My Dreams Can Wait

I feel so selfish.

Today my husband and I were driving home from another doctors appointment and we drove passed a new home subdivision. I saw the "Open" sign on the model home and decided to "just to see" what it looked like and what the price of the homes were. I have driven passed that subdivision probably over a hundred times in the last year. But today, it called to me. The home was modest and beautiful. It had a good floor plan that would meet my families needs. It was not my dream home by any means, but it would be a good fit for us. The builder is down to the last few lots left to sell, so they are offering to finish the basements for free as an incentive to get them sold. What a deal! The price was incredible.

I was very excited. I begans racking my brain on how I could raise enough for the down payment AND pay down our debt enough so that we can qualify for the home.

I thought, "Maybe, I'll blog about it and ask for donations from my readers. Even small contributions can make a big difference."

Then, I came across a blog about a little girl that has Neuroblastoma, a rare form of cancer. Her mother's plea for assistance tugged at my heart. I suddenly felt that my dream of a safe, comfortable home for my family was selfish and insignificant.

This family would be better served by any generous readers than myself. So, if you are feeling generous today, take a minute to read about Serena by clicking the link. http://help-save-serena.blogspot.com/

My dreams can wait, theirs can't.

Responsiblity

We just moved to a smaller home and I finally have the Internet hooked up. This is the first time I have been able to get on the Internet in 10 days. I had over 500 new emails, half of them are junk that I will just delete.

Tommy, my little boy finally got his tooth fixed with a bridge. He loves it and shows everyone.

Jerome, my husband, is still looking for an answer to what is wrong with him. The neurologist said that he knows there is something very wrong, but can't quite put his finger on what it is. It is so frustrating for us. Jerome has gone through so many tests, and he has several abnormalities, but nothing that points to one specific problem. His next test is with a neuropsychologist that is supposed to map out his brain and show exactly where his brain is, or isn't, functioning as it should. Those aren't until sometime in July.

Kaesi, my oldest daughter, has been helping me a lot recently. There is a concert this summer that she wants to attend and I told her that she shouldn't be allowed to do anything this summer because she failed 3 classes the last quarter of the school year. I am allowing her to earn her ticket to the concert by her helping me around the house and yard. I have a lot of work for her to help me with, as we are still unpacking and there is a lot of cleaning that needs to be done. As part of the bargain, Kaesi has enrolled in online classes that will make up her missing credits. I have been monitoring her progress and she is on track. If she keeps up the hard work, she will earn a ticket to the concert in about 5 or 6 weeks.

Anna, my 9-year-old, decided to spend a few weeks with her Dad and his family. Her room is still in boxes. She is turning 10 in a few weeks and I told to unpack her room and get it set up how she wants it. I set up the furniture for her and I want her to go through her belongings and weed out what she does and doesn't want. I explained that if I have to do it for her, I may get rid of things that she considers important and she will be disappointed. I have to assume that she doesn't care, because she hasn't even started unpacking. I will start on her room on Tuesday.

I know that some people think that 9 or 10-years-old is too young to be given such a task, but responsibility is something that I have taught my children since they were small. I started them on small chores at the age of 7 and I reward them them for completing their chores and schoolwork. I want them to learn the value and rewards of hard work. I want them to learn that there are consequences for not doing what they are supposed to do. I want them to understand that they are responsible for their own actions and to accept whatever reward or consequence that comes to them as a result of that action.

Oh, no . . . my tooth

A few weeks ago I let my kids go to play at the park. My little boy, Tommy was going down the slide when he attempted to turn around to see his sister. Somehow, he hit his mouth on the side of the sled and knocked out his front tooth.

Luckily, I had given Kaesi, my 15-year-old daughter, the extra cell phone for emergencies. She called me and told me Tommy had an accident and I could hear him crying in the background. I immediately drove to the park and all three of them were waiting on the sidewalk.

Tommy was still crying and I first noticed the blood all over his face. Then, I saw the empty space where his tooth used to be.

Me - His tooth is knocked out!
Kaesi - I know. I'm sorry.
Me - It's okay. Do you have the tooth? Where is it?
Kaesi - I don't know. In the sand? (I followed her to the slide.)
Me - We have to find it. You always have to get the tooth.

