Journalistic Integrity: Found

At one point in time, many years, but no so long ago, I wanted to be an investigative reporter. I wanted to be a Photo Journalist. I had an aptitude for one but not the other. And in the hustle and bustle of things that could not be changed I decided that journalism was not for me after all. Why? I was unable to fulfill my commitment to my Journalism Teacher because I was very sick. She moved on and I was left to write small articles, I was left behind so instead of staying the course and working my way back into the groove, I moved on to something else. But here's the thing: I didn't really. I just stopped writing as much. I was editing things in my head, taking stock and asking questions, forming concepts and talking about it but not writing.

Until now, I had no purpose to write. All things are already being talked about and I had lost my passion for prose. Until Bug.

He makes me want to write again. He makes me investigate and search for the story, the reason, the headline. I see him, daily, just being a 7 year old boy and not thinking anything about his Epilepsy, in fact I am not sure he thinks much at all but he is happy. He knows no difference. Our lives are forever different, but his is what it has always been and I moved to share that. Motivated to bring hope to people that *do* think about their Epilepsy and are having a hard time reconciling that their life is not all about their Epilepsy. So, I write again, hopefully I write with purpose and with clarity. With no passion but fact as proof. Hopefully.

Green eggs

I was driving home tonight, having spent a rousing round of 'guess where the book I want is' at the Barnes and Nobel, when I got to thinking (I do that when I am alone). I pondered the things, the really small things, that we take for granted everyday. Not the existential stuff, life and all that. The really simple tangible stuff. Like the fact that I was driving at a rate my Great Grandmother couldn't even fathom. The blackness of night all around me, red tail lights ahead of me, Bon Jovi on the new stereo speakers and the tires spinning at a rate of 21.48 times per second getting me swiftly to my destination. Not that Great Grandma DIDN'T think about traveling at a fast rate, I am sure with a dozen kids running around she certainly would want to expedite delivery to the required destination. It's just, I imagine these things weren't important to think about to her. Why would they be? If she wanted to go anywhere, it was a major event. One just didn't jump in the car and head to the book store. Who gave a crap about speed when she needed to figure out how much food to take?

I also thought how many times I have opened my eyes to the unfairness and injustices of life. How many times I saw the ugliness and yet opted to search for the beauty. How many days I accepted the strain to achieve balance readily. To look at the good things, the simple things, to look beyond the moment. To stretch into that being within us that gives us insight and perspective. To not outweigh the good with our own self-indulgent selves. We shoot down what would take us up, by seeing what had not happened that we wanted to happen. We break our own spirit by deeming as 'bad' what others might be grateful to have.

I recognized that my days are stitched non sequiturs. I wake up, maybe after a good night's sleep, maybe not, to breakfast, a yet to be determined food, and then I check email. The children eat, and the begging to go outside to play begins, these are the constant. The randomness begins AFTER breakfast. Will Bug play with anything inappropriate and create a mess that is gag-worthy? 5% chance of happening so we move onto will Taylor bring home a friend. 25% chance of happening. Bug needs a diaper change 100% and Tay will beg for something sweet and completely unsuitable for the time of day, also 100% but today...here's the really random stuff, the nice neighbor walked Taylor home. She told me she is unexpectedly pregnant. I would be thrilled, but my thoughts are not everyone's thoughts and I can not judge someone on what MY reaction would be. THAT invalidates who they are and what they are feeling. She hasn't decided yet how happy to be, they thought they were done. I get that. I really do. I also believe, perhaps naively, that she will be thrilled eventually. She did the whole trying to conceive thing, all the tests and what not, she understands what it take sometimes. Today, I also learned about the frontal lobes of our brains. The most developed part of our brains, the sets us apart from animals. In most cases anyway. And that led me to the book store. I wanted to learn more about our lobes. 

But, not only did they NOT have the book I wanted, I learned that either no one writes books about epilepsy, or they just don't think that they need to carry any. In fact, the Chemistry and Biology section was one bookcase. Physics and Astronomy: also one bookcase. If you want to learn how to bake cookies or entertain guests you have to peruse 6 bookcases. An entire wall of cook books. Eating is important, but so is Chemistry. Cooking is chemistry. But not as many people want to actually learn what ares of our brains control speech and motor functions, they want to learn how to prevent that green film on a hard boiled egg.

That's what I get for thinking. Green slimy eggs. 

Whew

What a week. Started some new projects:

http://isthisbug.blogspot.com

http://tayisms.blogspot.com

 

And one more but it's not ready for debut, as if Tayisms was..but I did it anyway. I needed a place to put all the info about Bug without depressing my few friends here. This will be about the family time and personal stuff. This is Bug is all about his day to day events, or lack of them. Tayism's - just what it sounds like, she says some really great stuff and I didn't want to forget that.

Bug had another EEG and spent some time in the ER this week. He was sick, not because of his Epilepsy. Details are on his Blog. I will try to update with pictures and about the missed events. Easter, Tay's Birthday, Memorial Day, I'd say Mother's Day but...that wasn't that big of a deal. Although, her class did some things I will post about.

