Sunday, August 16, 2009

Ugly

The great McD's cold has run it's course. Tay is better, Bug is better, I am not. This is what happens when my immune system goes on high alert for too long. I wake multiple times a night gagging, yeah it's gross but you try living it. A few more days of this and I will wake up puking. I TOLD the Doctor this was going to happen, I ASKED him to suppress my immune system and get rid of the sinus infection BEFORE I got something to compound it and I was told to go home, take it easty, snort some Afrin (which I had sucessfully weaned myself from after a few years) and do some OTC medications to relieve the symptoms. And now, NOW I am this close to puking multiple times day, I have a cough, sore throat, my ears hurt and I am dizzy. Sounds like fun doesn't it?

So I am going to see my allergist again and give him ONE more chance to help me out. I will be ugly about it. Very. I will make sure I take NO OTC or prescription meds, I will make sure he sees me in all my raging sexiness. IF he doesn't give me an antibiotic and immunosupressant, he will not be my Doctor anymore. Enough is enough. So let the ugly begin, actually, let the ugly stop. I am really pissed.



Leia Mais…

Tuesday, July 28, 2009

Does yours do this too?

When I spill a drink, or whatever, or when the children do and I am nearby, I curse, get a towel, clean it up, decide how much effort it requires to look passable and then go back to whatever I was doing. Doesn't matter who is there with me, I just clean it up. OK, I make Tay help if it was HER drink or HER fault.

When Glenn spills a drink, or whatever, or when the children do and he is nearby he curses at ME to HELP him clean it up.

Anyone else own one of these?

Just curious.



Leia Mais…

Tuesday, July 21, 2009

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. 



Leia Mais…

Sunday, June 14, 2009

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.

 



Leia Mais…

Monday, May 18, 2009

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.

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.

 

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!

 

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!



Leia Mais…

Wednesday, April 29, 2009

Tay's 4th Birthday!

Taylor asked for a Butterfly Birthday Party. Sounds fun. But everyone that could be there, wanted to be there and her Birthday was on a Tuesday and that meant, no one she wanted there would be there for very long. So we planned a Chuck E. Cheese birthday on the Saturday before her birthday and a small get together on Tuesday. We bought a special birthday dress, shoes and wings. Every 4 year old girl needs wings for her birthday. I think.


Saturday, April 25, 2009 

We invited our Neighbors, The Schmidt's, and their 4 children to attend the Chuck E. Cheese Butterfly Princess Party /*-with us. All together, there was 8 adults and 6 children. Good ratio I say.

We made some Butterfly / Floral arrangements (thanks Grandma Susan for the guidance, she KNOWS what kids will like) and Tay and Cassie wore Butterfly....stuff. The Chuck E. Cheese folks had ALL sorts of available swag. And we got the all sorts of swag. The kids loved it and the big people could just sit back and let the kids love it.

Some may say Tay is spoiled and she is, but why not? As long as we keep things in perspective and reign her in why can't she have her Barbie bike at 4? Because she got one, and she got a Barbie Scooter, thanks to Nana and Papa. And that thing is more popular than the bike (although Bug loves the bike and rides it downstairs). She got a few other things but really, nothing was as important to her as having her friends there to run around with. She was on fire, running and laughing. It was lovely and I will do a Chuck E. Cheese party again in a heartbeat!

Aunt Cheryl made Tay a Butterfly cake and we left a little before 10. We were supposed to leave at 7:30. Oops. But we gave them a good tip and they didn't mind. Go figure.


Tuesday, April 28, 2009

Her official birthday. Smaller, at home, much shorter time frame. Nana, Papa, Cheryl and Scot came down and again, we invited The Schmidt's over...to help break the Pinata. Yep, Pinata. Turns out, they are professionals at breaking the Pinata. Us? Not so much.  