Kaesi was looking under the slide and I walked to the end with Tommy in tote. By pure dumb luck, I only had to look for that tooth for about 3 seconds when I saw it. There it lay in the sand, the entire tooth. I grabbed it and we ran back to the car. I put Tommy in his car seat, jumped in and headed straight for the dentist office, about half a mile away.

I knew they would be closed, but I was hoping that I was wrong. I was right, so I called the phone number on the door. The answering machine had the message I was hoping for: an emergency after hours phone number. I called it. The dentist answered and I told him what happened. He asked me to look at the remaining teeth in his mouth.

Poor Tommy, his mouth was all bloody. His other teeth looked fine, but I could see that his gum was tore all the way up to his lip line. The dentist explained that because Tommy is 3-years-old, he probably has permanent tooth buds forming and re-inserting the baby tooth risked damaging that bud. He said it would be best to let the tooth fairy come and to take Tommy into see him at 6am the next morning. I agreed. What else could I do?

I held up Tommy's tooth and I said to him, "Look, bud."

Tommy stared at the tooth for a few seconds, and then unexpectedly declared, "Oh, no . . . my tooth." He said it so matter-of-fact, I couldn't help but laugh.

The girls were crying more than Tommy. They were sobbing. Tommy watched them for a minute, then said to them, "Don't cry. I'm okay. See? I'm a tough guy." That made them wail. It made me laugh more and both the girls got mad at me. "It's not funny, Mom."

It wasn't funny, but it couldn't be undone either, so there was no point in me being angry or them getting so upset about it. For rest of the night, every time Tommy smiled, both of the them would start crying again.

A Good Laugh at the Doctor's Office

We went to the neurologist for Jerome last Monday. My first impression of the doctor was that he wasn't listening and we would have to go see a different neurologist. I was thinking about the number of months it would take to see a different neurologist, since most of them are in our area are booked out 3-4 months.

He fired off question after question at Jerome. Jerome would start to answer him and the doctor would cut off him and fire off the next question. He completely ignored me when I tried to help Jerome with his answers. The neurologist was confusing him and Jerome wasn't having one of his better days to start with.

Finally, I interrupted and I said to the neurologist, "I brought in his entire medical history. It's that stack of papers right there. It has his CT scan, MRI, and blood test from when he went to the emergency room on May 1st."

The doctor started flipping through the papers. "Finally, I got his attention," I thought to myself.
Neurologist -These are the results from a couple of weeks ago?
Me - Yes. The CT scan showed something wrong with the white matter and the MRI came back as normal.
Neurologist - That is unusual. I don't think this MRI was read correctly. It doesn't make sense for the CT scan to be so grossly abnormal and the MRI to be normal. I will order another MRI.
Me - Did you notice on his blood work also, that his lymphocyte count is only 4%?
Neurologist - No. Hmm. There is something very wrong here. Let me schedule some tests and we can get to the bottom of this.

The doctor left the room and a minute later he returned.

Neurologist - Does his muscles go like this sometimes? (He made a jerking movement with his arms to demonstrate.)
Me - Yeah. Just like that.
Neurologist -Oh, my God. (He turned and left the room again.)

Jerome and I looked at each other and we both burst up laughing.

Jerome - I don't know if I should laugh or cry. I have never heard a doctor say that before.
Me - (still laughing) Me neither. That was awesome. I like this guy.

The nurse came in a moment later with a sheet that had 7 appointments on it. She explained that all of these tests were critical and if he couldn't make any of the appointments to call the numbers provided and reschedule. She also told us that the doctor wanted to bring in a specialist from the University of Utah for consult on this case.

We meet with the neurologist again in about a month. Nobody in that office ever told us what the neurologist thinks may be wrong with Jerome. We are still wondering what the doctor meant when he exclaimed, "Oh, my God." We are still laughing about it also. Thanks, Doc, for the laugh and for listening.

A day in the ER

I haven't posted for a long time. I feel like I have been so busy over the last few weeks, but when I think back to what I have done, it doesn't seem like much. I think I just feel pulled in every direction and it overwhelms me. I have been putting in a lot of hours at work. We are moving in a couple of weeks also, so I have been packing and cleaning. My husband. Jerome, has been to see several doctors. A little over a week ago, he called me home from work. I knew it was serious because he never asks me to leave work.

