September fall

It had been a clear day, the sun's was radiant. You can feel it scorching down on our over-heated body. Tim was not doing much at all, but he was sweating as I lifted him to carry him to the van. I was already feeling the thirst in my mouth. I needed some cold water to satisfy my weak and tired body.

I scooted his power wheel chair up into the back of the van. Locked the front door and jump into our van. We were out of gas, it would be our first errand. I had to take Tim back in to see his doctor. He was not doing well. He still had problems coughing and breathing and was still not eating solid foods. I was feeling exhausted but at the same time very worried about his condition.

CJ had called early in the morning to remind me of my appoitment with her. The day before had been just a quiet day. Tim was feeling weak, exhausted and breathless. I had made an appointment to see Dr. N again. Just to be on the safe side. I had gone to see my own doctor and asked again to for a sleep study. I finally got the referral.

I was awakened early this morning by Tim. I could hear him in the background asking me if I was ok, as it seems my breathing was not on track. I was having another one of my many horrid night terrors/nightmares. It was just to scary -and breathless.

After filling the van up with gas, we made it to his doctor appoinment. We waited nearly an hour before we saw the doctor. She was concern and thought he should go back into the hospital. She could still hear the crackling in his lungs. His O2 was like about 92-96 but not his normal 100%. She wanted him to see his pulmonologist right away and see if the bipap can be adjusted.

I had hoped that today he could go back to classes. He wanted to try at least one class. But I was afraid the way he was and if he needed the bipap it would not be there. So we figure we would wait till maybe Thursday and see how he does. The doctor figured it may take several weeks before he gets energy back. He can't wait that long to go back to classes. So hopefully tommarrow we can start some of the classwork.

I finally saw CJ today. I couldn't beleive that she dyed her hair autumn red. I was use to her being gray or blond. It gave her color to her skin since she has been so ill. I feel for her. A subject came up- my mother's death aniversary. It had been 37 years since my mother was murdered. It was a day I will never forget. My mother's death was the result of a domestic abuse. Her 34 years of life taken so short. Leaving behind 6 children. I still can't beleive or understand it all. For the last 37 years I have tried to find out the truth of that day. Only 3 people know what really happen that day, and only one of them is unable to voice it. My youngest brother witnessed it and although he may keep the deep secretes of that day, it has affected him tremondously as an adult now. Part of me lives with the guilt of knowing I had the chance to go into her room that morning to give her that last kiss. If I had known that she would not come home and that would be the last time I saw her, I would had done what I usually did every morning. But that day, I chose not to. I chose not to go into her room and not give her that (last) kiss. To me, it was the curse of the day. Perhaps...maybe it might had prevented her death.

Over the years, I 'v heard so many stories of what happened that day. It seem like every adult of that time told me something different to what happened. No one was on the same page. No one could tell us what happened. So one day, in the early 90's, I went to the court house and I pulled out the records and read the police reports, the Medical examiners report and the witnesses report. It was then, I knew a conspiracy was going on. For now I was reading the 5th version. My mother was brutely murdered and no one wanted to admit to what really happened. I suppose by lying, they thought they were protecting us.

My father didn't allow us to go to her funeral. His mistake. As no closure came to me even if it was a closed coffin. I needed that closure. As it made it so hard to accept or belive she had died.

When my maternal grandmother passed away in 1998, she was laid above my mother. I could remember my brother, Danny, like me, was struggling to see our mother's coffin. There was that need of connection. There was that need to at least try to accept that loss. There was that need to ...let go.

Every year, it has been the ups and downs of accepting my mother death. I deal with it differenly each year. Some years, its just another day, while other years its a day of grief and pain. Where is she? Why isn't she here? Why can't she be here to enjoy her life and her grandkids lives.

The sun has set now. The warm evening reminds us of the Florida fall. The trees have not yet changed colors, but its coming eventually. Its time to rest the mind, the thoughts, the feelings, the pain. It's time to ....move on.

Its another Sunday

It's already Sunday night and I feel like I still have alot to accomplish. I' m just so exhausted. I know Tim is as well. He is just sleeping more n' more. He seems so physically and mentally exhausted. Its seems like that he has no energy to get up or do anything. The bi-pap is not really helping. He still can't eat (but the chicken noodle soup and cream of wheat is helping abit).

I decided tonight we are eating out. So I ordered him their chicken noodle soup and wonton soup from the chineese restaurant. Their soups are so good. And for some reason, my computer that he is using (since his still out in the shop)is no longer working. Its like the electrical part of it has died. So here is another expense.

nothing much more happened today...and since his puter is not working, I need to get off so he can try to get on.

I try again later. ..hopefully.

Just another Saturday

Sometimes life takes us to places that we least expected. Often it also takes us to people that can be so inspiring as well.

Ok...I cried like a baby Thursday night after watching ER. I'm sorry. But after watching this show for nearly 14 years (or seasons) now, you sort of do get to know each character -their ups and downs, their flaws, their happiness, their sadness and then our own sadness when one of them (character) dies. Yeah, you can grieve for the character. I know they are not real people but the acting is so good and so real, you become part of them. Ok...call me crazy, but I can bet there are many many out there wo feeel the same thing as I do.

I have been looking forward to the Mom's Night out and the scrapbook day for a while, believing that this one event I will not miss. But my procrastination of doing laundry made it impossible. Plus Tim is having difficulting breathing, so I chose to stay home. Tim has been home since Tuesday and yet his breathing is not the best, even after being on the bipap, which I think at times is more trouble than good. The "farts" from the masks and the alarms that go off. I'm feeling the anxiety that he may be on the trach soon and on a ventilator and I'm not sure ready for this at all. I know its the one thing that will save his life. but its just scary of all that is involve.

Before leaving I decided to check the mail. Finally the PIN came in...for one of the debit cards I finally got. I got two. Not sure why. Then I discovered the bank failed to close of the accounts that I know I had closed. Why is it still open? Why is this pin for a debit card for an account that is suppose to be closed. What is this bank doing?! I knew I needed to make a call to see what is going on.

BTW...someone won the lottery from Wednesday. I have not checked to see if it is me or someone else. I should check it...but I'm afraid to. Afraid because I know I most likely lost....but afraid because of the chance of winning and not knowing what to do with myself if so. LOL....I know it sounds stupid and crazy, but someone has to know what I'm talking about.

Today I drove through the University to get to the Scrapbook event. There was a game going on at the stadium. There were so many people and cars parked every way. I had not been down that area when there is a game...thankfully the traffic was slower then the weekdays. I found the library and I found the room. There were already two mom's there. I was late by 30 minutes. I had plan to bring Tim with me but at the last minute he decided to stay home. It was nice to get to know a few more mom's and to share stories of our scrapbooks. We decided to pack up early so that we wouldn't miss the game traffic. Thankfully, there were none. I stopped by Wendy's to get Tim a frosty.

