Categories
Addiction Kids Meth Exposure Special Needs Surviving

The Blame Game

Thank you all so much for your support and encouragement on my last post, where I talked about learning of Blythe’s exposure to methamphetamines.

I realize that it’s not my fault for not knowing she was being exposed, but I can’t help but feel a lot of guilt, anyway.  I do feel as though I failed to protect her, but I also know that I did everything I could to keep her safe.

For the majority of Blythe’s life, the world at large has been a danger to her.  Every time we ventured out, we were taking a risk.  Everything she touched, away from home, had the potential to send her into anaphylaxis.  If she so much as leaned her cheek against the counter at the pharmacy, her face would swell within minutes.  That’s just a glimpse into what life was like for her.

I always did my best to keep my fear at bay, but I think I was able to do that, in large part, because our home was safe.  If the world was a battlefield, home was our neutral ground, where we could let down our guard and live like normal people.

I could spend hours telling you all the things I’ve done, over the years, to make sure our home was a place where Blythe could just be a kid, without worries.  All the research I’ve done, the ways we’ve altered our lives to provide the best possible environment for her to grow up in. 

So, to learn that she was being exposed to methampetamines, right here at home, the one place on this Earth that I thought was safe for her…  I can’t explain how it felt, other than to say it knocked me down in a way nothing in my life ever has before.

I worked so fucking hard, every day, to give her a place where she could be an innocent kid.  I did fail to provide that for her.  Through no fault of my own, obviously, but it’s a failure, all the same.

I was really, really angry.  My home didn’t feel like home anymore, it felt like a toxic waste dump.  And I place a lot of blame squarely on the shoulders of the person who was responsible for her exposure, where it belongs.

But I also know how much he loves our daughters, and if he had known it was his addiction that was making her sick, I like to believe he would have done something about it.  It’s hard to know, for sure, given the nature of addiction, but I have to try and believe that, for my sanity.

I’m trying to keep my focus on the now.  Since she has stopped being exposed to meth, her health has improved remarkably and dramatically.  It’s fantastic and amazing, and gives me so much hope for her future. 

For that, I am so incredibly happy.

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 Parenting

In Good Hands

                   

Those three own my heart. 

They occupy every nook and cranny, day and night, awake or asleep.  My every breath, my very soul is consumed with them.  I know no other way.

And so, of course I will miss them when I go to San Diego this weekend with my sister and our cousin, Jenn, who happen to be two of the funniest people I know. 

I will miss them while I’m laughing and sipping wine and lounging on the beach.

I will miss them while I’m eating tasty food and doing all kinds of shit without interruptions.

I will miss them while I’m sleeping in and taking a long, hot shower.

I will miss them, yes I will. 

But I have to trust that they will take care of each other while I’m taking care of me, myself and I.