When I got home his skin was gray and he was sweating profusely. He walked with a slight limp. I called his family doctor and made an appointment for that afternoon. With in half an hour, I was on the phone with 911 and asking for an ambulance. Jerome is a big guy, 6' tall and 240 pounds and I knew he needed to get to a hospital but I am only 5'4" and 125 pounds. I couldn't move him at all.

I had helped him get to the couch and when he sat down his whole body seemed to freeze. I could tell that the muscles in his hands were cramped by the way they were twisted. He was crying and kept saying his head felt like it was going to explode. He said his whole body was in severe pain and felt numb. His head and face were numb. His whole body started to twitch and convulse, but not like a seizure. I called 911 and I actually got an answering machine at first! It only took about 30 seconds for the operator to come on, but I was sitting there thinking, "You have got to be kidding! I have heard of things like this, but I never thought it was real."

I thought Jerome might be having a stroke or something. When the paramedics got there, they said that they were called in for chest pain. (I never said chest pain to the 911 operator.) Jerome's heart rate was over at 127. They told him to calm down and asked me if he was a hyperventilated. I told them no and he wasn't hyperventilating when I called 911. He had been barely breathing and the operator was yelling at me because I couldn't tell by looking at him if he was breathing when he lost consciousness. His chest wasn't moving and his mouth was turning blue. I really think he did stop breathing for a few seconds. I shook him and he took a deep gasp like you would expect from someone coming up from under water for a long time. They took him to the ER.

I stayed at the house long enough to make arrangements for someone to pick up the girls from school and then I headed to the hospital. When I got there he was sleeping. They drew blood and did a CT scan on his head. About half an hour after he got the CT scan, the doctor came in and said they were sending him in for an MRI because they CT scan showed white matter hypoattenuation of the bilateral cerebral hemispheres. At the time I had no clue what that meant. I now know that it could be an indicator of Multiple Sclerosis. The MRI showed no lesions on the brain, so the doctor said Jerome didn't have MS. They sent Jerome home even though he was in so much pain that he could barely move. I thought that they assumed that Jerome was faking or something. His own doctor often seems unconcerned with the symptoms that Jerome or I describe to him and I have felt like he thinks Jerome is a headcase for a while now.

The discharge papers that they sent us home with stated that Jerome had suffered from Hyperventilation Syndrome and Chonic Pain. They did not prescribe any thing for pain. That didn't matter because Jerome hates the way that pain meds make him feel. Even though they do provide relief for him, they knock him out and make him light-headed.

The ER doctor called Jerome the next day and told him that he made arrangements for Jerome to see a rheumatologist as soon as possible. The appointment was in a few days. He also wanted to make sure that Jerome saw a neurologist as soon as possible.

I sent Jerome to see his family doctor for a follow up and the doctor had made him two packets that contained Jeromes entire medical history for the past 3-4 years. One was for the neurologist and one was for the rheumatologist. He told Jerome that the CT scan on his head was a dramatic difference from the one that he had recieved a year ago.

I looked through the papers and I had been right all along. His doctor did think that Jerome was faking his symptoms. He even stated it in his notes. That explains why he prescribed Jerome with anti-depression medication. Even the ER doctor had put in one of his differential diagnoses as psychatric etiology.

We went to the rheumatologist on Friday and left him scratching his head. He looked over all of the paper work that I gave him. He doesn't agree with the ER doctors diagnosis of hyperventialtion. He kept talking about Jerome's CBC results. Every thing he was saying was going over my head. He used the term auto-immune disease a lot. I knew what that was due to my hours of online research. I have suspected and autoimmune disease for a long time, but when I told Jerome's regular doctor of my suspision and the symptoms that made me think that might be the problem, he blew me off and just said I was describing many of the symptoms of depression. I told him I didn't think that his physical symptoms were related to depression. He just said he would see Jerome again in a few weeks and then he never bothered to look into it.

When I got home I immediately looked at Jerome's blood work lab results and looked for any numbers that were not in the normal range. The one that caught my eye was the lymphocyte count. The range that was considered normal on the form was 24-44% and Jerome's was only 4%. For his lymphocyte absolute was 0.4 L with the normal range being 1.2-3.4 L. His monocyte was at 2% with the normal range being 0-12% and his monocyte absolute was at 0.2 with the normal range being 0.2-0.9. We are going to see the neurologist tomorrow. I hope he has some answers for us.

