"The mind is such a powerful thing I don't think anyone understands it completely."

Sunday, March 15, 1992

     Yesterday I went to take the Red Cross Infant & Child CPR class. It started at 8:30 & was supposed to last till 3:30. I got there about 20 after. It was a long walk to the front of the building from the parking lot in back. The instructions said to stop at the front desk and ask what room the class was in. There were several people standing around and one of them looked like Ruby Hopper from the back. When she turned around it was Ruby. Her employer paid for her to take the class. The instructor wasn't even there yet and there wasn't any electricity in the building. I was afraid they'd cancel the class. The instructor showed up soon & was a man instead of a woman. I had called a couple of weeks ago to request a separate mannequin because the manual said you could if you had a condition that makes you susceptible to infections. The lady (I thought she said she was the instructor) called last Tues. & said they didn't have any extra ones cause she'd just found out about my request. She said if I wanted to wait a month she'd be sure to have a separate one for me then. I told her I'd been wanting to take this class for months and between the class schedule & Guy's this is the first time it's worked out. She said to let her know before Sat. if I changed my mind.

     Anyway, I passed the course & got a card and a patch. I missed one question on the written test. I forgot that on an infant you have to retilt the head & give two more slow breaths. He wasn't too strict on the skills tests. If you remembered at the end what you had forgotten he didn't make you do it again. What all of us forgot most often was calling for help or calling 911. I'm just afraid of panicking and not remembering how to do anything or doing things in the wrong order & making things worse. I plan to keep the book handy.

     When we stopped for lunch everyone left but me & Ruby. She's really a talker. She started telling me about her multiple personalities! She sees a therapist twice a week. She showed me her journal so I could see how the different ones have different handwriting. I asked her how many there were and she said 100, and that there were seven that have already been integrated back into herself. I didn't know what to say. We finished the class around 1:30 and she wanted me to take her home. I called Guy to let him know. She'd planned to ask someone for a ride to the bus stop on Shore Drive but said it was nice I was there to drive her.

     I told all this stuff to Guy when I got home & he wasn't surprised, knowing Ruby. But he didn't really say whether he believed her or not.

     I took a nap, kind of, when Ez. did. Then we got ready to go to the chili supper for Camp Idlewild. By the time we got there (about 10 min. late) there was hardly anything left but chili. It all had beans in it. The salad was gone, the crackers were gone, there was barely enough tea, plenty of dessert. I couldn't eat the chili without crackers. I ate two brownies. Glen & Mercedes were there & as soon as we walked in the door she took Ez. over, for the whole time. They did the cake auction last & Guy asked if I wanted any of them. I said if he could get one for $10. We'd already planned to donate $10 for the dinner. He was sneaky since he was sitting behind me & bid $18 for the last cake-a German chocolate one. I was so upset with him. He said he'd just give them a check for $18 for the cake and the dinner. I still don't think we need a cake around.

     I asked Dianna Landon if she knew about Ruby & she said she did but pointed out that as long as we've known Ruby we've never seen any of these other personalities. She said Bea Dunbar doesn't believe her. Dianna thinks she got it from reading Sybil. I don't know what to think. The mind is such a powerful thing I don't think anyone understands it completely. We were talking about it on the way home and I said something about her growing up in an orphanage & it not being a "church home" so no telling what happened. 

"I told him I'm not ready for this."

Friday, March 13, 1992

     Last Mon. night we went to Wal-Mart. Besides the usual stuff, we got a couple of peek-a-boo books for Ez. & a tape of nursery rhymes & songs. She wasn't as impressed with the books like I was. We haven't played the tape for her yet. I listened to it a little bit. It kind of tells a story & has the songs mixed in. She'll probably only like the parts with the children's voices. Tues. Barb kept Ez. for me while I went to see Dr. Lazarus. I'd planned on taking her with me but the weather was predicted to be stormy that aft.& I knew there was no way I could keep her from getting wet in the stroller. I should've taken her with me cause it didn't rain a drop the whole time I was gone. I kind of lucked out on a parking space. They're in the process of building a parking garage. The previous parking lot is now for staff only and the patient parking is where the admiral's house used to be–they moved it to a different spot. It's only gravel so there's no marked spaces. I had to drive around a bit then happened upon someone leaving a space close to the street by the hospital.

     I had to have PFT's done. It was different from the last time (June '90). There was this booth I had to sit in–about the size of a video game booth. The door was only closed for a couple of the tests. You don't have to put your teeth & lips around a mouthpiece anymore, just put your lips around the cardboard tube. The guy who did it was funny so it wasn't so bad. His leg was in a cast but I didn't find out what happened to it.

     Anyway, Dr. L. said my volume was down 200cc but that could be because of me just getting over this cold. She gave me a prescription for Monistat since I was getting another yeast infection from taking the Cipro. This was my last time to see her. She's transferring to Bethesda Naval Hosp. May 1. She said my new dr. will be Dr. O'Neil. He's currently working ICU so I'm supposed to call at the end of April to get an appt. with him in June. Don't know anything about him. Need to ask Beckey Kinder. She was there Tues. I didn't recognize her at first. She doesn't look too good. Her face is all puffy. I think she's taking some kind of medicine for her kidneys or liver. She's walking with a cane–there's some kind of problem with her knees. She said she just had surgery on her sinuses last week again & is coming down with a cold. We didn't have much time to talk. I need to call her next week.