Tay opened the rest of her presents, we broke the Pinata and she had her Strawberry cake that she had picked out a few weeks earlier. Seriously, she had been planning her birthday for months. MONTHS. It was cute and starting to get mildly annoying, but she was thrilled with how it all worked out and we were thrilled to have a 4 year old girl living in our house. Now, let's hope she makes it to 5 before I sell her.


Happy Birthday 4 year old Girl! 



Leia Mais…

Friday, April 17, 2009

Sun worship

Maybe I'm the odd man out here, but I really do not like sunny days all that much. Cloudy days with a bit of rain to them, that's more me. When people say: Hooray it's sunny! What a beautiful day! I think:

Great.

I really do prefer clouds, a little snow. It's so much easier to get warm than it is to cool off. Getting warm can involve other people, getting cool screams: stay away you'll make me sweat.

I spent a lot of my early life outside in the sun, playing some kind of sport. I hope my children will want to do that too, it taught me a lot, but the sunburns and then stinkiness of it all, I could really have done without. There is something different about sweating from exertion and sweating because the sun is beating down on you. It's more rewarding when you have earned it, and the cool shower is so much more invigorating.

Yeah, gimme some fog and lightening storms, pepper me with only small doses of sunshine and I might just be a lot more even tempered.



Leia Mais…

Wednesday, April 15, 2009

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.

 

 



Leia Mais…

Tuesday, April 14, 2009

Tay's teeth redux

She was nervous. Only about the needle. Having had her Hep A vaccine (don't get me started on WHY that particular vaccine is a sham) only a few weeks ago, the memory of the needle in her thigh was very fresh. In fact, since that shot, every few days she asks if I want to see the hole in her leg. We told her that if she had to have an IV the needle, it wouldn't be that bad and it would only feel like a little pinch. Didn't help. On the drive there she asked and asked about the needle and I assured her that if *I* wasn't nervous, there was nothing to be nervous about, she would be fine. She had expressed concerned about 'being put to sleep' earlier in the week. It was funny, and she was relieved when I told her not like a sick doggie.

We got there spot on time and signed her in. We were called back almost immediately and thank heavens there was TV with Over The Hedge playing since we waited almost an hour and a half before the Doctor showed up. It gave us time for her to relax and put on the new shirt the Surgical Center gave her. Pink shirt. Good call. She saw a plastic wagon across the hall from us and asked me what that was for. I told her I wasn't sure but maybe it's what they use to haul kids and/or things. Oh, was all I heard.

When the Doctor got there, he told her what he needed to do to her teeth and how she would wear a mask, blow up a balloon, and then get a Popsicle. Her face lit up. A Popsicle? That was worth it. She then queried: No needle? He looked at me and I explained, he smiled and said: No needle while you are awake. Luckily she didn't catch the "while you are awake' part or I would have had  A LOT more explaining to do. Then the anesthetist came in a explained about the mask again. She was cool with it, told him she liked balloons and was really good at blowing them up. He grinned and then offered her a ride in the wagon...she jumped off my lap and right into the green thing. Didn't even look back, I had to follow her a bit and tell her good luck, love you and I will be here when you wake up. She smiled: OK, bye!

The waiting was tough. Although I have been through all of it with Bug, it does NOT get easier. I texted, emailed, surfed the web, did whatever I could to keep myself occupied for the hour and twenty minutes that it took to see the Doctor again. He assured that all went well, that she was a complete joy and very sweet. She was in recovery and he walked me to a room to wait for her.

While I was waiting, I heard a cry, it sounded a little like Tay and since she would be groggy, I had no idea what she would be like so I went to see if it was her. Now, when Bug has his tests that he needs to be sedated for, we are ALWAYS there immediately following the procedure while he is waking up. Not with Tay, not this time. When I found her little body all curled up with a big hospital blanket on her, she had two nurses by her. They were saying how cute she was and then they saw me and asked me what I wanted and told me to go back to my room and wait. I was a little stunned and then asked them if that was her crying...they told me no and asked me to go back to my room. I did and was a little stunned. I kept hearing a cry and wondered if it was her...but I waited.