If any is a specialist that would be willing to look at Jerome's case and give us an idea of what is wrong with him, it would be greatly appreciated.

I'm Tired

The past few weeks have kicked my butt. I have been putting in 11-12 hours almost everyday at work. We are understaffed and drowning in mountains of papers. And how does upper management reward good, hard working employees? They force them to resign when they request time off. One of my hardest working employees needed to take some time off for her family and upper management's answer to her request was "Work, Resign, or be terminated."

I told my boss that is not the way to treat good employees and she just looked at me and shrugged, turned around and made her phone call. The employee resigned.

So, now we are even more understaffed. Which means the remaining employees are going to be slave driven until the work is done. I'm not the type to sit in my office and do paper work. I get out on the floor with my employees and labor with them.

I had last Sunday off and I did nothing but sit around in my pajamas all day. I am so tired. I have this Monday scheduled off (I scheduled it 2 months ago) and I am so excited just by the thought of sleeping in. I have been getting up at 3am every morning and it's hard. I don't want to do anything when I get home from work. My family is feeling neglected. I can't blame them. We will only have to work this many hours for about 2-3 more weeks. As soon as this season is over, we all will be laid off and I am looking forward to it. I am thinking about volunteering to be one of the first ones to go. I'm just so tired, physically and mentally. I need rest.

Feeling Happy

I feel good today. I do not feel sad or anxious. I am not worried or lonely. I just feel good. When I reflect on the events of the past week, the stress that I have been under from work and home, it surprises me that I feel so well. A few days ago, I was very unhappy and I didn't care about anything. But, today . . . I feel serene, tranquil, and . . . I feel happy.

Yesterday, we joined thousands of people in trying out for a popular game show. I made Jerome do the audition. He is more charismatic than I am, so I figured he would have a better chance of making it on the show than I would. We waited in line for 7 hours. Jerome was in real bad shape when we got home. His whole body ached and his hands where swollen. But he did't complain, not even once.

My body hurt too. My shoulders and back were sore from holding Tommy for literally hours. Tommy was so good. I saw many young kids in line around us that were crying and throwing temper tantrums, but Tommy was extremely well behaved. He played most of the time and wanted me to hold him a lot, especially when he got tired. Some of the people in line scared him. He loved petting all of the dogs that were there.

He made me laugh with his comments on the other children's behavior. He just turned 3-years-old, so it seems odd that he would be able to make the observations that he does about people. One kid was crying about having to sit in a stroller. Tommy watched the boy for a few minutes and then said to me, "That boy is sad." Then he gave the boy a rubber ball that he had found in the parking lot. He said to the boy, "Don't cry. You're okay. See me? I'm not sad."

Another couple of children in the line were fighting and hitting each other. He watched them for at least half an hour. I noticed him watching the fighting kids and I was hoping that he wouldn't think that kind of behavior was acceptable. I shouldn't have worried. He turned to me and declared, "Those kids are naughty. Hitting's not nice. It hurts." He is so observant for his age.

Jerome passed his first interview and was sent home after the second. The judge told us that they would call if there was good news. I won't be surprised if we never hear from them.

When we got home, Jerome was tired and in pain, but upbeat. He didn't complain. We talked about some of the people we saw and met in line. As much as we need the money, we both know that there were a lot of people in that line that deserve to get on the show more than us. I really hope that some of them make it. All in all, it was a good experience.

We received bad news when we got home. I checked the mail and there was a letter from the Social Security Administration. I opened it, and my instinct about the letter had been correct. They rejected Jerome's claim again. There was no medical evidence to support Jerome's claim that he can't work. I knew that was what they were going to say. It has been over a year since Jerome's accident and his doctors tell him the same thing every visit. He goes to doctor at least once a month and sometimes more. The doctors examine him, look at this Xrays or MRI's or whatever and say, "You should be better by now. I don't understand why you are still in so much pain. I'm going to prescribe you (fill in the blank) medication and let's see you back in a few weeks."