After I sleep for a few days.

 

Kindergarten..is done?

I was a little surprised that the day I thought was the Kindergarten program was also Bug's graduation. Found out when I pulled the invite out of his bag the day before. Must have missed that part. But wasn't going to MISS it. Tay had to go to school and his program started at 1:30, she gets picked up at 2:15. This was gonna be cutting it close but I figured: How long can 5 and 6 year olds possible sing? The answer is: long enough for me to MISS the graduation ceremony because I had to pick up Tay. Seriously, the program was over a half hour.

The top of his head is sooo cute!

Bug did not REALLY participate of course, what with him not being able to talk and all. :) But his phenomenal assistant, Nellie, held him and sang with him, while he spun a car, for half the program. She then filled us in on the practices. (I love this woman, I would adopt her if I could.) Bug had been going to them and doing fairly well. She told us that he made it through the ENTIRE program the day before. She said that he would somewhat participate on a few songs and while he was on my lap, when the kids were singing, he did sound like he was singing along. And he clapped when they clapped and got quiet when they were done.This was a big deal. It was great to see.

 

The hat and Bug's Nellie!

We went back to his class for cookies, Sprite, the video and the graduation. Luckily, Cheryl was with me, because I had to leave to get Tay at this point. Now, Tay's school is 3...that's right 3 minutes away. I was there and back in 8 minutes. Yea, I timed it. And in that time, I missed it. They were done. I was upset but Cheryl assured me she got pictures. Turns out she didn't. The picts I have are blurry at best but at least the video is OK. Doesn't matter. He got his certificate, which is hanging on the board, and a hat! They made him a hat! It IS the cutest thing I have EVER seen on him, for the 3 seconds it was on him :). I can't believe he actually is finishing Kindergarten, Resource Kindergarten but Kindergarten all the same. This means we have 1st grader living in our house!

 

Bug and the hat with Mom

We had his IEP a few days before. Bug is going to a new school next year. 1st Grade will be at Dan Peterson Elementary. We are VERY thrilled about this and I think Bug will do well. At least I pray he does. I still don't think they know what they are in for. With him, or his Mother. Congratulations Bug!

Dinosaurs!

I took Tay to the Thanksgiving Point Museum of Ancient Life a little bit ago and she was anxious to go back. And take Megan with us. So we did. Took Bug too. It's a small museum, but very well stocked with a variety of fossils and plenty of interactive displays. I would have loved it as a kid, I sure do enjoy it as an adult. I could detail the trip but really it loses so much when you haven't already been there. Besides I don't remember it all. The picts tell the tale.

 

 

The record ends...

Bug had gone 13 days with no seizure. 13 wonderful days and nights, we are seeing the old Bug more and more every day. And then, last night, a little over 30 hours from his latest vaccines, he had one. Then early in the AM he had another. Two. Two that I had NEVER seen before. They were not full T/C, he was rhythmic in his convulsions but only mildly. He did not blink, and instead of hard swallowing, he was breathing hard. And he reached for me, over and over and looked terrified. It was tough. These two ones, were VERY tough for me but he seems himself today. And the terror lasted for over 2 minutes each time. Just shy of 3 in fact. I hate them. I hate them for he is so sweet and so darling and so frustrated with not being able to talk to us. We are starting to see that frustration again, he displayed it when he was 3 but not since then. Not until now. I hope it was just the vaccines exacerbating his condition. I pray it was, that way, I know he will sleep peacefully again soon. If not, we may have another longer road ahead of us. Either way though, 13 was a great run!

Knock Knock

Bug's MRI went very well. He was still very tired (of course being sick and 6:30 in the morning helped that part.) so the IV and sedation went smoothly. He had a tough time waking up after the MRI but with a little coaxing, we left a shade after 10am. Which was good, because ALL of us were still sick and getting more exhausted as time went on. The MRI appears normal, not a surprise, the last one was good too and so we wait. Thankfully, Bug slept the rest of the day.

On our way home we decided lunch had better be Grinders 13 in Salt Lake. None of us were up for eating inside so Tay and I ran in.

Grinders is an institution in the Maughan family. Glenn himself, has been eating there for over 30 years and his father was one of Mo's first customers. Dad gave Mo a 5 dollar bill and told him that if anyone can find a better Grinder than he would buy it for them. Mo put it in glass and it hung on his wall for at least 20 years. Yeah, his subs are just *that* good.

Tay and I ordered and sat down to wait. No sooner had my fanny hit the chair when she looked at me and said:

Knock Knock.

I smiled: Who's there?

Taylor

Taylor who?

Taylor Nicole Maughan. And she's three!

Yep, that is very much a 3 year old Knock Knock joke. And so it begins.

Bubble wrap and oxygen tents for everyone!

THIS is getting stupid.

