Gotta Start Somewhere

2018.  I honestly have no idea how on earth it can be 2018 but it’s an accepted fact around these parts that I am Very Old and on the rare occasion when I write a paper check I still have to consciously tell myself to start the date with a 20 instead of a 19 so obviously the fact that we are almost two full decades into this new century is beyond my ability to comprehend.  Nevertheless, I welcome this New Year with open arms, hopeful anticipation, and maybe a smidge of mid-life angst.

It turns out the truth under the pile of diagnoses and drama was Autism – or Aspergers if that makes it easier to picture – and it also turns out that while the word is somewhat scary at first, it’s a lot less scary than the unknown.  It’s also a lot less scary when you’ve got the right supports in place, which I think maybe we finally do.  Leah is going to a school where she fits and the teachers know her and accept her and even understand (!!!) her which translates to her not hating school for the first time in like ten years and being willing to actually go for the first time in at least four years.  It’s a HUGE weight off my shoulders.  Writing the word huge in all caps doesn’t even do it justice, but take my word for it, it’s literally life-changing, for both of us.

As a result of this massive answer to prayer, I find myself in a place I’d almost given up finding again.  For a few hours each day, I am alone in a quiet house.  It is bliss.  And it is daunting.  Do I fill the day with chores and errands?  Spend it chatting on the phone, flipping through FB and exercising?  (Answer to both: yes.)  Or… do I return, once again, to that void that follows me everywhere, that gaping question that hounds me, taunts me, terrifies me: Am I ever going to be a writer, For Real?

I’m reading this book, Whisper: How to Hear the Voice of God by Mark Batterson and he talks about how to know if our desires are God-directed desires.  He says we need to lay our desires down because sometimes they become idols and we need to know God is directing us and we’re not just going off on our own.  And then he says that often what happens is that God will give them back to us – and it is when a desire does not go away no matter how much we set it down, that we see God working in it.  (This is obviously an imperfect science and we’re not talking about unhealthy addictions here.)  Given that criteria, I’m realizing that it may actually be disobedience for me not to write.  Or at least try to write.  So here I am, again.  New Year, old resolution.  And in case you’d hadn’t guessed by the appearance of this blog post after months of internet silence, this is me taking a tiny baby step.

I want to do this.  And I’m afraid.

Biblical Tangent:  I’m reading the Bible in a year (she says on the 2nd day of the year) and I was in Genesis chapter 3 today.  Check this out, this is right after Eve and Adam ate the forbidden fruit:

And they heard the sound of the Lord God walking in the garden in the cool of the day, and the man and his wife hid themselves from the presence of the Lord God among the trees of the garden. But the Lord God called to the man and said to him, “Where are you?” And he said, “I heard the sound of you in the garden, and I was afraid, because I was naked, and I hid myself.”

… And the Lord God made for Adam and for his wife garments of skins and clothed them.

Genesis 3: 8-9, 21

Key points salient to the topic at hand…  Adam and Eve were always naked.  Like since ever.  It was only after they ate the fruit and put themselves in the place of God that they felt shame and fear.  And they hid.  And it’s God who calls to them, goes and brings them out of hiding and makes clothes for them to cover their shame.  He does that.  Time and time again.

I am afraid.  I feel worthless, useless and unimportant, apart from what I can contribute in the role of Mom.  Without that title, I feel naked.  Can I trust Him enough to step out from behind that moniker?  Maybe it’s time I find out.

 

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From the Corner of a Bookstore Cafe

I sit at a table that’s too tall for me to relax and gives me a vantage of the room, my back to two walls.  A defensible spot.  Nearby eight woman my age and older are gathered, chatting as friends do, and I envy them.  Its ridiculous, this envy.  I know nothing of any of them.  I know nothing of their lives or their problems.  It’s the rare woman who has reached middle age without accruing some worries and pain.  But they laugh, and I wish I knew them well enough to join in.

I miss laughing.  It’s not that I never laugh.  It’s just that the laughter is often forced, or forgotten so quickly because I’m living life on this high chair in the corner, my back to two walls, defensive.

