Tag Archives: fear

facing the monster

This week I finally faced down the big bad monster.

A few months ago I wrote this post about my experience getting my first ever ticket for anything.  Two days after my 50th birthday, riding a wave of good self-esteem, it was as if I’d gotten into a headlong collision with a tractor trailer.  Really.

I know it sounds very over dramatic, and compared to everything in my life that HAS or COULD go wrong, getting a ticket should not have been a big deal.  But it was. A HUGE deal.  Not the ticket in and of itself, but the experience of it, which I described in the earlier post.

I had some decisions to make.  I was so tempted to just pay it and move on with my life.  That would’ve been the easiest thing to do even though it would have meant points on my license and the possibility of my insurance premium rising.  Finances are tight, and my sense of guilt at being “bad” and getting “caught” led me to want to throw myself on the mercy of the court.  But – even more than that, I was so shaken by my encounter with the officer, I felt like I needed to face him again and not feel so weak or afraid.  My hands and body literally shook as I signed the form that declared my plea “not guilty.” And then I waited to hear about my court date.

anxiety_0Overall I’ve been doing ok processing the experience, although I must say that I have had waves of anxiety about it at times.  It’s been a kind of free-floating anxiety because I didn’t know when it would be resolved, so I was living with this question mark over my head and on my shoulders.  It’s been taking up a lot of space in my thoughts and worries.  Fighting off the bad girl feelings.  I have had moments thinking about it that I have felt very weak and vulnerable – two feelings I despise.  When you grow up in an abusive/alcoholic home the two things you do NOT want to feel are weak and vulnerable.  You want to disappear from view, or be a strong superhero.

Well, a few weeks ago I got a letter from the court telling me my appearance would be on May 4th – so I had weeks to psych myself up for it.  I was tempted once more to just drop it, and go with whatever the court decided, saving myself from having to face the police officer who wouldn’t even look me in the eye when he handed me the ticket.  (Really, he never made direct eye contact with me.  If he were in a line-up I wouldn’t have been able to pick him out.)  Also, because of the authority issues I described when I got the ticket, he had become larger than life.  I didn’t want to face him.  But I knew it was important.  I needed to face the monster.

It was much different than I expected.  I’ve never been to court before except when I was picked for jury duty and when I divorced my first husband.  As I drove to the courthouse my heart was racing and I had to do a lot of positive self-talk.  “It will be alright.  You’ll be fine.”  I repeated Jesus’ words from a few weeks ago in worship reading:  “Peace be with you.”  “Peace.”  I continued this as I walked through the town hall and courthouse and went through the metal detector and was directed by the court’s officer to the corner of the courtroom where THE officer was standing.  There he was, the monster that wreaked havoc with my mental stability and self-esteem.  THERE HE WAS.

As I walked over to the officer – as I went to face the man who became a bully to me – I felt a wave of panic, and had to do a lot more self-talk to present myself in a respectful but strong manner.  This was the reality…  He didn’t look as tall as I remembered (which is logical since in my only other encounter with him I was sitting down and he was standing up).  He still didn’t look at me straight on, more like a side-glance, but his features didn’t seem as harsh (perhaps because I was seeing him in a fully lighted room and not outside in the dark).  He actually looked kind of SHY.  He also had a bit of a slouch to his shoulders.  Even with his uniform he didn’t seem threatening at all.  It was all a quite pleasant let-down.

He quickly asked me what he gave me the ticket for, I told him, and he responded with a lesser charge, which would NOT include points on my license.  And I quickly agreed.  After this I had time to sit and watch those ahead of me go before the judge, so I knew how to respond when it was my turn to walk up to the podium.  The sitting and waiting my turn was the longest part.  My brief conversation with the officer and my time before the judge?  Maybe five minutes.

When I walked out of the court my legs were shaky and I felt like I could’ve cried – FROM RELIEF.  All the build-up of five months was now gone.  I felt tired and spent.  I went home, took off my dressy court clothes, put my pajamas back on, and went to bed for a much needed nap.

