Scribblings

Missing T

This week I thought I'd have plenty of time to finish sorting out and then posting the hundreds of pictures TB and I took on vacation. Why? Little T is spending the week with his daddy and family on vacation! I've been going through pictures but not really doing very much .... we really miss the little guy!

Hope you're having a wonderful time, Little T, and see you soon!

Now...back to those pictures...

In An Emergency...

I'm worried about our little T. Linda took him to the doctor yesterday because he was wheezing and his breathing was labored. It turns out one of his tubes fell out and that ear became infected. The scarier part was that they did a pulse-ox test and his O2 level was only 90%. They had to do a nebulizing treatent. Up until that point, Tomas was very cooperative says Linda but when the nurse came at him with a mask, he began to fight and scream.

It got so bad, Linda says, she told the nurse to stop and leave. Linda held the mask by Tomas's nose and the nurse kept haranging her, saying you're not doing it right! Linda felt that at least this way, Tomas was getting some benefit although the nurse was saying you're wasting the medicine. Okay, now, by then Linda had told the nurse that T is on the autistic spectrum. Aren't pediatric nurses supposed to know what to do when they have a special needs child? Surely there is another way to do this. Tomas has never allowed anything on his head or face, no hats, fake noses or what have you.

Anyway, after 3 hours, they were finally able to come home. By then T's pulse-ox was up to 93%, still low. Linda told me they would have to return in the morning (this morning). So they've been gone almost 3 hours again and I'm wondering what's happening. Will they have to send T to the ER? I'm very worried.

Some Days Are Very Hard

Some days are harder than others when I'm taking care of Tomas. I knew this morning would be rough because he's had a spring break and so he'd be transitioning back into a schedule of eat, get dressed, get on the bus, go to school after more than a week off. The Nor'easter we had yesterday closed the schools and threw everyone off too. I'm not even sure T understood why he wasn't going to school last week.

Anyway, everything was fine until it was time to get dressed. Tomas wanted me to raise and lower the blinds in my bedroom. This is a game we've played for several months now with variations on the language: the blinds go up, the blinds go down, open the blinds, close the blinds, pull the cord, etc. He was still in his jammies and needed to have a diaper change. Again, I'm not sure how much of the behavior is related to PDD and how much is related to just wanting to get his own way. I can't think of any 2 or 3 year old that responds well to "not now" or "later".

Tomas took it very badly. He would not allow me to change him and when he does not want something to happen, it usually can't because he fights like his life was in danger. I stayed calm and said we couldn't play until he got dressed. It takes him a while to process things and so I let him alone for about 10 minutes before broaching again "Let's get dressed." I added that when he got dressed, we would be able to open and close the blinds. He didn't like it.

Now, Tomas slept in this morning. Normally he's up and around by 6:45, just when Linda leaves for work. Today he'd slept until 7:30 so I was working with less time than usual to get him ready. On the other days, he'd be ready so fast we'd have an hour to kill before the bus came. It was still rotten outside so I couldn't use "let's go for a walk" to coax him.

I thought, okay, well, let's at least get him out of my room so he won't be tempted by the blinds. He did not want to go and kicked me several times as I carried him into the hall. I closed the door and right away he began fighting me to re-open it. "Tomas, stop" and "we can go back in when you get dressed" didn't penetrate. Heidi heard the commotion and came down to help.

He's learned to open the door by turning the knob and so he was trying to twist my hand and fingers so that he could get to the knob. I had Heidi go into my room and lock the door from the inside. That stopped that skirmish but then came the diaper battle which left my nerves raw and rattled. He's got to have one particular type of diaper and if it's not there he becomes very angry. Of course, the diaper he wanted wasn't there. He didn't want the diaper or the pants...I was thinking I ought to just send him in his PJs and dirty diaper but I just couldn't. He'd been in that thing all night and needed to be changed.

I called Kennan to see if he had some good ideas to calm T and it was right about then everything seemed to go through the baby's brain. It was like flipping a light switch on. All of a sudden, he was all smiles, cooperating with the diaper change, trying to put on his pants...???? Is it the processing time? Was it that I called his dad? I am not sure he was even aware I'd called.

Well, I won't go on and on about it except to say that I really need to learn how to cope with all of these behaviors. I am okay with sending him to school in his PJs if he won't get dressed but not in a dirty diaper. How do you get through to a child with the issues Tomas has? That's what I need to know...

An Abnormality

I really like the plastic surgeon who did my breast reduction surgery in 2005. Not only did he have a great bedside manner and was patient and willing to answer questions, he also believed that the more a patient knew the better of he or she would be. He would anticipate different "problems" that might come up and explain them to me so that if they happened, I didn't get all freaked out. During the last visit when he pronounced me healed and well, he said I should wait a year to get another mammogram. When I got it, he said, I shouldn't be surprised if the doctors found a lot of stuff they didn't like. Most likely it would be caused by scar tissue but it's always better to be safe than sorry. They'll want you to go for a needle biopsy. So go for it but don't let it scare you, he said.

And so I went for my mammogram and wasn't terribly surprised when, the very next day, I got a call from the doctor about an "abnormality" in my right breast--calcium deposits I should have biopsied. Okay, no big deal. I saw the breast surgeon today and she did an ultrasound. There is a cyst and some other thing or other in my right breast. I got a clear view of it. I still wasn't too worried, until the doctor said that if it was just a matter of scar tissue or healing then it would be bilateral.

Huh? She asked if I'd had any problems after the surgery and I didn't think I had. Of course, I do remember that the first surgeon had raised a couple of issues but it was so gently done that I didn't think a thing of it. Had I maybe had an infection that caused this extra weird stuff in my breast? I can't remember.

So next Wednesday I need to go back and have the needle biopsy. TB had taken the afternoon off and had come with me on this appointment and I was glad he was there. It's not so much that I was nervous or scared, it's just so much better not to be alone. I remember having a Pap test come back with abnormal cells right after Rich died and I had to go for further testing alone and it really sucked.

Okay, anyway, the doctor asked if we had any questions and neither of us did. Maybe that surprised her. My feeling is, why ask a bunch of questions now before I know what I'm dealing with? Why freak myself out over maybe nothing? And if it's something, I can't change it anyway. So I'll save all my questions for next week and for when the results come back. Meantime, I just pray.

Humanizing Anxiety Disorders

At 16, I had my first memorable panic attack. What was I doing? Just watching Ben Hur with my family. It's a very emotional story about a wealthy Jewish man, Judah Ben-Hur, who thought he could be friends with a childhood friend who'd become a Roman soldier. Well, it turns out he couldn't. This soldier did his best to destroy Judah's whole family -- and he couldn't. The movie was subtitled A Tale of the Christ but Jesus only put in an appearance a couple of times. This was more like the affect Jesus had on Ben-Hur's family. Okay, well, but that has nothing to do with what happened to me. I think.

As I was watching the movie, all of a sudden the room began spinning. My heart started pounding and it seemed like there was a loud whooshing rushing sound in my ears. I almost felt like I was outside myself, watching myself, thinking that I was going to die or something awful was going to happen if I didn't get up and move right now and so I jumped up and rushed into the kitchen. I got myself a drink of water. It was dark in the kitchen and I drank the water slowly, waiting for my pounding heart to slow down.

When I went back to the living room, no one noticed anything and I was relieved. If I was going crazy, I didn't want anyone to know--especially not my parents!

It kept happenening, though, and I wondered how long it would be before everyone found out and I totally lost my mind. I'd get locked up in some institution, for sure! I'd be sitting in class listening to a lecture and wham! "It" would happen to me again. "It" would sneak up and take my by surprise and I never knew when or why. All I knew was that I was sure something terrible was going to happen to me. "It" would last for minutes or hours and the feelings of dread and fear were just pure agony. And no one knew what was happening to me.

I guess I mask well.

