Still Alive

One day, I’ll return to writing for my own sake.

In the meantime, this is what is going on right now:

Evan is thriving in middle school. The girls are swarming. It’s bad. Last Thursday, after some really strange symptoms that had been going on sporadically, we were told that they thought he had a brain tumor. More about that experience on another day. I just can’t right now. He is seeing a pediatric neurologist in a few days and we’ll hopefully get to the bottom of it. In the meantime, I am trying not to unravel in my worry by focusing my attention on the fact that the head CT was negative. I am instead focusing on other things: that–for the first time ever–this kid has friends; that girls love him and I actually have to worry about what goes on when he is not supervised with a girl, that he is now wearing small men’s clothes, that he has that goofy ‘stache coming in and his dad is going to have to teach him to shave.

Zach is…Zach. He refuses to have anything to do with a toilet. I am tired of having to buy Pull-Ups. Or worse yet, diapers. He still sleeps in a diaper because Pull-Ups leak too much at bedtime. I would let him feel that discomfort with the idea that it would motivate him, but he just sleeps through it, thus we sleep through it, and we wake in the morning to a child with a rash and blue lips from sleeping in soaked pajamas. I cannot deal with neither the grossness factor or the health risk of that. We encourage. His preschool teachers encourage. We have purchased every toilet-learning device known to man, looking for the magic one. Currently, that is this cushie Prince Lionheart insert that seems so comfy that I wish it would accommodate adults.He has no desire whatsoever. But what is he doing? He is speaking plainly, counting, saying his alphabet, (crudely) writing his name, singing songs. (Please do not mix up the order of he verses of “The Wheels on the Bus”!) In May, this was the child who could literally say nothing that a stranger could understand. So I am not sweating the potty stuff. We’ll get there. He always does, doesn’t he? He’s still my little wonder–smart, cute,  funny, sweet.  He’s just Zachy.

John is making me proud everyday, He has lost over 50 pounds since the fateful day over the summer when a doctor I respect came to me to tell me that he could have died at any second from the blockages in his heart. His BP is down. He is down to only one medication for diabetes, and that dosage even had to be cut in half. His cardiologist cleared him to run at home after he outgrew the mild exercises at cardiac rehab. His cholesterol was actually low at his last check, so his medication for that was cut in half. The beta-blacker was stopped after he exhibited no need for it. He was wearing a size 40 waist in the summer. He is down to a 34, and those are falling off, but we’re holding off on shopping for more, since he’s built up to 2-mile runs daily–any little bit of weight he has left will melt off as his endurance gets back up there. His doctor says he only needs to lose 9 more pounds to be ideal body weight. If he loses 18 more, he will be back down to his post-boot camp weight from his Marine Corps days.

And me? I’m hanging in there. I have–wait, let me count–8 more weeks left of school. I start my capstone next Saturday. My paperwork for graduation is submitted. I am off of work. Blame some little boys who cannot seem to get their dirty laundry in a hamper. I tripped on some dirty clothes and fell down the entire flight of basement stairs on my left leg, with it ricocheting off of each step on the way down. They thought stuff was torn. Instead, I found out that every piece of cartilage in there is inflamed from the trauma. So it has been injections, PT, crutches (for about 5 weeks). I am finally to the walking stage, but only for very short trips and in transit. I cannot stand or walk for long periods at all. (Read: I can limp to my class and sit in a chair, I can walk to the car and get in it, but I can’t do shopping trips, etc.) I’m just hanging in. Also, I remember lamenting on here how I hated undergrad corporate finance. It has nothing on the 600 level.

That’s all.

I’ll be a blogger again one day, I swear,

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This Could’ve Been My Kid: Toddler Boy Called A Faggot At WalMart For Wearing Pink Headband

http://www.mommyish.com/2013/07/31/toddler-boy-called-a-faggot-at-walmart-for-wearing-pink-headband/

Anyone remember Evan and his affinity for all things pink and sparkly? I didn’t really care, but I was worried for him simply because of people like the man in this article. Because people are ridiculous. And dumb. And virtually intolerant of anyone or thing different from themselves.