Another fever, another upper respiratory ickie something-or-other.  It's Tay. I blame her. I blame her and her damn friendliness, I hope the other little booger eaters are sick like we are too. Cuz if they ain't...she's going back to the McDonalds playland to slobber and drool over EVERYTHING IN THERE.

I knew moving back meant some introductions to illness we haven't encountered, but seriously? 4 in 2 months? 2 rounds of antibiotics and a lifetime in bed.

The worst is when Bug is sick, he sleeps, and when he sleeps...although he has been asleep for a few hours and is fine, except for the fever, which comes back every three hours or so. And he has been cuddling, Tay has been running around trying to get Daddy to play with her Barbie Diamond Castle like all is well. She sounds like a truck driver but she has plenty of energy. And I can not wait to see Daddy behind that Castle playset galloping those horses.

Doctor

Another hope tomorrow.

Another Doctor tomorrow.

This one ASKED to see him. This one may see something challenging, we like people who are challenged, they try to help, they can become obsessed, they can find answers. But they can also throw their hands up if the challenge is too great, if it makes them look bad. And Doctors are the worst at this. I make no apologies, I have been to far too many waiting rooms and Doctors to know the exceptions are few and far between. Still, I have *some* hope but mostly I have a list. A list of tests I want performed or a valid explanation why they are not required. And I have a Merck paper too...and I almost understand all of it. Merck, gave me more direction, and more questions and more possibilities for diagnosis. I have almost ALL of his medical records, I have his CAT scan and EEG on disc. I am prepared.

This Doctor, better show me what makes him different than all the rest, he will prove to me that he is the smartest Doctor I have encountered and the aggressive one that wants to do everything immediately to find the cause or...I will find someone else. I do not believe in trusting any Doctor without question, after all, someone had to finish at the bottom of the class. I have been known to ask how many times the Doctor took O Chem. It's a crappy thing to do, but if they tell me: Oh it was easy...I have a tendency to think they lie. O Chem takes work, and all the GREAT Doctors I know admit it. Sure, some of them passed it the first time, but they ALWAYS comment on it being their toughest class. Those Doctors, I keep. As long as they can tolerate me being a partner in the medical care they are providing. If I ask a question, I want an answer, not 'a look'. K, done with that.

This week has been good for Bug. He had a development day. A development day is a day where he sleeps almost a full 24 hours. The next few days after will be interesting. His seizure pattern will change, his personality will alter. He has one of these a year, at least, sometimes more. The curious thing is his seizures happen exclusively while he is asleep, and he had none. He slept for hours, and would wake up, cuddle a little, run into the other room and then cover his eyes and go back to sleep. No seizures.

Tonight could be night number 6 with no seizure. If he sleeps well and has none, it is a new year record. He has only gone this long one other time in the last year and 4 months. Did I just jinx it? I hope not, but still, he is a happy little guy now. REALLY happy, annoyingly happy and very Mommy oriented.

Because of all the Mommy time he desires, Taylor desires even more. She has been reverting to acting like a baby to get attention, and if I don't validate that, she just gets mean. The girl KNOWS how to push my buttons, and to make messes and to apologize and to bite. She bit her brother, and I punished her, She didn't like it, I didn't like, but I DO NOT abide biters. In any way, for any reason. Now she REALLY knows it.

She also asks the same question with every Doctor visit: Will buddy talk? She wants to hear him talk as much as Glenn and I do, maybe more, because we understand that he may never talk, she thinks it's just about finding the right Doctor or Teacher. I wish I still felt that way, but...I don't. My hope dwindles with every week that goes by. Every medication step up and seizure that has followed. It's hard to see that this may be working now, hard to see it when all I have seen is the failure time and again. The regression. It has taken on a life of its own, become this thing that I can try to chip away at, but looms ahead of me all the same, never getting smaller, never giving any part of him back to me. I have fought a lot more than most in my lifetime, but the battle was always mine, this one is his and I have no way to give him my strength except to be his advocate...to learn as much as his Doctors know about what is going on in his body. To give them all the details they need to put this puzzle together as much as it can.

Idiopathic to me, is really saying: Don't want to look anymore. Idiopathic will not be tolerated. Poor, poor Doctor. He has no idea how much this means to me. God help him help Bug.

Bug's First Day of School!

Leading up to the big day was all sorts of emails, and research and nervousness. I followed him around, I cuddled with him, made sure all his medication was set and then he got on The Bus monday morning and headed off to start a new adventure.

Monday, Glenn had to fly to San Francisco so we were up at 6:00AM. I THOUGHT Bug's bus arrived at 7:07 so I got him up as well. When I verified, it was 9:07. Crap. Oh well, so off I went to take Glenn the airport and man, it was snowing pretty darn well. Yippee!!! We had repaired the brakes on the Land Cruiser so the ride was not as scary as it would have been in the Highlander. I got back, Mom had fed Bug, who had refused to eat earlier, and I made sure all his 'stuff' was ready to go.