After about a half hour they brought her to me, asleep and wrapped up. She opened her eyes and smiled when they placed her in my arms and I cuddled with her tightly. We sat there for another 40 minutes and then a nurse came to check on us...Tay woke up...I told the nurse all was well and she left. On the way out the door Tay said: I didn't get my Popsicle. A few moments later...Tay got her Popsicle and ate the whole thing. It's an old trick to get the child to wake up. The joy of the Popsicle itself is emotionally gratifying and then the coldness of the Popsicle is physically a bit of a shock to the system and wakes them up. She woke up. She woke up a lot and asked when we were going to the Hello Kitty store.

We picked up Megan, went home and ate, Doc said she could eat whatever she wanted and so she did. We ran to Salt Lake to pay rent, get stuff at Joann's and hit up the Hello Kitty store on the way back. She was in heaven and now has three Hello Kitty sisters: Hello Kitty, Daisy and Baby Amanda respectively. She was amazing, and I am in awe of her.



Leia Mais…

Monday, April 6, 2009

Tay and her cavities

It seems that no matter how careful one is the children WILL eventually get cavities. And Tay did. And she needed

to have them repaired. And Tay did.

Although she was VERY good at the Dentist's office a few weeks ago, she would need to be sedated in order to get it all done in a timely manner. So off to the Riverwoods surgical center we go.

She was nervous about the needle. The I.V. that is. But there was no need. She was sedated by mask BEFORE the needle. Yippeee!!!!

There are all sorts of details I will provide but I have to do that later...gotta run out again. She did well and her teeth look lovely! And she got to go to the Hello Kitty store and go wild. Ugh.



Leia Mais…

Thursday, April 2, 2009

Phone hate and redemption

Hate my cell. I have for a while. Piece of bad cell phone..ness. I won't tell you which one, doesn't matter and I don't usually bash products openly. MY experience is not EVERYONE'S experience. The SERVICE I will complain about openly and with great zest. After the phone call I missed turned into a voice-mail message 2 hours later...I was officially done!

Now, I talked to a few other Sprint users who have been having the same problem here in Utah, so no new phone would do, MUST change carriers. Glenn has a Blackberry on TMobile for work and when he is in London, it's seamless. Bonus for TMobile. AND every time I try to log in to my Sprint Account on-line it tells me I don't exist, that my phone number is NOT one of theirs...well it won't be very soon. I have been with them for over 10 years and at least that many phones, but their Customer Services BLOWS.

I had TMobile for business a few years back and they were VERY helpful and their rates where fabulous! Another Bonus for TMobile.

I am a pretty straight forward cell user. I don't care if I waste minutes, I don't care if I pay extra for going OVER my alloted minutes, BUT I DO care if I can change my services without signing in blood for two more years. TMobile lets me change AND lets me add a phone without a new plan unless I need one. This may be a limited offer but still...another Bonus. With Sprint, if I bought a new phone for me but didn't get Glenn a new one AT THE SAME TIME, I had to sign up AGAIN when I DID buy him one. So, I would sign the contract for my new phone and then a week, or a month later, sign another one when I bought him a phone. Dumb is an understatement.

I hate ATT. For apparent reasons..anyone remember Ma Bell?

Verizon was too expensive.

TMobile has the G1.

 

And now *I* have the G1. It's sexy. Turning out to be the best phone I have owned in a LONG time. It has all the things I need and more. I can call people with it. :) I can check my Gmail and launch my Chat, I have maps and internet, unlimited text messaging with a data package that is still LESS than my Sprint package. Cool. Sprint charged me PER message and I couldn't add a text package when my friends and family started hitting me with texts, unless i signed a NEW contract. I have a G1 and a new service and I couldn't be happier...NOW if I can get my number transferred without a penalty....



