The Words I Didn't Think I'd Ever Say

Today is another giant anniversary in our lives.  Today is the nine year anniversary of Elise's cancer diagnosis.  As I've shared before HERE and HERE, we did know it was coming.  And in knowing it, we literally were able to save her sight and very possibly her life.  A lot of miracles were "activated" to get us to the point of diagnosis.

Cancer steals time and peace.  Cancer and the medicine used to kill it causes brain damage and mental retardation, despite the lives it can save.  We will never know who Elise would have been without it's impact, I am reasonably sure that I am glad I don't know, or I may have become bitter...despite all she may have lost, she is a sharp girl.

With Cancer comes a very real look at the loss it can cause.  And while we were blessed, the possibility loomed very large.  I have hesitated ever sharing these thoughts, as I didn't feel "qualified" because Elise was not taken from us...but I felt compelled to share them this last week privately.  And I am feeling the pressure of needing to put them out there for others to read.

I have stared down the very real possibility of losing one of my children. And I would like to share with you 3 things I recommend from my own experience:

Despite feeling the need to hold life together on your own, do not fold to that temptation. Ask for help from willing friends and lay secure in the knowledge that God will fill in the holes of your failures with your other kids...just as he will when you are there 100% of the time.

Say your greatest fears aloud with your spouse. Your fears will poison your relationship if that is allowed to grow and separate you...The planning for the worst and the holding hands through the darkest hours is what ends up being the most comforting. Sadly, what damages marriages with children with special needs and children who escape to be with Jesus early is the cracking and emotional separation.  Ironically, deciding with my husband where we would bury our daughter if she didn't make it through her battle with cancer, gave me a significant amount of hope and bound me to him, in a deeper way that pleading for hope and platitudes would never have.

And the last piece of advice? Meditate over and over the times and moments when God moved in your life before. Count all his previous blessings to you...to know that the dark of now, is not his lack of a plan for you or a lack of movement now. Scream and rail against Him, ask him why. He is more than strong enough to take it. David did both, constantly in Psalms... And he was still a Man After God's Own Heart. And God always answers, in one way or another, I have seen it to be so, over and over.

PSALM 77

¹ I cry out to God; yes, I shout.
Oh, that God would listen to me!
² When I was in deep trouble,
I searched for the Lord.
All night long I prayed, with hands lifted toward heaven,
but my soul was not comforted.
³ I think of God, and I moan,
overwhelmed with longing for his help. Interlude

⁴ You don’t let me sleep.
I am too distressed even to pray!
⁵ I think of the good old days,
long since ended,
⁶ when my nights were filled with joyful songs.
I search my soul and ponder the difference now.
⁷ Has the Lord rejected me forever?
Will he never again be kind to me?
⁸ Is his unfailing love gone forever?
Have his promises permanently failed?
⁹ Has God forgotten to be gracious?
Has he slammed the door on his compassion? Interlude

¹⁰ And I said, “This is my fate;
the Most High has turned his hand against me.”
¹¹ But then I recall all you have done, O Lord;
I remember your wonderful deeds of long ago.
¹² They are constantly in my thoughts.
I cannot stop thinking about your mighty works.

¹³ O God, your ways are holy.
Is there any god as mighty as you?
¹⁴ You are the God of great wonders!
You demonstrate your awesome power among the nations.
¹⁵ By your strong arm, you redeemed your people,
the descendants of Jacob and Joseph. Interlude

¹⁶ When the Red Sea^[a] saw you, O God,
its waters looked and trembled!
The sea quaked to its very depths.
¹⁷ The clouds poured down rain;
the thunder rumbled in the sky.
Your arrows of lightning flashed.
¹⁸ Your thunder roared from the whirlwind;
the lightning lit up the world!
The earth trembled and shook.
¹⁹ Your road led through the sea,
your pathway through the mighty waters—
a pathway no one knew was there!
²⁰ You led your people along that road like a flock of sheep,
with Moses and Aaron as their shepherds.

I have also decided that I would share with you the verses that I claimed for Elise when she went into cardiac failure...and at every surgery since.  I feel like I am sitting on a pirate cave of treasure, and I certainly have enough wealth to share...  You may need to claim them, too...I literally prayed each of these, for every one of her surgeries, with open hands knowing that her body would be healed in one manner or another, and that Jesus loved her more and better than we did. For one surgery I admit I literally wrote one on her in sharpie...