I remember those days. I remember having to tell my son that, while there was nothing wrong with him wearing or choosing whatever he liked, that there were people in the world who didn’t understand that and would be mean and cruel to him as a result of his different tastes. That didn’t make it okay, but as his mother, I felt it was my duty to protect him from any potential threat. I would rather he learned that lesson gently from me at home as opposed to the way this innocent little boy learned. So he expressed himself in the house, but not out in public.

Right or wrong, it was such a story as the one above that motivated me.

If I reflect back on that time in his childhood, I feel guilty. His personal preferences have always reflected his quirky, spunky nature. He is not the same as everyone else. He knows it, we know it, everyone knows it. He may have outgrown the pink, sparkly phase, but he has shown other differences. That’s fine with us. His unabashed exhibition of who he is for all who care to get to know him reflect a comfort in his own skin that many of us only hope to have at some point in our lives. I hope that time all those years ago didn’t quelch any part of that within him.

If it did, I am no better than the oaf in this story.

We all have our heads crammed full of what we should be/ think/say/do…
You’re a girl. You can’t throw a ball.
You live in the city, so you have no values.
You’re rich, so you must not know what it means to work.
You’re a man. You aren’t worth shit if you don’t solely support your family.
What do you mean, you can’t cook? Aren’t you a real woman?
You’re poor so you must be lazy.
You’re straight, so you hate homosexuality. You’re gay, so you’re a deviant.

We are who we are. That’s the world I want for my kids, in a nutshell. A toddler in the midst of discovering he is separate from his parents can wear a damned headband-pink, green, sequined, lacy-if it makes him happy. Evan can be obsessed with history instead of XBox. We can choose for my husband to stay home if it works for us. And, yes I suck at cooking anything aside from 3 specialty dishes, but I can rock out some corporate finance while keeping you alive, so that’s okay, right?

Our preferences don’t make us better or worse people. We are not less simply because we have our own strengths and weaknesses that are distinct from the person sitting next to us.

Someone needs to teach that man a lesson.

Bitchypants

So Long, My Toxic Friend

458980Yes, I know I’m a respiratory therapist. I had a reply for people who would point that out to me: “Haven’t you ever heard the phrase, ‘Do as I say, not as I do?'” Or I would tell them that, unlike my patients, my lungs were healthy and I was not in a hospital bed.

I’m not stupid. Perhaps one of my coworkers summed it up the best: “Andrea, you aren’t stupid. Far, far from it. You’re a very smart girl. You just aren’t being very wise by continuing to smoke.” So the part of me with a brain knew that I was being a hypocrite, knew that I could use the defense that I wasn’t laying in a hospital bed.

Not yet.

You’re probably judging me right now. And that is fine. I have been a smoker since I was 21 years old. I put down the cigarettes when it was required to grow healthy babies. I banished the habit to outside when juvenile lungs took up residence in my home. As a healthcare professional, I can tell you that I never bought the idea that the odor of smoke on clothes was as bad as breathing second-hand smoke any more than the mere odor of marijuana makes you high. If you are allergic to smoke, I can imagine that the residue can be an irritant, but for the average person? I just could not believe it.I was content to just go outside. If I was outside when the kids were outside playing, I would move far, far away. Both my kids and those of others. I never smoked in restaurants because I don’t like to taste smoke with my food. If I was outside smoking somewhere and someone came up to sit next to me, I would ask them if it bothered them and then I would move away if they said it did. I was a conscientious smoker. I made great strides to ensure that the only person I was hurting was myself.

The problem with this is that I lost my mother to smoking-related lung disease. She probably only thought she was hurting herself, too. Now there are two little boys who will never meet their mom’s mom.