By the time I arrived home, I was so exhausted. I just wanted to nap. I really wanted to catch up on a show -it had a marathon today. But I was already to late and would had missed the first five episodes which I had already originally missed. So I napped. and I napped for a while.

welll....I would like some more hot chocalate. So I'll go for now.

A case of Blog Phobia...or anxiety.

It had been a long few days for us. Tim's swallow test came back negative. It was just awesome to watch the swallow test. You can actually see him swallowing and it go down his throat. It was a rough day. The doctors were debating to let him go home since he was still having difficult swallowing and breathing. The last it seem that he would stay one more night. It was just debatable. I decided to go down for sushie. By the time I got down to Enstien to buy some sushie, they were closed. It was not 4pm yet and they were closed!!! Its bad enough they did not sell their frozen drinks/smoothies but to be closed by 4pm on a Tuesday?!!

By 5pm, we were packing our bags and loading the van - heading home. Which shocked me because I thought this was one more nighter to be on the safe side. Look like they thought it was safe for him to go home. By 6:30pm, we were home and with our smoothies and sushie. For some reason though, the one packege of sushie did me no good- I end up throwing it all up. I was shock. It was one I had not had before (California roll). I wasn't sure what cause me to throw it up, all the coughing or the sushie itself.

We were so tired, it didn't take us long to go to bed. We slept in most of the day on Wednesday and by mid-afternoon, I had gone to pick up photos for scrapbooks and went grocery shopping. and by the time I got home, and given Tim his g-tube feeding and chicken noodle soup, I was so tired I conked out on the sofa. My body was just exhausted. My mind was exhausted. I slept until noon today and realized Tim had his doctor appointment at 1:30. I quickly made myself a sandwich and got Tim up and changed into clean clothes and was out of the door by 1:15.

Dr. Novak was glad to see Tim in her office and not at the hospital. Come to find out she saw Tim at another time in ICU but she said we were both sleeping when she came in. I'm not serprise. She decided to up his gtube feeding to 14 hours and we adjusted the bipap to a different setting. We also learned that they were close to ventilating him. So he was lucky he was healing better than expected.

I realized tonight if Tim had to be ventilated for the rest of his life that we would have a major problem. Our van is not wheel chair accessible. It would be major difficult to transport him and his portable ventilating machines. As it is, I have to lift him out of his chair and put him in the front seat and then push his 200lb w/c into the back of the van. With a vent machine, that would be difficult. I know its going to happen eventually, but somehow we need to raise money for a wheel chair accessible van. I don't have the money or income to get one and I rather be prepare then to be sorry when the time comes. So now, I pray and put my trust and faith in God to help us with this project.

Tonight...out of the blue, I suddenly had a nose bleed. It took a good 20 minutes to stop it and not sure where it was coming from ...or even why.

Well ER is on...so is CSI. Thank god for tv remotes! Sorry I have not blog for a couple days, but tonight I suddenly felt blog phobia. I don't know why. I wasn't even sure if this was going up tonight. It may be my anxiety. I'll try again tommarrow.

Care for a Fig Newton?

It has been another day here at the Shands ICU. It was a drizzy day and it was determined that Tim be evaluated for a swallow test. They came in and evaluated him, but it can't be done until tommarrow (Tuesday). He is still having some difficulty swallowing. I had him try some water and tea today and he is still choking on it. However, he sort of didn't when they came in to evaluate him. But she said it can be something they don't see -deep down. They seem to think he may be having anxiety and may be depress as well, hence the rapid heart beating. I don't know since these doctors seem to run around the bush with so many things. Its one thing, but no it may not be or it may be something else, or whatever. They do believe the pnuemonia is still there.

Tim slept most of the day. He seems to be extremely exhausted. His father called to check on him. I was able to go to my own appointment and went home to shower, spend some time with the kitty and learned that our apartment complex is under new management (again!). Nothing exciting in the mail, as I had hoped. Baby, our cat, seem to be excited to see me. We played a little and I gave her some of her kitty treats.

I did go down and got some sushi. I poured some cocktail sauce on it and enjoyed the appetizer for a moment. I was determined that today I would have my smoothie. There will be no "buts" about it. After resting at home, packing some of his books and his bipap I headed to the drugstore for some medication that I needed. I did grab a few bottles of yogurt smoothies but it was not the smoothie I wanted.

I needed to get in touch with CJ today, not only to check in with her but to see how her weekend was. I know she had been ill and I had hoped she survived the weekend. I missed her call. I did try to call back, but I've sort of become accustom to her routines that I chose not to keep calling her. I could tell by her voice mail she left on my cell phone that she was still feeling ill. I felt bad- I think I gave it to her when I was sick last week. She missed her weekend trip with her husband that they take every 8 hours. I sort felt guilty about it, but I hoped she rested. I think I was able to rest most of the weekend, as I am feeling a little better comparing to the last few weeks.

Now for Tim to get better so he can assume his classes. He really can't afford to miss any more classes.

Well...we were watching CSI-Miami and coming to the last 20 minutes of the show when two (2) nurses showed up and told us they were moving us to another room. Yes- we have moved to another room...again! And at 10:30 at night. This is our 3rd move. Still in ICU, but on the other side of the floor. Which means I will miss watching the helicopters hoover over us, miss the construction below us and we are in a smaller room. And I can't emphasize smaller. They can't fit all his medical equipment in here. Not even his wheelchair. We are now pratically tripping over things as well. I don't understand why the change of rooms. Why couldn't they put this kid coming in in this small room? It is hot in here. It is noisier (sp?)...(we are closer to the nurses station) and by being on this side, that weird nurse we had over the weekend is here! (ugh!!) but our favorite nurse (Renee) is here on this side.

I'm still in dismay to why we are moved here to this side. It seems there are more babies on ventilators here while the older kids are on the other side. Confusing. But sad. Very sad. I've never really seen a baby on a ventilator... so still...so quiet...so sad.

I tried some herbal tea today- Apple Cinammon. It is really good. However...lol...I still did not have my smoothie. It is driving me nuts but I know I will survive without it. Maybe tommarrow I'll take a walk to the Rietz Union and see if I can get my smoothies.

Anyhow... I think for now I'll lay back and rest some...or try to enjoy my fig newtons.

Give me heathcare or give me SMOOTHIES!

I'm sorry...but as big as this hospital is, with all the little restaurants they have, why doesn't one of them sell smoothies. Let's see, they have Wendy's, Subway, Java, some other coffee place, starbucks, Einstien and Chic-a-flic and not one of them sells smoothies. How is this possible? What poor excuse do they have for not selling smoothies?!