I did try to find out what "it" was by trying to explain "it" to my psychology teacher. My words were barely adequate to describe what I was feeling. She looked at me sympathetically and said, "don't worry about it. It's an identity crisis. We all go through it."

So I did feel better about that. It wasn't just me. When I was eventually able to confide in my best friend though, she looked at me with a sort of horrified expression. "Maybe you should see a doctor," she suggested. "It" had never ever happened to her. That scared me enough to keep my mouth shut and suffer in silence for the next few years.

When I did go to get help, I was scared by what the therapists were telling me. They used words like dissociation and fugue to describe what was happening to me. My gosh, did I have multiple personalities?

I read up on it and realized that those terms didn't exactly fit. I mean, I could remember everything that happened when "it" would come upon me. It's just that it seemed like I was watching it happen to someone else. I wasn't becoming anyone else and I sure did remember every agonizing second! I referred to "them" as "my spells". Therapists would give my anti-anxiety and antidepressant medications for about a year until "my spells" would go away and then I'd go off the medication.

I'd be fine for a year, maybe up to 5 years but then "my spells" always came back to haunt me. In 1980, I finally found out what they were really called: panic attacks. Over the years, I've learned that I do not cause them to happen to myself, that my inability to control them doesn't indicate a weakness of will, and I'm most definitely not crazy. For many years, there's been a stigma to having any mental illness or disorder.

Once a doctor compared disorders like panic to diabetes I finally "got" it. It's something biologically and has nothing to do with my character at all.

Now, here is this article:

The Mystery Behind Debilitating Phobias

NEW YORK, March 4, 2007
--------------------------------------------------------------------------------
(CBS) David Hoberman is obsessive-compulsive and has more phobias than you can count.

"I always go to the right of anything," he told Sunday Morning correspondent Martha Teichner. "I will not go under ladders. I don't like to fly."

From the very first episode, Monk, USA cable's star detective, was meant to be the walking definition of anxiety disorder — but funny. The back-story is that Monk and Hoberman, the show's creator, have a lot in common.

For the 40 million Americans who have an anxiety disorder, fears from ailuraphobia (a terror of cats) to aphenphosmphobia (dread of being touched) are not just funny-sounding crossword solutions, as actor Tony Shalhoub discovered.

"People's lives can be, you know, shattered," he said. "I realized we really have to tread lightly here, because it's a serious problem."

Jerilyn Ross, who runs the Anxiety Disorders Association of America, said that people who suffer from obsessive compulsive disorder are being sent the wrong signals about what they should fear.

"Something is telling your body that there's danger, but there isn't any danger, and so what happens is the person is totally aware that this is irrational," Ross said. "Even people with the same, exact anxiety disorder can have very different symptoms."

Jennifer Reines was 15 and at a party when her first panic attack came out of nowhere. Suddenly, her body felt very hot and the room began to spin.

"I felt like I was having a heart attack," she said. "It was probably the most terrifying experience in my life, and then after that I started to get them every single night before I went to bed."

Stephanie McKee has a fear of elevators and has been in therapy for years. She can remember walking up 19 flights of stairs rather than taking an elevator.

Emily Ford was afraid of talking in public. It got so bad that at one point she eight months living by herself in a cabin with no electricity in the Vermont woods.

"I'd sweat," she said. "I'd just be terrified that I was just gonna say something wrong or foolish and I couldn't talk, so I just wouldn't go out."

All three of these young women have been struggling to overcome what they consider the living hell of their anxiety disorders at the treatment center Ross runs outside Washington, D.C.

"A lot of people think that, 'Oh, you're not really sick,' or you know, 'It's just in your head and you can just get over it,'" Reines said. "But it is a disease."

Scientists have found that there is usually a genetic predisposition to anxiety disorders and they can be triggered by a physical or emotional trauma. Caffeine can even set off the accompanying panic attacks. Twice as many women have anxiety disorders as men, and sufferers can't turn their fears off because their brains function abnormally.

Dean of the Mount Sinai Medical School in New York City, Psychiatrist Dennis Charney studies anxiety disorders. He said the amygdala, the part of the brain that registers fear, seems to be overactive in the brain of a person who suffers from anxiety disorder. The cerebral cortex, the part of the brain that tells you to calm down, appears to be under-active.

"For the patient, many times it's gratifying to know that it's not a weakness, that this is a brain disorder that scientists are learning more about every day, so we can develop better treatment," Charney said.

Phobias, like the fear of heights James Stewart experiences in "Vertigo," are the most common of the many anxiety disorders. In "The Aviator," Leonardo DiCaprio plays reclusive billionaire Howard Hughes, who had among other things a germ phobia. Hollywood seems to love fictional anxiety disorders — remember Jack Nicholson in "As Good as It Gets?"

But real performers get them as well. Donny Osmond and Barbra Streisand both have suffered from social anxiety disorder, which led to debilitating stage fright. Streisand didn't perform in public for years.

Because of 9/11 and the Iraq war it would be hard not to have heard of post traumatic stress disorder.

Composer Allen Shawn suffers from agoraphobia — a fear of being unable to escape, and a fear of being anywhere outside his personal safety zones, including Bennington College in Vermont, where he teaches. Cars, elevators, airplanes, open spaces and closed spaces can all frighten him.

"I have turned my car around many, many, many times," he said. "I'll literally have the feeling, you know, I don't deserve to live. It's a terrible, terrible feeling."

He called the memoir he's just written "Wish I Could Be There." His father, William Shawn, the longtime editor of "The New Yorker" magazine, had multiple phobias and the magazine was his safety zone.

"The New Yorker made it possible for him to engage with everything and with all kinds of people, without you know, going to Mt. Everest," Shawn said.

Shawn believes that his phobias were triggered by the institutionalization of his twin sister Mary who was autistic. He said he internalized the shock of what he saw as a banishment of his sister. His feelings were then compounded by the fact that his family never discussed what happened.

"We didn't process it as a catastrophe," he said.

Shawn believes years of treatment, medication and psychotherapy have helped him battle his fears and to accept that his achievements, even his music, may be a response to them.

"In music I can actually go down the lonely wooded road and not, you know, bolt from it and turn the car around," he said.

Monk, the TV detective, may also benefit from his phobias. Monk has become the stand-in for millions of Americans, who want people to realize that for them, just getting through a day can be an act of courage.

"The crime solving is related to his obsession with orderliness," Shalhoub said. "I just focus on what's off."

"The fact that Monk is so brilliant, and the fact that at the end of the episode he is able to overcome his issues, to solve the murder, is heroic," Hoberman said.

What I like is that a character like Monk puts a sympathetic, human face on a sometimes disabling disorder.

Fog of Confusion 2

One reason I had to make another entry was to get rid of that second explorer page. I was having too much trouble trying to go back and forth. I have only just figured out moving from tab to tab on a single page--which I really like now. Anyway, the other article on fibro fog was on the Arthritis Foundation website and I found it to be helpful and hopeful.

Clearing the Fog

Excerpted from Good Living with Fibromyalgia Workbook.

Many people with fibromyalgia experience unclear thinking or cognitive dysfunction. They become forgetful, lose their train of thought, forget words or mix them up. This is what is popularly called fibro fog. There's no known cause for it, and the only treatment for it is following some basic memory and communication tips.

Below are some common-sense pointers that can help you clear the fog.

Repeat yourself. Repeat things to yourself over and over again. Repetition will keep thoughts fresh in your mind.

Write it down. Whether you write in a calendar, in a notebook or on sticky notes, if you're afraid you won't remember something, putting pen to paper can help.

Pick your best time. If there is something you need to do that requires concentration and memory, such as balancing your checkbook or following a recipe, pick your best time to do it. Many people with fibromyalgia say they perform best early in the day.

