Tag Archives: exceptional

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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Difficult Day…

14 Oct

Love Oma…

Originally uploaded by CleverGirlBek

Had the eval review with the county education folks…

Kiddo has significant impairment and they feel he needs to be in a classroom dedicated to special needs and social communication and fast.

They are suggesting a school that is at least 30 minutes away….That’s 2 hours of driving. 5 days a week. Full days.

They said he can start tomorrow if we can get the public school enrollment stuff together by then.

Finally the psychologist said “or we can work on a gradual transition”….

Lots of leg work to do…

Lots of information to understand…

Lots of lack of funds to keep him in his current school and beef up his therapies and total lack of support from the school district unless he is in the intensive setting.

Frick.

Called my dad to talk about something else and just kind of let it all out.

I mentioned something else about my mom and he mentioned that she has other things going on, since her mom died.

Yes. My Oma died, apparently, on Monday. No, it wasn’t unexpected. She has a major stroke a month ago and has been in a coma and receiving hospice care. She lived in Germany. When I was a kid we visited her and Opa every summer in their tiny little storybook town.
When Alex was born, my mother wouldn’t let me send pictures to Oma in the home, because Oma didn’t want pictures of the baby taking up space. Ouch. Have I mentioned the narcissistic control of information in our family?

Anyway. I’m sad. I’m overwhelmed. I’m having a really hard time functioning right now. Part of me wants to pour my wee bit of energy into my raw materials. But the rest of me just can’t move. It’s like when you overfill your cereal bowl as a kid and then put the spoon in to get a bite and…well, you get the picture. My head is at maximum capacity. I’m fixed on one spot. Eyes wide. Tears arriving at regular intervals.

I’m going to bed because my brain and my heart are just so overloaded with the events of today and we have decisions to make but so much conflicting information. And at the heart of it is this little boy who is just so sweet and loving and overly trusting and who sounds like a freaking genius but the reality is he cannot practically use language to communicate. He doesn’t converse. He announces. He may be on the ASD or have Aspergers (scored “highly probable” in both) but to have the specialist look at him we have to take what is a leap of faith for most parents, but we also know we can’t do that. We also know the nuances that make our kiddo unique and wonderful but also make him eligible for these services, also put him at risk for many of the ills of our school system, and of course, our district says our concerns are unfounded but apparently they *have* to say that or they just don’t read the freaking newspaper. Meanwhile, they follow the “hear no evil, see no evil, speak no evil” theory that occasionally gets broadcasted by a frustrated and angry parent but then disappears from view before anyone can actually view it. Also, I just can’t block out the comments on most of the articles about autism and special needs and discipline in our great state of Florida. The overwhelming majority of comments are from people who think that autism, Asperger’s, and the like are nothing more than bad parents and spoiled kids. Some frustrated mom of a kid with autism said “if your kid had cancer, would you try parenting them into remission”….

Anyway.

On most days I am a mac.

Today, I feel like a PC.

And I really need to reboot….
xo
b

ps. the chest in the picture was made by my oma for my childhood dollhouse. I didn’t know she died yesterday. But out of nowhere Alex went to explore our shelves and my treasures, and picked this up…Then he picked up my little glass/mirrored cube with my Swarovski hedgehog/porcupine and birthday cake- gifts from Julie, (dearest friend and my birthmom,) Julie’s mom, my biological grandmother, died before Julie found me. She loved glass and funky jewelry. Alex was intrigued. I was reminded of how interesting life is and how it reconnects people and spirits in the strangest ways….

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