Tag Archives: npd

I love you with all of my…

22 Jan

I always wanted to make sure my child would know that I love all of him.  There are no conditions on my love for him.

I did not have that sense when I was growing up and I was told more than once that the parental love I was receiving was completely and utterly conditional. This is not an assumption, on my part, but a spoken fact. “My love for you is not unconditional”.

Anyway, I love my little boy unconditionally.

When I was pregnant with Alex, we had an ultrasound that indicated almost every marker for various chromosomal abnormalities, some of which are incompatible with life.

While we waited the three long weeks for the results of the amnio we sat and we thought. I cried. I think that almost six years later I am still a little dehydrated from those three weeks.  I couldn’t speak to anyone, not even my husband, Alex’s dad.  I did speak to my mother before the fear and sadness really sunk into my bones, and while I explained and broke down, I was called stupid and told that the only option was to terminate the pregnancy and that I shouldn’t be cruel, I should do it immediately and not wait for the amnio results. She ordered me to stop crying because the chromosomal abnormalities were my fault (unconfirmed abnormalities at this point, unrelated to any available family history or parental health conditions) and that I should accept my role as parent and terminate rather than make this child suffer further.

Between the tears, and the long naps, and the anger, I did some research.  This time period really defined me- the mom.  Everyone hopes and everyone dreams and most prepare for a healthy, perfect baby.  We all know that doesn’t always happen.  We all know that the best laid plans are frequently rerouted, rewritten, torn up completely and replaced by newer dreams that are sometimes shinier in very hidden, and very arduous ways.  This was when I learned that love doesn’t mean caring for someone in health only, which is a lesson I had learned first-hand years before, but it took this to understand the enormity of become a parent, the hopefully never-ending-ness of it.  And I learned that from both sides of the loved one and caregiver relationship during those few months, and since, in sometimes joyful and occasionally heart-smashing ways. I have learned to pick up the smashed pieces and reconnect them in new ways, a crazed mosaic of hopes, dreams, and love.

I realized that my parents were the one who could not accept damaged goods, damaged people.  I realized that my ability to love was not destroyed by the love that was conditionally given and taken during my 27 years (at that time).  It was then that the tears dried up (briefly, I am an emotional gal) , I pulled on my fleece slippers (my ankles were swollen, I couldn’t wear my combat boots or my ass kicking heels), and we figured out our plans. We figured out our formulas, our conditions, for how we would handle the information that the amnio would return to us.  It had everything to do with unconditional love and respect.

In a few months that revelation will reach it’s 6th anniversary.  The scare, the waiting, the distress, the crash course in everything from DNA to femur length to a parent’s love for their child, was an accident.  It was a terrible accident, due entirely to a scheduling error, as the test that set off the need for the amnio, and the horrible waiting, was scheduled too early.   I am grateful, though, that we were forced to define the why of our desire to become parents.  That ‘why’ still guides me when trying to determine our next step in helping Alex and helping our family, it is my personal mission statement, my grand goal for my parenting of Alex (which I will share in another entry, at another time).

Everyone says, before they have kids, that they will parent differently… I’ll never this, and I’ll never do that… The errors of my parents, so clear in my current year, are grand and horrible and shocking. I know I will and have already made mistakes that perhaps Alex will remember or only notice when he is in his thirties. But my hope is that he will know that I am human, and flawed, but that everything I did, I did with unconditional love for him, all of him.  I will never allow a day to pass without letting my kid know that I love him. No matter what.  I will never judge him based on what he cannot do, or punish him for his quirks, or demand that he behave more like so-and-so’s child (who is not Alex, not in any physical, cognitive, or emotional way).  I will provide the encouragement and support that he will try without fearing failure to such a paralyzing extent that he cannot try, so that he will have opportunity to succeed (can’t have one without the potential for the other).

Ok, onto the picture of the day…. With his PDD/Asperger’s, Alex is fairly inflexible regarding many things- word usage is a big one.