I am working on this.  On myself, because it’s finally dawning on me that I can’t really work on anyone else.  No matter how much I want to.  So now I’m learning mindfulness.  I’m training my brain to Be Still.  God has directed me to find stillness for over thirty years, I suppose its time I look at a freaking map.  Yesterday during my ten minute mindfulness exercise the nice man with the British accent told me to think about my motivation for wanting to be mindful.  Anxiety I thought.  Or more accurately, to stop feeling anxious all the time.  Nice British Voice told me to think of my loved ones and how my ten minutes of mindfulness would benefit them.  So I won’t make them anxious I answered in my mind.  It felt like grasping.  It felt like reacting, the way I always do.  The way I walk into a room and L’s voice is raised and Husband’s voice is taking the “talking to a crazy person” tone and my heart starts racing and I know that walking into the room will not make things better and will likely make things worse because now my own anxiety will be added to the mix.  But I’m even more afraid of not walking in, because when things escalate things can get scary, fast.  And I’m the mom.  It’s my job to walk in even when I don’t want to.  But this morning I was reading yet another book on how to discipline your child from a place of love and trust and the authors said that if your child does not see you as safe, they will not learn what you are trying to teach through discipline.  In fact, you will make things worse.  So as we were driving into town this morning I revised my motivation statement for the Nice British Voice.  I want to be her safe place.  That sounds so nice, doesn’t it?  To be my child’s safe place?  To be the harbor in her storms of life?  Except, I can’t be that for her.  Not now, at fifteen, and not even when she was three and it seemed like I could be that.  Because I’m a person with flaws and limits and her whole job is to separate from me and become her own person.  Only God can be that her.  But she refuses to see that right now.  That’s between the two of them, I cannot force it.  So I can’t be Her safe place.  But, I can be A safe place.  Which is to say I cannot be a refuge in any kind of “the answer to all your problems” kind of way, but I could be a person who exudes a calm presence, a sense of peace and faith regardless of what storms are blowing.

Now, if you know me in real life, you may be laughing at the very idea, because words like “calm” are never used to describe me.  Passionate, Vivacious, Fiery…  those are the nice ways to describe me.  Sometimes those traits are good, but these days, they’re not working for me.  So I need to expand the definition of me.  I will try.  And I will ask God to do a work in me.  And maybe the day will come where I don’t seek out the high chair in the corner that backs to two walls.  Maybe I will even laugh, and really mean it.

Unfiltered

Younger Son has a doctor’s appointment tomorrow.  A check-up and physical.  No big deal, except that as luck would have it, he’s seeing the doctor whom Leah saw in sixth grade.  The one that started her on Concerta for her ADHD.  We haven’t seen him in at least a year, because I started requesting female doctors for Leah as she got further into her teen years.  Part of me is wondering if he will recognize the last name and ask about Leah.  And because my mind never stops, I’m playing out how that conversation would go, if I didn’t worry about manners or propriety (in other words, if I weren’t such a compulsive people-pleaser).  Here’s how it goes, in my head:

************

Doctor Niceguy:  “Hi Luke Lastname…  and Mrs. Lastname.  Oh you’re Leah’s mom… how is she?”

Me:  “Uh, she’s actually at a therapeutic boarding school.”

Dr. Niceguy:  “Oh?” (looks uncomfortable, but appropriately concerned)

Me: “Yes, for extreme anxiety and depression.  Turns out, she doesn’t have ADHD.  It was all anxiety.”

Dr. Niceguy: “That so?”  (looking more uncomfortable, clearly wanting the topic dropped.)

Me:  “Yes.  That is what they concluded after she spent a month in a research hospital being tested and assessed for a whole host of possible psychological issues.

“Did you know that giving a Stimulant – as you did – to a person with anxiety will only serve to make that person MORE anxious?  That even though you explained to me and my daughter that Concerta would simply cause the “little executive” in her brain to take charge and help her focus, what it actually does it STIMULATE whatever is going on in her brain – intensifying whatever thoughts and feelings she is having?  Did you know that?  Because I did not know that, but I relied on YOU, as her PRIMARY CAREGIVER to give us a good accurate picture of what Concerta would do to my child.  In fact, I remember telling you that I was extremely nervous about putting her on medication, that I worried about her not eating (which, in fact, happened) and becoming “like a zombie”, losing the joyful bubbly part of herself (which also, in fact, happened).  But you assured me that we could mitigate the eating concerns by giving her lots of fattening shakes (and thereby putting me in charge of my adolescent’s eating habits at a time when she needed to be taking ownership of them) and that the zombie concern was overblown.”