Leia Mais…

Monday, March 30, 2009

Truth, justice and nothing good

It seems that everywhere I turn lately I am reminded of how I have failed instead of the ground I have gained. It's very tiring and emotionally draining. Once in a while it's nice to actually FEEL like I've done something valuable for someone else or to feel like I can do all the things everyone else can do. But, I have been tormented lately by my shortcomings, tormented by my own hand and by little things I read INTO what is happening and, also, by real comments made, not imagined. When did I become so delicate? When did I require this much validation and support? Because this is out of character, it troubles me even more. Makes me look at myself with more scrutiny and more contempt and yet. I lack the energy to change any of it. Some may call it depression, but I disagree. When members of my OWN FAMILY make little comments, well then, it really is something I have to examine.

I suppose, I am lacking in a lot of ways as a Mom. I am lacking patience and selflessness and dedication. I *thought* I had those qualities but I must not really otherwise the people in my own family wouldn't correct my children. Wouldn't have to remind them to say thank you and please, even though Thank You were Tay's first words and she does say them pretty regularly. There are people that have actually told me, and really do believe, that all I have to do is just be more consistent with Bug. I feel judged, I feel ignored, I feel lonely and isolated. I hate it.

The frustration from chasing around the 6 year old and turning off the lights he turns on every few seconds, and from sweeping the floor for the 3rd time in 3 hours...that frustration has no words. It has no voice, for when I tell my Doctors that he is bouncing off the walls, they ignore it and ask about his seizures...his seizures are bad enough but then his ADD/ADHD and OCD aren't even being discussed. And this, is my fault, I am to blame, I should be screaming and yelling and begging and crying for someone to help. I should be doing all sorts of things that, apparently other Mom's have done. That I have not.

People look at Bug and see a pretty little boy. They don't see any CP, or Downs, they don't see a cripple, or a child with apparent issues and that makes it so much more difficult. Even my own family thinks he can do more than he can. I am beside myself and feeling like a total failure. And there it is. In all it's glory. Where it HAS gotten better, it has also gotten worse. 

I will, most likely, overcome these feelings, probably later than sooner, and I will do what I have always done: Go it alone, bottle it up, because who really wants to hear this from someone that is mostly happy? Even now I write this and only a few people will read it, a few that are genuinenly good people who would help if they could. But I don't expect anyone that can ACTUALLY make a difference everyday to read this, because, they don't. So this is my way of venting. It's as bad as it gets for me. And nothing good will come of it. I will do what I have to do, because it is what I have always done. I will be there for everyone else, sharing their triumphs and their joys, being judged by them in the process only to be left behind. It is the way it has always been, and so I move on.



Leia Mais…

Friday, March 20, 2009

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!



Leia Mais…

Thursday, March 19, 2009

The need to create

I need to do something, to create something, to paint, to design, to build. I need to do something. I can't do anything because Bug will get into what ever it is I decide to create. The desire to create, very strong in this one at the moment. Maybe I'll paint Bug's room. While he is at school tomorrow of course. I have to do something.



Leia Mais…

Saturday, March 14, 2009

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.



Leia Mais…

Friday, March 6, 2009

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.



Leia Mais…

Wednesday, February 25, 2009

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.



Leia Mais…

Tuesday, February 10, 2009

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!

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

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.

 

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

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.

 



Leia Mais…

Monday, February 2, 2009

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.

 

 



Leia Mais…

Thursday, January 29, 2009

Edumecation

Oh we are all about school this week. All about it.

Bug will, most likely, be starting school on Tuesday.  We will meet with his teacher on Monday to discuss goals. He will be put in an Autistic Classroom for evaluation and then we will re-evaluate at the end of the week or two weeks or a month. Glenn and I both think it will be the end of the DAY. :) But we will see. I am concerned but I suppose every mother is. He is so sweet and....determined. I hope he isn't too bossy, he can tug like no one I have EVER known. But, this will be exactly what he needs, it does not help him being home with me, it only feels better for me. I am able to protect him at home, I am able to accept or not accept what he does with his poopy diapers. And I am to see him whenever I want, to cuddle with him when I need a cuddle. Because, he is the sweetest little man.