It had been a strange night for Tim- or moreless the weird nurse. At 9pm last night she storms in here and switches on the light and decides she is going to give Tim a bath and change his bed. Now mind you, I 've been cleaning him up all day and keeping his bed fresh as well. I had just turned him onto his side and his bed was adjusted just right. He had just started to watch one of his Saturday night anime's. I was like, "hello" what is going on here? I told her I had already done this and I had just put him on his side. So she leaves...but later comes back and moves the chair to the middle of the room and rotates his bed and says he needs to be turned over to his right side. She puts the iv on him and the RRT comes in to put the bipap back on him. Which I didn't understand since they took it away and told ushe no longer needed to be back on.
Well...between Tim and I we tried to explain to him why he can't be on his right side. Well she left...and left the bed in the wrong place and the chair, that still sat in the middle of the room. So I got up, and readjusted his bed so he can see the tv. and put him back on his back.

Tim and I slept through the night...pretty much ok. But then this morning a RRT comes in and demands that he gets up and and if he is in bed to lay on his right side. I looked at her, as Tim did too and again explain to them why he can't. She wouldn't take our reply as an answer and demanded that several times of the day he lay on his right side and to get up and sit in a chair. I got thinking, "what? is this pms day?" Even the doctor had this early Sunday morning wunchie attitude.

Tim did get up and sit in his wheelchair for several hours. I did bath him (again) and I did put clean sheets on (again). He stil had problems sipping water and eating, so a swallowing test is order for tommarrow. Between both of us, we took a couple naps. I had a big bowl of fruit that I had purchased last night at Publix. I had run over to publix before coming home and got some sushie, watermelon and fruit and while I was at it, I purchased a lottery ticket. I have good intentions with the lottery if I ever win it. All I can say is that it would had been good contribution by the Florida community- to give back to the community.

I've been also enjoying watching the construction go on down below. They are putting in a tunnel from Shands to the new hospital. Its not summer time, so no shirtless guys :( . But there is some progress.

Well, its about 8pm and our "friendly nurse" is back on the scene. Tim wants to watch some of his anime on the computer so I need to get off and see what I can watch on tv. Emmy's is suppose to be on tonight. (boring!) but may watch it.

Tommarrow I have a doctor appointment, but I think while I'm out of the hospital I go and get some Smoothies! I still don't get how such a big hospital/college why there is NO smoothies at this place!!!

Until tommarrow...hopefully.

It's Saturday!!!!

Well I don't know what happened to Thursday blog as the posted for Friday is somehow on Thursday instead of Friday. Not sure why that happened but it seems like a day is missing. I'm not going to look for it since I'm just to tired.

It is SATURDAY and it is drizzling outside. Construction workers are still tearing up the roads outside, the flight helicopters still hoover over us and Tim is still laying in ICU. His heart rate is still high even if his vitals are normal. He is still having problems swallowing liquids muchless food. The doctors are thinking of maybe doing a swallowing test, but right now they think (the thingy that hangs down back of your throat-what ya call it...u know what i mean?) is agitated.

He is waking up from a nap and is really feeling really tired and exhausted. I'm about ready to go home for a shower, some laundry and check on the cat. Received some calls from family and friends-thank you for your support.

I've been trying to get into the Gainesvillemoms.com site but it seems to having problems pulling up, so I'll try later. We have been watching the History channel all day and wow- some of the things they come up with...lol.

Later!

Home vs. Hospital stay

Noon update:

It had not been a good night for Tim. Everything I told them would not work-didn't work. I slept most of the night, however in the background I can tell Tim was not doing well and the nurses and doctors were trying to figure what to do. He ended up sicker by sunrise and before they knew it, they had to order another stat x-ray, echo-gram and put him back onto the bipap (breathing machine). His heart rate will not go down at all...it just kept climbing higher and higher even after putting him on the bipap. The Cardiologist was called in. He 's been struggling to breathe most of the morning.

They wanted to send him home today and I said "no"- if it was yesterday when his stats were normal -maybe. But today his heart rate has not fallen below 130 and he has shortness of breath and he is complaining of chest pains. So they agreed, keep him here. (gish..wondering where they got they degrees from...its just common sense, right?!)

As you can tell, I'm exhausted and fustrated. I'm still demanding they do a cat scan of his left lung and heart. He has a history of an infection near his heart. Look deeper. Look deeper!

I'm suppose to have an appointment with a doctor today. I missed last months since I was sick and in PHP and could not make it. I'm debating if I should go now since Tim is in this respiritory and cardiac distress. Only I can't find their number!!!!

Anyhow, that is the latest update...please keep him in your prayers...as of right now, he needs it. I'll try to get back for another update this evening.

Evening Update:

I know the thought of it is a sin, but perhaps this is one sin God will forgive me. This child is killing me!!! His stats got better once they put him back on anitbotics and saline. It is still above 100. His O2 is much much much better. But his heart rate is a little high. He is having problems swallowing liquids and/or food products. Suddenly he is choking on it which is causing his heart rate to triple. He's been up watching tv most of the day.

Bryan, his health aid (a nurscing student at UF) from last year came in to see him today. The OT came in to see him and help him with the call nurse button. They still have not done the cat scan after telling them a dozen times.

Anyhow...I know there is something else to bring up but right now this "40ish" brain just can't remember what it is. Maybe it will come back to me later....maybe not. (hehehehe)

Cable vs.VHS movies bedrest

Have you ever laid there in your bed, knowing you are asleep and yet you know in the background you hear something but you are not sure if you are really hearing it or if you just sort of dreaming of it? Only to come to find out-you find out later it was real. You just can't help but laugh about it.

Well...we slept until 10am. Hard to beleive. Was just so tired. Even Tim slept most of the night. Then (well what we just heard) about 4-5am, there was a crowd in the room. Now, I don't recall at all about the crowd. But apparently, something happened (but was not told until this evening) that radiology was here taking xrays of Tim. Why at that time of the morning, not sure. I just know that his stats went in the red again. Why I was not awaken or called upon, that I'm not sure but it had not to been that serious for them to let me lay there (probably snoring).

Tim's stats have been normal all day. Nice to see. They kept him on O2 though since the pnuemonia was still there but not much of it left. He is still having some difficulty coughing, which of course causes his heart rate jump from 89 to 163 quickly. They have been giving him respiritory therapy. He is eating better.

I had the chance to try out Meditterrian food for lunch -it was good. We had some ice-cream this evening. The Physical therapist came in and so did a social worker. So far, he is not going home tommarrow. Maybe Saturday. Maybe Sunday. We have heard from friends and some family and those who are in the area...thank you for your support.