Get treated. Depression, pain and sleep deprivation can influence your ability to concentrate and remember. Getting your medical problems treated may indirectly help your memory.

Engage yourself. Reading a book, seeing a play, or working a complex crossword or jigsaw puzzle can stimulate your brain and your memory.

Stay active. Physical activity, in moderation, can increase your energy and help lift your fibro fog. Speak to your doctor or physical therapist about an exercise program that is right for you.

Explain yourself. Explain your memory difficulties to family members and close friends. Memory problems often result from stress. Getting a little understanding from the ones you love may help.

Keep it quiet. A radio blasting from the next room, a TV competing for your attention, or background conversation can distract your attention from the task at hand. If possible, move to a quiet place and minimize distractions when you are trying to remember.

Go slowly. Sometimes memory problems can result from trying to do too much in too short a period of time. Break up tasks, and don't take on more than you can handle at once. Stress and fatigue will only make the situation worse.

Some of these I do already--I know I focus better in the mornings. I read and do puzzles. Other things I need to start doing.

And here's the lyrics for "Ball of Confusion" while I'm at it. I always did like this song.

Fog of Confusion: That's What My Mind Is Today

My title is a take-off of the Temptations song "Ball of Confusion" but that's not what the post is about. I was looking for information on the ball of confusion from an episode of Sponge Bob. You flip the switch on and immediately all intelligence is vacuumed out of your brain and you stand with with a vacant expression, drooling all over yourself. I feel like that many days, like everything's drained out and I can't put two thoughts together, can't seem to do the simplest task (like heat up an already cooked pork roast), and just generally feel like a sack of jello. Most of the time I get really mad at myself when this happens, which does absolutely nothing to help.

What did help was doing a google search of brain fog, all in fun, and coming up with some useful information. Now, here is the problem I'm confronting at this very moment in time: where did I put all that information? I installed Explorer 7 not long ago and it's great because of the tabbing ... except ... if I click on one of my toolbar icons, a whole nex Explorer page opens up. That's what my problem is right now. I have two explorer pages open and trying to process and find all the information I want for this post is sizzling my brain.

On one explorer page, I have tabs for Stumbleupon.com (which looks really interesting!), the lyrics to the Temps' song, my entry and an article called "FIBROMYALGIA AND BRAIN FOG OR FIBRO FOG". However, I remembered also finding an article from the arthritis foundation about fibromyalgia fog. Where did it go? No tabs...had I closed it by accident? And then I realize there is yet another explorer page open. That page opened because I clicked an icon for our photo gallery. And on that page is the tab for the other article.

I am totally blown away. I sit staring at the screen wondering what to do next. I feel a vacuous expression coming over my face. Next I'll start drooling. But wait! This second page has some really helpful information so that I can try to cope with what's happening.

Here is the first article:

Fibromyalgia & Brain Fog or Fibro Fog

Brain fog aka fibro fog is a commonly reported symptom of fibromyalgia. Fibromyalgia patients often describe multiple sensations of fatigue and listlessness combined with transitory states of confusion, poor attention and concentration, and short-term memory loss. This fibro fog tends to exacerbate the deficits in daily functioning that a fibromyalgia sufferer must deal with.

What causes fibro fog? There's no conclusive origin for this symptom of FMS, nor an explanation as to why it exists in varying degrees for different fibromyalgia patients. Sleep deprivation and significant difficulty in achieving and/or maintaining deep level sleep, however, may very well point to the answer.

It is at the deeper levels of sleep (delta wave sleep) that a person's mind conducts its internal "housekeeping". During this phase of sleep, newly acquired information is assimilated and integrated. The inability to get enough restorative deep-level sleep may have an impairing effect on an individual's ability to recall information or operate at a normal level of mental efficiency.

The thing about sleep makes a lot of sense. I didn't sleep well last night and was up really early so that Heidi could go on a field trip to Mt. Laurel. She still has a driver's permit and so I needed to go with her on the drive. Anyway, after I got back home I felt increasingly sleepy so I took a long nap. Instead of feeling refreshed when I woke up, I felt drugged and confused. Then the fog descended.

Next article: Dealing with fog

A Good Laugh

That's exactly what I did not have when I first read this article a couple of days ago. What I thought was something along the lines of us being doomed or destined or fated for total disaster--no freedom of choice for me here, I didn't vote for this man and we'll be at war again before we can get him out.

By the way, I'll probably be posting a few times about fate, destiny and free will for what will become obvious reasons.

Anyway, today I go to read a fave of mine, Genuine Blog and he's quoting from a friend's blog and I got a real laugh out of it! The friend's blog is called "a href="http://thezeroboss.com/2007/02/14/cmon-baby-finish-killing-what-you-started/" target="_blank">The Zero Boss. I'm going to do the same thing Genuine did and nick the post:

C’mon, Baby, Finish Killing What You Started Posted by The Zero Boss - February 14, 2007 @ 6:51 pm

Um…have we all forgotten what happened the last time we let this man interpret intelligence data? Forget the Federal Marriage Amendment - there oughtta be an amendment specifying that, before starting a new war, the Commander in Chief should finish the previous one. You know, kind of like not being able to eat your pudding until you’ve eaten all your meat.

Mr. Bush already made that mistake once--setting Osama aside to invade Iraq. Now that's the ticket! No starting new battles before the old ones are finished!

First ride on the school bus!

Today was another special morning for Tomas! Yesterday he met his school bus driver and we talked about how he'd start going to and from school on the bus. He seemed really excited about it yesterday.

This morning, right on time, here comes the bus.

Tomas was totally delighted. I started taking pictures.

Linda was working a later shift today and so she was able to walk T to the bus. It worked out great because this way I could take pictures!

That came to an end when T realized he was actually supposed to get on the bus today. "Uh uh," he said. I helped Linda get Tomas buckled into his seat. He was NOT a happy little guy anymore but I'm happy to say that his bus driver called and said as soon as we were out of sight, he was fine. Also, his teacher called and let Linda know that he was all smiles when he got off the bus. Whew!!!!!

Since June Part III

Once we had a diagnosis for Tomas, we could get him registered into a full day preschool program through the school district. That seems a lot, doesn't it, for such a little guy? Well, the thing is that T needs constant stimulation speechwise and the school has the professionals to do it. During the day, he'd be interacting not only with his teachers but also with his classmates and he'd have speech therapy and occupational therapy too.

Meanwhile, Nancy was coming to our house twice a week throughout December and into the first or second week of January. A speech therapist was coming twice a month too. I enjoyed their visits about as much as Tomas did, I think, because I picked up a lot of good tips and advice. My throat was so dry at the end of a day of talking I'd want to practically guzzle a gallon of water.

In December, Kennan came back into Tomas's life. TB and I learned, to our great shame, that we weren't given the entire truth and that Kennan really wasn't the bad guy he was made out to be. I'm not saying he is perfect, no one is, but a lot of the stuff we were told just weren't true. I was really happy when Kennan and his mom came to the house to pick up Tomas. I was able to sit down and talk with them like I hadn't before but always wanted to. Since then, Kennan's been a frequent presence--especially when the teachers were here. He was also very helpful to us getting Tomas registered in time for his 3rd birthday.

Now Tomas is in a preschool about 10 minutes from our house. He started going on his birthday, February 1, and is adjusting to it just great. The teachers there are wonderful and there are five other children. He seems to be getting along with them very well. Although the kids don’t seem to speak to each other much, all five of these children talk to the adults and they speak quite well. When I went to visit, it was like being in a regular preschool room during circle time. Tomas will get individualized attention, speech therapy 2 times a week, occupational therapy and whatever else he needs.

When he started school, he was saying “yeah”, “hey”, “ha”, “aha”, “oho” and a variation of Heidi’s name. He was also making syllabic sounds in a rhythmic pattern, as if speaking in a conversation. I notice he’s been using his voice more and more. I am so happy!