I faced the monster – who really wasn’t a monster at all.  And I never would have known that if I ran away from the situation and taken the easy way out.  I’m glad I did it.  I just wish I didn’t need to.  I wish I didn’t have such issues with vulnerability and authority and power and control and anxiety.  But I do.  I’m working on them though – and facing a monster is a big step.  A big deal.

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authority

Remember last week when I posted about how proud I was of my birthday and thankful to be in a good place?  Yeah, that.

What a difference a week makes.

One of the things that can happen when you grow up in a house with alcoholism and/or other types of abuse is that you spend your life trying to fly under the radar.  You don’t want to call attention to yourself, you don’t want to stand out, you try VERY hard to play by the rules.  You do your best to BE the best because you take the responsibility of the whole world (or at the very least the survival of your family) onto YOUR shoulders.  Failure is not an option.  Yet you KNOW you’re not perfect.  In fact, you feel pretty badly about yourself, so fear and shame and embarrassment of being exposed are constantly hanging over your head.  You can’t let anyone see how imperfect you (and your family) are.  The other thing that happens when you have a history such as mine is that when it comes to authority figures you either develop a tough chip on your shoulder, or you shrink and become a timid, cowering shell (I am the latter).

I’ve worked for YEARS in therapy on this stuff.  I’ve worked for years OUT of therapy on this stuff – which is my way of saying, that “in or out” of therapy, the work is ongoing – because LIFE is ongoing.

So, something happened last week, right after celebrating my birthday, which has brought my sense of pride and confidence to a screeching halt, and it has to do with authority.

I got pulled over by a police officer last week.  I won’t go into details, because honestly I really am embarrassed about the whole incident, and I’m only telling you so I can discuss the larger authority issues and how I’m coping.

Here has been my response.  I stayed pulled over long after the police officer drove away – crying. Sobbing.  Unable to drive.  I called my husband from the car and he was able to “talk me down” so that I would be able to drive home.  When I got home I had a mini-breakdown.  I cried and sobbed and cried some more, giving myself a monster headache, crying myself to sleep and waking up the next morning with my eyes practically swollen shut from crying.  I’ve experienced massive anxiety (although not panic) every time I have gotten behind the wheel to drive since.  While I’m driving my anxiety is high, checking and double checking almost every move I make (or don’t make).  And I haven’t been sleeping well.

Last night I had to go to the same place I was travelling to last week and purposefully went out of my way to avoid the route I took then, because I couldn’t face driving past the spot where I was pulled over.  By the time I got home, I was in tears, shaking.  Another headache…

This reaction is more than the police officer, more than being pulled over.  It’s about how I cope (or don’t cope) with authority figures – with those who have real or perceived power over me.

This is about stripping away the facade.  This is about my failure to live up to the good girl image – of always trying to do the right thing, to follow the rules, to fly under the radar – of being caught and even called out for not being perfect, for falling short and being bad.  The feelings of shame and embarrassment have, at times, been overwhelming.  I’m walking around with a sense of dread, like the weight of the world is on my shoulders, and I’m failing.  I’m sure my husband would love to repeat the, “Snap out of it!” scene of Cher in “Moonstruck.”¹  Heck, I’d love to snap myself out of it too! Instead, what he IS saying is, “This happened.  Move on.  You’re going to make yourself sick.”

But moving on, removing the weight from my shoulders, is easier said than done.  Once those old weights of shame, fear and embarrassment hit, they don’t let up very easily.  It’s hard to move on when the ball and chain keep you from picking up your feet.

But there are a few things that give me hope that this won’t turn into a major episode.

  • I am recognizing my reaction for what it is – an authority figure problem.  I know this is more than my interaction with this one particular officer, and I’m not trying to ignore it, or hope it will just go away.
  • I am able to stick up for myself with my husband.  When, at one point, he started to feed the flames of my shame (without knowing it) I told him point blank, “You need to stop.  You are NOT being helpful.” To his credit he asked what he could do/say that would be helpful.  I told him, and he listened and responded (he’s a good guy!).
  • I am practicing good self talk.  Deep down I know that I’m not a horrible person.  This is the biggest change.  It used to be that deep down I knew I was a horrible person and had to convince myself otherwise.  Saying to myself, “You know you’re a good person Lisa, you’ll get through this,” is VERY different than, “This is just proof of how awful you are.”  I am actively combating the negative thoughts, with positive messages of my self worth, and accepting the love of my family.
  • I am using my anger positively to fuel my “moving on.”  I’m angry at the officer for being so cold and robotic.  I’m angry at my father for, well, EVERYTHING.  I was in a good place till this happened, and I will not let this drive me back to a dark place.  I’m channeling my anger OUT, and not IN.