Tim sat up today in his chair. He did pretty good. Ate his dinner from the chair instead of in bed. He is enjoying his hot chocalate.

The moon is glowing right outside our window. Tim noticed it. So you know he is alert. But I know I am ready for bed. Which our nurse, Renee got me a nice "new" sofa bed.

So that is the latest. Hopefully tommarrow he will be in the mood to study some. I know he enjoyed watching his anime today. OHHHHHH we had NO tv for most of the day ( we jokingly thought Shands forgot to pay the cable bill), so we watched movies most of the day and one of the movies we watched was TOOTSIE. Anyone remember that movie?

Well Tim wants to be turned over-so I'm going to go and help him and watch ER. Till tommarrow. Sweet dreams!

Update on the College kid!

It was a long night and not much sleep for either one of us. His fever seems to be bouncing around like his blood pressure and now even his heart rate is boucing due to the fever. When we try to feed him today, he would choke on his food and of course his heart rate would jump up. So we are trying to give him his supplements from his g-tube and soft foods.

I went home earlier to get a shower, pack up a few things and took a nap. Not long enough to make a difference but enough for the cat to enjoy my company for a bit. When I got back, I was serprise to see the garage full...but when they finally let me in, I was serprise how many empty spots there was-so I got a nice parking spot right next to the elevator.

I have been missing my morning walks...but I'm just so tired and exhausted.

Anyhow- we are laying back just watching television. I"m going to try to nap a bit here. Will catch up later.

ICU vs. classes

9/16-Evening

Well...Tim is being himself! Up and watching TV but having difficulty eating. Right now his vital stats are stable- but I won't say anymore to "ginx" anything. LOL He still has a slight fever, his heart rate is still above nomral, his b/p is bouncing around like a basketball. He has slept most of the day and the latest is that there is pnuemonia in his left lung but also there is talk that they belived his left lung has collapsed as well. As long as he is on oxygen, of course his O2 level is acting normal. But as soon as they take it off, he feels like he is suffocating. He is still complaining that his lungs hurt and he is still having difficulty coughing.

Oh...and "the food sucks!" At least there is subway and Wendy's downstairs.

For me, I'm just tired. I've been drinking lots of water and trying to get those little kitty naps here n' there. Fortunately, we can have teh lap top in here, so that too helps keeps us "busy".

His instuctors have been contacted and positively responsive.

The nurses have been great and (somewhat) helpful.

As you can tell, I'm to tired to say much more. So I'll go from here and update you later or tommarow if anything new comes up.

9/16-Noon

Just wanted to update everyone on Timothy.

When I got back to Shands last night, they moved him into his own room. He still had a fever but was doing a little better. He did well over night until six (6) o'clock this morning. He awoke me to be turned over to his side when he went into respiritory arrest. He was unable to breath and his heart rate jumped and his b/p dropped. I think there must had be 10 -15 people in his room, about 4 doctors, RRT's, nurses. They did a stat x-ray and tranferred him to ICU.

The xray came back saying the pnumomnia is behind his heart. Which is not good, as this can affect the heart and make things more complicated.

Since being in the ICU, his stats got better, however his b/p dropped again. They plan to keep him in ICU for at least one night and may transfer him back to the unit we were on before. He is sleeping well for now.

Its a little nerve wrecking. He is feeling hungry and I'm asking at least a smoothie! (Of course!)

I am exhausted as I don't know how much of this we will go through, but for now he is stable. They have talked about incubating him and putting him on a respirator, if he didn't improve. But the meds and the bipap is right now stablizing him. Which is good news...for now.

I do need to find a place to just cry and get some kind of break but it seems he needs me for almost everything (he relies to much on me).

Anyhow, this is the mid-day up-to-date. I'll try again later tonight.

Studies vs. Hospital addmittance

It has been rough the last few days. What was suppose to be days of studies for Tim, he ended up sick. From a soar throat to a fever of 104 and admitted into the hospital. Yes, whatever it was I have, he now has it but only worse. His small fragile body lays on a hospital bed at Shands fighting this virus off.

He seem to feeling better yesterday, at least that is what he said. Than this morning, it hit him like a brick wall. He started the works of heaving and then his fever jumped from what appeared to be normal to 104. I took his vitals, they didn't look good. So I took him in to see the doctor. She was not please and told him that due to his condition, he needed to be back in the hospital. It took about 2 hours, but we got him in. When I left to come home for a shower, they were poking him and about ready to take his picture (of his lungs).

Tim has had a history that when it starts out as a sore throat, it will either just go away or turn into pnuemonia. Since living in Gainesville, he has not been sick at all. I was so afraid he would catch whatever it was that I have. Sure enough, it hit him. I, myself, still trying to recover from this virus and still fighting it. So having him in the hospital is probably better off since they can give him much better care since I"m still so sick.

Tim likes how I care for him. So he wants me back. So it still hard to fully recover. He hates the nurses over at Shands. The only thing I hate is those stupid little chairs that turns into a little "bed" (if that is what you want to call it) as it is more back breaking then a sleeping chair. If you know what I mean.

I'm just concern of him missing his classes. I know how important it is for him to attend those classes. He really enjoys all his classes. I even enjoy the classes myself. It just fasinates me about so many things that goes on in our lives, and its like.....ummm...its just awesome.

Anyhow...I promised Tim I would be back by a certain time, so I need to pack this up and head back. Please keep Tim in your prayers as he recovers and is able to return to his classes.

Water-down Coffee

Ugh!!! It has been an awful few days with this virus. From my body feeling like it overheating to this terrible cough. Now Tim is not feeling well at all. I called his doctor right away to be on the safe side. But because I was not feeling well enough to drive, they wanted us to wait to see how he did over night and the next day. They were alittle concern that I hadn't taken my meds yet and my condition had worsened. I just didn't have the money to get it or the strength. I felt that I didn't have the strength to take him in to see the doctor, even if I know he needs to before getting worse.

So...I told Tim not to do any school work-just rest for now. A whole day with no studies I'm sure he was glad-but he has so much to do. We had some white rice and chili for our lunch/dinner; and then for some unknown reason, I had cravings for coffee.

Of all times to have cravings for coffee. I had some in the house, I could had made it. I wanted to make it. I didn't need it, just wanted it. But I put it off as long as I could and when I realized I had nothing to snack on at all, I gave in. Its been so long since I had real hot coffee. I usually enjoy the cold coffee by Starbucks.