Snacks? Check (and a lot of them)

Water bottle? Check

Diapers? Check - 5 times check

Unaware, beautiful child? Check

And I got a phone call. It was Charlie. Joan was not driving that morning and they weren't sure where the church was. He asked if we could meet at Cabella's. Why sure!

Cabella's? Check!

Deer + Headlight = Bug

We waited for a few minutes, and I took a few picts, trying to distract myself so I didn't cry too much. It was then, I realized my Sony Camera had a broken LCD. Darn it, but the guts still worked and the pictures are cute, as are most pictures of Bug.

When those Bus (ya The Short Bus god bless) doors opened there were these two smiling Grandpas! I was thrilled! The Bus Driver (notice the caps - yep intentional) looked like Dad! Bug was a little taken aback and then climbed up and took his seat. Charlie put his seatbelt on and I said my goodbye, talked to his new Grandpas and watched them leave.

Because I had been sick, I was not able to get him registered so I followed

The Bus

them to his school. I say that matter of factly, but I had to call Jen to talk me down I was so close to crying. In my head, I knew this was the best thing for him, in my heart, I saw him trying and trying and not being able to do what he wanted. And Jen reminded me that this was not about ME, it was about HIM and this is how he develops, and how he will learn to cope in the world. It would be silly to see a High School student walking in with his Mommy. She was right, of course, and I tried to calm down and think of all the things that are now available to him, and of all the people trained to help him. I never went to school to learn these things, his care was just dropped in my lap one day. I am not the one that will do the best by him at this point in time. I am the one that will help him succeed, but he has to get the tools to succeed from people better suited to teach him in the manner that he can learn. And yes, all these things went through my head as I was driving. Luckily, I had a big target to follow without thinking about the silly rules of the road.

 

Mount Mahogany

When I got there, Bug was walked off the bus, hand in hand, and taken inside. I went to his classroom, passing by all the screaming children gathered for a school assembly and thought: Uh Oh. I got to his classroom and his WONDERFUL teacher, Bre, had him by the hand. When I first saw Bre my thought was: YEA, she's tall and looks sturdy. :) Stupid thing to think, since she is so much more than that. But, realistically, with a strong boy that doesn't communicate, strong people taking care of him are a neccessity. So, I apologize for relagating my first meeting with Bre to such a shallow thing, but it is of the utmost importance. I said my hello's and told her: He's strong, and as much as love him, I know what it takes to keep him under control, use whatever means you deem neccessary. :)

And with that, I left him. Bre walked Glenn to the assembly and I walked to the Office.

I filled out all the forms and talked about lunch and other things and then I went back to his classroom to see how everyone was holding up and give Bre back the papers I had filled out for her. When I walked in, I was thrilled to see him standing in line with the other kids, coat on, hand being held, ready to go outside to play! Oh boy, was I thrilled! He didn't see me, which was good, because earlier he had reached for me and was a little upset I didn't take his hand. It was then, I knew I couldn't stay. I had planned on it, but it was not the best thing for him or for his evaluation. So, I said my goodbyes, assured Bre that if she needed me, I was at her disposal and I walked out the doors. I didn't really really want to, but I had to. I felt like I was abandoning him, even though I KNOW I wasn't. I got in the car and headed home. It was quiet. There was no coat hanger spinning hitting the back of my seat. His seat was empty. No little feet kicking, no little giggling behind me, just complete quiet.

Tay went to school, Mom and I went shopping for Dad's Birthday present, we picked up Tay, I signed up for her Parent Teacher Conference on Wednesday (no joke - preschool parent-teacher) and then I rushed to try to beat the Bus to get Bug. As we got to the school, his bus drove passed. Snap. But I parked and went in to talk to Bre, knowing I had some time.

The first thing Bre said to me? He is not truly Autistic. I shook my head, yep, I know. And he can't do a 6 hour day. Yep, I know that too. :) We went through what the next steps will be, she had two district personnel visit him and evaluate him. Bre created his IEP and we will be detailing it tonight. I thanked Bre and Camille for everything, got his pants and shirt from their dryer (LOL) and rushed back to meet The Bus.

When those Bus doors opened, there were still two smiling Grandpas and one smiling redhead! And the

Getting off The Bus

unmistakable odor of stinky boy (which I can't imagine the Grandpa's smelled because they WERE still smiling). I talked with them for a bit., thanked them profusely, asked how Bug had been and then made arrangements for the next day. Then we drove to Ogden for Dad's birthday.

I can't help but feel like all the things we have done in the last year have led up to that moment, the very moment that I handed my son over to his Bus Grandpa's and watched them treat him like their own. All these wonderful people in his life right now, are exactly as it was supposed to be. But, I have to feel that way don't I? I have to or I will feel hopeless, and it may be, but I doubt it. I doubt it very highly. Bug's first day of school is over and everything else begins.

