Ah, yes, September 1 and the first day of school. I almost didn’ t make it for the event because I haven’t paid much attention to the Starbucks schedule lately. Let’s just say I’ve been distracted. Luckily for me, one of my compatriots needed to make a schedule switch. That gave me today off. It just means I’m looking at a week of closings, Wednesday, Thursday and Friday nights. Saturday I’m off. That’s a break. I usually open. If that had been the case, I could be considered legally brain dead. Instead, I’m opening Sunday. But I digress. Already. Call it adult ADHD.

By all accounts, it was an easy first-day-of-school morning. Aaron was up an hour early in anticipation of becoming a third grader. Thalia came waltzing out of her room at 6:20 a.m. this morning, now a seventh grader. Last year, I’d be up and down the stairs for a solid hour between the hours of six and seven. Her bus arrived at 7:10 a.m. She’d drag herself out of bed ten minutes before the bus arrived and be, amazingly, ready to go right on time. Aaron gets picked up at the door. I drove Thalia this morning because her busing situation is unclear. Busing issue aside, this will be the easiest week of the year for me. Starting next week, the battle will be engaged on two fronts. One battle will be with  the school system itself. The other battle will be with my charming and delightful bride. I’m like the crap in the middle, always getting squeezed. Call this a rant.

I have seen the enemy (in fact, I live with it)

The biggest battle of all will be on the home front. Beth will go into what I like to call “unrealistic achievement gear” early and stay there until the bitter end. Thalia, of course will have it the roughest of the two. In fact, she already told Thalia she expects all As. Thalia just looked at me and rolled her eyes. I returned the gesture. Thalia and I both know that’s not going to happen, and it’s not a major concern for me. Beth’s attitude, on the other hand, is a major concern for me. Why? Because Beth is already planning Thalia’s college education without actually participating at this level. How does that work? Hint: It doesn’t.  Hell, I’m just trying to deal with a seventh grader. Never the twain shall meet on this one. Let me tell you why Beth should be thrilled about what Thalia has been able to achieve so far.

Thalia, for the first time since the first grade, will not be considered a special ed student. This is a child that has overcome a language-based learning disability and dyslexia to bring home a certificate of excellence in language arts at the end of last year. (Of course, let me tell you that I saw this certificate for the first time four days ago when she cleaned out her book bag.) I also found out from her language arts teacher that Thalia’s writing a book. She spent some of her summer working on it. Thalia did not spend a lot of time in front of the television this summer, although she did keep up with CNN, the History Channel and the Discovery Channel. She spent a lot of her time on Korean and Japanese multi-player adventure gaming sites and I have to admit she’s really good. I have no idea how she got access to some of them, and I don’t want to know. But this is a far cry from where she was when she entered middle school.

Her first year in the middle school (fifth grade) she brought home an F in social studies her very first term. It was a rough transition from grammar school, and she was in one-on-one Language Arts and Math. The F was the result of a failure to mesh with her homeroom teacher, also her Social Studies teacher. Now, I’m not saying that Thalia handled that whole conflict correctly, but I’m not sure I expected her to either. I used to call her homeroom teacher that year Mrs. Switchblade because I didn’t like her much either. So, we’ll call her that here.

My feeling about Thalia and Mrs. Switchblade being a bad fit was confirmed by Thalia’s teacher from the previous year in grammar school. She thought Mrs. Switchblade was too rigid a teacher for Thalia. She was being kind on that assessment.What a difference a year (and a new teacher made). Last year, Thalia decided that social studies was her favorite subject. She did exceptionally well in it.

Why all of this isn’t enough for Beth will forever remain a mystery to me. Let’s also be quite candid here and add that Thalia is just about blind in one eye and you’d never even know it. According to the doctor at Mass Eye and Ear, Thalia has managed to compensate for that problem. She has glasses, which we can’t find at the moment, to protect her good eye. There’s another thing about Thalia that’s tough to explain in words. She’s just different thinking in many ways, and she’s one of those square-peg kids that administrators like to try to force into a round hole. Thalia’s day care teacher and I were very good friends when Thalia attended. She saw Thalia nearly every day from the time Thalia was about five months up until she went into pre-school. She once said to me, “Your child is very different. You’ll spend the majority of your time advocating for her.” I never forgot that, and I have indeed been thrust into that role.