So I made some, thinking I was measuring correctly, I realized by the second cup, I had not measured the water correctly. Ok...so I'm a dork. I'm not normally a coffee drinker. But the water-down cup of coffee was still good. It took that hunger away...for now. You can tell how sick I am-enjoying a water-down coffee. I know to pay more attention in the morning.

And!!!! I finally did it, against my own will. I know I need to make a payment on the van, but there just isn't enough in my account to do so. I needed my meds and Tim needed something for his throat. So I gave in and went to the Pharmacy-in the middle of the night. I'm alreaady feeling a little better. I put his g-tube on and gave him his meds through his ensure. Hopefully this will start to work on his virus-if this is what is starting. I want to be on the safe side. I know Tim..once he gets sick, starts with the throat...then the bronchotis...then the pneumonia. I have to find a way to stop it at the throat. I have been given him liquids most of the day, but he feels like he's absorbed the ocean already as much as he has released. (Yes, he said that!!)

I'm hoping he will feel well enough tommarrow to do work on his Japaneese studies and Astromony study.

Well...I had my water-down coffee and now I'm on my drugs, so maybe I can sleep for the next few hours before he awakes me... again.

Good night...for now! (or is it "good morning?")

Super Mighty Mom...syndrome

Recently, I was called the "Super Mighty Mom"...I can't recall who said it or considered me that. I don't consider myself that at all. I just wish I can remember who said that to me...it might had been my therapist....or a friend....or someone I met at church....or that reporter who stopped by...or his social worker....or perhaps even my son's father who is finally admitting and giving me more credit for all the years sticking by Tim -while he runs off to his merily life. I guess it does not matter who said it, I just don't wholly agree with it.

What does it take to be a "super mighty mom?" What are the criterias or the "rules" to be that super mighty mom?

Ok, I have been there for him 24/7.
I do have to help him to and from his chair & toilent.
I do have to help him with his books and set him for his class work.
I do have to help him set up to eat.
I do have to transport him to and from his classes, and his doctor appointments.
I do have to transport him to and from his daily activities.
I do have to advocate on his behalf with his insurance, government agencies, child support issues, his education, disability rights and so on...& on.

...and yes, the many, many, many sacrifices I've had to make to be there for him 24/7. I had to give up my job, a nice car, a house, family, friends. Yes. Many parents will tell you the same thing of what is given up for that one child (ren) in order to provide that proper treatment & 24/7 care. People actually think because he is disable that he gets alot from the government. Nope!!! they are so wrong. Most of us end up loosing our homes, our jobs, our dignity and sometimes even our self-esteem. The government does very very little or nothing to help and in most cases, they rather you dead then to help out. I lie not!

Without me, he just can't get around. He can not live on his own and if was to, he would have to hire an 24/7 living aid. And guess who would have to pay for that? Yes him. Because we are dealing with a government who just rather you be dead and be buried in their cemetary then to pay out benefits for him. Yes!! truely. I've heard the government agency tell me that. Our very own government that we pay our taxes too...Our very own government that does DOES terroize their own tax payers!!!

I fight for my son and people like him because we who are on disability DOES HAVE RIGHTS despite our illnesses. Doesn't make us less of a person. Doesn't make us less humans. Doesn't make us crazy or bad people. Like everyone else out there who may be in low class middle class or high class ( who cares what the income is) we still have RIGHTS!!!

Ok...I do moderate a Yahoo group for Mom's whose children suffer from MD/NMD. I know what those mom's are going through. So guess what, they too are that "super Mighty Mom". Yes?! I also get involve in fundraisings. I get involve in other things too. I even want to start a KIDS SCRAPBOOK WORKSHOP after the holidays for the Gainesville Mom's kids. To some, I'm just perhaps doing to much and overwhelming myself.

However, If I don't do other things, and spend 200% of my time with just Tim, I probably would not exist. I too need a life. Even Tim knows that. But I do have to base my own life and activities around Tim & his needs.

I am tired alot. I have been sick alot. I am exhausted. I do get little or no help from friends and family...most of the time it seems I'm being criticize for the things I do or don't do. No matter what, I don't win.

I would like to date....again. I don't know if that will ever happen-again. I miss it. I miss going out and dancing. And although occassionally I do go out on the MOM'S NIGHTS OUT with the Gainesville Mom's....and I am starting to go back to church (something I vowed I would never do again)...but I am trying to make some positive changes in my life.

I'm sure I can say alot more, but I just won't bore you. I just can't see myself as that "Super Mighty Mom" or having that "syndrome"...lol. I'm a mom who does love my son with all my life and might. I am loyal to him and I ask God each day to give him health and strength...& each day I ask God to help me to be a better person.

Recently, while at a doctors office in Orlando, I saw a doctor. Here was a man who just met me, really didn't know me at all, and yet he told me right off the bat before leaving his office that one day, God will reward me greatly for all that I 've done for my son...to be there for him and not to give up on him...or God. To me, God has already rewarded me- He gave me Tim as a gift. Not only to have a human being to love and care for- but to teach me lessons about my own life.

I think it takes alot to be a special mom of a child with special needs. I think all those moms are SUPER MIGHTY MOM'S...because without them, our children wouldn't have someone special in their lives.

September heat...September chills

Well! Well!! Well!!! I've been sick the last few days. I was feeling extremely hot yesterday, like burning a fever but when the doc took my temp, it was normal. I don't think so!!! He said it was a virus going around. He gave me a script for two anitbotics. Only to get to the pharmacy to fill it. I didn't have the energy. I just wanted to get to bed as quick as possible.

Tim missed classes today- not his choice. Being his only caregiver and aid, he has no choice if and when I get sick. So he spent the day studying while I try to recoop. I still feel miseble. More so since I'm running out of juice and food in the hoouse and we have absolutely no more money to go shopping and we still have another 2-3 weeks before the month is over. So i'm going to have find the energy to go the food banks...again.

Anyhow...I need to lie down. Until I have a cooled off brain and body, I'll blog later.

College Anxiety...or heat attacks

I had woke up earlier enough to take my early morning walk...I just didn't have the motivation. I wanted to sleep more, but I knew my walk was far more important. I slept instead. Tim had another Tuesday of classes. I needed to shower, get him up and leave for his first class.

It seem the day was just hot...so hot I thought I would not survive the day. To enter a building that blew a bold breeze was my kind of thing. But then I was still feeling hot. I don't know if it had something to do with what I was wearing or maybe I was actually going through my "mid-life crises." I was extremely thirsty, constantly drinking. I contributed that to my diabetes...or dehydration. Tim's astromony class was really interesting. I really enjoyed it and I could tell Tim was getting alot out of it.

