My son and I went for a walk last night.

We talked a lot while we were strolling. He likes to talk. One of his favorite things to do is plop down next to you, wherever you are, and ask, “So, what do you want to talk about?” He gets his chattiness from me, for certain. Lately our conversations are all about his behavior and it’s not a pleasant topic, so last night I tried to let him enjoy himself without discussing, what has become, this disruption in our lives.

standing atop the roots of his favorite tree

We didn’t really know where we were walking; there was no destination in mind, no idea where we would turn off the path and exclaim, “This seems a good place to stop.” We just went where our feet took us.

We laughed at dogs playing, we talked to our neighbors, we stopped to watch the ducks swimming and get a glimpse of our reflections in the pond. We were happy. There are few things that bring me as much joy as my daughter’s laugh or an authentic smile on my son’s face.

My son wore his plaid fisherman’s hat and I carried bottle water and a chestful of overwhelming guilt and confusion. As if my own weight weren’t enough!

Our life, in this moment, bears many resemblances to walking out the front door into the unknown. Private school? Public school? Therapy? Meds? What will it take? I like to be prepared when venturing into battle and right now, well…I might as well be going up against a fire-breathing dragon armed with nothing but 16.2 ounces of spring water. But, one way or another, I will slay that sucker. You can be sure of that.

We saw some strange things on our walk; a bird’s foot, lots of goose poop, a wrapped tampon laying in the road, which is far better than an unwrapped tampon, I can assure you. And, we saw beautiful things too; like the blue sky, trees in bloom, and a man sitting on his front porch reading to his wife.

As we have for the past 11 years, we find ourselves on a journey for which we have no map. It’s hard to be lost, but I hope more than anything that my son will be smiling along the way.

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Sometimes when you have so much to say, you find it difficult to say anything at all. That’s where I find myself right now.

I can’t comment on the events in Boston. I still can’t even talk about Sandy Hook. I’m tense every time I let my daughter go to the movies, or drop my kids off at school, or get on an airplane, or now…stand on the sideline of a foot race. These events make a person with anxiety want to stock up on plastic, duct tape, and canned goods and never leave their house again.

I can’t talk about my son right now either; at least not without crying. As if he hasn’t had enough challenges with his body, now we are dealing with challenges of the mind. He gets his OCD and anxiety from me, but he gets his defiance from his dad. Hi, honey! The difference is that my husband is only defiant with me and my son is defiant with authority.

Right now we are lost, floundering in waiting lists, county funding, new doctors, and a teaching staff who has completely lost their patience. I’m sad. I’m angry and hurt by the entire situation. And, I’ve been let down on so many levels and honestly, I don’t feel that I can bear that any more. I wish I could go back in time and put my advocating and fundraising to use elsewhere. Though, let’s be honest, if I had a time-machine I would first go to 1988 and get my skinny body back.

Tonight, I sat here sobbing for the sixth hour straight, with a throbbing headache, wondering why God has chosen this path for me. This week has been heartbreaking.

And that’s when, on cue, the toilet upstairs started overflowing and leaked right through the kitchen ceiling. Because nothing quite says, “Up yours! This week isn’t over yet!” like john water in your fruit basket.

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Yesterday afternoon, my 10 year old son had six teeth pulled. Because my kid is special, this had to be done by the Chief of Dentistry at our local pediatric hospital. When I say, “special” I mean that my son has bigger medical bills than your son.

Thanks to anxiety, gagging, reflux and a heart condition, this meant general anesthesia for the eighth time. I have always said that watching him get wheeled away to surgery is the hardest part. I was wrong.

Yesterday, the hospital staff gave me the option of joining my son in the operating room until he was asleep. I had never done it before and I was one part happy to be there to comfort him and one part curious about what he has experienced many times while his dad and I have been down the hall drinking waiting room coffee.

I donned something akin to the bunny suit from A Christmas Story, only it was blue and didn’t have ears, and followed the gurney through the heavy OR doors. What happened next is something I will never forget. Hint: It wasn’t a Red Ryder BB Gun.

Once transferred to the operating table, my son began to shake and cry and FLAT OUT refused to breathe the laughing gas coming through his strawberry scented mask. I knew this wasn’t going to go down as planned and when the nurse told me to show him how easy it was, and whispered for me to pretend to breathe into the tube, I would be lying if I didn’t think about taking a gigantic whiff.

Instead I tried to calm my son as four people held him to the table and forced the mask to his face. I placed my head directly in front of his and held his hands tight as I kept repeating, “You’re okay. You’re doing a great job. Good boy.” Over and over and over, for the eternity it took to get him to sleep.

His eyes had fear in them that I hope no parent ever has to see in the eyes of their child and as he tried to yell, “Mommy!” from under the mask, my heart broke into a million pieces. I calmly continued, “It’s okay. I’m right here. You’re doing a great job.” It was like watching a death scene in a movie, only it was real life and I was letting these people suffocate my son.

In less than 30 seconds, his grip on my fingers loosened and they laid him back gently. I picked up the Matchbox car he had thrown across the room and found his glasses that I was sure would be crumpled and smashed, but were actually intact. Then I went to the other side of the OR doors and took off my bunny suit and promptly began crying. I didn’t stop until the doctor came to talk to us.

Today my boy is playing, eating Jell-o like it’s his business, and marveling that the Tooth Fairy left him $20 and let him keep his bag o’ teeth.

But mostly, he’s just getting annoyed at how often I keep grabbing him for extra tight hugs.

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I’ll be honest, I’m the first person to admit that I don’t know what I’m talking about.

I didn’t have any siblings who were close to my age. By the time I could form full sentences, my three older sisters had either moved out, or were close to it, and my step-sister and I never lived together. Sibling rivalry, I know it not.

I thought I understood the dynamics from watching my friends with their brothers and sisters. I remember the occasional name-calling or shoving match and thinking that I was glad I didn’t have to share my room, but I don’t remember seeing anyone have complete and utter disdain for a sibling until my kids came along.

Everyone tells me it’s normal. Everyone says that it’s just a phase and my kids will grow up to be kind to each other, but right now things seem awfully bleak.

I understand that it’s hard to be a 13 year old girl, because a long, long time ago I was one. You know how people say there are only two things which are certain; death and taxes? Well, if you’re a girl you can say death, taxes and hormones and when you’re 13, the wicked ones are raging. I would imagine it’s especially hard to be a 13 year girl and have a little brother with special needs. That is something I can’t pretend to comprehend.

What I do know is that my 10 year old son and his many quirks and needs are sometimes painful for all of us, but always painful for some of us. And, by some of us I mean my daughter and only my daughter. Every single thing he does annoys her. Greatly.

When you’re a teenager there isn’t anything worse than not fitting in and her little brother doesn’t. As much as I would love for her to swoop in and be the big sister who helps him with homework, reads to him at night and protects him from bullies, I have accepted this is unrealistic. It’s just not who she is. She’s more of the eye-rolling, never-speaking, ignoring type.

Of course, there are a lot of things I want that I can’t have, but giving up this dream feels harder than most. It wasn’t along the lines of having a home in Hawaii or the leading role in The Notebook alongside Ryan Gosling; this sibling-love thing seemed doable. Instead, it has turned into a sort of love-story gone wrong; mutual admiration morphed into him adoring her and asking about her day and her yelling at him and slamming the bedroom door with an, “UGH!” and “You are so annoying!” thrown in for good measure. I’ve seen people divorce over less.

Maybe I should stop expecting so much from my dreams and just be happy if they don’t end up killing each other.

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