I’m not going to go into burdensome detail here about some things that go back in time because I have yet to write narratives about my kids. Don’t want to be too repetitive. Suffice it to say that Beth and I will do battle over her need to see Thalia produce an A average. I have no such requirement. The most important column on her report card, in my opinion, is the effort column. If she’s trying, no issues. If she’s lazy, she and I will figure it out in league with her teachers.

Thalia is the kind of kid who needs to be invested in it. In other words, her teacher will say, “You know, it’s 40% of your mark. If you don’t get it in, this is the grade you’re looking at. If you get it in, you’re here.” More often than not, Thalia gets it done. In other words, I do not allow homework to become a battleground at home. There are other ways to handle it. If Beth becomes involved, it will be a battle and that is unpleasant for everyone but one person. You know how it works, Beth is largely a non-participant in parent-teacher one-on-ones, school meetings and IEP reviews. They pass around an attendance sheet and “absent” is always next to her name. Then, one day she wakes up and plays parent in this area. Pisses me off.

My discipline with Thalia is even simpler. Let’s try this: “Hey, Thalia, you don’t get your homework in and you don’ t get a Nexon game card when you want it (she always wants these).” Or, “Hey, Thalia, if you don’t bring up your marks on the next report card, I’m unplugging your Internet connection and there’ll be no gaming until you do.” That means something to her. Beth’s rant goes unheard, let alone unheeded. Thalia just turns her off.

Aaron is about to be indoctrinated into the pressure cooker

Aaron’s story is pretty amazing as well. Just before his third birthday, Aaron was given a full autism diagnosis. We were homeless at the time and I had made myself familiar with every possible angle available to me. One of those great laws was the McKinney-Vento act which allowed your children to return to their previous school in spite of homlessness. That brought Aaron to the Lynch School in Winchester, where they worked wonders with him. One thing I learned about the law was that it applied to siblings even if they had never attended that school before. Thalia was already at Lynch, which made Aaron eligible.

When I left Lynch every day, he would have to be held by his teacher to prevent him from hurting himself.  He would bang his head on the ground and just cry forever. I used to just plain fucking want to die walking down the hall towards the door hearing him call my name.  Two things kept me sane: One, it was better for him that I do this. Two, he would eventually stop and they could work with him. They did work with him and worked wonders. I was worried about moving to Amesbury, and it was unfounded. He’s improved even more here. Aaron was placed in a first-second grade multi-year class for modeling purposes. It also ensured he had the same teacher two years in a row. His teacher was amazing with him and I have no problem tell you her name is Billie McLane.

Aaron’s progress has been pretty remarkable overall. As a third grader this morning, Aaron didn’t even need me to drive him to school. That may seem like a small thing, but it’s not for Aaron. He got on the bus with no issues and he’s starting a new grade with a new teacher this morning. Luckily for Aaron, it’s Mrs. Gagnon. She was Thalia’s fourth grade teacher and the match was great. She’ll be excited she has Aaron. I’m not saying there won’t be a bit of a bumpy road for Aaron. He’ll be introverted and may not participate at the beginning until he knows his classmates. That’s a work in progress. There’s always the possibility that he’ll fall behind academically. That’s their major area of concern. Aaron is still a special ed student (in an inclusive class) with an IEP.

His problem area is reading. He has been behind from the start. However, in his final testing at the end of second grade, Aaron tested right exactly where he was supposed to be. Everyone thought that was pretty amazing. In fact, Aaron’s academic improvements in the second grade made him ineligible for summer school. I think that’ll be a problem for Aaron when he starts up. I think he’ll lose a bit of his edge. And again, the battleground here will be homework because — if it’s possible — he hates it more than his sullen sister. He’s just a bit more creative in his delivery, preferring to tell me that, “Ma,my brain is full from the school day. I can’t fit anymore stuff in here.” This year, I’ll end up being the buffer for both of them. What freakin’ fun.

Go ahead, ask Aaron the next time you see him what his favorite subjects are.  I guarantee you the answer will be gym and recess. Ask him what he likes the least about school and he’ll tell you, “The learning part.” Oh boy.