 

The big let down

We're sick. Thanks Tay, we are all very sick. And because we are, Bug can not go to school. Sucks. He needs to get into school. but it will have to wait until he is better so he can come home sick again in a week because he is now around a lot of new kids and people that carry bacteria and viruses we have not built up an immunity against. There ya go, one of the longest sentences I have written but I am upset he will not be getting on the bus in the morning. And yet, I am glad to have him one more day. It will be a shock for them at his school, to have a seemingly perfect child that really has NO IDEA how to communicate. Aside from hugs an kisses and tugging...he doesn't really even try to get his point across. I PRAY they have had someone like him before, but I fear, it will be a learning experience for them and a frustration for him. I hope I am wrong. God help me if I am right.

 

 

EEG's and a strong little boy

I walked the halls looking at the faces of all the Doctors and Nurses that passed by, wondering if one of those minds held the key to the lock that took my boy from me and left me with so many questions. I walked the halls on my way to sedate my boy, place electrodes on his head and HOPE he has a seizure. HOPE he HAS a seizure. I never wanted him to have one before, never! But today, I was hoping beyond all hope that he was actually going to misfire and have the very thing I dread. And he did. BEFORE the electrodes were on. We missed it by 40 minutes. It was the first time that any medical professional had seen one and for that I was somewhat grateful, but saddened all the same.

Our decision to move back to Utah was validated in spades the last two days. It was the ONLY place were we could have gotten 2 EEG's in 2 days, the only place where 5 nurses held him and cuddled him and tried to comfort him. And the ONLY place where a very kind Doctor took the time to explain to a worried Mom about Precedex®. Dex is a sedative that mimics sleep. Very mild, as far as sedatives goes, and essential for a precise view of the brainwaves our boy creates. He needed to be sedated because, as sweet and easy as he was the first two times he had EEG's, he WAS only 3 then and 5 is a whole different ballgame. 

On December 2nd at 7:00pm we began the sleep deprivation. I was concerned it would be a battle we would lose and he would run headlong into deep, peaceful, sleep. But he didn't. We played music loudly and Tay helped by shaking him and screaming at the top of her lungs. In an enclosed car...it wasn't pleasant. At 10pm, Mom and I took him to WalMart thinking it would be easier to keep him awake with the bright lights and noise. And hey, I can Christmas shop so: Win Win. WalMart worked. A little too well. At 12:15am we headed for home. At 12:25 we were home, at 1:00am I was begging him to go to sleep. At 1:15 he complied.

Glenn's job was to wake him up at 5:15. He woke up at 7:00. Oh well, he is used to 12 hours of sleep so he was pretty deprived. But he was happy. Too happy, too energetic. K, that worked against us. At 10:30am we got to the hospital and heard: your appointment is tomorrow. Snap! How did I do that? The wonderful, kind and sweet lady said the most spectacular thing: Wait a minute and I will see if they can get you in! What? Cool. We'll wait. And Bug paced and ran the halls and I talked to some nice ladies and eventually we were called in. It was amazing.

Bug does NOT like small rooms. DOES NOT. So when we had to hold him down to get the electrodes on, there was a great wailing and moaning and gnashing of teeth. I thought he did fairly well, but it was a battle. Once the electrodes were on and the room was available we laid him down. And he got up. I laid down next to him, held him in my arms and he screamed at me and tried to get up. After changing parents and about 40 minutes I called no joy and asked for sedation. 

They called the Sedation department and, well, Bug had a cracker. *A* cracker, 3 hours before so he couldn't be sedated. To be so close and miss it because Daddy was thinking his Boy would be hungry since Bug refused breakfast, well it pissed me off. I believe my comment was: 'Well thank God all those emergency surgery patients were smart enough to not eat for 12 hours before they got in the car accident'. The room was quiet...except for Bug. I heard: 'They don't want him to aspirate anything. ' I said: 'A cracker? His own spit is worse'. And then I apologized and told the VERY nice nurses and techs that they were fabulous to get us in and I really did appreciate it more than words can express. And then something amazing happened. We got an appointment for the next morning WITH sedation. Glenn and I were surprised, no, we were stunned! Stunned I say! We got the instructions and headed for the car, stunned. 

In the car, I looked at Glenn, he looked at me and he said: A fucking cracker! We laughed and Bug played quietly with his Doodle Pro. We thought he would sleep. Shows you what we know.

Today, I was again in the Hospital walking its halls heading to Pediatrics. I hate going to Ped's in Hospitals, I spent some time there as a kid and I easily imagine all the heartache in the place. And I also imagine the hope, but mostly I imagine the Mom's and Dad's who resolutely sit by, helpless to intercede in the battle their child wages. All they can do is be supportive and strong and pray. A lot. I know how those prayers go. Too many prayers for too many children that should be outside running and playing and getting dirty but instead are hooked to machines and spending Christmas in sterile rooms. I looked at my boy holding my hand and I felt the same way I felt almost 6 years ago when I saw him the first time. Awe, love and fear. I adore this boy. He is is father and he is perfect to me. He is a handful and I would not trade it. Ever. But I must have answers, and I must find a way to ease these seizures.