There were some days when I didn’t know how I’d get through an entire day; I would be so exhausted from talking, crawling around on the floor, and playing with the little guy. I would go from 8:30 in the morning (around when his mom would leave for work) until 2:30 almost non-stop. By then Heidi or Kristin would be around to help and I would virtually collapse for an hour. Sometimes the little guy would sleep and that would be a big help so I could catch a breather. If he didn’t, though, the hours between 4 and 7:30 (when his mom would get home) would stretch out like a long road of dry highway. My throat would be dry and sore and my joints would ache. I’d wonder how long I could keep this up.

I look back now and you know what? It’s almost like a distant memory. It was worth it, every ache, every stab of pain in a muscle or joint, every rasping dry throat from all the talking. The little guy is doing great, he’s going to do so much better and it was worth every single moment!!!!

All Those Tests & Procedures...

When the team came from the early intervention program, they guessed that one reason Tomas wasn't talking was because he'd had so many ear infections he probably hadn't heard speech normally in a long time. That seemed plausible and that's what I suspected at first. I also thought that all the trauma of his early months might be having an affect on him.

I don't want to get into issues that will cause more hard feelings so I'm going to leave out the whys of some stuff and just say that T didn't get to his post-op appointment when it was originally scheduled. TB and I made an appointment with the surgeon in August. Poor Tomas--as soon as we got in the door, he put his hands over his ears and was very anxious. I can understand why! Lots of times he'd go to the doctor with an ear infection and he'd be in pain so that couldn't be fun! Also, his eardrum ruptured in May because of an infection and the doctor at the ER had to cauterize it--that must have been an awful experience too.

Happily, the surgeon looked at Tomas's ears and said they were fine, the tubes were still in place and there was no fluid. When we explained that Tomas wasn't talking, he thought it would be best to test the little guy's hearing. We scheduled another appointment but it didn't work out. Tomas didn't want to have anything to do with the booth and hadn't begun pointing to body parts (like eyes, ears, nose, mouth) yet and so the doctor said we'd have to take him to a pediatric audiologist.

TB and I took him twice. The first time, the audiologist was able to determine through a tympanic test that everything seemed to be working in the outer ear and we were happy to hear that. When we went into the booth, though, Tomas became very anxious. He cried and fought to get out, calming down when the audiologist brought in toys. The thing was, the little guy put on his blinders again and wouldn't respond to sounds. He'd look around sometimes when the audiologist talked to him. Then he began to hide his face. The audiologist suggested we wait 2 weeks and try again. Sometimes, he explained, the child's anxiety level goes down when he knows what to expect and then they're more successful...

Except that they weren't. If anything, the audiologist got less information from Tomas than before. His gut feeling, he told us, is that Tomas could hear but he couldn't document that based on the inconsistent responses. What's next? I asked. The audiologist said the only thing left would be an automatic brain stem response. Tomas would have to be anesthesized, there would be an IV involved...and I just shuddered. No way, I thought. I was convinced that Tomas could hear, too, but I didn't think he should be subjected to trauma like that.

After that second test, I called the early intervention program back and told the director what happened. I expressed my worry that Tomas had some autistic characteristics. She was a little taken aback by that but she said it was possible and the next step should be to have him evaluated by a pediatric psychologist or neurologist. She gave me a list of names and numbers.

Every single hospital program I called had a long waiting list for an initial appointment. The shortest was 7 months and the longest 18. I couldn't believe it! I called the audiologist and he gave me the name of a psychologist who'd been affiliated with Children's Hospital in Philadelphia (CHOP) but was now in private practive. Ah, much better luck there! I got an appointment for November. The one down side was that the practice did not accept any insurance. We'd have to pay $1200 in cash up front and hope to be reimbursed later. Linda had just started a new job and couldn't take time off and so Heidi and I drove T to Pennsylvania for the appointment.

Wow, was that ever an experience! Tomas was a happy little guy on the trip, had no problem going into the office and began playing with toys. The psychologist, a very kind and knowledgeable woman, talked to me for about a half hour and then I brought Tomas in. He carried in a little playhouse and readily sat down at the little table across from the doctor. He even smiled at her and made eye contact. Things went well until she took the house away and put the first test task (a picture book) on the table. He had a total meltdown and threw the book across the room. I got him calmed down and he did come back to the table but he absolutely refused to do any language tasks. Anytime the psychologist showed him a picture or tried to use the flip book, he pitched a gigantic fit! Puzzles were a different matter. He loves puzzles and did them quite readily. He even strung beads on a string, something I'd not seen him try before.

The psychologist said to me, I don't think he's autistic. He makes good eye contact, interacts with us, and seeks out our approval for tasks completed. Her theory was that something was wrong with his hearing. I told her about the failed audiological exams and she strongly urged me to get him scheduled for that automatic brain stem response. She didn't feel comfortable making a diagnosis until she knew the results of that test because the services he qualified for would be approached in such a different manner if he was hard of hearing. I asked, what if his hearing is normal? She said she didn't think that would be the case but if so, T's delays might be emotionally based.

We got an appointment for this ABR test at CHOP for the day before Thanksgiving! That was a total nightmare. This time, Linda took the day off to come with us because the procedure was so much more complicated and involved anesthesia. You would think that being a hospital specifically for children would mean that the place would be warm, friendly and comforting. It was, sort of, except from the child-friendly waiting area we had to go to 3 different areas for one test after the other. Tomas was tired and frustratred by the time we were led back to the outpatient surgical unit. We were assigned a stark, cold room. Although Tomas was given a sedative to help calm him, when the folks came in to hook up the IV and administer the anesthesia, he began to fight like a small tiger. With six people holding him down, it took 3 big doses of anesthesia to get him under completely.

The audiologist came in after he'd fallen asleep and did the test. His hearing is perfectly fine and in the normal range.

Afterwards, the staff seemed in a hurry to get us out of there. As heavily doped up as Tomas was, they wanted him waking up after an hour--and they didn't want to take out the IV. Well, the little guy sat up abruptly, didn't recognize Heidi or me (Linda had gone out for a smoke, the first time she'd left the room since the ordeal began) and began trying to tear the IV out of his hand.

Clearly, Tomas wasn't able to walk and whenever Linda tried to carry him, he'd begin fighting and thrashing. A nurse said, this is normal, it's the anesthesia wearing off. She wanted to show Linda how to restrain Tomas and carry him out--but we thought it would be better if Tomas rested longer. I guess the insurance company must have a limit or something on how long you can stay in the room because the nurses were just determined we should go.

Tomas screamed for 20 minutes and then fell back asleep. It was one of the worst experiences I've had. The only good to come out of it was that we knew for sure that Tomas's hearing was fine.

But now what?

The school district preschool team came to the house to evaluate Tomas the end of November. I gave their psychologist a copy of the doctor's report (from PA) and she took it. Still, they tried to evaluate Tomas on the same things...and had the same results. He'd do the puzzles and toss the ball but anytime they tried to get him to get him to do a language task he'd pitch a fit. That team told me candidly that they felt T was, indeed, on the autistic spectrum and that he'd be placed in a preschool classroom with other children who have pervasive developmental disorder.

Ah well. I'd been suspecting so for a long time.

There was one more test after that, in January, and this time with a pediatrician specializing in developmental disorders and other special needs. He barely looked at Tomas, just going with the answers he got from parents Linda and Kennan. He diagnosed Tomas with pervasive developmental disorder not otherwise specified.

More later.

Since June...Part II

Once Linda gave her permission, a team from the early childhood intervention program at the hospital was able to come out and evaluate Tomas. They made observations mostly although they did ask Tomas to do some tasks. I noticed that he mostly ignored them at first. It was as if he put on blinders and turned his hearing off. At that point, it was hard to know if he was having residual hearing problems or not. When he did engage, he was so sweet and made lots of eye contact.