A few weeks will go by, Jerome symptoms get worse, and it's time for a re-run of the last 20 or so doctors visit. I keep telling the doctor that there is something else wrong with him, but they just want to look at his spine injury and blame all of his health problems on that. Jerome is fatigued all of the time, can't remember anything, unless I write it down for him, has severe pain and cramping in his leg muscles, back, and shoulders, his joints ache constantly, his hands get severely cramped from something as simple as holding an empty water bottle for half an hour, he sweats profusely at night and doesn't sleep well, he can't concentrate, he has diarreah 7-8 times a day every day, without fail, and the list of symptoms just keep going.

But the doctors just keep thinking that it is all related to his back surgery or they try to treat him for depression. He is now taking 5 different meds and none of them are working. It makes me feel so helpless to watch him rapidly turning from an energetic, healthy, intelligent young man (he is only 30) into an old man before his time. It really pains me.

All of that aside, I feel happy today. Despite not making the show, despite Jerome being rejected for Social Security again, and despite knowing that I have to go into work at 4am tomorrow, I truly feel good. It's a nice feeling. Maybe, it's because of the wonderful compliment that I got yesterday. It was probably one of the best compliments I have ever recieved. I'll write about it tomorrow. I already wrote more today than I had planned to write.

Unbalanced

Unbalanced is how I feel most of the time. Walking the tight wire with no safety nets.

I find it difficult to balance my time between work and family. As much as I love my family, I am very dedicated to my job. I have an internal tug-of-war going on between the two: career, family, career, family, career. Unfortunately, my career will win in the end, because it is what supports my family. Without it we would be bankrupt and hungry. It is difficult to support all 5 of us on less than $25K a year.

Bills are a constant battle that I can't win. Before Jerome became disabled, we were doing great. We both worked. We had built our dream home, owned beautiful furniture, a nice car, and savings for both our retirement and for the kids college. I had our budget planned so that all of our debt (except for the mortgage) would have been paid off in less than a year.

It all ended in less than a second. Jerome slipped on ice and that was the end of our happy story. The ruptured disc in his back crushed the nerve on his left side so severely that after his surgery, he was left with permanent nerve damage. We now have nothing except for never ending debt. And each other. We will always have each other. But, sometimes, I wonder if that is enough. When I am exhausted from working a 10-12 hour day and I come home to a cluttered house, dinner not even started, my beat-up car barely running, I can't help but feeling like throwing in the towel. Giving up. I can't win. I see no light at the end of this tunnel.

I try to stay balanced on life's tight wire, leaning this way and that. I used to worry about what might happen if I fall off. On day's like today, not only do I not care if I fall, but I almost hope for it.

Dirty Sock

Several days ago, Tommy was climbing all over the bed like he usually does, but this time he slipped off. He scrapped the back of his ankle on the end of the bed and landed on my head as I was laying on the floor. His wound was superficial, but it did hurt him. I held him as he tried not to cry and I wiped his tears away for him. He was okay until he saw his ankle. It was red because the top layer of skin had been scraped off. That was when he really started to cry. He asked for a bandaid. I humored him and put a bandaid on his ankle.

After 5 minutes he decided to check his foot. He sat down, peeled the bandaid back and . . . more tears, the ankle was still red. The bandaid went back on. He stopped crying, waited a few more minutes and repeated the process. After the third or fourth time, the bandaid wouldn't stick anymore. When I told him no more bandaids, he really turned on the water works.

It was past bedtime and he hadn't napped that day, so I knew that this problem had only one solution. Out of sight, out of mind. He wasn't crying because he was in pain, it was because he could see the wound. So I got a pair of socks out of his drawer and convinced him that if he put them on it would fix his foot. I was hoping that if he couldn't see it, then he would forget about it. I should have known better. Tommy rarely forgets anything.

When we woke up the next morning, the first thing he did was peel down his sock a little, saw his ankle was still red and started to cry. I thought to myself, "Maybe it really does hurt him." So I sat him on the couch with his blanket (yep, he's a blanket boy) and put an ice pack on his foot. That seemed to help. Tommy ran around and played like he normally does for the rest of the day.

Until bedtime. I took off one sock and then started to take off the other. He pulled his foot away and insisted I leave it on. I explained that the sock was dirty. No good. I let him keep the sock and we went to bed.