But then class was over and we had to go outside...again. I dreaded dealing with the September heat. I got Tim to his next building...and I ran over to Starbucks to get us something to drink and eat. As I was walking back with our smoothies, his banana-nut cake, and my salad; I noticed he was talking to a pretty young lady. At first I didn't recognize her...so I thought maybe Tim made a catch...so I walked slowly. As I approached them, I realized who it was. I didn't recognize her at first since she was dressed so casual. The last I saw her was at my place and she was dressed up (the reporter). We talked for a while. I saw her as a different person and casually friendlier.

After eating, I was feeling more and more anxious and more and more hot. Like my raditor was over boiling...about ready to burst of hot steam. We managed to get into his classroom an hour early. I had hoped being in the classroom would cool me off. Instead i was feeling worse. By the time class started, I thought I was going to pass out. I had to excuse myself from the class-quickly. I sat outside-where there was an actual cool breeze. I sat out there for a while and then I went back into Tim's class. I could tell no air was circulating and with over 40 students sitting in there, no cool breeze was not around. I found myself falling asleep-or passing out. I had to be aware I was sleeping or out of it to make sure I didn't "snore". Tim said I didn't-so I knew I was not sleeping. It took me a bit to wake up and then I had to leave again. Only moments later, he dismissed the class.

I was just to hot...my body was heating up to fast. It was like I could not get enough cold water in me fast enough. I had to take Tim to another building for the bathroom (one that is W/C accessible). We went back to the Hub for something to eat and then headed to his Pscyh class. Again, I felt my body heating up. Plus the slides/pictures she was showing was triggering me, so I just left the classroom and sat outside for a while.

I was not feeling good at all. My throat was hurting, I was hacking and I wanted to lie down to sleep more. I talked to my sister about the Power Point program, she actually thought I was crying. I had to explain I was not feeling to good. I found out that my maternal grandmother's sister and brother had died the last two weeks.

We are now home...thank God. I 'm catching up with my soaps. Tim is eating his spaghetti & meatballs and I'm laying back ...resting (or trying too). My body is slowly cooling off (thank God for AC's!!!!)...& thank God for a soft warm cozy bed! I figured I must had been overheating or going through more of my panic attacks. Whatever, I know I'm home -safe for now.

From the View down here....

Ok...I give you permission to call me an "idiot" or to even slap me in the back of my head. Talk about Roads! I did something really stupid today-on a road.

I had just got out of the shower earlier today...I had alot of errands to run in a short time. I had to get Tim up so he can eat and start on his studies. He had a lot of reading to do and a project to start on. I had recieved a call from Cox that they were about ready to disconnect us if they did not recieve a payment. Yes, we are in a financial stress...but I assured her that as soon as I was dressed and put gas in the van, I'll be there to make the payment. She told me they will keep it on if paid before 6pm. So I dressed quickly, got Tim up and ran out the door. I quickly stopped by my bank to get some money out for Gas. I still had not recieved my debit card in the mail, and I normally don't ever carry cash.

I got to Cox by 11am...and was heading back to an appointment. I needed gas and yes, I needed to pee ...badly. So I decided to take Millhopper road to I75. Now, I've never taken Millhopper road to I75. I assumed that the road would take me to I75 and to a gas station. Little did I know, the road would take me over I75 but not to get on the Highway. I don't know where it was taken me,but it did not take me to what I needed to go to. So I had to make a U-turn. There were NO signs that didn't say "No U-turns". I turned into a driveway and made my u-turn and headed back to 43rd road.

I ended up on 39th Street-that I knew would take me to a gas station and I75. OHhhh never been so thankful to see a bathroom, a bottle of cold water and gas for the van. Talk about taking a deep breath and releasing it. Breathe!!!!

After my appointment, I met with the financial aid at UF to resolve whatever it was that was holding the remaining of Tim's scholarships and grants. Its funny how they say one thing but do something else. I think I got it resolved. I ended up at the food court to grab something to eat.

My back and hip was still bothering me big time. I could not reach my doctor. I needed something for this pain. It was like Aleve was not doing anything, nor was Tylonol. I skipped my walk this morning due to the pain. I figured maybe I was feeling the pain since I was finally doing some good to my body and my body just didn't like it.

After I arrived home and gave Tim his lunch, I lied down for a bit. I still needed to get in touch with library and a few places for the Scrapbook activities. I missed most of my soaps and I wanted to nap. I suddenly was feeling a little overwhelmed and decided to nap. Just nap it off.

Then I got some news from a phone call. I was thrilled and excited. I knew now that good was going to come out of my next project. I had hoped.

It's hot. I'm still tired. I'm growing weary. But I'm on my bed...for the moment. From the view down here, things were looking up...for now.

Cinnamon Rolls

Tim had not woke up so early as we expected. He had alot of studies to do, including making up some work for his Poetry class. He had been reading up on the chapters, now to write about them and to share one poem he had written. Tim, beleive it or not is a wonderful romantic poet. Yes, he is! There are days I wish he was around when I was a teen. Although he denies being a good poet, even his english teachers in his High school days admits that no one cen write poems like Tim.

For breakfast, I offered him a tall glass of chocalate milk and a cinammon rolls. He normally loves those cinemmon rolls. Only the catch of this was that it did have raisens in it. Hey! its still really good. But Tim does not like raisens anymore (not sure why)...so it "ruined" the roll. But by the time I was ready to lay out his books ...I noticed that he had picked out the raisens. I could not help but laugh. As always I tell him he is pulling out the best part of the roll. Of course, he does not always see it that way.

Its funny how in our lives, our taste for things have changed. At one point in Tim's life, he loved raisens, and now he just hates it. The raisen has not change the flavor. It has not change its color or texture. Its still a raisen. However, as Tim grew older ...his taste for that raisen has changed. Its almost like how children at one point loved their vegies and suddenly just can't stand it. its like they outgrow what is really important to them. Anyone ese with children experienced this?

I had taken my walk this morning, but while on my walk I ran into back pain. Fortunately, the walking stick I had with me was my cane. So, for a bit I used it. By the time I got home, I was in an anormous amount of pain. I could not find anything to releive the pain. I lied down for a while-hoping it would bring some relief. I found myself lying down most of the day and helping Tim with any of his immediate needs. I did talk with my sister in Virginia and eventually talked to Tim's dad, Victor.

I didn't get the hosue clean like I had hoped...and does it need it! I'm hoping to accomplish this tommarrow before I run on my errands....if I have enough gas to complete my errands.

Well...Tim is hungry -again. So I'm going to fix him something to eat & drink. Although Flight 93 is on, I want to make sure I'm not missing anything else that may be on. this movie is a bit emotional for me. Its a good movie, but it still devastes me to what happend on September 11. Its like a memory that is still so fresh on my mind that emotionally drags me down.