There are some parents who would argue: It is who he is, accept it and live with it and make him comfortable, this is normal to him. We have accepted this is who he is, we have to put locks on the outside doors that he can't operate or can't reach, and we do it and we don't complain. But, when he wakes from a night of 2 or 3 seizures and he paces and cries because he is aching...people forget that ALL the muscles in his little body constrict. They tighten, as tight as they can, for a minute or two and then they relax only to do it again few hours later. By the look on his face, we know he hurts, physically hurts, we give him Ibuprofen and hope it helps. We may never know if it does, he may never talk and I accept that. BUT, I must do all that I can to alleviate the pain I see in his beautiful face almost every morning. This is my mission!  So I placed him on the bed and answered all the questions and watched him slowly start to get upset.

I smiled when he was upset, only because I know what will happen next and I like to watch people, especially women, react. I am cruel, sort of. When Bug gets enclosed, he will reach for and/or grab anyone he thinks can help him escape. Once he secures him/her in his very strong grasp, he will kiss and then tug. It is hysterical. True to form, every woman in the room, two BYU nursing students, Susan (the sedation nurse), Linda (his nurse) and the very wonderful lady that helps him adjust to being in the hospital (forgive me, her name escapes me), all got hugged, tugged and smooched. He makes people smile, even when he is grumpy. That's my boy.

After a great conversation with Dr. Osguthorpe, Bug was given the IV. I say that matter-of-fact-ly but...it was interesting. By the time they were ready for the IV, all of the people in the room had felt his strength. *I* am used to it and can muscle him back, but they were concerned. SO...I held him, Dr. O held him, the two BYU students held him and Linda had his arm, needle poised precariously above it. I joked; he has good veins. Linda agreed, to which my response was: You're welcome, they're mine. Everyone giggled and Bug wailed. Now, with 4 adults on him, he stood up. No joke, he STOOD UP, and I took him back to his knees but had to let go of one arm to do it which he promptly used to grab at Linda. She brushed it away as if she were a linebacker protecting the quarterback, she's that good. Oddly, the needle didn't make him jump, the catheter did and we all struggled to keep him still. I knew I should have climbed on the bed and pinned him but...no matter it's done.

A few minutes later, as I was holding him, trying to comfort him, he slowly started to quiet down and then, gently drifted to sleep. This was the part I was dreading. I had to leave the last time I watched him sedated. It made me too sad for some reason. But I couldn't leave ever again and I didn't have a choice anyway, Glenn had to go into work. It was so gentle the way he drifted to sleep, I was surprised and relieved. They called for the EEG tech and ten minutes later I watched him start to lock up. 

'Oh, seizure.' I said quietly. And three nurses ran to his side but I was there first. Linda called out time and I held him, reassuring him and waited for it to pass. I turned him on his side so he didn't choke on his saliva and watched him start to blink. It wasn't bad. Not full T/C. Dr. O came in a few seconds later but it was over. He asked how long. I said: less than a minute and asked Linda how long it really was: 45 seconds. Damn, I'm good. Damn...I don't want to be able to gauge time like that.

We may have missed it but at least we learned a few things: 

1 - The sedation did NOT hinder his brainwaves enough to suppress the seizures (sad but good)

2 - His brain was in pattern for seizure activity. Meaning we would get realistic and a probably VERY accurate look at how his brain acts when he seizes without actually seeing the seizure itself. (good and good)

Glenn came in as they were placing the electrodes. And Bug slept deeply, and contently with no more seizures. He did have sudden all over spikes, which is fairly normal for a youngster, but nothing that anyone there went: Wow, look at that. At one point, he woke up slightly and stretched, pulling 5 electrodes off in one swoop of the hand. They had to stop and reattach them. I couldn't help but giggle. Even asleep he wanted nothing to do with it. They tried a strobe light to see if it would kick off a seizure. He barely reacted to it. When it was over, he did NOT want to wake up, he was too content. We all tugged on him and petted him and called his name...and he slept. 30 minutes later, he woke up...pissed. 20 minutes after that we walked him down the hall to the amazement of the nurses. I guess most kids aren't that stable that soon after. He has GREAT balance. He was a little lethargic for a few hours and didn't eat much for the rest of the day, but he did fine really.

So now we wait until the 19th. On the 19th, Dr., Vincent will decipher the EEG for us and we will start medication. I am scared and hopeful. I have watched my happy little boy disappear into silence. I have pounded on that wall between us and I am beginning to see the small cracks appear. It won't be too long before it's shattered and he begins to understand, and be a part of the world around him. And I will no longer dread the dark but welcome sleep as renewal  and a break from the madness of active toddlers. Seems simple and yet..still feels so far away. 

He's a great Big Brother!

We were driving, all of us, and Taylor had her hat. She demanded her pink hat so she would stay out of the sun. So, we fetched it, she wore it and we went outside, got in the Cruiser and headed somewhere. Don't ask, I can't remember, life is a blur right now.

While heading to that somewhere, the princess fell asleep and her hat rolled off her head. Bug saw the hat go, stuck out his foot and stopped it. He brought his foot up, grabbed her hat and placed it back on her head.