Sometimes these things happen – events that remind us of pain and suffering, being brought back to places of shame and weakness.  Many times they hit us when we least expect it, and that too, is part of our reaction – “Damn it.  I thought I had gotten over this.  I didn’t see THAT coming.”  So the reaction isn’t just about the actual literal event, it’s about connecting it back to our past, and our SHOCK that we still make that connection.

It’s been a week.  Both my husband and I are keeping an eye on this.  If I don’t start to “lighten up” in what we both consider a reasonable amount of time, then I guess I’ll have to call the doctor.²  This is a difference from the past too, when I would keep all this stuff bottled inside and shut him out – a sign that, overall, I’m in a much healthier place.  Still, prayers and good thoughts are much appreciated. Thanks.


¹My husband has never EVER hit me.  I am the one who is thinking of this scene as an example of his feelings of frustration and concern, NOT him.  Actually it represents my own frustration with myself! I just wanted to make that perfectly clear.

²My reluctance to call the doctor comes not from a disrespect of the medical/psychiatric profession.  If you’ve spent any time reading this blog you know I have the HIGHEST respect for both therapy and medication.  I’ve gotten to where I am now BECAUSE of the work I’ve done in therapy.  But finances are tight, so if I possibly can, I’d rather handle this without having to pay a bill in the process.

the disturbing reality of our mortality

My denomination, the Evangelical Lutheran Church in America, posted this picture on their facebook page for Ash Wednesday:

Evangelical Lutheran Church in America (facebook page)

Evangelical Lutheran Church in America (facebook page)

It’s a beautiful image – yet disturbing at the same time.  In our culture, talking about death is avoided, confronting death in the face – really avoided, confronting the death of our children – avoided at all costs.  Some people might consider the above photo to be in poor taste because it features a child.

Death is ultimate equalizer – no one escapes it.  We might be wealthy enough to afford the best medical care, but in the end, no matter how much medical expertise we can buy, we eventually succumb.  With medical advances (and again money) we may be able to hold it back, but in the end it’s only delaying the inevitable.  We all die.  And with the exception of suicide, we have little control over how and when that happens.   And death is frightening.  It’s frightening because of our lack of control over it, and our lack of concrete physical knowledge of what happens next.  If we could be guaranteed heaven, our earthly death would be no big deal.  Problem is we don’t have that.   I have FAITH there is heaven.  I BELIEVE that Jesus has prepared a place for me and all the baptized.  But faith and belief are NOT the same as knowledge.  Can I prove there is an afterlife?  If we could prove heaven’s existence, no one would fear death and everyone would (not believe) but know there is God and live and die accordingly.  Alas, we cannot.  Resurrection is a matter of faith.

But here is where I find comfort in the above photo, rather than poor taste.  Here is where I find joy in the photo, rather than an affront.

The first time I imposed ashes on the forehead of one of my children I paused.  Looking them in the face, confronting their mortality, SHOOK me.  In that moment I was thinking only of the “here and now,” which, as a parent was completely natural.  I quickly had to remind myself of what I believe and rest in that.  It’s easier said than done, especially when thinking of our children.  I can’t imagine what it is like to lose a child.  I pray I never know.  I have, however, tasted just a morsel of that pain, when we suspected my middle child might have a degenerative disease that would cut her life very short (thankfully it was ruled out, but the wait for diagnosis was torture).

I can’t say I never doubt.  That would be dishonest.  But I DO have faith.  I have faith that the same cross that was traced on our forehead at baptism, the same cross that is traced on our forehead in ash, is the cross that was there for us 2,000 years ago, the cross of death that leads to life.  I have faith that death does NOT have the last word for those who cling to that cross.