Matthew 8:13
"Then Jesus said to the centurion, "Go! It will be done just as you believed it would." And his servant was healed at that very hour."

Matthew 18:19, 20
“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20For where two or three come together in my name, there am I with them.”

Psalm 42:8
"But each day the LORD pours his unfailing love upon me, and through each night I sing his songs, praying to God who gives me life."

Mark 5:19
But Jesus said, "No, go home to your family, and tell them everything the Lord has done for you and how merciful he has been."

Mark 9:24
With tears flowing, the child's father at once cried out, "I do believe! Help my unbelief!"

Mark 10:16
Then after he had hugged the children, he tenderly blessed them as he laid his hands on them.

Mark 10:27
Jesus looked at them intently and said, "For humans it is impossible, but not for God. All things are possible for God."

Luke 5:26
Everyone was amazed and gave praise to God. They were filled with awe and said, "We have seen remarkable things today."

Luke 8:39
"Return to your house and describe what great things God has done for you." So he went away, proclaiming throughout the whole city what great things Jesus had done for him.

Luke 8:50
But Jesus hearing it, answered him, "Fear not: only believe, and she shall be made whole."

Psalm 34:4
"I sought the LORD, and he answered me; he delivered me from all my fears."

Psalm121
^"1 I look up to the mountains—
does my help come from there?
² My help comes from the Lord,
who made heaven and earth!

³ He will not let you stumble;
the one who watches over you will not slumber.
⁴ Indeed, he who watches over Israel
never slumbers or sleeps.

⁵ The Lord himself watches over you!
The Lord stands beside you as your protective shade.
⁶ The sun will not harm you by day,
nor the moon at night.

⁷ The Lord keeps you from all harm
and watches over your life.
⁸ The Lord keeps watch over you as you come and go,
both now and forever."

 

I realize that this isn't a particularly celebratory post.  But you have to understand, that this isn't a date that I actually celebrate, usually.  No matter if you know a health problem is coming or not, the words that it is here, will always take you to another dimension.  "Your child has cancer" will hit you like a sledge hammer.  You will feel like you blacked out.  Because your brain simply cannot take anymore than that.  Because I knew it was coming, I was able to move confidently forward toward treatment, but it was not easy.  And Elise was the 9th or 11th patient on the protocol we chose to follow.  Granted they had had success, but that's not a lot of track record.  90% success of 10 kids, still means they lost one...and that one might be yours.

 

But, please know that despite the very real desire to sink into oblivion, you must reach out and bind yourself to your spouse and your God.  They will help and support you.  And you will want your eyes open, whether to savour the last memories of your baby, or to remember the miracles that God does on your behalf.

 

 

Wouldn't you say "yes"?

In the face of so very many friends that are facing the loss of a child, the medical questions that may or may not have the answers and cures that they hope for, and the complacency that everyone feels until their world is rocked by the imperfect....I feel compelled to share the words that were uttered to me 10 years ago this month, in a ancient Honda, by my husband as we considered Elise's open heart surgery, "You know that if God came to you and asked you if you would watch a child for him for four months, you'd say 'yes'.  Well, isn't this kind of the same thing?"

And so I remind you, all parents, we are never promised a tomorrow.  We are only lent today.

I don't know about you, but that really makes me want to do better in the day to day, and gives me the strength to wrestle down my current frustrations just a bit...and snuggle my kids against their wishes.

Rogue Sensory Applications

I am duo posting this one...because it is Charlotte and Elise.

This is Rogue, from X-men. She has the "super powers" of absorption. She can touch a human or mutant, and take their memories and their powers, the powers is a temporary thing...but the memories tend to stay with her...

At this point, I know many of you are confused or simply don't care. That's fine, but it just struck me as amusing this morning.

Both Elise and Charlotte have what is known as SPD, Sensory Processing Disorder. It means that their brains struggle to regulate sensory input. It can either register abnormally high or abnormally low. For example, a sound can be normal or even unnoticeable to you and it will be WAY too loud for one of the girls, reducing them to cowering or crying. Or, conversely, they can request louder, Louder, LOUDER to the point you think your eardrums will bleed. Same with food, clothing, smells. It can affect any of the senses, and it can present both as over and under-registry, in the same child and even the situation.

Why the heck even bring Rogue into this story?