The next day, he played all day in his one sock. When it was time for bath, he was excited. He grabbed his favorite toys and headed for the bathroom. I undressed him and that is when he realized that the sock would have to come off. Tears started to flow. I thought if I just got the sock off and distracted him, then he would realize that his foot was fine. I got the sock off and put him in the bath. He seemed okay. I got him out, dried him off, dressed him and he just sat where he was, with a sad face.
Me - What's wrong, bud?
Tommy - I want socks.
Me - You don't need socks.
Tommy - I want socks.
Me - Your foot is all better, bud.
Tommy - I want socks. (sob)
Me - Will socks make you feel better?
Tommy - (slight smile) Yeah, I want socks.
Me - Alright.
Tommy - YEAH! Socks! (wipes eyes)
Jerome(Tommy's dad) - Why are you giving in to him?
Me - It's just socks. I'm actually glad he wants to wear them. The floor is cold.
Jerome - You're giving in to him.
Me - I'm comforting him.
Jerome - Giving in.
Tommy - I want socks.
I gave in.

For several days, Tommy wore his socks. Jerome would take off his socks and wrap his foot in a blanket or his pants or what ever was on the floor. This only served to trap Tommy. He would sit in the same spot for hours, with his foot wrapped, not moving because if he did his foot would come unwrapped. I would come home from work and find Tommy sitting in the middle of the floor with his foot wrapped and get him some socks. Jerome would give me the "your-giving-in" look and I would return it with a "It's-just-socks" look.

In the bath, Tommy would wrap his own foot with his wash cloth. His sock would get so dirty by the end of each day. I couldn't even remove the sock while he was sleeping. He would wake up as soon as he felt me tug at it.

I decided to try reasoning with him.
Me - Let's take off your sock, bud.
Tommy - Noooo.
Me - Yeah, bud, it's dirty.
Tommy - Noooo.
Me - Why? What will happen if you take off your sock?
Tommy - My foot will fall off.
Me - Your foot is not going to fall off, Tommy. (trying not to laugh)
Tommy - Yep. Foot fall off.
Me - Let's try it and see. If your foot falls off, I will put your foot and your sock back on.
Tommy - No. My sock is okay.
Me - Let's put on a clean sock.
Tommy - No. It's okay.
Jerome - Take off your sock, Tommy.
Tommy - (pouty lip, sob) No, please Dad, no.
Jerome - Nope. I'm taking it off and we are going to bed.

The sock came off. We went to bed. Tommy cried himself to sleep. With his blanket wrapped around his foot, of course.

Today, I came home from work and no sock! I'm not going to ask him about it.

My Little Man

Tommy, my youngest child seemed to grow from a baby to a little man over night. He is 3-years-old now, but doesn't act like a toddler. I get compliments from strangers on how well behaved he is all the time.

He started talking early and was always careful to pronounce words correctly. He never called his bottle "ba-ba". It was always "bot-tle". He said it in 2 parts so that he could enunciate the word properly. From his first words, I taught him to always say please and thank you. Now those words are second nature for him. He never asks for something without saying please and he always says thank you. His new thing to say is "Nice to meet you." I didn't teach him that one. I'm not sure where he learned it, but it tickles me to hear him say it.

He loves his sisters so much. Even at his young age, he defends them and stands up for them. I took Anna to the doctor a few days ago. She started to cry while she was having blood drawn. Tommy pulled up his sleeve, offered his arm up and bravely said to the nurse, "I'll take a shot for Anna. I'm not scared." When the nurse told him that she was almost done, he reassured Anna by holding her hand and telling her, "You're okay, Anna." He gave her the lollipop that the receptionist had given to him for behaving so well in the waiting room. I watched this scene transpire in front of me with a smile on my face, pride in my heart and a giggle in my soul. It is deeply satisfying to know that Tommy will grow up to be a good man.

As I sit and write this blog, I can hear him running around and laughing, his Dad calling after him to get him underwear back on. He thinks it is so funny to run around naked after using the potty. I turn to look and, sure enough, there he is, nothing but his birthday suit and one dirty sock on his right foot. The events leading up to this one dirty sock is a story that I will write about next time. Right now, I have to go convince him that his foot will not fall off as I hurry to change his sock.