Of course, do I think that Aaron will be put under as much pressure as Thalia by his other mom? Not even. I think he gets a huge ‘bye’ from her on most stuff. He’s the chosen one. Do I understand the reason for that? Well, he’s a pretty special little guy. Billie McLane used to tell me last year that he was a beautiful little boy. He’s very gentle and sweet. And he’s pretty funny and engaging for a kid that’s supposed to be autistic. But Thalia is pretty neat in her own right. She’s a thinker who likes to ask questions, which really aggravates Beth. I don’t know the reason for that either. I prefer to just answer Thalia’s questions straight out or show her where to find the answers if I think she’ll get a better explanation somewhere other than me.

I was just looking out my back door and it’s beautiful up here this morning. Funny thing is, I just don’t want to be here. I think I’ll take a walk to Woodsom Farm before the kids get back from school. Clear my head.

Beth remained in the hospital a little longer than usual for a pregnancy simply because the doctors wanted to be sure that her blood pressure returned to normal (she had always had excellent blood pressure), and that there was no evidence that she had developed diabetes. We had lots of visitors over those few days. Everyone came to see Thalia,  officially known in my family as the Thanksgiving Baby. They finally released Beth and Thalia, under the orders that Beth was to take it easy for a while so that her body could recover, and that a visiting nurse would monitor her at home for a few weeks. That meant that I would have most of the baby duty. It wasn’t a problem because I was out on family leave for eight weeks.

We had already been discussing pediatricians and had decided to choose one near home rather than traveling to Boston. I do not really remember how I found Dr. Paula Heimberg, I only know I’m glad I did. To this day, she’s not only Thalia and Aaron’s pediatrician, we consider her a family friend. She works out of Garden City Pediatrics in Beverly. She’s the embodiment of how a doctor should be. I called her, and she scheduled an appointment with us before the baby was born. Because Beth was bedridden, I went alone and she spent an hour talking to me. We decided that she was the right choice for us, and were very happy to have her on board before the delivery.

Life with baby begins

Thalia’s room was all ready when we got home, and it was pretty cool. The room was bright and sunny, and the crib was decked out in colorful bedding. There were great mobiles hanging in her room. We had purchased a combination changing table/bureau and had moved a small pull out sofa into the room because Beth was going to breastfeed and I wanted her to have a comfortable spot. Of course, there was a small TV too since we’d be spending a significant amount of time there, particularly in the wee hours of the morning when Thalia Assuras was on.

Okay, I don’t want to say that Beth was OCD about Thalia, but she was. Thalia spent the first week in our room, but we were concerned about our two cats being able to jump into the bassinette so we moved her to her room because we had a cat tent over the crib. To say that they were curious was an understatement, but Ling Ling, our Maine Coon, was the most curious. She was only six months old when Thalia was born and had been the center of attention up to this point. In fact, Ling Ling took up residence at the very top of the cat tent so that she could see Thalia. We called her “watch kitty.”  Oh, yeah, did I mention that there was a pretty amazing camera attached to Thalia’s crib? Still, that wasn’t enough for Bethie. No sir!

We moved into the room with Thalia, spending nights on her floor in our sleeping bags. This didn’t go on for just a couple of weeks. It went on for just about three months. Beth sometimes reads more than she should. This time around, she got herself all wound up over SIDS. Now, I don’t want you to think I’m cavalier about SIDS. I am not. It is a real problem for newborns, and it was a frightening prospect for me as well because nobody really knew why it happened. However, being shaken awake every three hours to check if Thalia was still breathing took a bit of a toll over three months!

We had also decided that Thalia would not go into daycare until she turned six months. There was no real deep reason for this; Beth simply wanted the opportunity to bond with Thalia. So did I. However, we were both big believers that socialization was important. (We checked out many daycare settings, but settled on The Children’s Workshop in Waltham because it was close to where I worked.) I had met several mothers who were dead set against daycare, but in my mind they didn’t have very good reasons for their attitude. Basically, these women didn’t want their children to pick up germs and get sick. I wasn’t worried about germs and illness. Unfortunately, they are facts of life with children. Sooner or later, Thalia was going to be going to school and it was going to happen. My attitude was that the earlier the children are exposed to them, the better their defenses down the road when they do get to school.

I returned to work at Millipore after eight weeks, leaving Beth and Thalia alone during the day. Because Millipore had ‘flex’ hours, I was able  to change my hours so that I went in earlier than usual and returned home earlier than I normally would. This worked out really well. Thalia had lost interest in breast feeding after three or four months, and I took early morning feeding duty. I would sit in Thalia’s room on the sofa watching World News Now while I fed her.  Then, she’d immediately fall back to sleep and I’d leave for work around 4:30 a.m. Beth would handle the days and I took over when I came home, giving Beth an opportunity to nap. Beth still seemed to be suffering fatigue from the pregnancy. One day during my first week back to work, I came home to a very wierd scene.