Because kids with SPD crave either comforting or input, and will take from you. They will install themselves into your pocket and pet your face in a desperate attempt to self-soothe, or crash into you repeatedly on the couch, or rock themselves in your lap, or pick an example...they suck your senses into themselves to regulate (just like Rogue!)... The goal is to teach themselves how to self-regulate without involving others, but as they learn, their parents and caregivers tend to take the brunt of it...emotionally and physically, sometimes as well.

Those with SPD are often hyper aware of other people's emotions, to the point they cannot separate others' emotions from their own. Although they may isolate themselves due to their physical/sensory ups and downs...and can experience an emotional isolation as well...their super powers of emotional reading, can play in their favor and they can be superlative friends because of it. In the face of societal norms...they can give a base of support than no one else can.

They are the rogues of society. But they can be spectacular heroes, too... So before you judge the kid in jammies in the supermarket, or the parent who would love to trade in their parent card, keep in mind, raising superheroes is a lot of work.

chicken: the nugget of truth

This morning something brought to mind one of my favorite interchanges with Elise.  If I've already told this one, bear with me.  It's still funny to me.

When Elise was about 6, Amelia was 2 and they were peers...Amelia was even a little bit ahead already.  And I was beginning to really feel the gap...

We are apparently in the chicken capital of the US.  (I just looked up state by state production.)  When agriculture started to recede, our local area was literally revolutionized by a chicken plant.  We have chicken farms everywhere and a plant on our downtown square.  And a sculpture of a man with a chicken and a basket of eggs on a government building steps. Seriously.

So, chicken trucks are a constant in life.

As a little bit of a back story, you need to know that chicken nuggets made up at least 50% of her diet at this point.  Between post chemo effects, sensory issues, and being a toddler developmentally, there just weren't a lot of options that she would eat.

As we drive into town one weekday, we pull up behind a chicken truck.  And Elise asks, "Whas dat?"

I tell her what she probably already can see, "It's chickens."

She gives me a perplexed look and asks,"Chickens?"

I say, "yes."

She gives me a truly odd look, and asks,"Chickens?!?!?!"

"Yep"

She squares off in my line of sight, and signs chicken.  And asks again, "Chicken??"

"Yes, Baby.  Chickens"

She squares off again, and signs eat.  And asks again, "Chicken??"

"Yes, Baby.  Chicken."

This look of horror overtakes her face.

She signs eat and chickens.  Back to back and looks at me.

I nod.

She leans back, looking like her mind was totally and completely blown.

I was amused, but didn't think too much of it, until supper.  Which included, you guessed it, chicken.

Elise comes hopping in when called to eat and sits down in her booster.  She happily asks, "Chicken?"

"Yes, Baby, we're having chicken and green beans for supper."

Her head snaps around and her eyes narrow.  "Chicken?  Truck?"

"Um.  Yes."

She looks at me, looks down at her plate, and eats with a thoughtfulness.

The next week, we pull up behind another chicken truck.  And Elise pops up into attention, "Chicken?"

"Uh-huh."

She pumps her fist in the air, "Chicken!!!!  Eat!!!!"

From Infantry to Sniper to Cowgirl

Funny.  I had not intended to put up a blog post today...but my brain has been firing on all cylinders...again.  Still?  I may need to apologize if there are just too many thoughts tied together...but, here goes anyhow...

 

These are the things that prompted this one:

~the responses to my post yesterday

~the current experiences of several friends

~the blog post of a friend

~the blog post of another friend

 

As usual, there was the mix of responses to yesterday's POST...but I was struck by a few of them...Namely the ones that told me that truth was somewhat subjective and while they were sure that's how I felt, that I was of course coloring the truth with my feelings...

 

Yes.  Everyone's story is different, but I assure you that I tend to the objective and abrasive swing of the pendulum. 

 

Here are the unarguable facts.  Much of society is not comfortable with imperfect.  That's why many babies with diagnosable disabilities are aborted.  That's why there is make-up and plastic surgery and spanx.  That's why there are nutritional supplements and exercise programs that promise amazing results. That's why people lie about their ages on dating profiles and lie about how awesome their lives are on their Facebook statuses.