The team found Tomas eligible for services based on the fact that he wasn’t speaking. They also found delays in socialization skills and cognitive skills, especially since he was stuck on one type of play. He could use any toy to play this way, blocks, cars, it didn’t matter. What he would do is slide two objects open and closed and have a third pass between. After a while, TB figured out that he was mimicking automatic doors, like those at the grocery store. Those doors were a big issue—we’d go shopping and the little guy would get “stuck” at those doors. He wouldn’t want to leave them and he’d pitch a screaming tantrum when we had to move him. He would also actively resist us, TB and me, whenever we'd try to change the game. I'd build with blocks and he would scream and knock them down. He didn't want to build, he wanted to play the doors game.

The team explained what would happen next. The family would meet with members of the early intervention program and we'd come up with an individualized family service plan (IFSP). I was an interpreter in a school district for many years and so I knew this was the precursor to the individualized education plan (IEP) used for school age children to determine their needs, how to meet them, and to set goals so they could achieve. The nice thing about the infant-3 program was that the providers would come right to our house. Also the providers would be able to work with all of us and teach us how to best help Tomas. We also learned that as soon as Tomas turned 3, he'd no longer be eligible but could get into a preschool program with the school district. At the meeting, the team decided to send a teacher for Tomas twice a week and a speech therapist once every 2 weeks.

I would have preferred he get more services but hey, we'd take what we could get.

The team evaluators came in August, the meeting was in September, and services began in October.

Meanwhile, I'd done some reading up on autism and although I didn't think that was what was happening with Tomas, I had a nagging feeling that was part of it. I was signing with him but he wasn't responding. When we'd watch a TV program together, it would be "Go Diego Go" or "Dora the Explorer" or "Blue's Clues" which is interactive. And I would participate. Sometimes he didn't mind but other times he'd yell at me.

Our grandchildren from Tennessee came to visit and we were taking them places. Right away I could see that Tomas disliked Chuck E. Cheese and all the noise and commotion. He refused to try any of the rides and the only thing he seemed to enjoy was a slide in the infant section. If we went to the playground, Tomas didn't want to go on any of the equipment. He had a sort of parade route he wanted you to follow. He didn't want to get in the kiddie pool with his cousins and didn't want to go into the sandbox. He did enjoy playing with his cousin Taylor--our granddaughter is the closest to him in age.

What a dramatic improvement once the teacher began coming to the house! Nancy is a retired preschool teacher and she started out coming once a week while the program tried to find a second teacher. Nancy was scheduled the rest of the time with other kids but when December rolled around and there still wasn't a second teacher, I asked if she could come twice a week once one of her other kids "aged out". At first Tomas ignored Nancy but after a couple of sessions, he began to warm up to her.

By the time the holidays rolled around, Tomas was pointing at objects, was moving to music, somewhat interacting with “Go, Diego, Go” (the shows have the child get up and point at objects on the TV, etc) and was making some sounds that could be "yeah" and "hey". I was doing a lot of the modeling for that behavior because Linda and TB were at work and the kids were in school. Tomas would copy things if I did them first and he’d make eye contact and clap for himself. Nancy was very happy with all that and so were we!

Next: More tests for Tomas to determine a more accurate diagnosis

Since June...Part 1

Now I finally feel I can talk about what’s been going on all these months.

When we first began to visit with Tomas again over a year ago, we were kind of concerned that he wasn’t talking. He also was very reserved with us but I thought that was from the long separation. After all, he’d been through a lot emotionally and although I was hurt that he didn’t seem to remember our closeness from before I tried to understand.

The talking thing…that’s something else. Tomas had frequent ear infections during the time he lived away from us. Linda told us the doctor said his ears were filled with fluid and that’s why he couldn’t talk…because he couldn’t hear. Well, I have a nephew who had a lot of ear infections like that as a toddler and it’s true the hearing becomes impaired. Sean had tubes placed into his ears—what about tubes for Tomas? I guess they couldn’t do that until the infections cleared up and this just dragged on and on and on throughout the winter and into the spring.

Now T was over 2 years old and could not communicate with us. He would look at what he wanted and we’d try and guess what it was. If we didn’t guess right he’d become frustrated and start to tantrum. He would have some mighty tantrums, too, throwing himself against the wall and onto the floor. Now, I would have thought he would try to gesture or point to what he wanted or grab our hands but he seemed to avoid any other attempt to communicate with him. Meantime we were hearing some horror stories about what might be happening at the dad’s house and we were very worried about that.

By the time Linda brought T to live with us, he’d had tubes placed into his ears and the fluid drained away. Still…no words forthcoming, no attempts to communicate and although he could be very loving and affectionate he was also very withdrawn, rigid in his play and routines, and seemingly distrustful. I began to think, if it’s not his hearing that is keeping him from speaking obviously there’s something else going on. Could it be autism?

During this time, there was no contact with the dad. I wanted to call him but was nervous about it because of the way Linda had described him…that he hated us and wanted nothing to do with us. She said he never called her to see how his son was doing and so I wondered if he cared what was going on? Still, I often wondered what he thought about his son’s reluctance to communicate.

Over the summer, as Tomas became more used to us he became more outwardly friendly although he was still very reserved and sometimes unemotional. It was like he was wearing blinders sometimes or deaf/blind to what was going on. Communication wasn’t much better but the intensity of the tantrums decreased...

I contacted early childhood intervention programs and most were unable to act without Linda calling to make the initial request. However, I did finally get in touch with a program at a hospital that could take intake information from me. They still needed Linda to call to send an evaluation team so when she got home from work I gave her the phone and the phone number and she called.

Balancing Act

What Kind of Mom Are You?"

"Kids First Mom"

The results of The Balancing Act indicate that you are a "Kids First Mom." You are the type of mom that chooses to be very involved in your children's life and development. Although you want your children to be independent, you like to have an active role in the decisions and choices your children make. You enjoy planning activities for them to do alone or for you to share. You carefully monitor their choice of TV shows, friends, and extracurricular activities. You are the type of mom that is likely to be homeroom mother, scout leader, Sunday school teacher, or PTA president. You love to be involved all aspects of your children's life, and they love all of the fun you have together! You enjoying running them from practice to practice, fixing their lunches, and being there to welcome them off the bus when they get home from school.

Your children are the most important thing in your life. You are the type of Mom that regardless of whether or not you currently work, you would probably rather be home and a homemaker. You would be happiest being at home, spending all of your time with your children and nurturing your family. You realize that staying home may have some monetary sacrifices attached, but it would be worth it to you.

However, putting your children first can have some negative consequences. If you choose not to work, you may not have the monetary means to provide your children with certain extras like sports, dancing lessons, or scouts. Also if you are the type of mom who becomes so involved in spending so much time with her children, when your child begins to be independent, you may develop the "Who am I?" syndrome. Without your children being the center of your attention, you may have to struggle to regain your identity as a person.

Children of "Kids First" Moms are often very secure and more willing to take risks because they know they have the support of their parents behind them. They often get excellent grades in school because mom is always there to help them study or get their homework done. You really enjoy knowing what they are learning at school. Best of all -- your children are proud you are there and care so much!

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There are many resources geared to Kid's First Moms who have younger children. Younger children love being with you, and doing things with you. Children as young as 20 months can "help" pick up toys, clean cabinets, etc. Simple, educational, and fun activities are plentiful on both the Internet, and in bookstores. Other ideas include: libraries, museums, etc., that often have "story times" providing interaction for your child with other children, and also some adult interaction for you. Once your child reaches 2, there are many "Mother's Day-Out" programs that for one-three days a week for several hours, provide both interaction with other children, and a break for you.