I have tried to quit more times than I can count. I can feel the changes in my body. I am a respiratory therapist, for shit’s sake. I know. I know that I am most likely to the point of irreversible disease. I knew all along that, while I could not change that, I could halt the damage in its tracks. And so I tried. Patches. Gum. Lozenges, Tapes. Wellbutrin. I even tried those Nicotrol inhalers, thinking that would be the miracle since it also replaced the physical act of smoking. I’ve tried support groups and keeping journals, all the while feeling stupid that I was having this much trouble with giving up cigarettes. Not crack. Not crystal meth. Cigarettes. A few years ago, I did have some luck with quitting. I was one month into treatment with Chantix, and in the middle of pre-med. I thought it was the medicine that was making me so queasy, so I would skip it, waiting until I had a solid meal to take it. Problem was tat I never got solid meals. My meals consisted of grabbing a granola bar between classes and grilled cheese sandwiches from the hospital cafeteria in the middle of the night on my lunch break. I stopped the medicine and picked smoking back up. And then discovered I was pregnant with Zachary.

With the exception of pregnancy-related quitting, I would always have the same reaction to lack of nicotine. I wouldn’t just get irritable. I would literally go crazy. I could be sitting with you, having a benign conversation about the weather and just burst into tears. My tolerance for anything would be so low that I would become completely dysfunctional. Once time, I got so upset that I had found a speck of missed food on a supposedly clean plate that I threw said plate at John’s head, leaving a massive knot. His response, instead of having me arrested, was to recognize what the true problem was and go and buy me a pack of cigarettes. He returned to the house with the pack and a new lighter and ordered me to smoke. For this reason, quitting scares me. I have a successful education going. I am good at my job. I have two children I love more than anything. I cannot allow myself to fall apart.

On the other hand, John’s heart cannot take exposure to any second-hand smoke at all. I need to be around for him. For the kids. I have to give it another go.

They tell you that in order to be successful, you have to want to quit for yourself. Maybe I am sick in the head, but I am more likely to quit for John and the boys than I am to quit for myself. I love them so much that I will do anything to give them what they need in life.

So nine days ago, I started Chantix again. I smoked my last cigarette almost 72 hours ago.  I have not killed anyone. I am not suicidal. I have only cried a few times, and it was soft, subdued tears instead of violent, crazy-bitch sobbing that would have taken place during other quit attempts. For the first time ever, I really feel like I can do this.

I want to document the process. I am hoping this will add some accountability, but I don’t want to turn the blog into a smoking cessation website, either. I rather like talking about whatever the hell I want on here without a real theme. Instead, I’m going to create a new tab. If you want to follow along, feel free. Maybe someone will be helped. Who knows?

But wish me luck, because I am taking this on at the same time I am taking on major lifestyle changes for John’s heart. Wish me luck.

What I Said I Would Never Do and Then Did Anyway

Kid-With-Cell-PhoneKids and cellphones. It drives me crazy. I work with someone who literally bought their two-year-old an iPhone. No, I’m not kidding. I am being completely serious. I didn’t have a cell until a couple of years ago. It just wasn’t a need of mine. When it became a need, I went and got one. But a little kid? Call me crazy, but when you are too young to be left alone for a second, when you are chauffeured around to every destination, go no places on your own, you have no need to be reachable at all hours and in any locale. And besides,  the only person who should need that type of contact with you at that age had better be a parent, and aren’t you with one of them?

Read: “No, Evan, you CANNOT have a cell phone!”

I did, however, let him have a Facebook account and email, with the password known to me and the username set as the email address, so every stinkin’ time he gets a like, a comment, a message, a friend request, I know about it. It’s a pain for me, as my phone vibrates non-stop almost, but it is necessary to keep him safe from himself and from others who prey on kids. And as a result of these other internet uses, he inherited an old smartphone of ours that no longer has service. He could still use the wi-fi functionality at home to email his new friends. (A long story that will have to be told at another time.)