 

I go through stages of reading all the blog posts in certain forums and not reading them for a month.  I spend the day in the real world where my child is no longer elfin cute (Although I think she is still every bit of gorgeous and I am jealous of her hair!) and obviously not where she "should" be for her age. I see the looks, social ostracism, and physical recoil thanks to the prejudice against "not perfect".  And then I see the posts that include the gum drops, roses, and rainbows...where life with a disability is perfect.  The future is bright.  And if my life isn't sparkles and unicorns and my child's future isn't limitless, it's all my fault for not looking, fighting, supporting, and pursuing enough therapies.  And it is frustrating for me.  Because it is ALL truth.  The good, the bad, and the ugly.  That's the thing about truth.  It's just the truth.  It's not always perspective.

 

I have a dear friend who has a child with social and physical issues intensified with learning issues.  She has gone back to school for an Occupational Therapy degree.  The classes she is taking have been torturing her because they are listing possible triggers for her child's disabilities...and many of her classmates are at the all-knowing college age where they are horrified that parents would endanger their kids in these manners...Nevermind that 20-30 years ago these consequences were not only unknown, but the triggers were publicly purported to be safe.  (She vacillates between despair and guilt that it really was all her fault that her child is struggling the way he is...and feeling that she needs therapy to talk her down off the precipice.) 

 

Compound this with knowing more and more people with kids with debilitating issues:  learning disabilities, spectrum problems, cancer, chromosomal abnormalities, physiological and neurological instabilities....and you start questioning if your circle of friends is living next to a nuclear facility?  Or if we have been so conditioned to be perfect, that all the flaws of our children are being looked at under a microscope and we are seeing the boogeyman in the shadows?  Or if life really is changing compared to previous generations?  One of the "girls" in a running group I lead is actually closer to 50 or 60, and she insists that the world really is changing, and even she didn't see this stuff before...  And so I continue to question if all the chemicals in our food, in the world at large, and the genetic modifications really is affecting us at a Base 1 level...?  Which brings us back to, is it all our fault?

 

And then I read a post by a friend, questioning therapies and comfort with abilities.  Wondering if we are screaming the wrong rallying cry?  Is it possible that instead of “more alike than different,” a more accurate rallying cry would be “different is ok”?

 

Followed by a blog by another post by another friend...and, as it often does, my brain scrabbled up the wrong image out of one of her phrases..."How I got here: from combat shoes to cowgirl boots".

 

And I remembered one of my favorite and succinct ideas:  "Disability is a natural part of life."

 

I have been in and out of the valley of the shadow over the last few months...and I have been more battered by others' negative perspectives than usual...and have been irritated by the unwillingness to not accept the imperfect. 

 

And I would like to reiterate, that when Elise was born, I clung to the Einstein Theory.  I lived it, breathed it, and fought for it.  She started getting therapies at less than 6 weeks.  The whole gamut, Occupational, Physical, and Speech.  And we didn't miss without vomiting or fever being involved.  And that includes the time she was undergoing Chemo.  We just didn't miss.  I think of this being the Constant Combat Stage.  The Infantry Phase.  On the front lines, screaming while I attacked...every.single.moment.of.every.single.day.  I fought for the entire future's possibilities.

 

 

 

And I got less combative as she got older and the gaps got more pronounced.  I started the Sniping phase of my battle.  I would focus on the important stuff.  And fight over the top items of hierarchical importance.  And when I found Elise and myself rankling under our schedule and resenting therapy, we would take mental health breaks...for Christmas, for summer....we would play with toys that were not angled for therapy...we played for play's sake.  And we fought for this year and maybe next.  Our eye on a particular prize, a particular goal.

 

 

 

And now?  When we are facing gargantuan gaps?  I still think we did the right thing.  And I find myself entering a new stage.  The Cowgirl Stage.  Sometimes you just accept that you are riding a bull and you don't know what direction you are going in.  You don't know what will "Fix The Problem"...or if it needs to be or even can be fixed.  And you know it won't be easy.  As a matter of fact, you are pretty sure that you will finish up, bruised and bloody, and maybe stepped on or gored.  But it will be okay, and you will do what you can do, and there is nothing to be done, but to tie yourself on and allow yourself to get into the rhythm of the moment.  And live your life.  Do the best you can for your child, knowing that you won't be perfect, and that you will make the wrong call at many junctures, but choose to live in the imperfections...  And maybe pray like Hannah making everyone around you think that you are drunk and crazy...confident that God will take care of it all....