Dr. Niceguy: “Yes… well… uh…” (eyes dart around the room, fixes on Luke and makes it clear he wants to move on to the patient in front of him.)

Me.  “I wonder, Dr. Niceguy, What would you call it when a child gets out of bed at 2am and writes an expletive-laden letter for her parents before walking out the door and wandering TWO MILES into the forest, without a flashlight in the dark of night, in search of, and I quote, her ‘coyote family’?  Would that qualify, do you think, as zombie-like behavior?”

Dr. Niceguy: “That’s extreme behavior, certainly.  But perhaps there were other mental or emotional issues…?”

Me:  “Yes!  Certainly!  The sorts of issues one ought not to stimulate, wouldn’t you agree?”

Dr. Niceguy: “There are always risks with any medicine…”

Me: “True.  It would have been good if you had mentioned those risks.  Though frankly I doubt you were aware of them.  I wonder, are you also unaware of the fact that people who have or are at risk for Bipolar Disorder should not take stimulants?  That a stimulant, such as Concerta, could trigger a manic episode, or even psychotic behavior?  A number of psychiatrists have told us that it is possible that is what happened to our child.”

Dr. Niceguy: (Becoming defensive while still clearly trying to placate the crazy woman) “She did not have any of the symptoms for bipolar.  It does not typically onset until much older.”

Me: “Actually, Pediatric Bipolar Disorder is often misdiagnosed as ADHD.  Did you know that?  There’s a whole host of emotional and mental disorders that share symptoms with ADHD.  And since it’s the Favorite Diagnosis of Schools and Pediatricians everywhere (to say nothing of the Drug Companies making insane amounts of money off of ADHD meds), it’s likely that a number of your patients whom you have diagnosed as ADHD do not in fact have ADHD.  Did you know that?  No?  Because it’s easier just to look at the symptoms and jump to the most popular and easiest to medicate disorder, isn’t it. After months of testing, we still don’t know if Leah has a mood disorder – but the risk is clearly there.  And given that you spent all of ten minutes asking me about her adhd and the panic attack that brought us to your office, it’s obvious you never even thought about such a possibility.  Doesn’t that seem a little irresponsible to you?”

***************

…  Only one problem with this scenario:  Younger Son needs a physical.  Also see above re: terrible people-pleasing tendencies.  However, I must say, I feel a little better just typing it out.  And maybe, just maybe, someone in the big wide internet, will gain some knowledge that will prevent another kid from being mislabeled and mis-medicated.  A girl can dream, anyway.

 

Pin the Tail on the Diagnosis

Adhd

Depression

Bipolar

Unspecified Psychotic Disorder

Unspecified Mood Disorder

Disruptive Mood Disregulation Disorder

Schizophrenia

Generalized Anxiety Disorder

Autism Spectrum Disorder

In the last six months, my daughter has received every one of these diagnoses.  Nearly every one of them has symptoms and behaviors that overlaps with nearly every other one on the list.  The “unspecifieds” made it so that no therapist in our entire area would see our child – too challenging.  (Let that sink in a minute – a person who has gotten a degree specifically to help people with mental problems says that the possibility that my child has a mental problem means that she is beyond their abilities to help.  And not just one person, but every person – including those with PhD’s – refused to help a 14 year old child because it was POSSIBLE that she had psychosis.  The depths of my frustration, anger and overall disappointment with our local therapeutic resources can not even be expressed.)

It was when her psychiatrist – who had the annoying habit of spending most of the hour talking to us instead of to our daughter, and when she did speak to our daughter did so in a condescending way that showed she hadn’t the first clue how to connect with her – declared that our daughter “most certainly” would end up back in our Children’s hospital psych ward and the “best case” scenario was Bipolar, “more likely” was Schizophrenia, that I teetered on the edge of despair.  When the only school in our area that we thought could help our child made a point of saying that they were not “therapeutic” and could not prevent her from harming herself, I felt the panic creeping in.  When the psychiatrist said the best plan was to accept that we were helpless and immediately enroll our daughter in the public high school – that’s what we pay taxes for isn’t it? – smack in the middle of testing season, with no preparation and no educational protections in place – I knew there had to be a better way.  Thank God, I was right.*

~ * ~

Now a certain man was ill, Lazarus of Bethany, the village of Mary and her sister Martha. It was Mary who anointed the Lord with ointment and wiped his feet with her hair, whose brother Lazarus was ill. So the sisters sent to him, saying, “Lord, he whom you love is ill.”