So this has been going on for some time now. Fast forward to now. Well, to a couple of days ago. He is currently at his grandfather’s house for his annual summer visit, when he gets to fly planes and boat and jet-ski to his heart’s content. See evidence here:evan fliesSo this past Saturday, he calls. John answers the phone. I can hear the worry in John’s voice. He’s asking what is wrong. Then I see John roll his eyes, say, “Oh my God, talk to your mother!” as he thrusts the phone at me. Evan is completely hysterical. I can barely understand him. I get him calmed down and then it starts to become clearer: the phone he was using–my old one–finally bit the dust. He is 4 hours away. He cannot email his friends or anything, and he is going to be down there for awhile due to some health issues John is having. (Oh my GOD, that makes it sound like John has the plague–he doesn’t. You’ll understand later.) I assure him we will find a solution, hang up the phone and go to work on this little issue.

I could do any of the following:

A. An iPod Touch. It has wi-fi and messaging capabilities. Maybe Grandpa could take Evan to get one and I could reimburse him. Nope, they’re too expensive, so I can’t ask someone to do that for us.

B. Send Grandpa to get Evan a cheap pre-paid cell and reimburse him for that. Ehhh. Wouldn’t that give Evan a long-distance phone number?

C. Call our cell carrier and see if they can sell me a cheap smartphone to have shipped down there to Evan. Hmmmm. And that is when it happened.

They tell me that I have a family plan, and that if I add a line, they are giving away free iPhone 4S’s.

Shit.

And that, since we have unlimited talk and text, Evan could call and text however much he liked and it wouldn’t run up our bill.

Double Shit.

And that they have this service called Smart Limits that allows us, as his parents, to limit what he is allowed to do on his line. For example, he would only be able to make purchases with a credit card and not simply by billing to the cell bill. We could limit who he calls, who calls him, how much data he can use (the other sure-fire way for me to one day get a $800 cell bill in the mail!).

Triple Shit. Evan got a cell phone. 

An iPhone at that. Which may have been free to me, but is still a $500 phone. And I don’t think it was a bad decision. He’s starting middle school in the fall. He’s still a little awkward, but he’s blossoming socially. He’s making friends. Just before he left, he was outside playing with some friends and lost track of time because nobody wears a watch anymore and none of the kids had phones. He’s getting to the age where he will be old enough to drop off at the mall to hang with friends or be permitted to have a house key and let himself  in after school. Not quite yet, but soon. It was time.

Of course, he could completely make a fool out of me. I wired money down to him with orders that, as soon as the phone arrives, he is to take it the local AT&T store and buy an OtterBox for the damned thing. This will minimize the chance that it will be destroyed on accident. Given how badly he has begged me for this for a couple of years, it isn’t likely that he will destroy it on purpose. And the smart peeps at the phone company have limited his ability to drive me to financial ruin with the thing. So I have moved forward with calculated risk.

And besides, he is growing. How is he going to prove he can be responsible without the opportunity to prove it?

The Christmas That Never Was

blog_christmas_no-santaI have done Christmas differently each year. I know, I know. This is not going to win me any points in the Mother of the Year Race. First came the years where we didn’t have a pot to piss in, and I would have to count to know exactly how many paydays I would have before the holiday to come up with a game plan. Then came the years after my first degree, where I would end up working Christmas and Evan would never know if we were going to have Christmas early or late. Then, when Evan got old enough to make his voice be heard, I would let him choose whether he wanted Santa to come early or late. (Always, always early.) And then there was the Great Christmas Con, when Evan decided to celebrate late, went to spend actual Christmas with John’s mom, and conned her into believing that we weren’t buying him gifts, inducing her to spend even more money on him. I could go on, but you get the general idea. Christmas is always an adventure in this home.

This year, I wanted it to be different. I wanted us to have the close, cozy family Christmas. I bought the stuff to bake gingerbread men and chocolate chip cookies with Evan. Nevermind the knowledge that I cannot bake for crap. I’m smart, right? Well that was a disaster that I do not care to recap.