The pain of death is real.  Even those who have faith grieve, and grieve profoundly.  But with our grief we dare to have hope that there is more.  And when hope is fleeting, having a community of faith surrounding us, reminding us of the promises and love of God, can carry us through another day.

So I love the photo.  I love that it jolts me out of my comfort zone.  Out of the comfort zone that tells me I’m the master of my destiny.  Out of the comfort zone that tries to have me deny the reality of my mortality.  I’m thankful to be jolted out, because out of that comfort zone I find the love of God I don’t deserve, the love of God that holds my children and all those I love more than I EVER could, the love that holds every one of us as we travel through the trials of this life, and into the eternal joy of the life to come.

“Remember that you are dust, and to dust you shall return” (Genesis 3:19).

Nobody warned me about the fear

There is NO time in parenthood when you can relax.  I’ve been at this for over 15 years now and every new experience just reinforces that sad truth.

My teenager had a horrible middle school experience.  I won’t go into great detail out of respect for her privacy, but it was utterly frightening to watch.  Everytime she left the house, or even when she closed herself in her room we were afraid.  More than once my husband and I almost pulled her out of the school, in fact asked her if we could PLEASE pull her out and either homeschool or get a tutor for her, but she refused.  She was miserable, despondent, hopeless, dark (and yes, she was receiving professional help).

fear photo

She graduated from 8th grade in June, and in September started at our regional high school.  Five towns combine into one high school, which means a whole new mix of kids, and a bigger student population.  Many people told us that she would find her groove at the high school and we prayed and prayed and prayed that would be true.

In the past few months we have had a new person living in our home.  She is HAPPY.  She has made many new friends.  She is confident.  She cares about her classes.  She cares about how she looks (and by this I mean she cares if she’s showered and brushed her hair, not what designer label she’s wearing).  She has a new boyfriend who seems really nice.  I’m thrilled for her.

fear imageBut I’m still afraid.  Before, I was seriously afraid about the possibility of suicide and self- destructive behavior.  I was afraid because she disliked herself, had few friends and no social life.  I’m SO SO SO thankful those fears are gone – but they have been traded for new ones.  Now that she has friends and “hangs out,” I fear adolescent group mentality and the propensity to make poor choices.  Fears of sex (not just of her having it, but of STD’s and pregnancy!), drugs, fears of her expanding freedom and that with her new social life she may find herself in a precarious situation and not realize it or know how to get out of it.  We’ve talked about all these things with her, and once or twice she has called me to pick her up from a situation in which she felt uncomfortable, but still, the social pressures for teenagers are enormous, and sometimes those pressures can override their instincts and common sense.

I naively thought that once my daughter was in a better place I would be able to relax.  Nobody warned me that fear would be a constant companion in my parenting journey.  Sometimes it feels paralyzing, overwhelming.  For the most part I’m able to manage the fear beast though.  I can’t let fear rule my parenting – what an awful experience that would be for both her and me!  I can’t seal her in bubble wrap.  It’s part of the cost of loving – this intense desire for the well-being of the one you love, the fierce protectiveness against all things that might cause your child harm physically, emotionally or spiritually.  It goes against every instinct to let go, yet it’s the one thing we must do.  She has to learn to live her life, and the only way she can do that is if my husband and I allow her increasing freedom.  That means letting her go, little by little.

These new set of fears seem more natural to me than the ones I had when she was in the depth of her depression and self-loathing.  They’re fears that go along with the normal course of a teenager starting to break free, taking those baby steps towards adulthood.  They’re fears that are associated with living a life and not with being held back from life. The trick is knowing when to tell the fear to get out of the way, and when to listen to it – because there ARE times when you have to say to your kids, “Nope, not this time.”

 

What I never could have done

I grew up afraid.  Having an alcoholic father taught me that.  We were never allowed to disagree openly with him, and his anger could be fierce.  I learned to bury, and even lie to myself about my emotions in order to survive.  I learned to lock myself in my room as much as possible, where I could feel some semblance of safety.