Now Jesus loved Martha and her sister and Lazarus. So, when he heard that Lazarus[a] was ill, he stayed two days longer in the place where he was.

John 11: 1-3, 5-6

These women, who knew Jesus in a way I can not know him until eternity, sent word to Jesus that their beloved brother was very ill.  It was like a simple prayer, sent in absolute faith.  “Dear Lord, our brother, whom we know you love, is ill.”

I prayed prayers like that.  At first.  In the beginning it was “God, something is wrong with my little girl.  Please help her.”  Then, over time, I used more words and started adding in instructions, in case I wasn’t being clear enough about what was needed.

“Now Jesus loved Martha and her sister and Lazarus.  So, when he heard that Lazarus was ill, he stayed two days longer in the place where he was.”

Uhhh, wut?  If someone you love calls to you for help, do you reply, “I love you, so I will not come for two more days”?  Not me.  I’m coming on the run, heart pumping, ready to swoop in and fix it.  Because that is what I do.  I swoop and I fix.  And every day since before my daughter was even in my arms, it is what I have been doing, swooping and fixing.

For my thoughts are not your thoughts,
    neither are your ways my ways, declares the Lord.
For as the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.  (Isaiah 55:8-9)

Jesus didn’t run as fast as he could to Lazarus, swoop in and fix (heal) him.

He let him die.

This is the brother of Mary and Martha.  Mary, who poured perfume on Jesus’ feet and wiped it with her hair.  This woman loved Jesus and trusted Him, wholeheartedly.  Can you imagine how she felt when He didn’t come and her brother died?

Now when Mary came to where Jesus was and saw him, she fell at his feet, saying to him, “Lord, if you had been here, my brother would not have died.”  When Jesus saw her weeping, and the Jews who had come with her also weeping, he was deeply moved in his spirit and greatly troubled.

No need to imagine, we can read it for ourselves.  She collapsed at His feet and sobbed.  She was so despondent that Jesus was “greatly troubled.”

I have never lost a close loved one to death.  But over the last several months, I watched my child slip away.  I know grief.  I know despair.  I know what it is to fall at Jesus feet and say “If you had answered my prayers, my child would be well right now.”

Why didn’t Jesus just heal Lazarus?

He planned to do more than they could think  or imagine.  He was not content to leave Mary and Martha with what they knew of Him so far.  He was not interested in meeting their expectations, because He planned to exceed them.

– Jennifer Kennedy Dean, Praying the Promises of God

How did He exceed those expectations?  He brought Lazarus back from the dead.  Literally.

 The man who had died came out, his hands and feet bound with linen strips, and his face wrapped with a cloth. Jesus said to them, “Unbind him, and let him go.”

(You probably all have heard the story, but if you haven’t, check it out, it’s in the book of John, chapter 11.)

We are no where near the end of our story.  But today, when I read this devotion, I thought, this is what God is doing in our family.  He could have just healed our daughter.  Just taken away the behaviors or the disorder or the anxiety – at this point He’s still the only one who truly knows what precisely is wrong.  But I believe He wants to do more.  More than a simple healing, I believe He wants to bring my daughter back to life.  And maybe not just her, but our whole family.

I don’t understand it all right now.  I believe, but I still cry, often.  I admit, it’s a shaky faith, at times.  But just at the moment when my hope was fading, He opened a door and made a way.*  And so I continue to trust.

 

*Consider this another chapter in the telling.  There is far too much to put in one or two blog posts.

Protected

I tend to blog as though I’m writing in a journal.  I am open and vulnerable.  These things are fine, for me.  But since I am also talking about my children, there’s a line that I need to be aware of, and I think I overstep it from time to time.  All names are changed, and I try not to write anything too identifying about any of my kids or where we live.  But often when I come back after a few months (as I have this week) I look back and think, “that might be too much” and I put a password on those posts.  Above all, I want to do right by my children.  I want to protect them more than I want to share my thoughts or inform the public.  That said, if you are walking through hard times with your own child(ren) and you think reading what we have been through might help you, ask me for the password.