Tay brought home the flu or some type of other crud and didn't go to school Wednesday and probably won't go tomorrow either. Poor thing. But she was OK about staying away until she was "all better", UNTIL she saw the picts of her first day. Game over after that. And then the game of negotiation began. It played out slyly. She acted like it was no big deal after I told her no. Gave it a few minutes and then said:

Mom, I need Afrin.

I said: You can't breathe?

She responded: Nope. (sniff, sniff, cough, cough)

She has had Afrin once before and it helped her sleep so I gave her a little. After a few minutes:

Well, I have my Afrin, I can go to school now.

After I stopped laughing, I said, as if it mattered : Afrin just masks the symptoms, you are still sick.

She sniffed again and said: Nope I can breathe better, I can go. (cough, stiffled cough)

I told her: Ya, no. NOT gonna happen, you are still sick and we have to think about the other kids, It's when sick girls and boys go to school that the healthy kids get sick, so you have to stay home until you are not coughing, sniffling or have a fever.

She said: Oh, OK Mom

And went into the family room to watch SpongeBob.



Leia Mais…

Monday, January 26, 2009

First Day of Preschool

Taylor has been begging and demanding to go to school for, oh, almost ever. I called on Wednesday and got her in on Friday. It was a long wait.

But Friday arrived, as we knew it would, and we got her ready to go. Her excitement dwindled, I can only surmise, replaced by a small amount of fear, but still she jumped headlong into picking out her outfit and taking her shower. Oddly she wore red. But I suppose it is a variation of pink.

Mom and Dad were here for a Train Show Dad was helping in, and so Nana stayed home with Bug. Glenn was a tad under the weather and worked from home but still dragged himself out to see his little girl off on her big day.

We left in plenty of time and arrived with a few minutes to spare. She sat

down with us at the front desk and then we walked to her classroom to meet her first teacher: Mrs. Johnson.

Mrs. Johnson was VERY polite and schooled us about the preliminaries, whilst Taylor played, waiting for the rest of her class. She was unusually quiet with everyone, all the while, watching everything. After a few minutes she ran halfway back to Glenn and I, gave us a thumbs up and returned to her playing. We laughed and took it as: It's all good, you can go now. So we did.

We went up front, paid her dues and then went home to wait. Two hours, no Taylor. It was VERY quiet. And Bug loved every minute of it.

I went to get her and she was reluctant to leave. In fact, she told me she was not going because she wanted to paint some more. So I went in and took a few pictures, had her show me her room and talked to the rest of the children, who, had gathered around once they saw the camera :).

After a few minutes, and a promise to come back on Monday, we were able to leave. On the way out, she saw a play kitchen. Uh oh. We had to pause to play, or should I say *I* had to pause while *she* played. I thought she would regale us with her tales of 'preschool - the beginning' but she was surprisingly quiet.

 

Nana and Bug came with me while Daddy stayed home and napped, did some work, and medicated. We went down to get Megan and still, no stories. On our way back, she slept. AH HA! It was at that moment I knew I would hear her stories, after she awoke. And, we did.

She learned where to sit, she sang her ABC's, she made a snowflake, complete with sparkles, because sparkles make everything better, and she also told us how she learned to raise her hand before talking (OMG) and how to stand on the X (still not sure what that one was about but I am positive I will find out eventually). She said she had a blast and couldn't wait to return. It was good to see her dream fulfilled. And then she asked when she was gonna go to Ballerina School.

Only Tay. :) 

 



Leia Mais…

Wednesday, January 21, 2009

Great Day!

Today = Great Day!

Tay will be starting Pre-School on Friday! VERY nice woman signed her up over the phone since I have to replace the rear passenger roter and brake pads before I can go anywhere.