When I had children I vowed that while they would have a healthy respect for my husband and me, they would not feel the fear I felt.  I wanted them to be able to express their anger, even at me.  I wanted them to be able to stand up for themselves.  And they do, within certain limits.  In our house anger is okay, but we’re not allowed to belittle another person, or use words like “stupid,” “idiot” or “shut up.”  We can say “I’m angry with you,” but not “I hate you” (although that does come out once in a while).  I am far from being the world’s perfect mother or wife, and I’m sure my oldest has spent a good amount of time complaining about me to her therapist – but I try, and I feel like I have a good relationship with all three of my children.

So…

Something happened recently.

My oldest, who’s 15, has been participating in the school marching band’s color guard (you know, the kids who run around the field or march with flags).  She loved it at first, but has been on a steady path of disillusionment for months because the director has, in her opinion, been singling her out.  She has been in tears many times lately, only bolstered up by her fellow students telling her it’ll be okay.  Now, although I love my daughter, I know she’s not perfect, and usually I’m pretty good at seeing the teacher’s side of things.  But this director has a reputation for being downright mean, which I’ve heard from other sources besides my daughter.

A few weeks ago the director publicly benched my daughter because it was cold, her fingers were numb, and she dropped her flag – during practice.  She felt humiliated and seethed with anger and hurt for the rest of practice as she watched, then during the game in which she was allowed to perform.  She cried with her friends on the squad, and when I picked her up after the game was over she cried with me.  My daughter had enough.  She wanted to quit.  I encouraged her to stick it out.  It was then the playoffs – I reminded her that she made a commitment to this, and that it was important to follow through, and not to let her squad down.  I told her I’d be disappointed in her for letting down the squad, but that she had to make her own decision.

After this incident, and all tears, she went to talk with the director of the music program (who’s “above” the color guard director) and told her that she wanted to quit.  I wasn’t there for the conversation, I know only what my daughter told me afterwards – but if even half of it is true I really wonder how these people end up leading our youth.  I’m chalking the whole thing up to the color guard director just being mean, and the music director (who is new) being inexperienced.  The music director basically told my daughter that she couldn’t quit and that she was being melodramatic and self-centered.

SHE’S FIFTEEN – OF COURSE SHE’S BEING MELODRAMATIC!!!!!  Duh.  Fifteen year old’s are incredibly melodramatic and self-centered – it’s called adolescence.  What planet is this woman from???

I’ve never coached a team.  But I have been “in charge” of people.  And here’s what I’ve learned.  To be an effective leader and get the most out of those you lead you have to know your people.  Some respond well to the angry coach – “shape up!” “don’t be lazy!” – and some respond to the cheerleader type – “I know it’s hard, but you can do it!”  Some folks, and I can imagine a lot of teenagers, respond well to a comforter, “I know you’re having a difficult time, I understand, hang in there.”  My daughter definitely responds best to the comforter – and neither the color guard or music director knew this – and they’ve known her for two years.

The day after this “talk” with the music director, getting up for school on game day, she cried.  Again.  Cried that she couldn’t face another Friday night game.  She didn’t have it in her.  Again, I told her that I would be disappointed if she dropped out because she had made a commitment to her squad.  I told her to try to see it through.

Shortly after her school day was over she texted me to pick her up.  I asked her about color guard practice and she said she just couldn’t.  She couldn’t face it.  She emailed the music director and that was it.  She got in the car looking lighter than she had in weeks.

My daughter has done something I could never have done at her age.  The more I thought about it, the more I saw MY behavior and attitude as playing my “old tapes” – take the abuse because you can’t fight back.  And the more I thought about it, the more I moved from being disappointed in her to being downright PROUD.  She saw herself being mistreated and wasn’t going to be passive about it.  She was sad for her squad, but wasn’t willing to subject herself to poor treatment as the price for staying.  She did exactly what I’ve been raising my children to do – she stood up for herself.

Quitting isn’t always the best way to deal with a problem.  Sometimes quitting is taking the coward’s way out.  But sometimes quitting is a sign of health, strength, and can be downright BRAVE.  I love this girl!