Regarding gifts, I got smart this year. I bought the boys’ gifts online. We were going to do the whole cookies for Santa, Christmas morning surprise thing. I even told some white lies to throw Evan off so he would be surprised that he got what he really wanted when the day came. I am smart. I am clever.

The problem is that my kids are smarter than I ever will be.

Because instead of delivering the packages midday during Evan’s last days of school before the holiday, as was supposed to happen, Fed Ex decided to knock on the door of this small-ass house in the middle of dinner. John and I recovered nicely, though. Instead of bringing the boxes in through the living and dining rooms where the kids were, he ran them around to the basement.

Then Zach wandered into the basement, following John, who was doing laundry. He found one of the small gifts, a Super Grover, his favorite Sesame Street character. John didn’t have the heart to tell him that he couldn’t have it, so Zach carried it around the house, with it still attached to its box. That is when Evan saw and, thinking it unfair that his brother got a gift early, went in search of the loot.

The moral of the story is that I returned from work one day to find that the kids had found all of their gifts and were even playing with some. The incessant begging ensued. Mom-can-I’s started. One by one, with each of the gifts, I gave in. And by the time I had the time, I had absolutely no desire to even put up the tree. No gingerbread men and milk for Santa. No Christmas morning surprises. All of it, gone. Except the turkey. John insists on cooking the bird, but I got the flu and spent Christmas unable to even hold down clear fluids. The result? Christmas dinner the day after Christmas.

You could say this holiday has been a huge failure. I’m choosing to think of it as Zach’s speech therapist described it: this is truly a Christmas we will never forget. And after all, aren’t those memories the whole point of all of it:?

 

On Laughter and Sadness, Relief and Distress

Autism_Awareness_by_thisfleshavenged

They called. After being on a waiting list since September of 2011, they called and we started the process to finally find out what is going on with Evan. It started with an appointment with a developmental pediatrician. A very long appointment. And it was so frustrating that I ended up sobbing for the second half of the 4-hour interview. How do you replay every little issue a child has had since birth, through age 11, into one appointment? And of course I totally had unrealistic expectations for the appointment. I knew how the process would work way in advance, that this was just the start, but still—maybe it is the mom in me—I clung to this appointment like our lives depended on it. It was my lifeline.

Because Evan has gotten worse. He seems to be deteriorating before our eyes. In truth, the differences between him and his peers is probably just becoming more noticeable with age. But still, this is how it seems from so…up close.

So the doc did his job. He gave me some assessments to complete. Written ones. One for ADHD and another for autism spectrum disorders, which confirmed my gut feelings all along. He doesn’t just have ADHD. There is more going on. Simple as that. But what? Turns out that Evan met as much criteria for an ASD as he did for ADHD. So referrals were made and appointments were scheduled. Speech, OT, psych, IQ evaluations over the coming months. Today…Well, today was Day 1. But first some background information.

Since we have suspected Asperger’s for Evan for some time now, I have really been paying attention. And suddenly, as we are meeting with and speaking with these experts at a major pediatric research institution, and they are asking questions about Evan. About early childhood, how he has developed, how the problems have surfaced. And everything…everything…is making sense. How, when he was little, Evan would flip over toy cars and trucks and just play with the wheels. As he got older, he did the same with his tricycle, bike….How Evan never could sleep well. I remember one time in particular that John and I had not slept in over a week, and we were so sickly-looking that Ev’s pediatrician gave him a powerful sedative for 2 nights, giving us orders to give it to him at bedtime and we were to go to sleep. All of his independence. I thought he was just really smart, and he is, but the independence at such a young age…He still has trouble with his shoelaces, yet he has been able to operate a computer since he was 3. And then there is the freak-out we get when he is tickled, played with. We found out yesterday that he feels like he has to have his feet on the ground. And he likes deep pressure. Thus the embarrassing resurrection of the outgrown clothes that are waaaaaay too small.