Till tommarrow!

Rules of the Road

There are just so many different rules, pratically for everything. (sigh) There are rules for our daily lives. There are rules for school (no matter what grade you are in). There are rules at the library. There are rules at the doctors office and hospitals. There are rules at the grocery stores. There are rules in church. There are even rules for the road.

As you remember in one of my previous blog postings, I did talk about the roads of choices we need to make. Remember the inspiring song by Enya, "Pilgrim" how she talks about the different types of roads we must choose...including the one road that leads back to us-our hearts. We must choose these different roads- to find our final distination. The chooses we make -the end result is what leads us to either success (eternal life) or to failure (well, we know from there). God gives us the choice of roads. Some may lead us to a road that may end with diamonds while there may be another road out there that may have gold at the end. But for most of us, we always find ourselves on the road that leads right back to us.

How about the NO U TURNS, or DO NOT BLOCK THE INTERSECTION signs along the roads. There are also the STOP and the YIELDS signs as well. These are some of the rules of the road. Rules of the road are to bring safety, prevent choas, right?

There are so many times I sit at a red light...usually means to STOP, as the Stop sign does; where there are often little signs next to the red lights. Sometimes there is a sign that clearly reads, "Do Not Block Intersection" Now when you read that sign, what goes through your head...assuming you do know how to read. At least we hope all who is driving knows how to read. Not meaning to be rude, disrespectful or insulting, but the general rule of the road is to READ THE SIGNS. The signs directs you -gives you direction-keeps you safe...right? so what do you do when you sit there at the light and a few cars pulls up and ignores that sign and continues to pull forward and blocks the intersection. Making it impossible for other vehicles to approach the intersection to cross. Who has now broken the rule? Do you feel that because they broke that one rule, they may be breaking other rules? Causing chaos. Causing problems. Causing danger.

I have seen so many times this sign be ignored and many autos continuing to cross the intersection and blocking intersections. Ignoring the rules of the road. They have NO respect for the road ...or other drivers. Most intentionally block the intersection hoping to get across with no problems...while others, it just happens. Still ignoring the sign...the rules of the road. Perhaps they are blocking something in their lives-along their own roads. Maybe they are use to blocking the rules of life...hoping to get ahead; not knowing that this road they are on is only going to lead back to them...not the road that has gold or diamonds.

There is another sign I normally see, when sitting at a red light. It usually sits right next to the left turn signal. It is read in black and red. It clearly reads, " NO U TURN". Funny how many times I've seen cars, trucks and even semi-trucks ignore that sign. They continue to ignore the rules of the road...not to prevent chaos, not to prevent danger.

In our daily lives, when we choose a road we don't like, we seem to think if we make the "U-turns" and head back to the beginning that maybe choosing another road will get us where or whatever it is that will give us happiness or success. I'm sure many of us make many "U-turns" especially after an experience knowing it will lead us to no where...but back to ourselves.

When we ignore the rules of the road ...or life, we do end up no where. Because we choose to ignore the important things of our lives...the people...the right job...spirituality...true happiness. When a auto chooses to ignore the sign and make the u-turn (even if the sign clearly says not to make that u-turn), we often cause accidents, chaos, we bring danger to ourselves and to others...& maybe even death. It makes me mad when people ignore the sign and make the u-turn-especially a semi-truck with a trailer. What an idiot. Yes, they are idiots-totally.

God gives us signs for a reason. God gives us rules for a reason; and when we choose to ignore the signs, we put ourselves in a place that we will have regrets, maybe remorse, pain, and alot of other garbage floats up and makes us miserable. Is this the road we really want to choose?

What road do you choose...and do you choose to read the signs of the road and obey it...or do you choose to make an illegal u-turn and let it lead back to you...the answer is within you. The rules of the road...are within YOU!

Slacking off

Ok....it seems that I'm "slacking off" here. I was honestly ready to post last night but I was just to tired to think, muchless to write, Thursday too.

For the few that are interested in, Scrapbooking at GAINESVILLE MOM'S we are still looking for a reasonable place to have it. Seems no church or community center is willing to take us in. So we continue to search. But then.....

...I came up with a great idea. To have a KIDS SCRAPBOOK WORKSHOP. Three (3) of them infact-for the different ages. (3-5, 6-12, 13-17). Now to find a place who would be willing to let us have the workshop. Do you know how much fun that would be? I already have some mom's whose interested in it and volunteered to help with.

Tim's classes on Thursday was ok, but better on Friday. We finally made it to the Creative Writing- Poetry class. It was very interesting. There are a bunch of good writers in this class. I look forward to hearing more of their poetry...& of couse watching the instructor. (Yes, he is still fine!!!)

I missed my walk yesterday...but will make an effort today to get it done ...only because I am determine to loose this weight and to get in fit. I'm still looking for a walking partner. But I've been advised not to do the Boot camp. Since I have arthritis in my hips/pelvic, that may cause more damage then good.

Well...we had a nice surprise the other day. A Gainesville Sun Intern happen to fall upon some of my posts and my blog and decided to do a feature story on us. Yes. Shocking, ha? Thrilled. So we shall see if/when it is printed, how the story will turn out.

Wow...this year we are making up all those storms we've missed the last few years. Its like one storm after another is hitting us.

Well that is a quick update. I'll do better later on today. I still need to wake up. I need to get Tim up, give him breakfast and help him get started on classwork. I know I have something I want to write on.

Rules of the Road.

Sleep-talking

I was awaken at 1am by my son, Tim, whom I knew wanted to be turned over. We both had actually gone to bed early and I felt finally I was getting a good night sleep. I, of course, went to his room to only hear him telling me that he needed to be "connected". here is how this conversation went...

"I need to be connected" he spoke in his sleep.

Why do u need to be connected?" I responded

"just connect me" he responded assertively.

"connect you to what? I laughed, knowing he was talking in his sleep.

" Just connect me to the internet" he pratically yelled at me.

" Tim, its the middle of the night, I'm not connecting you to the internet now" I laughed at him.

"you are so stupid, you don't get it" he responded.

"What? are you serious?!" I laughed at him "What am I suppose to get. I'm telling you I'm not connecting you to the internet at this time of night."

"NO dumbass, turn me over onto my back!" he yelled again. I laughed.

"Well then say that, don't tell me to get you connected to the internet." I laughed again with a response.

"You are stupid, I said that." He angrily reponded back.

" NO Tim, you told me to connect you to the internet, not to turn you over." I replied

"No, I didn't" He argued back.

I, of course, was not going to argue with a sleeping young man. He had not realized that he was sleep talking and of course was denying it.