***p.s. – The game she dropped out of ended up being the last game for her team.  Most of her squad members, even if they didn’t agree with her decision, respected it.  She has not heard from the color guard director or the music director since.  Also, out of respect for my daughter’s privacy, she read this first and gave me her permission to post…

EEG

I suppose you could call this post the third chapter of my daughter’s journey to her autism diagnosis.  In the first post “sometimes there is NO regression” I wrote about being forced to realize there was something wrong with my daughter.  In the second, “The Biopsy” I shared how we were told she might have a potentially life-threatening condition (the biopsy result was negative).

But after her biopsy (shortly before her second birthday) our daughter started exhibiting strange new behaviors – she would close her eyes for prolonged periods, shake her head rapidly, stare and “zone out” so that we would have to call her name repeatedly to get her attention, and most disturbingly roll her eyes back so that all we could see were the “whites of her eyes.”  Surprisingly (since our kids almost never do what we want them to for their doctors!) she had an eye-rolling episode during an appointment with our pediatric neurologist, whose immediate response was, “This is NOT normal.”  The neurologist strongly suspected our daughter was having seizures.  We had just breathed a sigh of relief that her biopsy was negative, now we would have to hold our breath again to see if her brain was short-circuiting, and if so, how serious the activity was.

We left that doctor’s visit with a referral for a 48 hour seizure study.  The timing of it was awful, but when you’re connected to an internationally known hospital you can’t pick and choose your dates.  Our stay in the hospital would happen during Holy Week, the busiest week of the whole year for clergy (both my husband and I are pastors, although at this point I was home full-time).  It would mean that other than making the drive in to the city for admission and picking us up at the end, my husband wouldn’t be able to be with us at all.  He HATED that, and I did too, but we didn’t have a choice.  His parents came to stay over at our house to take care of our older daughter, and off we went.

eeg, March 2005

EEG, March 2005

Admission included having electrodes glued to our daughter’s head then having it wrapped up so she couldn’t pull the electrodes off.  Once that was all done and we were settled in the room my husband kissed us both goodbye and headed home.  In my diary entry the first night in the hospital I wrote to my daughter:

“It took the technician over an hour to do the head measurements and put the electrodes on and wrap your head.  You were beside yourself.  You screamed and used all your muscle to try to get away so Daddy and I had to hold you down.  It was torture for you, plain and simple.  The worst part was as you were screaming you were looking at me and saying with your eyes, ‘Why are you letting this happen to me – please save me – why are you letting this person hurt me?’  I cried and cried.”

Nowadays you can go home with these EEG’s – but nine years ago we not only had to stay in the hospital, but my daughter was literally on a leash – the electrodes that were attached to her head were attached to a cord that was attached to the wall, so we were also pretty much trapped in her room.  We had a roommate – a teenage girl who was definitely having seizures – and she had the window bed, so we couldn’t even look outside.  I slept on a couch in the room.  It was our world for 48 hours.

I can’t imagine how confusing it was for my little girl – to have her parents hold her down while she screamed to be free, to have people “mess” with her head (when she was VERY sensitive with anything having to do with her head), to be in this strange place, to not see her daddy or sister, to be “chained” to the wall and not even able to walk in the hallway.  There were a few smiles though.

EEG, March 2005

EEG, March 2005

One late afternoon we got to meet MINNIE MOUSE.  Yep, Minnie visited each room in the unit and posed for pictures with each of the kids that wanted one.  That really meant a lot, not just to my daughter, but to all the children – and their parents.  Thank you Disney for making my little girl smile.

My daughter was cooperative and exhibited all the suspicious behaviors while she was admitted.  The neurologist called us the following week to confirm that her EEG at all points was normal.  The incidents we were witnessing were behavioral in nature – very unusual, but not impossible.  Now we can look back and understand it as sensory related – the head shaking and eye rolling probably as a seeking behavior, while the zoning and “eye-closing” might have been a response to sensory overload.  This is all conjecture though, because she certainly wasn’t telling us, and by her third birthday most of these behaviors disappeared just as mysteriously as they came (except for the head shaking).

So we found out what WASN’T wrong – no mitochondrial disorder, no seizures.  But we still didn’t know what WAS wrong.  Why was she so delayed?  At this point her only diagnoses were her symptoms – hypotonia (low muscle tone), developmental delay (physical), developmental delay (cognitive), developmental delay (speech). By the time she was 2 1/2 years old, however, we were starting to wonder, “Could it be autism?”