Pre-Schoolers are also interested in being with you. As their world expands, so can the activities that you enjoy together. They can be of even more help to you around the house, Children as young as 4 can make up a bed, help with vacuuming the house, etc. There are also online activities and educational software available from approximately 3 and up. Preschoolers love crafts of all kinds, "making things", etc. Again, libraries, museums, etc., offer many programs geared to pre-schooler age, and are a great source of education and interaction with others.

Early school-aged children, while not at home with you all day any longer, also need your help and support. The habits you help them establish in their early school years will be appreciated throughout all their school years. This age child needs structure. Many kids find a well-established routine after school helpful to them. During summer months, a routine of a different nature is usually necessary and helps to ensure a "happier" summer.

These books were selected for your particular type and for excellent resources in general to help you be a better Mom. You can order them online through Online Psych and Amazon.com with complete security. Click on the title for more information (and often reviews of the book):

All Mothers Work: A Guilt Free Guide for the Stay at Home Mom, by Cindy Ramming

20 Teachable Virtues: Practical Ways to Pass on Lessons of Virtue and Character to Your Children, by Barbara C. Unell, Jerry L. Wyckoff

1001 Things to Do With Your Kids,by Caryl Waller Krueger

1001 More Things to Do With Your Kids, by Caryl Waller Krueger

Parenting A to Z : A Guide to Everything from Conception to College, by Irene M. Franck, David M. Brownstone

Parenting With Love and Logic: Teaching Children Responsibility, by Jim Fay, Foster W.

Parenting For Dummies-- the manual that we all wish our kids would have come with!, by Sandra Harding Gookin

Mom! He Hit Me: What to Do About Sibling Rivalry, by Elaine K. McEwan

Solving School Problems: Kindergarten Through Middle School by Elaine K. McEwan

Busy Day For Tomas!

Today was a very special day for Tomas! Not only was it his birthday, it was also his very first day of preschool! He and I went earlier in the week for a visit and stayed all morning, meeting the teacher, assistant teachers and other classmates. There are five other little ones in the class, a very nice size! Of course, we had to make a new photo album for the big event! Just click on the picture for the rest of the pix!

Linda took the day off for this special occasion and so I stayed home. The teacher told me on the phone that T had a great day today. The only down side was the reason the teacher called...Linda was a half hour late picking the little guy up! I have NO idea what that was all about.

It was such a busy day, the little guy opened just a couple of presents from Linda. He loves the play food set! He went to his daddy's for more presents and ice cream cake and we'll probably be celebrating all weekend because he hasn't opened all his stuff yet!

So Much Stuff Going On, So Little Time To Post

We've been very busy! Here are some photo highlights from December...click on the picture for the full album!

Here's a picture of Kristin playing the sax along with other members of the band in her high school's holiday concert.

This is a shot from our Christmas Day photo album.

This is the one picture I got of Kristin just before we left for her Princeton trip. She participated in a 4 day conference, the National Young Leaders' State Conference, and she sure got a lot out of it! She made new friends and learned a lot of valuable skills

This is Kristin's birthday cake ... and I really like the fact that she's very much an individual.

Happy Birthday to my TB

Okay, I would love to claim credit for this but I am just not a poet...but it does express my feelings! Happy birthday, sweetheart!

Unable to Sleep

For the first time in years, I have been awake virtually all night. I think I slept 2 hours between 1 and 3. I feel worried, frustrated and upset and cannot really vent here. I think what is most frustrating is feeling like my hands are tied, that there is not much I can do. How does that serenity prayer go?

God grant me the serenity to accept the things I cannot change...
the courage to change the things I can...
and the wisdom to know the difference.

In this particular circumstance, I need the wisdom.

Happy New Year

Billy threw up all over the house and I am feeling pretty sick again so the family party's moving to Gram's house. I guess I gummed up the works because I figured that family members would appreciate knowing there was sickness in the house. Oh well, happy new year.

1. Resolution :: promise
2. Happy :: New Year
3. Bubbly :: sparkling cider
4. Kiss :: hug
5. Leather :: lace
6. Fancy :: plain
7. Pages :: book
8. Stupid :: Someone
9. Apologize :: sorry
10. Secrets :: something someone has a lot of

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Merry Christmas!

We Have Lights!

Oh boy! For the first time in years, we have lights on our house and in our yard!!!!!

I have always been a little kid about decorating the house for Christmas. The year before Rich died was the first time I think we didn't string lights all over and that was because it was just too difficult for him. I couldn't do it either with my physical limitations ... so we did just the inside of the house. After he passed, I just didn't want to that first Christmas. When TB and I got married, I thought to do up the house then but we had a shortage of outlets, were involved in blending our families (no easy matter), and it just seemed easier to just do the inside. Then TB got hurt and I just put outside lights out of my head until this year and ...

Voila! Click the picture to see the other shots in our Christmas lights album.

Also check out TB's entry.

Today is also special in that it's Oma's birthday. She is 96 years old today, God bless her!

Ten on Tuesday

10 Things You're Thankful For

My health
TB
My kids
My extended family
My friends
My kitty-cats
Books
The time to journal/blog
Lost
last, but not least, the almost 18 years I had Rich in my life
Life journal

Five Years After

How can it really be five years? I have the same surreal feeling about 9/11 as I do about the anniversary of Rich's passing. Did this really happen? And now five years ago? Except for those who were very young or impaired, I'm sure that most of us know exactly where we were when we first heard that the World Trade Center had been attacked. I was at work and had just finished interpreting for a client. Now I was free to surf the 'Net--except that no one could get access. What was up? When I finally was able to connect to yahoo, I just could not believe my eyes: the north tower of the trade center was burning. Out of nowhere, a second plane appeared and crashed right into the south tower. Other than the shock and disbelief I can only remember two thoughts. One was for all those people lost, all the newly widowed and grieving. The second was: I'm glad Rich is not here to see this.

For weeks and probably months afterward, I felt angry. How could such a horrible thing happen? After losing Rich, this loss was especially hard to bear even though I didn't know anyone who'd been in the towers or at the Pentagon. I remember feeling hopeless and depressed and thinking that we were all just falling into a deep black hole that would just end in everyone's death and the world's destruction. It took a long time for that black feeling of despair to lift.

I don't think we've accomplished much since the attacks on New York and the Pentagon. In spite of what officials tell us, I don't believe we are any safer now from terrorist attack than we were then. I won't live my life in fear though. One day it will happen again, somewhere else because there is still too much hatred in the world. So it goes.

I got this from The History Channel:

ATTACK ON AMERICA: September 11, 2001

At 8:45 a.m. on a clear Tuesday morning, an American Airlines Boeing 767 loaded
with 20,000 gallons of jet fuel crashes into the north tower of the World Trade
Center in New York City. The impact left a gaping, burning hole near the 80th
floor of the 110-story skyscraper, instantly killing hundreds of people and
trapping hundreds more in higher floors. As the evacuation of the tower and its
twin got underway, television cameras broadcasted live images of what initially
appeared to be a freak accident. Then, 18 minutes after the first plane hit, a
second Boeing 767--United Airlines Flight 175--appeared out of the sky, turned
sharply toward the World Trade Center, and sliced into the south tower at about
the 60th floor. The collision caused a massive explosion that showered burning
debris over surrounding buildings and the streets below. America was under
attack.The attackers were Islamic terrorists from Saudi Arabia and several other
Arab nations. Reportedly financed by Saudi fugitive Osama bin Laden's al Qaeda
terrorist organization, they were allegedly acting in retaliation for America's
support of Israel, its involvement in the Persian Gulf War, and its continued
military presence in the Middle East. Some of the terrorists had lived in the
United States for more than a year and had taken flying lessons at American
commercial flight schools. Others had slipped into the U.S. in the months before
September 11 and acted as the "muscle" in the operation. The 19 terrorists
easily smuggled box-cutters and knives through security at three East Coast
airports and boarded four flights bound for California, chosen because the
planes were loaded with fuel for the long transcontinental journey. Soon after
takeoff, the terrorists commandeered the four planes and took the controls,
transforming the ordinary commuter jets into guided missiles.As millions watched
in horror the events unfolding in New York, American Airlines Flight 77 circled
over downtown Washington and slammed into the west side of the Pentagon military
headquarters at 9:45 a.m. Jet fuel from the Boeing 757 caused a devastating
inferno that led to a structural collapse of a portion of the giant concrete
building. All told, 125 military personnel and civilians were killed in the
Pentagon along with all 64 people aboard the airliner.Less than 15 minutes after
the terrorists struck the nerve center of the U.S. military, the horror in New
York took a catastrophic turn for the worse when the south tower of the World
Trade Center collapsed in a massive cloud of dust and smoke. The structural
steel of the skyscraper, built to withstand winds in excess of 200 mph and a
large conventional fire, could not withstand the tremendous heat generated by
the burning jet fuel. At 10:30 a.m., the other Trade Center tower collapsed.
Close to 4,000 people died in the World Trade Center and its vicinity, including
a staggering 343 firefighters and 23 policemen who were struggling to complete
an evacuation of the buildings and save the office workers trapped on higher
floors. Only six people in the World Trade Center towers at the time of their
collapse survived. Almost 10,000 other people were treated for injuries, many
severe.Meanwhile, a fourth California-bound plane--United Flight 93--was
hijacked about 40 minutes after leaving Newark International Airport in New
Jersey. Because the plane had been delayed in taking off, passengers on board
learned of events in New York and Washington via cell phone and Airfone calls to
the ground. Knowing that the aircraft was not returning to an airport as the
hijackers claimed, a group of passengers and flight attendants planned an
insurrection. One of the passengers, Thomas Burnett, Jr., told his wife over the
phone that "I know we're all going to die. There's three of us who are going to
do something about it. I love you, honey." Another passenger--Todd Beamer--was
heard saying "Are you guys ready? Let's roll" over an open line. Sandy Bradshaw,
a flight attendant, called her husband and explained that she had slipped into a
galley and was filling pitchers with boiling water. Her last words to him were
"Everyone's running to first class. I've got to go. Bye."The passengers fought
the four hijackers and are suspected to have attacked the cockpit with a fire
extinguisher. The plane then flipped over and sped toward the ground at upwards
of 500 miles per hour, crashing in a rural field in western Pennsylvania at
10:10 a.m. All 45 people aboard were killed. Its intended target is not known,
but theories include the White House, the U.S. Capitol, the Camp David
presidential retreat in Maryland, or one of several nuclear power plants along
the eastern seaboard.At 7 p.m., President George W. Bush, who had spent the day
being shuttled around the country because of security concerns, returned to the
White House. At 9 p.m., he delivered a televised address from the Oval Office,
declaring "Terrorist attacks can shake the foundations of our biggest buildings,
but they cannot touch the foundation of America. These acts shatter steel, but
they cannot dent the steel of American resolve." In a reference to the eventual
U.S. military response he declared: "We will make no distinction between the
terrorists who committed these acts and those who harbor them."Operation
Enduring Freedom, the U.S.-led international effort to oust the Taliban regime
in Afghanistan and destroy Osama bin Laden's terrorist network based there,
began on October 7.

Graduation Daze

Yesterday surely was a day to remember for us! We had two graduation ceremonies to attend with one daughter graduating high school and the other graduating junior high!

The highpoints: the pride in watching the girls graduate with honors and awards. Heidi wore a gold cord with her gown indicating her B-plus GPA. Kristin won just about every award given out at her ceremony. We are so proud of them both!

Everyone was so excited and happy and everyone looked "spiffy"!

The lowpoints:

Kristin's graduation was held at the community college gym and we all had to sit on bleachers for 3-4 hours, depending on what time we arrived. Why the gym and not a comfortable auditorium? There was a speaker from Ft. Dix who quoted extensively from some obscure colonel's memoirs about making a charge at the battle of Gettysburg--this at an 8th grade commencement?

We had passing showers all afternoon. The high school commencement was supposed to be held at the middle school football field--I don't get that at all if it was sunny. If it was raining, graduation would take place at the community college. At 4:30 the superintendent was supposed to make a decision and it was to be posted on the education channel--but it wasn't. Several of us weren't sure where we were supposed to go so we went first to the community college--and it wasn't there. Heidi was pretty upset at the chaos but I think it was a little better because her friends' families were going around in circles too. It wasn't just us. Anyway, we all made it to the middle school and not a drop of rain fell thankfully. Meanwhile, at home just 10 miles away the power went out in a storm. Go figure.

Here's our view of the field for Heidi's graduation. I am so glad that it ended up being outside! I don't think I could have endured any more sitting on the bleachers. TB and I brought our folding chairs (nice soft canvas), plenty of drinking water and his camera. We watched with the family of one of Heidi's closest friends throughout high school.

More pictures coming up!

Goodbye Dear Terri

This evening I got a call from my first mother-in-law, Alberta, who gave us the very sad news that Rich's Aunt Terri passed away after a long battle with cancer this afternoon. She'd been fighting cancer in one form or another since 1987.

Terri was an angel on earth. She was one of the most kind and loving people it's been my privilege to know. In spite of the pain she was in and in spite of the misery of the side effects she suffered, I never heard her complain--ever. She was always smiling and always positive.

There was just one period of time when I remember she felt otherwise. After Rich died--and it will be 5 years next week--she'd wonder why she continued to live when he was so young and still had so much to live for. Those first few months, we cried together often. Sometimes she would say to me, here I am trying to comfort you and you end up comforting me.

I admired her for her spirit and loved her for her sweetness and loving acts toward everyone. I will miss her so much but I know that she and Rich and her parents and their other loved ones are together in heaven and will be there for us when we get there.

This is the last picture I have of Terri, taken at Billy's high school graduation party last year.

10 Things That Remind Me Of Mom

Ten on Tuesday

1. My laugh -- it sounds like hers to me. When I laugh sometimes I think she's in the room!
2. Some of my facial expressions -- sometimes I look at a picture of me and I see my mother
3. "Let Me Call You Sweetheart" -- my father sang that to her a lot when I was a kid. Yeah, he's deaf and yeah, he was way off tune
4. Flowers and gardens -- she's got a green thumb and always has stuff growing
5. Maryland style oven roasted chicken -- one of her specialties
6. Baltimore Orioles -- my mom's a rabid fan, especially of the 1966 team
7. Cats -- Mom's always having cats adopt her too
8. Wheel Of Fortune -- another strong fan of that game show
9. Dancing -- she & my dad are like the Deaf Fred Astaire and Ginger Rogers
10. Sign Language

Diabetes

In the years since Rich died, I've put on an enormous amount of weight. In the back of my mind I knew I was at risk for diabetes, high blood pressure, heart attack and all kinds of other unpleasantries. The thought would come to the front of my mind and I'd worry so much, I'd end up gaining more weight instead of losing it. So I kept putting it to the back of my head hoping I'd get the weight off before it was too late.

I look back at the weight I gained after I stopped smoking and had kids and I remember the midwife saying to me if I didn't get all of it off again before 40 I would have a lot of trouble from it.

Yup.

I think I was in pretty good shape 5 years ago. Now I have high blood pressure, a collapsed arch, fibromyalgia, painful joints...and diabetes.

I haven't been feeling well or myself lately and went to the doctors, my OBGYN first. She is the one who discovered that my blood sugar was very high and so I went to my family doctor. I hadn't had any blood work in about a year and so I went and had blood drawn a few days ago. I got the results in the mail today and boy, that sugar is really high! I also noticed my cholesterol is above normal.

Funny...I was just talking to the therapist about how to prod myself into getting my act together. What can I say to myself to make me get serious about all this?

And she said, "How about...'I don't want to die'?"

