago yet it really wasn't.  My son has childhood onset bipolar disorder.  A diagnosis filled with misconception, controversy and stigma.  If you are reading this then I am assuming that you are curious, know someone with this same diagnosis or have way too much time on your hands!  Regardless of why you are here - you are welcome.  I have been silent for too long and have so much going on inside my head that I just had to do something with it lest my head explode.  So my thanks to you for stopping by and pursuing this blog.

It has been a long, hard road yet I am lucky.  I have insurance, supportive family, a GREAT psychiatrist that calls me back on the weekends and resources.  Yet, there are days when I find that facing the day is just too much.  Days that I want to escape from but they haven't even started yet.  No matter the day, I get up and face it just like everyone else.  Some days I do this with grace and dignity and some days I do it with disgrace.  Some days are easy and light.  Some days are dark and disturbing.  Sometimes I am dark and disturbing.

So you know what I am writing about and possibly why I am writing.  I have a child with an emotional disorder and with that diagnosis there are certain challenges that I face on a daily basis.  I have tried participating in listserves with other parents just like me but I can't do it.  It is too depressing.  After reading just two of those posts I am filled with guilt and fear.  Guilt over not having it all that bad in comparison and fear of where I my life and the life of my son may end up one day.  I see why these women (mostly women) post, I see why they write when I am sure that they have no time.  Why they give up time that they could be sleeping.  Because they are silently dying on the inside.  Feeling so alone and misunderstood.  So they post because they can reach out to others who understand and get support for the unsupportable, understanding for the not understandable and hope when they are out of hope.  I know, I have been there.

I think that I would have started this a long time ago if I didn't have my friend.  Our sons met in preschool, back when things seemed normal, and she and I have weathered our sons storms, diagnosis and ups and downs together.  We have talked about starting our own blog - but both of us are barely keeping our heads above water.  So I am grateful to her but I need another outlet.  I need a place where I can write and get it all out.  I can call her but so often I get 2 minutes into it and I am interrupted and have to get off the phone.  These times leave me more deflated and upset than before I called her.  It is like being thrown a life preserver and then just as you are about to reach it, they pull it back to the boat without you grabbing hold.  Yes, there are days where I feel I am only a couple of gasps away from going under for good.

So here I begin.  I start with this.  I welcome your experience, strength and hope but I do not want your advice.  You have not walked in my shoes and have no idea what my life is like no more than I know what yours is like.  What is right for you, may not be right for me and it is up to me to figure that out.  I do not need to find your God, change doctors or diets or schools.  What I need is a place to let it all out and to provide a forum for others to do the same - without judgment or advice giving.  I do not want to tell you what to do or how you should feel - I just want to share with you what I do and how I feel about what I do.  So with that great disclaimer - I welcome you to my world.  A world that is filled with ups and downs, joyous moments and moments of great despair, loving hugs and explosive rages, with days that appear normal to the outside but are anything but on the inside, for hopes and dreams for my son's future and fear about what the future may or may not bring.  If you have a child that is similarly afflicted - you know what I am talking about.  You know it all too well and I hope that you will find time in your chaotic life to share it with us.  I have raised the white flag to my son's many red flags and I hope you can too!