Yippee Ki Yay

 

 

the lack of voices

When I started this blog, I wanted to share what was going on in my life for my typical friends and to share what helped, worked, what it was really like for my friends with littler kids...  I was really struggling to find blogs or books that focused on the middle of life...of older kids and young adults...and even parents of adults with disabilities...their doors feel shut...  And so, even if I didn't manage a clockwork posting schedule, I wanted to light the way a bit...for several different perspectives...and to be honest.

And here is where my honesty is going to get sticky, and I know this will raise criticism, and "Nuh-uh's"...

 

And because I love you, here's a warning: 

 

If you are having a rough day, DO NOT READ THIS POST.  I mean it.  It's a dark one today...

Recently, the big "why?" question got asked...Why are there not many blogs about older kids and young adults??  One of my more favorite blogs answered and while I really liked the answer, and it was very seriously poetry to my soul...I am not sure that I agree.  Read it right HERE...and allow your soul to smile...

Now hear a message that I got from a nameless friend: 

Anyway, my [child] is 4 years old and I still cannot be around older ones with Ds. I’m not sure of the exact age but I know I’m not comfortable around teenagers and adults. I am ashamed to admit it but when I see an older person with Ds, my mind screams, “I don’t want my [child] to be like that!” and I just about can’t breathe. It takes everything in me not to cry or run from the room. I am fine with my [child] and other little ones with Ds and I trust that I’ll always be fine with [my child]. With others, I’m not so sure. As my [child] reaches each stage, do you think it’s safe to assume I’ll be more comfortable with those of the same age? Am I a horrible person for thinking this way? Do I need to do anything to “fix” this or just pray that it goes away?

That's part of the reason right there.  Sometimes you just aren't ready to face that stage.  And so you stick your fingers in your ears.  And it's not unhealthy...it's quite normal, if you are honest with yourself.  If you are comfortable, then you were probably around someone with a physical disability before you landed with a belly flop in the middle of your own life.  I can honestly say the acceptance comes in stages.  And perspective.

To my friend, yes, I can assure you, the acceptance will come.  The friends of your child will not cause your airway to tighten...  As you go through your life, and walk with your child's hand in yours, the scary of each life stage will lessen in terror and you will not recoil and the future will become more comfortable...  I cannot promise that your throat will not knot with tears...  I cannot promise that each stage will be easier to deal with...  I cannot promise that your heart will not feel pressed under the burden of different...that is each parent's story...  But it will come with an awareness of each stage's joys and it will be easier to interact with people in those stages...

When Elise was little, I found an article of a couple with Down Syndrome that got married...and my heart cheered and I found a brighter light in my darkness...and I poured over their wedding pictures and smiled...

Now, I can look at the same article, and I literally weep, looking at the faces of their parents, knowing that unlike most weddings, the caretaking is not over.  This is not really a beginning, it is a sacrifice and an addition to their worries and responsibilities....and the sweet and happy couple trot off on their honeymoon, with their parents in adjoining cabins to continue their 24/7 care of their children.  They chose to add to their worries to give their children a stab at happiness.  They chose to make their lives more complex to encourage their children and save them from isolation...to give them a place of normal in lives that aren't.

I watched David and Monica, and read between the lines...  I saw their successes!  I gloried in them.  I laughed over their perspective on their own disability!  I was thankful that their story got out!  My heart filled as I heard them call each other pet names and supported each other...and made their beds and cooked and took their medicines...  I did!  It encouraged me that Elise's independence will grow and come...and that she, too will find love.  But I also saw the lines of anxiousness on their parents' faces.  Their tears of fear for what will happen to their children if they die and leave them alone in the world, pierce me with no hope of healing, because I too hear the echo of that future.

I LOVE and crave the words from parents with older children and adults with Down Syndrome, but they often hurt, cut, and make me cry...because even their victories are not what I had hoped for 5 years ago...certainly not what I had hoped for 10 years ago.  To be honest, they are not the life I wanted for my child.  They are not full of boundless possibilities.  They have capped out their opportunities to a certain extent.  (Just as neuro-typical people do!)  Sure they can still choose between certain jobs...they are finding acceptance for marriage...they have more social opportunities...but they aren't deciding between the soaring options we still think we have at age 20.  It's not what any of us hope for when we smile at our babies' tilt-y eyes and button nose.

I rage against some parents for the acceptance of certain eventualities...don't they KNOW that their child could do more, go farther, accomplish more????  And sometimes that is true.  But sometimes, it's not.