I walked in the door and heard what I thought were pots and pans banging together. I figured something was going on in the kitchen (even though Beth was never really the cook in the family), but I was surprised to hear the banging coming from up in Thalia’s room. I walked in the door to find Thalia laying on her back on the changing table while Beth banged two pans above her head. I had to ask. “What the fuck are you doing?” Beth picked her head up with an utter look of terror on her face. “I’m trying to see if she’s deaf, Deb. I think she’s deaf.” I looked at her in amazement. “Beth, if she wasn’t deaf before you started this, she could very well be now!” I knew I had my work cut out for me. Bringing up baby was going to be a challenge.

Plenty of clouds on the horizon

I had promised Beth that she could return to school when Thalia was a few months old. She wanted to update her science degrees, so she enrolled in a cell biology class at the Harvard School of Public Health. It was an evening class, so I was on baby duty anyway. I remember those nights. Thalia and I would lay together on the bed and I’d place her on my stomach to sleep while I watched television. It was great. I’d talk to her and she’d smile like she knew what the hell I was saying. One day when I returned from work and Beth was getting ready for her class, she confessed that she had fallen down the three stairs to the landing while holding Thalia.  She was fine and the baby was fine. Beth had managed to keep hold of Thalia even while falling. She had landed on her back with the baby perfectly positioned on her stomach. We made jokes about what  klutz she was, but we would soon be in for a rude surprise.

A few weeks later, Beth came home from school and told me that she had difficulty completing her sentences in class because she seemed to run out of breath. She wasn’t feeling well and was still having problems with fatigue. Given her ill health during the pregnancy, I thought it would be prudent to check it out. We called her primary care doctor and made an appointment. We went in, she had an examination that included an EKG right in the office and things looked normal, at least from a cardiac perspective. We were relieved, and we returned to our lives.

However, the symptoms continued and Beth was feeling weaker and weaker. She didn’t even have the stamina to care for Thalia during the day anymore. So, we enrolled Thalia in daycare at The Children’s Workshop in Waltham two months earlier than we had originally planned. We remained insistent about Beth’s not feeling well and saw the doctor yet again. Nothing was resolved. According to her, Beth was fine and the exhaustion would eventually abate. Of course, part of the problem was the stigma of mental illness. Frankly, this particular primary care doctor had known Beth for many years. She knew of her past and her issues in the present. I could see what was happening: Because of these issues and because the illness is not immediately apparent, her doctor assumed the illness was “in her head.” The one thing I know for certain about Beth is that she is not a hypochondriac. She knows when her body is telling her something, and she absolutely knows and admits when something is “in her head.” I became adamant about looking further. She had not been back to school because the smallest physical effort on her part was exhausting her. On the third visit, Beth’s doctor scheduled an echocardiogram at the Beth Israel Hospital. Of course, her doctor was confident this would prove she was just fine.

The other shoe drops

Within a few days, we got the call. Beth’s doctor was stunned. The result of the echocardiogram was not good, and she had scheduled an appointment for us at Beth Israel with a Doctor Joe Cannon. She had given us some basic information, but I truly believe she knew she had blown it and she was just too upset to tell us how serious it was. Dr. Cannon, on the other hand, had no problem doing that. While he didn’t have much in the way of bedside manner, he told us straight out that Beth appeared to have viral cardiomyopathy and congestive heart failure (CHF). Her ejection fraction was at 15 (normal is in the 55-65 range), accounting for her fatigue and shortness of breath. The prognosis was not good, and Dr. Cannon offered her the heart transplant list.

This news was devastating. We had a baby at home that was less than six months old, and now we had a very uncertain future ahead of us. I was going to have to balance taking care of Thalia with taking care of Beth. I admit I had no fucking idea how I was going to get through it. I only knew that Beth was emotionally falling apart over it, and that I had to let that happen as hard as it was for me to watch. I would have been the same way had it been me. The one thing in Beth’s favor is that she’s a fighter. That’s how she managed to survive her ugly and violent home life. After the appropriate amount of grieving, and after deciding that Beth and Dr. Cannon were not a good fit (mostly because he was a pompous asshole), we decided to get a second opinion.