All the women in the car: Awwww!!!!!

Bug: Smiles and reaches for a french fry.

Darling Boy

Can't get away from Mom!

The first time I heard John Lennon's Beautiful Boy (Darling Boy) I thought: How lovely. And I learned all the words.

I would sing it loudly, and with great emotion, whenever I heard it playing.
A few years back it took on a new meaning to me. Of course it would be that way, becoming a mother to a son. It is a natural emotional progression. And the song would make me smile.
And it was added to my iPod, of course, to sing and sing and sing whenever I felt like finding it. Two years ago, next month, it became something entirely different. I would hear it and sing it but I would feel a twinge of fear, almost despair that I would never see my son grow to manhood like John. Of course, it would be my son taken from me, instead of his loss of a mother. And I learned to live with the fear and I learned to enjoy that song again and began to gather pictures to create a video for my darling boy using John's words as my backdrop.

Falling asleep at the parade!

One night last year it began to change again. Every night became something to fear. The sun going down turned to dread and the song makes me cry. I can not sing it loudly, I push back tears. I watch him sleep and I listen for any sound that may warn me a seizure is about to occur. I wake at the slightest sigh, it is like having a newborn again, only this newborn is not crying for hunger, he is screaming before a grand mal. He is beautiful, he is so strong and I watch him sleep. I wait for the time in the night when I rush to his side to comfort him until it is over. And I pray, every night as he drifts to sleep., I pray that this night will be restful for him. He must sleep near us, we have to be there, 'just in case'. Just in case he has one and his lungs forget to expand again, and his heart does not slow down enough, or his tongue gets bitten. This is night time for him and for me. And John's song reaches into my heart more than ever...as I watch him sleep.

Beautiful Boy (Darling Boy)
Close your eyes,
Have no fear,
The monsters gone,
He's on the run and your daddy's here,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Before you go to sleep,
Say a little prayer,
Every day in every way,
It's getting better and better,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we'll both,
Just have to be patient,
Cuz it's a long way to go,
A hard row to hoe,
Yes it's a long way to go,
But in the meantime,
Before you cross the street,
Take my hand,
Life is what happens to you,
While you're busy making other plans,
Beautiful,
Beautiful, beautiful,
Beautiful Boy,
Darling,
Darling,
Darling Sean.

Ok, seriously...

We can't find the Magna Doodle. And I much prefer getting smacked with the smaller one than the one he has now. Damn the luck.

Cars Doodle Pro

 

Just to give you an idea, the big Cars one is 16.9 x 12.6 x 2 inches and the small one we can't find is 8 x 5 x 1 inches. Yeah, the big one sucks to take on the leg...or the arm...or the head. Oh and they aren't called Magna Doodle anymore...they are Doodle Pro™. Whatever.

Bug's Parade

Bug isn't a show off, but he loves people. He's not shy, or reserved in any way. The Doctor noted: lacks social boundaries. I say he can't talk, wants to be a part of the action and he's 5! And 5 sucks. When he saw his sister and Mommy walking down the street, of course he wanted to join in the walking. So, he and Daddy joined the parade with Magna Doodle in tow. He did eventually relinquish the Doodle, I was just too busy to know if he gave it away. I hope we still have it.  

Pioneer Days Children's Parade

Princess Taylor

I think it is fair to say that Dad has 'a thing' for July. Maybe it's that he is a 40+ year federal employee and a veteran, or maybe it's just the excitement of the celebrations themselves, but we always had fun in July.

As a little girl we use to do ALL the 4th of July celebrations. Morning Breakfast's with whomever is sponsoring the event, then carnivals, the sawdust scramble for coins, winning fish and then the fireworks. The absolute craziest year was the Soccer exhibition I played in while it was 106 degrees outside. Yeah, that was insane. INSANELY FUN!

So it was no wonder that they came to California for the 4th. And, it was lame. Not much to do. Did the parade. And the fireworks. I am used to fireworks in an open park, maybe a field, sometimes a Stadium but in Valencia, CA they shot them off the top of the Mall parking structure. We sat in the Target Parking Lot watching them. It was still fun, but no fish. Damn.

The Maughan Family and The Parade

We vowed that the 24th would be better. In Utah, they celebrate the settling of the Salt Lake Valley on July 24th, 1847. They have the Day's of '47 rodeo and parade and prior to that, Ogden celebrates Pioneer Days. It's a week full of events: Rodeo's, luncheons, sales, and parades. Kicking off with the Children's parade.

Now, we did the Children's Parade several years when we were little girls. Decorating our bikes in red, white and blue and riding like little maniacs. It was a sight to behold in 1976 for the Bicentennial. Scary. But Cool. And this year, we didn't sign up, we were too late. I told Tay that the kids dress up and decorate their bikes and she could wave at them, She said: And see the princesses and blow them kisses! A light bulb went off and the next morning (the parade morning) I picked up Megan, who was visiting before heading out to Amber's, and we bought Tay a brand new Princess Costume.