Sometimes it is true that literacy will not be attained.  Sometimes clear speech will never be a success.  Sometimes we will have to settle for translating our children in public, we will have to look into speech support devices.  Sometimes, sign language, despite being able to speak, will offer the only crack at public communication.  Sometimes, a self-contained classroom will offer the best success.  Sometimes it is true that a full inclusion class will not be be best fit for a child's learning.  Sometimes, there will be no possibility of independence achieved.  Sometimes the child, who is now an adult doesn't want to be the social martyr for our little ones.  Sometimes they are tired.  Sometimes they don't want to go to battle any more for marginal accomplishments.  Sometimes living is enough of a battle.  Sometimes the scars hurt too much.  Sometimes peace is all they really want.  Sometimes it's asking too much. 

And sometimes, that truth is simply too hard to hear.

And so, I think that there is a certain loss of bloggers/writers that share their stories at these stages, because they don't want to snuff the hope.  They don't want to discourage the next generation of warriors...in case this is the generation that turns the future around....because crusades are tiring...and you shouldn't start the crusade tired and discouraged...or you'll never get to the battle lines...

 

But, there is always hope.  Shuffling steps just as surely get you to the top of the mountain as confident and quick strides, and no matter how you get there,  the view will be beautiful.  Even if the canyon, shadows, and exhaustion made it hard to get there...  For that matter, the back of the mountain may not have been what you are aiming for, but it is just as exhilarating a success. And sometimes, it's not as high up as you thought you'd get, but as the climb went on, you didn't think you'd get even partway...  But you will.  Hold tight to your hope...no matter how big or little it is...keep it under a vise grip and never let go...it will make everything worth it.  I promise.  Because your trek, no matter how brutal, made a difference for your child.

 

Sometimes there is a lack of voices because they have nothing to say.  Sometimes there is a lack of voices, because you have to see it yourself.

Sometimes your triumph will look like this to the world.



Sometimes like this.

 

 

But it's not any less a triumph.

 



Habakkuk 3: 19  "The Sovereign LORD is my strength! He makes me as surefooted as a deer, able to tread upon the heights. "

Enjoy the Fireworks

Okay.  You need to read these.

http://unstrangemind.wordpress.com/2013/01/27/no-you-dont/

http://theunknowncontributor.blogspot.com/2013/02/compliance-and-special-needs.html



Elise is is a firecracker.  She is not an easy child by any stretch of the imagination.  And the primary difficulty is not even the Down Syndrome most of the time.  Her two biggest challenges do not even include the mental deficits that she operates under.  Her two biggest challenges, for me, are the lack of verbal communication and her sensory issues.  I can put on her pants and her shoes and brush her teeth for the next 20 years and it won't be nearly as emotionally exhausting as not being able to understand her feelings or her flipping out because she doesn't like how her boots feel when she is wearing a certain pair of socks.  And if you add those two together, sensory triggers and not being able to talk about them, it is a recipe for an eye twitch.


This time 2 years ago, we had been pushed to the limits with her impulsivity.  Although we have absolutely known that she has ADHD since she was a tiny thing, it had really started interfering with learning and we finally had to do medication...we had already exhausted all natural and behavioral routes.   We had a terrible time finding a med that worked and didn't take her inherent "Elise-ness".  I am ALL about her being calm enough to learn and not hit friends, but I can't take away her fire...even if it made my day easier.  She was a shell of a person.  A empty husk of her very SELF on several meds.  She would sit there with a vacant look in her eyes.  She wasn't jumping from subject to activity in 4 seconds flat, and she certainly was more compliant, but she was sad and emotionally vacant, too.  And that's just not okay.  We have found a medication that works for us.  It really doesn't fix her issues.  And that's okay with us.  It just barely takes the edge off...it buys her 30 seconds of thinking, and gives her the option to decide against an impulse...sometimes...but it's enough for now.

It is funny that I am seeing these posts now.  I am again facing fatigue with her abrupt decisions, and the temptation was pricking me, "Wouldn't it be easier," it said, "if I didn't have to fight her all morning, every morning...??"  Especially as her little sister seems to be following in her sensory footsteps??  I toyed with going back to her neurologist, and asking if we could try stuff...again...and had quashed that temptation, just last week...and then these posts went up, and I am encouraged that I made the abominably exhausting, yet RIGHT decision...

So, thank you, my fellow bloggers for sharing!  And those who think I should try something else?  Sorry.  That's just too bad.  Enjoy the show.  For my Firecracker is as she should be.