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…