We were a little late for the parade and ended up at the starting line. It only made sense for us to walk on. So we did.

Daddy and his little Princess

 She looked so cute and Bug wanted to walk by Mom too. So, midway through we swapped. Daddy with Tay and Mommy with Bug. She was the belle of the parade and started to get shy. She would wave, but not blow kisses. We walked 5 blocks and it was a blast. The Ogden Police Department covered the parade and they were fantastic! Encouraging the kids and laughing with them! Can't wait to do it with her next year! Oh yeah, we will be back!

 

Bob's Big Boy - Burbank Landmark

 

Bob's Big Boy exterior

Forget all the celebrities that have passed through the doors of this, most famous, of Burbank's landmarks. Forget the movies that have been shot on location. Forget that the food really is unremarkable, no offense intended, but they don't serve a killer bolognaise. I mean my Chicken Fried Steak was yummy but forget that too. Last night was all about Bug.

We went to the Computer Fair, looked at RVs (yea, we may have toddlers but we ARE still getting old) and then we decided food would be good. Debbie suggested Bob's and I jumped! Love the atmosphere of the place and I love to hear Debbie talk about all the people she has worked with, and has known in her tenure at Disney, that have graced its booths. I did not expect what we received.

Bug ate well. He carried in a bag of Dorito's, don't judge me, and I had little hope for the dinner. But we tried and he ate. He ate a lot. He had salad, and some bread, he had fish and some spaghetti. When he was done, he got bored. Very bored and wanted OUT of the highchair. Out in the worst way and he beseeched all who walked within his grasps to assist him in his escape. He reached out, time and again, and snagged, time and again, waitress after waitress, after bus boy. And, as if Marisol, our waitress, wasn't wonderful enough to him, hugging him and holding his hand, every one of the personeel stopped and talked to him. EVERYONE! This, had never happened before in California. Of course, most of the staff are actors or actress in training and NOT from California so I shouldn't have been shocked but still...there I was...almost in tears I was so thrilled!

They all asked him questions and when I explained he didn't talk, they said, to the person, oh that's OK *we* can talk to *him*. And they hugged him as he tugged on them to release the harness. They gave him a balloon and one for Taylor. They gave him ice cream, and one for Taylor. These things bought us some time to finish, it was heaven. And when we finally relented, and let Courtney take him from the chair, he tried to run away. But she was too quick. She had a grip on him like any linebacker on a Quarterback I have ever seen. He couldn't shake her. It was beautiful.

The girls walked out with us and gave us their phone number. They were so taken with the kids they offered to babysit. So much for New Yorkers being rude, huh? They were the sweetest girls, maybe a tad naive, but still it was appreciated. I told Glenn in the car, that I will only eat at Bob's. The 25 miles trip is more than worth it! Of course that's not entirely true. Not entirely but pretty close. Thank you wonderful Bob's Big Boy's employees! You made my year!

The 14th Anniversary

14. Years. 14 years. Glenn still thinks it's only the culmination of 13 and not a full 14. I say this every year: 0 - 1 is one, one complete year, you are just trying to get a pass on (insert whatever year is next). But ya, another year bites the dust.

And we had fun. We usually do. We took the kiddos to the beach because, well, we all might as well enjoy it and we don't have a babysitter.

We left a little on the late side, it's an hour and half drive to the beach we prefer. Taylor fell asleep and Bug was just Bug and lovin' the ride. he was clapping and yelling, He was excited to be moving.

When we got there the sun was setting and the lighting was gorgeous. We let the kids run and be kids, until Bug took me to the car, signaling what he thought was the end of the beach time. But we piled him in the stroller and walked the pier. And we looked and the ocean. And we appreciated what we had. And then we began to work on 15.

Pictures and video to follow.

The Funkies

So, what do you do when you have the funks?

I have been down and out for a while now and this last week didn't help much. I thought it would be a pleasant time with family and it turned into so much less than expected. Made the funks worse. So I thought: I will watch videos. And I did.

All I could think of? I want Bug to have friends. I want him to be able to communicate what he wants. I want people to interact with him and not ignore him. I want him to never be hurt. But these things may not happen and I have to resign myself to that. He is beautiful and happy, regardless. He is sweet and cuddly and a million other wonderful adjectives, maybe a few not so wonderful too, but hey, he is 5 and 5 sucks.

I moved on for a second. A split second and thought: too bad I won't have more children. I really thought I was going to have more but this past week made me think it was a bad idea. It was an idea that I seemed to will into being and that isn't fair or smart. Maybe the loss in August was the universe telling me to be done. I really think I will listen and try to enjoy what I have, and what those I love have. But this thought also makes the funks worse. I haven't told Glenn, mostly because I am sure he won't really care what my reasons are. He will just try to talk me out of it because he knows I wanted it. But, I see what the future may look like and another little one may not make that future any brighter, in fact, may just make it more frustrating.

I think I need to move on to the damn haircut. :)