AND Bug will be meeting with the fine folks of Ridgeline Elementary School next week for us to go over the IEP and get him in school! So thrilled, so very, very thrilled! He is finally ready, we think.

And TWO dear friends that I hadn't heard from in a while touched base today! They must have sensed I needed it...or it's just blind stinking luck. :)

But I am really bad at the PSP. Tay keeps reminding me.



Leia Mais…

Friday, January 16, 2009

Christmas picts..LATER...for now..

Lately, I have heard A LOT, how life is not fair. How one person gets what they want and I don't. I hear Why Why Why? And I have the juvenile...but very real answer:

Because.

No deep insight there is there? It is what it is and we can obsess about why it is that way, and ponder what message is there to be learned, OR, and here's the difficult part: we can just accept it and move forward. I like that. I like accepting that sometimes there are no reasons, and sometimes there are. We look for them, we build the puzzle but sometimes, just sometimes, you lose one of the pieces. It didn't come in the box, or puppy ate it, but either way, it's not there.

Does that mean that puzzle is a waste? That you will never find that piece? Maybe. But once you search for it and give it your all, just realize that you can't find it at the moment and go about your daily business. Because we have all done it, searched and searched and couldn't find something, and then, when we least expect it, there it is. Sitting in plain view as if it was never missing.

And sometimes, we find it in a pile of shit. Graphic. Sorry. But in all the feces, there is something valuable, or that we perceived had value and there it is. Surrounded by crap. And then puzzle is complete.

So, sometimes the answers you are looking for can never be found, and sometimes they are found when we least expect them, and then again it might be in the trash. But if you really care about the outcome, you pick it out, clean it off and use it to your benefit.

LOOKING for answers is one thing, building your life and your happiness around finding them is quite another.

A very VERY wise woman once told me (via my Mother since I was bedridden): God himself could come down and explain why things are the way they are and you STILL wouldn't believe him, You would STILL not like the answer, because you had to suffer. So no matter what the reason is, it will never be good enough. I always wonder if she lived very long after that. She was 30+ years old, had 2 or 3 children and had cancer. I, was 15, and crying about being in the hospital. I didn't CHOOSE what happened to me and I do NOT think I was being punished. I was 15 for heaven's sake. And I did wonder why for a day. ONE day. And then, I looked at the drains in my leg and realized that I was wasting my energy on something that I would NEVER have the answer to. Ultimately it didn't matter HOW I got the infection, did I carry it in, was it the hospital, who was to blame? Who? Eh, who cares. It happened, and I had to move on. Once I focused my energy on getting better, on beating the infection, on getting out of the hospital...and once I had gone through withdrawals from addiction to Demerol (not ingested by me, shots to alleviate pain) I was out of the hospital and on my way to recovery.

I put in 3 days a week in PT. Three LONG, PAINFUL days a week. And had two more surgeries but at the end of 8 months I was running on the Soccer field again. Against the advice of my Doctors, but I was doing it. And I never wondered why I was able to run again. I was grateful I had worked to achieve it and had the support of my family to help me achieve it and I NEVER, NEVER blamed anyone or anything. I took my lesson: Perspective. I took *that* lesson and the ability to put a value on every little thing.  To gage what was important in my life and what wasn't. And I never thought again about fairness. About why it happened to me, because it didn't matter. What mattered more was what I did with it. What manner of a human being it would make me. About how sweet life itself really is, not just what I want and can't have, but that I breathe.



Leia Mais…

Saturday, January 10, 2009

I guess I should talk about Christmas

A few folks have asked me about Christmas...where are the picts? Did the kids have fun? What did they get? So I respond:

The picts are on my computer. Some are cute, some are scary.

Yes, Tay had fun, Bug wanted to eat.

They got everything they wanted EXCEPT Tay says she NEEDS two flying horses. Maybe for her birthday...:)

Will post the picts and all the gory details later...it's coming I promise.



Leia Mais…