Yeah, that's a good one!

This is not going to be easy. I found a quote that I'm going to repeat to myself by Winston Churchill: "Never never never give up."

Portfolio Presentation

I'm sure Heidi is so relieved to have her portfolio presentation out of the way! We were up early this morning to drop Kristin off at a friend's and then drive on into Philadelphia to the University of the Arts. That was a real exercise in confusion! It turns out that TB doesn't like Philly very much and is totally uncomfortable driving around there. After going in a couple of circles and in the wrong direction for about a half hour, we finally got ourselves righted and arrived in time for the tours.

U-Arts is located in Center City, very close to City Hall and on the Avenue of the Arts. There's a lot to see and do right in those few blocks around the school. The school itself is made up of older buildings but I have to say I was very impressed when I toured the residence halls. The rooms are either very large studios or small 1 bedroom apartments and they all come with kitchenettes and private baths! The windows are huge and make the rooms bright and airy. I didn't go on the tour of the classrooms because I wouldn't be able to manage all the flights of stairs with my foot. Heidi enjoyed looking at all the different studios.

Her presentation was at noon and she'd brought along a dozen or so pieces to show. I thought she might be facing a whole committee but it was just one single person, a woman, and I thought that would make things a lot easier for Heidi. After about a half hour, TB and I were called back to answer any questions we had about the school and then that was it. TB was so relieved to be getting out of Philly! He and I both agreed that if Heidi wants to pursue art, this would be the best place for her to do it.

Heidi just seemed a little stunned by it. She liked the school and said she'd have to get used to the idea. I know that she's told me she doesn't like change. If this is what she wants, though, we'll do whatever it takes to help her make the transition if she is accepted and if she decides she wants to go there.

Happy Easter

We hope everyone had a lovely, blessed Easter. We all kind of dressed up a little and went to eat at our new favorite, Anapa's. When we got back, TB took some pictures of the girls and me because they so rarely wear dresses. Well...you can't tell that they are anyway!

Oops, Heidi's hair got in the way!

That's better! Click below for more pictures--the girls couldn't keep a straight face!

Kristin's tendency to funny faces is genetic. I have to admit I used to confound and frustrate photographers all the time doing the same thing. Heh...not so much anymore.

We had a wonderful day but we sure did miss: Billy away at RPI, Michele, David, Brandon, Ryan, Taylor, Nikolas, little Tomas (whom we were hoping to see this weekend and so sad that we didn't) and Linda.

Happy Easter everyone.

Rite of Passage

If I'd known then what I know now ...

When I moved back to NY in 1980, I developed a friendship with Toni. Toni took care of my grandmother when her health was failing. At the time we became friends, Toni was 50--the same age as my mom. Toni was totally different, though, vivacious and fun and a total nut. It was so much fun to be around her. Well, there was one thing Toni would bring up and that was whether she was pregnant or in menopause. I thought she was a little obsessive about it. She'd say she hadn't gotten her period in a couple of months, she didn't know what was going on with her period and so on. I thought, geez, it'd be such a wonderful thing, why complain about it when you are period free for months at a time?

Heh. Now I know.

It's like when I first started my period--I was irregular and never knew when I would get it. In a way, it was a little nerve wracking because back in the day of the dinosaur, there was no tampons (at least, not that I was aware of at my young age) and when I first began getting it, I was a tomboy. I didn't carry a purse. My mom would say, always carry a pad with you "In case". So I had to start carting a purse around which was very annoying to me.

Soon after Rich died, I began skipping periods. I was 46 and figured it was all the stress and grief. My doctor thought it was possible but that I might also be "peri-menopausal". That's no picnic, believe me. In the last year or two, I've gone from skipping a period every other month to going up to 6 months without one. Meanwhile, I still have PMS-type symptoms, especially the emotional mood swings. All that was missing is the mess. I had a blood test that showed that yes, I'm in that lovely transitional phase of menopause.

I totally sympathize with what Archie said to Edith in the classic All in the Family series. Okay, Edith, he said (or something like it), you've got 5 minutes...now change!

One thing--once I have gone a full year without a period, that's it. I think.

I just haven't gotten there yet. The last time I'd gotten a period was when we were in Tennessee. That was a lot of fun--I wasn't expecting it (I think I'd gone 6 months at that point) and had to get to a store. Yeesh.

And now it's back.

My counselor says, don't worry, in 2 years you'll be feeling much better.

Dang, I'd rather change in 5 minutes!

Guitars

My guitar is about 35 years old. You wouldn't be able to tell it was that old if you looked at it. I've been very careful with it over the years. I used to rub it down with lemon oil to keep the wood shiny. I bought it with my own money (saved from babysitting and allowances) and I used to play it every day for hours and hours. As I got older, I played it a little less. When the kids came along, I stopped...there just wasn't time in the day. I wouldn't ever give it up or give it away even when my fingers and wrists began to ache with injuries and arthritis. I didn't care if I never played again, I love that guitar.

A few times in recent years, Heidi said she'd like to learn the guitar. I would say well, maybe I can teach you. She'd say yeah but that was about as far as it got. Not long ago, she spoke wistfully of having a guitar and I remembered how I felt when I had my guitar and was able to play it. Kristin began talking about wanting to play too. Originally, I thought I might give my guitar to Heidi but then I thought, hey, why not just get the beginning kit? You get an acoustic guitar and a few other basics. This way each girl could have her own.

It didn't quite work out that way. Those guitars aren't very big--I guess they are mostly meant for kids who want to learn. We went to the flea market not far from here and picked up two really nice acoustic guitars. My, how things have changed! There wasn't one guitar in the place with nylon strings. I hadn't seen any in the music store either. Doesn't anyone play with nylon strings anymore?

I used to tune my guitar with a pitch pipe. It's hard to describe it, a funny looking little thing with six little tubes, one to tune each string of the guitar. You blow into it and it makes a harmonica-like hmmmm sound. Then you tune the string as best you can to the sound you hear. I'd learned to tune the first string to a piano and then the others, by ear, to the 5th fret of the preceding string--except for the second one. You held down the 4th fret of the 3rd string to tune that one.

Okay, anyway, I asked the guy for a pitch pipe and he looked at me like I had six heads. I said, "You know, to tune it." Ohhh. He came up with a couple of battery operated digital (I guess) tuners. One has a suction cup that attaches to the guitar. The other one is much more sophisticated. It tunes any instrument once its calibrated. Well, I had a devil of a time trying to tune the girls' guitars with that thing. A mere fraction of a turn one way or the other and you'd have a sharp or a flat instead of a regular note. Argh! TB had to help out the first time around.

It sure brought back lots of memories. I played that guitar in all moods--whenever I felt lonely, sad or depressed and also whenever I was feeling really happy and everything in between. The songs I learned were mostly folk although there were some from the times--the early 1970s--like "Leavin On A Jet Plane" and "You've Got A Friend" and "Hey Jude".

I kept all my music over the years. Unlike the guitar, the pages of music show their age. The first song I learned to play was "He's Got The Whole World In His Hands" and so that was the one I taught the girls. It had just 2 easy chords in it and I figured it was a good place to start. But I also remember how cool it felt to play music I listened to so I went online and looked for some popular songs with easier chords and found a few.

If there's a downside it's how much my hands have aged in 35 years. I have good fingers for playing the guitar, long and slim. I could play bar chords and stretch my fingers over several frets. I could pick and pluck the other strings and it sounded great to me although I know I'm no Eric Clapton. It was fun to play for myself and for my friends and family and feel the joy of making music. Now my fingers are stiff and thick and clumsy. I can't string my guitar right and it's so frustrating. I need to unstring and do it again and probably will need to have someone's help getting it started. Once I get it strung, though, I think I'll be able to play and play and the "how to" memories will all come back. I forgot how much I loved it. :)