I have always told him, “I love you with all of my heart, all of my soul, and all of my brains too”. He giggles at this and replies “Brains!” in a way that is a little unnerving in a darkened bedtime room, coming from a kid who has never even seen anything zombie related (although we do have the Zombie Survival Guide, which was one of the funniest and coolest baby gifts from a dear friend. Thanks Ig!).  A little over a year ago I started replacing “brains” with other words, I do this sometimes to see if he is paying attention, and also to show him that a little flexibility can be funny and sweet and not distressing.  It’s best to do this sort of thing when he’s all blissed out on bedtime stories, lullabies, and good night kisses.

“….and all of my cranes too”

“…and all of my trains too”

“…and all of my drains too”

And he has always corrected me.

After school today, he played with his old Brio trains for a long time (so long that I went to check on him and his dad, as in our home “don’t worry unless you don’t hear anything” is part of our parental code)…

I had retired to the bedroom with my laptop and some tea and was typing away when I saw him at the door.

Trains

He had an armful of trains.

I put the laptop aside and he dropped a pile of trains on the bed with me.

“Mama,” he said “I love you with all of my trains.”

He was so proud and so happy. He is so literal and wonderful.  I was trying to help him and really he found a way to meet me in my goofiness.  In my heart I know he is still protesting my playful use of incorrect words and terminology, but that he ran with it, for just a moment, and put his own special signature on it.  And that gives me hope and strength and a warm, happy heart.

At the end of the day, it’s not about what we don’t have or about a loss of dreams.

It’s about the heart, the soul, the brains, and most definitely trains.

xo

Bek

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Goggles.

11 Aug



Goggles.

Originally uploaded by CleverGirlBek

Coolest googles/glasses ever….

Mid-century Safety Glasses from Chigal.Etsy.com….

I am obsessed with eyeglasses lately…Mostly because I have this corrective lenses RX burning a hole in my pocket….

Originally, I started wearing glasses in 5th grade. I thought I was the coolest kid in the world. I also wanted braces. I was weird like that. I think I thought that if I had braces and really hideous pale lavender plastic aviators then I would have a chance at being the ugly duckling that turns into a swan…Like in a bunch of 80’s tween movies…. What can I say, I was awkward and uncomfortable in my own skin. I guess I thought that if I went from awkward to really awkward than my base level of awkward would be comparatively beautiful. Since then I have had blinding cataracts, and the lens implantation surgery (I have plastic and metal lenses in my eyeballs…yes, I was awake through the surgery (and had to sneeze…talk about a panic attack!) and I have the video somewhere…)…My bionic lenses make my pupils reflect all “cats eye” when the light hits them just right…I had a boss, once upon a time, who was mildly freaked out by this…

I think I spent way too much time developing this theory as a 10 year old. But where I come from, appearance is all too important. I have seen it paralyze my mother her entire life. I was there, going through morphine withdrawl (post emergency spine surgery….hospital screwed up my RX so I went from “enough to drug a horse” to raw nerves firing, screaming and all of the craziness that comes with that sort of a chemical snap) vomiting and sweating, dehydrating, severely hypoglycemic and drinking gallons of juice but I kept dropping, my antibiotic IV pump was alarming and my fever was rising…. Unable to take care of myself. I was there, waiting for her to help me up to drive me to the emergency room. I waited for 4 hours while she made herself “presentable”. Thankfully, my dad came home at that point and drove me right to the hospital. An emergency is an emergency is an emergency…. But for her, pruning is her OCD. It is illness, it is dangerous.

So I do reject that level of vanity. And I rarely ask myself what a stranger (like those in a hospital waiting room) would think. I do ask myself what my kid might think. Because he Is more important than anyone or anything else in my world. I’m not saying that folks should just be comfy and not dress for success. I’m just saying that dressing for success should be appropriately channeled, so that failure does not derail all of your attempts… I’m also a bit more comfortable in my own skin these days, which helps…

But I do need glasses…

So I bought these and someday I will have rx lenses put in them… But for now they sit on my table, and they do seem to be sending me some positive energy with which I will create, create, create…
For now, I have ordered 2 pairs of glasses off of the internet… I’ll report back when they arrive… I just don’t have time to head to the optician/lenscrafters these days….

We shall see (and hopefully we shall see clearly!)

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