Categories
Addiction Kids Meth Exposure Special Needs Surviving

Exposure

My girls, Alison and Blythe.  Have you met them? 
Alison & Blythe 2007

Protecting them is my job, and I am damn good at it.

But I failed them, my friends.

I failed in a very big way, and while I forgive myself for my ignorance, I will also carry the burden of that failure around for the rest of my life.

Blythe has a slight obsession with The Adventures of Shark Boy and Lava Girl, these days.  She thinks about them, and talks about them, and tells her friends about them.  Recently I asked her why she likes them so much, and she spouted off a whole list of things.  Then she said, “I like Lava Girl because she’s on fire inside.  Just like me.”

She has been on fire inside since she was two months old.  That’s when the screaming fits began, followed shortly thereafter by “pseudo seizures” where her body acted as though it was seizing, but her brain function remained normal.

She was inconsolable, for hours at a time.  Her tiny little body would stiffen, all over, and she would flinch away from my touch.  I was so afraid to hold her when she was like that, because I thought I would drop her.  So I would put her in her crib and watch her fight against herself.  Every muscle in her body would tense up, “seizing”, and then she would fling herself this way and that.  And scream.  She would scream for hours, even after her body calmed itself. 

She was on fire inside, and I couldn’t figure out why.

I can’t even count the number of pediatricians we saw, those first few months, but not a single one of them had answers. 

None of them asked if she had ever been exposed to Methamphetamines, even though I now know she was displaying signs of exposure.  As she’s gotten older, she’s shown more and more signs, and yet none of the experts assigned to her care – myself included – ever asked the question.  

The thought never even crossed our collective minds that meth exposure might have been contributing to the ever-growing list of problems with her Central Nervous System.  Even if anyone had asked, I would have told them, with complete confidence, that she had never in her life been exposed to meth.

I know differently, now…  and that knowledge changes everything.

As always, my disclaimer:

Please understand that I don’t hate him, I don’t wish him any harm, and I’m not trying to make him look like a monster.  He is getting help for his addiction and his behavior, and I hope he’s able to conquer those demons.

But this is my story.  My life.  This was my reality.  I won’t be silent.

Categories
Health and Nutrition Kids Letters Special Needs

Milestones

My Baby Girl,

It’s been a year.  Three hundred and sixty-five full days. 

I’m not a superstitious person by any means, but these dates – November 10th, 11th and 12th – have been looming in my mind. 

When we came home from the hospital, a year ago today, I made a deal with myself that if I could keep you healthy for a year, I could stop worrying so much about your future. 

A whole year.  A lofty goal, if ever there was one.

But here you are, my gorgeous little girl, smiling and laughing without a care in the world.  We made it, me and you.  A year.  Nearly a third of your life without a major illness. 

What a milestone, and you don’t even know you’ve reached it.

Just looking at you, today, brings tears to my eyes.

Parents aren’t supposed to have favorites, you know.  And I don’t.  I don’t prefer you or your sister over each other.  But my love for each of you is different.  Custom made, day by day.

So much of life before you was filled with what the future held, with making plans, with expectations, with tiny little details that didn’t really matter.

Since you came into my life, though, I haven’t taken a single thing for granted.  Not for a moment. 

We’ve had to fight for this, haven’t we, baby girl?  From the very beginning, nothing about your life has been simple or ordinary. 

I sit back and watch you sometimes, doing your little girl things, and I’m amazed that we have reached this place.  This point in time where you can just wake up in the morning and go through your day like it’s no big deal.  As though tomorrow is guaranteed. 

I am so happy to be in this place – this now – with you.

You amaze me, my sassy second child.  You are filled with the kind of fire most people only dream of, and you’re only three.  Three! 

Today, I dare to think of what the future holds for you. 

And now here you are, sleeping next to me.

Of course I needed you near me on the anniversary of the most traumatic night of our lives, didn’t I?  The night that haunted us for months.  The night that changed the lives of every single person involved.

I had to have you close to me, so that I could smell you and hear you breathe and bury my face in your hair.  So that I could reach out and touch you and know that you are here, right here, with me.

I am so glad you’re here, baby girl.

And you are well. 

Yes, you are.

—————

To read the story from a year ago, go here, here and here although, reading those posts again, a year later, I can’t believe I left out so much of what happened.

Categories
Allergies Kids Special Needs

Halloween : Special Needs

My girls went trick or treating last night, just like the majority of kids in industrialized nations around the world.

This year was the first time that Blythe, at age 3 1/2, willingly participated. 

In previous years she either had no interest at all, or completely hated the festivities involved.