I spent most of the morning at the PPMD website, realizing that they have done a marvelous job reconstructing their site. It was exactly what I needed on my Homecoming site. So I called (or tried to) my webmaster to ask him about it (see if it will cost more). I also talked to Ryan about having a seminar down here for physicians who were interested in PPMD research and teachings for DMD/BMD boys.

I had to go visit a good friend- and we talked for a hour. I felt it went by to fast before I had to leave. I ended up back at Chopstix to get food for our lunch. I love that place now. I spent at least 30 minutes at Reitz Union at the food court to get more food. You see, we are out of money...and until our disabiltiy checks are deposited, we have to eat somehow.

However, I caught several people "illegally" parking in the diable parking spaces who are NOT disable but takes advantage of the permit and leaves those of us who have valid disability with place to park and unload wheel chairs. So I did what the officer told me what to do last week. Report those vehichiles. And that I did! Yes I did. Hey, it is criminal to use a disable parking permit if you are NOT disable. Yes it is. So....maybe some folks need to learn a few lessons.

I was just fustrated last year as much as this year that there were NO parking for the valid disable folks cuz those are NOT disable are taking up valid spaces because they are to lazy to find a real parking space. I had a good discussion with a Parking enforcer last year and thank God I ran into one of the UFPD 's who advise me that she is enforcing this big time. God does send Angels.

Well...my hips, legs and feet hurt. So does my knees. I'm just getting to old! I'll use the excuse that its just a 40ish thing. I sure hate to see what it will be like when I turn 50. It's all downhill from here on.

College Burritos & Bagals

I am so exhausted! My lower back, right hip and leg has been killing me. It has been another long day at UF. I was so tired last night, but felt I finally got some rest. We found a route that got us to UF in 8 minutes. Yes! considering where we live, it should had taken us at least 15-20 minutes.

Thank God for the many roads we can choose to travel on.

I again missed my morning walk. Tim tried to assure me as much walking we do on campus that should be it. I tried to explain to him that walking around on campus with a young man in a wheel chair and having to stop here and there was not the "consistency" of a walk. It needed to be steady. (He still didn't get it. )

We decided to try to tape record his classes. Now to sit and listen to them and hope they recorded...You know, to actually hear what they are saying? You know -how these recorders are not as always as they claim to be.

We had a nice brunch at the Einstien Bagals. Tim is strange. He has no problem sucking up the Wildberry frozen drink, but when it came to the wildberry coffee cake, it put the brakes on. I told him it actually is very good. It became so defiant on it. So I broke up the coffee cake so that he can eat it with out the berries. And although I tried to sneak it in a few times, he was just to smart to know the difference. I had one of their most tasteful turkey sandwiches and some blackberry lemonade, along with some fresh fruit. Now if you never had that, its times to give it a try.

We then spent some time wandering around and (like a little walk) then Tim wanted to study his Japaneese more. (such a good kid, ha?! )

I wanted to call Angie all day. She is one of my closes friends whose still in the hospital from the surgery she had two weeks ago. Today is Angie's birthday. I'm sort of was upset that I didn't bring her hospital phone number with me to call her during some Tim's class breaks, but I can assure you that as soon as I arrived home, I did call. No birthday cake today. But we do agree that the one cake we both enjoy eating is the lovely strawberry shortcake, with the whip cream iceing and large plunk strawberries and sliced almonds.

Sounds good, doesn't it?

We spent the last 3 hours in Psychology class. It was quite interesting-and funny. But I have to say the 150 students that sit through this class is blessed to have a good instructor. She really allows the class to particpate as much as possible.

I had to find a bathroom that would take his wheelchair. We have been lucky that only very few buildings has the standard Wheelchair accessible bathrooms. All the others are only handicapp accessible. Most of the campus is NOT (and I cannot emphasize that enough) ...is NOT wheelchair accessible. It may be handicapp accessible, but NOT wheel chair accessible. Most of the handicap doors that is suppose to be electical doesn't even work. And if you know me well enough, you know I will be assertive, maybe passive aggressive -but definitely advocate in regards to this issue with the ADA on campus. It is inexcusable.

It was dark when class finally was let out. We decided to go to Moe's or Chili's for dinner. It was so hot. Dripping hot. Its about 8pm and I'm still sweating from the humid heat. Where is the air conditioner? (ok...maybe it's the 40ish thing). We finally arrived home, to eat and relax in the presence of our cold AC.

I am tired...exhausted. I am tired. Its not easy being the caregiver-the mother of a disable son and the worse part is drag my old body around to help him. Until we can find help, an aide for him, I'm it. I hate being on that campus!

Well I do need to go for now. Another day has come...& gone. Sweet dreams.

The Long Weekend

"Not my son!!" I remember this very thought over 10 years ago while Tim and I were at a resort and watching the MDA telethon. Like most parents, we just don't want anything horrible, whether it is a injury or a disease to affect our children.

But.... it does happen. Whether we like it or not, or accept it or not; it does happen. Timothy was diagnosed with Duchenne Muscular Dystrophy in early 1996. I did not think this would ever happen to my child. It already is emotionally overwhelming when you have to see other families go through it, but when it comes knocking on your door, you know you've been ginxed. And that we have.

Every year, whether I 'm involve with the MDA or not, it is emotional-overwhelmingly. You never want to see a child or even an adult experience this heart breaking disease. Whether it be MD, or MS, or Parkinsons, or diabetes, or cancer, etc..etc... its out there, we know. But when it affects someone you love-someone you know, it makes it all the more difficult.

I can remember soon after Tim's diagnosis when his father began to withdrawl. It was hard on Tim to deal with a disease ,but when a parent withdrawls and then abandons you, it does not make it any easier. Its now been over 10 years since Tim was diagnosed, and yet still thrives. He is now in his 2nd year in College and physically, healthwise-he is doing amazingly well.

The last two days has been different. For one thing, I have missed my walks for (3) three days now. Shame on me! Yesterday, I actually went to a church. I went to meet up with one of the Gainesvilles Mom's. She sings; and instead of arriving at 10 am for church, I did what was out of "habit" and went at the 11 o'clock. I had missed the service, but did not miss Karen singing. Talk about a powerful and spiritual experience. She could really sing! Despite missing church, I did stay for the potluck.

Well I did it!!! I finally did it! It took me over 9 months to get my act together, but I did it.

I spent the night scanning photos in for a friend and spent the rest of the night & today putting their online scrapblog together...it turned out really good...bettter than the others I have ever done. I did it in memory of their parents-whom I've known for years as well -both died 9 months apart from each other. I'm sure they would love the scrapblog if they were here right now.

Well, for now, I do need to nap. Its been a lonnnnnnng day. I'll be back!