So his first day of evaluations came. First, the ADOS, or Autism Diagnostic Observation Schedule. A speech-language pathologist did this with him. It was 3.5 hours long, and I had no participation other than to sit in a separate room and watch on a video monitor with a set of headphones. It was so surreal to watch my baby, and while we have witnessed his behavior first-hand, there are just some things you block out. Watching him on that screen, I was able to see him how an uninterested third party might. And I saw.

I saw the little boy who barely made eye contact. I saw the mix-up of literal and implied meanings—I didn’t even realize he did this. I saw the kid who, despite a huge vocabulary and intellect to match, could not keep basic emotions separate. And then the part that literally left me gasping like the wind had been knocked out of me: she was talking to him about friends. Well, even though I hate it, I know Evan has no friends. So I am saddened to hear him describe his classmates. First the girls, then when the therapist asked him if he has any who are boys, he started to name the boys in his class. She asked him to describe the difference between classmates and friends and he could not. She asked him what made these boys his friends and he named one boy in his class and said he is his friend because he doesn’t bully him as much as the other boys. And the blood rushed to my head. My ears began to hum and tears stung my eyes. This. This is the part that hurts so badly.

So on we went. Next eval was occupational therapy. The therapist didn’t know what he was being evaluated for in order to keep an unbiased opinion. And after reading his history, she asked me about Asperger’s. And after telling her I didn’t think she would find anything other than handwriting and a couple of other fine motor issues, I was stunned. He has no coordination. He couldn’t catch or toss a ball with any accuracy whatsoever, had very little by way of dexterity, and after assessment, seems to have major sensory issues, She gave him some stiff putty to play with and he came alive, kneading it and working it with his fingers the entire time. She gave him an exercise ball to bounce on and for the first time in a long time, he looked content. He looked happy. Animated. He looked relieved.

I have been both amazed and, well, wrecked a little if I am being honest. Every little question, every little nagging thought you have as a mother…knowing something is not right, but nor being able to point it out specifically. Well, over a decade’s worth of that is coming to a conclusion, so it is like a weight has been lifted. And then there is the knowledge: will he ever have friends who appreciate all of the amazing gifts he has? Will he have a date to the prom? Goals for his future? Can we overcome this, too?

Today, I got info in the mail to get him registered with the Autism Treatment Network. That one killed a little bit. I carefully filled in his name, his city and date of birth underneath the letterhead with the dreaded A-word that can invoke terror in the hear of any parent. And I thought back to the day he was born. The hopes we have held just for him. The memories of smiles and laughter, of amazement at his ability. And I knew, suddenly. Just like that, I knew that, just like when he was a baby and we helped him through colic or reflux, or formula intolerances, just like I helped him when he had an ear infection or a scraped knee. I will help him through this. I will champion for him. He is my baby. He is still perfect.

Time Flies (Still)

So the boys had some more photos taken with a coworker of mine who is working on honing her photog skills. She has taken their photos before, and this time she got some great candid images of my babies. We met her at a gorgeous park in Cincinnati, which is a prime spot for photography, it would seem. Well, at least there were a bunch of others there that day for the same purpose. We saw baby bump photos, wedding and engagement photos, and family photos being taken. I just wanted some playful, casual shots of the boys, as they are growing up before my eyes. And as always, I see the photos and I still see the newborns they once were. Time goes so quickly, and with grad school now, I am always hustling and bustling to and from one destination or another. And I miss them so much. While I wasn’t looking, Evan turned eleven years old. Two more years with him until he is a teenager. I want to clutch them to me and beg them to slow down. In the mean time, I remind myself daily that I am doing all of this for them. At some point, so help me, I will be able to honestly say that I can give them anything they want. Anything. The best home, the best education. Opportunities that they may not have had if I had not pushed myself to get these higher degrees. But in the meantime, I keep my nose to the grindstone, cherish every tiny moment I am given with them, and count the days until I am finished.