The Biopsy

In my last post about autism I shared how my daughter never experienced any regression, that she was delayed almost from birth.  By the time she was one year old she was already receiving physical and occupational therapy.  But that wasn’t the end of her story, or the end of our fears.  A lot also happened between her twelfth month and when she turned three, when she went off to a full-day, five-day-a-week special needs preschool.  This covers the time between her 18th month and just past her second birthday.

At our daughter’s 18 month check-up her pediatrician suggested that in addition to the physical and occupational therapy she was receiving through our state’s Early Intervention program, we should consult a pediatric neurologist to make sure there wasn’t some underlying serious problem that was causing the delays.  So we got a referral and took her to see a neurologist.  In his examination he confirmed the significant delays and sent us off for a blood test.  The blood test was a nightmare.  It took two of us to hold her down while she screamed and kicked and tried to flail her arms.

When he called us back to review the results he was disturbed.  There was a significant abnormality in her lactate level.  Her hypotonia (low muscle tone) AND the abnormal lactate level indicated that she might have a mitochondrial disorder.  Basically what it boiled down to was the possibility of her having some kind of muscular dystrophy, something that could be permanently disabling or even degenerative, leading to a shortened lifespan.  Muscular dystrophy?  Was the doctor saying there was a real possibility my daughter might end up in a wheelchair, or on a respirator and dying an early death?  Oh God.  Thankfully we lived close to a hospital that was world renowned in the study of mitochondrial disorders.  So our neurologist gave us a referral to that hospital, and off we went to consult with a new neurologist who would be able to treat us there.

There was only ONE way to conclusively rule out a mitochondrial disorder, and that was to test some of her muscle – a muscle biopsy.  So in order for us to rule out this terrible thing we had to subject her to surgery.  And while they had her asleep they would also do an arterial blood draw, which would give them another, even better read of her lactate levels.  As our new neurologist explained it, the surgery wasn’t that complicated.  They would put her “under,” make about a one inch incision and take a small amount of muscle out of her upper thigh.  It would leave a scar, but a small one.

NOT THAT COMPLICATED.  I understood it wasn’t heart or brain surgery, but there was nothing “not that complicated” about me having to hand over my baby to people who would put her to sleep and cut her open.  It was one of the hardest things I’ve ever done.  They gave her a little something to make her groggy, then I carried her down to the operating room.  I placed her on the stretcher, kissed her goodbye, and somehow made my feet move to leave her behind.  I cried all the way back to the waiting room.  The time spent in that waiting room was one of the hardest “waits” I’ve ever known – except for the four weeks we’d have to wait to get the results of the biopsy.  That’s right, FOUR WEEKS to find out if our daughter was healthy with some problems, or sick and possibly going to live a short and difficult life.

The only way we survived those awful weeks of waiting for the results was through the support of our family and church.  The Christmas holiday was also in the middle of this waiting, so my husband had plenty to do with his church work, and I (not working outside the home at this point) had plenty to do to get ready to celebrate and get presents for my girls (remember I also had a four year old daughter).  The busy-ness kept us distracted, but it was still nearly unbearable.

When the test results came back the neurologist was relieved to tell us that the biopsy RULED OUT a mitochondrial disorder, and the lactate level they got from the arterial blood draw was NORMAL.  She explained the high level from the other blood test could have been a result of her being highly agitated, or from the lab not handling the sample properly.  We all breathed tremendous sigh of relief.

But this was not the end of our fears, because between the time of her biopsy and us getting the results our daughter had started exhibiting a new confusing behavior.  We explained to the doctor that she had begun closing her eyes for extended periods of time when we knew she was awake, would sometimes shake her head rapidly, sometimes roll her eyes so that all we could see were the “whites” and sometimes zone out and stare into space.  In the middle of the doctor telling us to “just keep our attention on it” she did the eye-roll thing right in front of all of us, and the neurologist’s immediate response was, “That is NOT normal.”

Our next test?  A 48 hour EEG to rule out seizures.  And we were off on our next episode of fear…