It’s significant for her, a child with severe food allergies and Sensory Processing Disorder, to willingly participate in something that puts her so far out of her comfort zone.

She can’t eat any of the candy she collects.  I buy special corn-free candy for her beforehand, and trade her for her stash so that she can have some treats.  It amazes me that she doesn’t mind handing over her goodies.

Until a few months ago, her SPD kept her from appreciating the joy of dressing up.  She was terrified of costumes of any kind.  Wigs, masks, feathers, anything with texture freaked her out to the point of  a complete meltdown.

Last year, in preparation for Halloween, I spent months choosing a costume for her that resembled her beloved footy jammies, but in the end… there was no costume. 

She wore her footy jammies with a name tag that read, “Hello, I’m STUBBORN” and you wouldn’t believe the laughs she generated.

My kid was terrified of the costumes, completely intimidated by the idea of wearing something ‘different’ and couldn’t even eat the candy she collected… in my mind, I thought, “What’s the point??” 

Halloween was a nightmare, to put it mildly… but I wasn’t about to deprive Alison of her night of fun when she willingly gives up so much for the sake of her sister on a regular basis.

This year, though, was different.  Blythe actually showed an interest in choosing a costume and was set on being a ghost.  Which changed into a very, very strong desire to be Princess Ariel… something rather out of character, but who am I to say what she can or can’t be??

She wore her Princess costume, at first over footy pajamas (of course) and then over her favorite outfit.

She trick-or-treated for awhile with her sister and friend, and then decided to help me and her friend’s mom pass out candy.

She never complained, not a single time, that she couldn’t eat the candy.

She loved her costume, and cried when it was time to take it off and go to bed.

What a difference a year makes.  My girl…. she amazes me every single day.

Every. Single. Day.

Categories
Kids Special Needs

Little by Little

Blythe’s therapist met with me and Jeremy recently and we all shared a laugh about the thought of teenaged Blythe wearing footie pajamas on her first date. 

When I closed my eyes to imagine the scene, I giggled as I picture her getting ready.  Her hair is washed but uncombed, because she doesn’t allow people to touch her head.  She’s wearing biker shorts instead of pan.ties because the elastic irritates her skin. 

Standing in front of her closet, she is trying to choose between jammies adorned with hearts versus kitties.  Her shoes, of course, are either froggy boots or sandals purchased several sizes too large, so that they can strap over the bulky fabric covering her feet.

She is graceful and sweet and full of laughter as she zips up, covered from toe to neck in fleece, her protective suit of armor.

Before she started therapy, Blythe wouldn’t wear anything but footie pajamas.

Slowly, though, she’s expanding her wardrobe.  The first step forward was wearing things over her jammies.  The second step was wearing a soft cotton dress for a few minutes at a time.  The third step was going to Target and getting to choose a beautiful Spring dress, all by herself.  Fourth step?  Wearing that gorgeous dress every evening after dinner, while she danced.

And now, finally and suddenly, my girl is getting dressed every. single. day.  In real clothes.  She’s even playing dress up – with itchy clothes.

This?  Is astonishing.  Amazing.  Incredible.  I am weeping behind my camera lens.

I am so proud of my little princess.

Categories
Parenting Special Needs

Ostrich

It’s been six months since Blythe was diagnosed with Sensory Processing Disorder.

She’s made incredible progress.  A few set-backs, to be sure, but mostly progress.

I just realized today that I haven’t been taking advantage of all the resources available to me, to help her.  And in that discovery I was smacked in the face with something my best friend told me many, many years ago.

When things get tough, I invert.  I do things by myself.  I don’t ask for help.  I reinvent the wheel when there’s a perfectly good one sitting 10 feet away.

Why do I have to keep learning this lesson? 

I let myself get so overwhelmed by the heaviness of it all, never asking for help until I’m being crushed into the ground, like Atlas

Why am I so afraid of letting others help me, or in this case, my daughter?

Why haven’t I connected with the many people who have offered support with Blythe’s special needs?

Why didn’t I assume there was a website dedicated to clothing for kids with SPD (many thanks to Heather for the link)?  So many simple solutions to problems we face every day.  Why didn’t I at least do a quick internet search?

Why did I take it upon myself to research every possible preschool for Blythe, instead of calling our county’s office of education for recommendations?

Why haven’t I hired a housekeeper?

Because I do things myself.  Even if life around here would have been a hundred times more pleasant for the past six months, had I just reached out for some support.

Why haven’t I learned to ask for help?  Or at least learned to gracefully accept it, when it’s offered.

Every time I re-learn this lesson, I want to give myself a swift kick in the ass.