     Since I didn't know how long I would be (I thought she might make me get an X-ray) Guy was going to pick Ez. up on his way home. I was done by about 2:30 & decided to go pick up my sewing machine. I'd called Mon. & they said it had been ready since Fri. It cost $60 cause the feed had to be replaced. The tuneup went up $10 since the last time–about 2 years ago. I got home about 3:30. I called Barb to ask how Ez. was doing and ask her to tell Guy to come bring Ez. home before he went to take care of Katie. Then I finished printing up the friends' letters. About 4:45 I got a call from Guy saying he just got off the ship. He hadn't called Barb cause he didn't have her number & there wasn't any phone book. So I called to tell her he was just now on his way. I told her she should've called me when he didn't show up. She said she kept thinking he'd be there any time. I'd just assumed he decided to go ahead & take her with him to feed Katie. I apologized to Barb but she said it was no problem. Guy said she was doing fine when she got there. He brought her home then went to take care of Katie while I fed her & fixed our supper. Then he had to leave around 8:30 to go pick Carole & the girls up at the airport. He said it started pouring down rain as soon as they went out of the airport. Katie was very glad to see them & went to her bowl & started eating.

     The ship was out for the day Wed. & Guy would've been home late but he had duty so he didn't come home at all. He did call though, which is difficult to do cause they don't have a direct line to radio. So we didn't get to talk long. I called Sue that night cause AT&T was having a special–11 cents a minute 5-9 pm Mon-Fri. We talked for almost an hour. Harold's doing fine. He takes naps at work when he's tired & they've started a low-cholesterol diet.

     Wed. aft. Ez. & I went to Boone to get my Monistat and some refills I'd called in. She'd slept till 7:10 then wasn't ready for a nap till almost 11:00. She woke up at 2:00 & we went to Boone about 3:00. Thankfully we didn't have to wait as long as I was prepared to.

     Can't remember how late she slept yesterday or how her naps went except she didn't go down for the aft. til 3:10. I was ready when Guy got home to go to Piece Goods for their Customer Appreciation Day sale. I was so glad he didn't have to work late. It wasn't as crowded as last time. I got fabric for our Easter dresses–hot pink on white polka dots for her & white on hot pink for me. I got some fabric for some summer things for her and for making her quiet book. I'd hidden away $40 in the books but I spent $65. Guy wasn't quite as upset after I told him about the $40.

     The ship was supposed to be out again today & Guy said not to expect him home before 8:00. But he came home at 1:00. It was too rough for them to do anything. (He got seasick the first time they went out, with help from the others talking about being seasick. It's been four years since he's been to sea–when the Redford went to New Orleans.) Anyway, they were only supposed to be out overnight this coming Mon. but now that's been changed to Mon-Thu. And he's got duty on Sun. & Thu. so we won't see him from tomorrow night till Fri. night. Maybe Fri. aft. I told him I'm not ready for this. I was prepared for him to be gone two nights but not for five. He said there's nothing he can do about it and that all the other wives would be upset too. I told him that doesn't make me feel any better. It'll be a long week.

     This morning when Guy left he said Ez. was sitting up playing. She must've gone back to sleep soon after he left cause I didn't hear her. I'm not sure if it was last night or another night that she was up two or three times within 30 minutes and by the last time, when she went back to sleep and stayed asleep but I couldn't go back to sleep for two hours. It was hard getting her to sleep tonight. We've taken turns & hopefully she's asleep to stay now. Guy's already zonked out. Hopefully I can get a good night's sleep tonight cause I have to get up early tomorrow morning.

"Then Guy "attacked" me–twice!"

Tuesday, March 10, 1992

     Can't remember what happened Friday. Guy had duty Sat. & it was a kind of long day. Ez. & I went late that aft. to take care of Katie. She'd hardly eat anything. Ez. was scared of her. I put her in Martha's high chair & found some nilla wafers & gave her one of those. That kept her occupied but whenever Katie came near she screamed and/or whined. I put an egg on Katie's food like Carole's note said but she only ate the nuggets the egg was on. She did eat the milkbones I gave her. But she kept going back to her spot in the living room so I gave up & left.

     Sat. morning after Guy took care of Katie he came back to bring the house keys so I'd have them that night so he had to come home Sun. morning then go back to take care of her & then come back & change for church. We got there about 9:20.

     Ez. went to sleep in a wink Sat. night, just long enough for me to take a shower & wash my hair. A few minutes after I got done she woke up. It took a long time to get her back to sleep for good–almost 10:00. Of course I couldn't go to sleep till almost 1:00. I'd set my alarm for 6:51 & I sure didn't want to get up. Guy had said he'd be able to take a nap on the ship Sat. aft. so he'd take care of Ez. Sun. aft. so I could take a nap. She didn't take a nap in church so she was ready for a nap after lunch. So we all settled in for a nice long nap. Then Guy "attacked" me–twice! I found out later he was asleep & didn't even remember it. I went back to sleep the first time but couldn't get to sleep again the second time. I got maybe an hour of sleep. I decided to go ahead & get up and work on my "monthly" letter. I got the family ones done yesterday but didn't get the friends' done till today.

     I'm too tired to write any more now.

"It's been a rough week."

Thursday, March 5, 1992

     It's been a rough week. I think Ez's over her cold. My head has cleared up but it's kind of in my chest. The past two nights have been bad. I start wheezing & when I try to cough stuff up it's like it's just below where I can reach it. It made my throat sore again from all the coughing. Night before last I woke up coughing & it eventually woke Ez. up. Last night I was coughing a lot again but she didn't wake up till Guy got out of the shower. She didn't go back to sleep till 6:30 then slept till 9:00. I forget what the times were Tue. night. Anyway, we've just really been having a rough time. I kept her awake till after lunch today & she slept 12:30-3:00.

     I stayed home Sunday morning but went Sun. night. Guy had yesterday aft. off & we went to the commissary. He had this aft. off & I took a nap then he went to take Carole Krebsbach & the girls to the airport to go see her folks in Texas. We're taking care of Katy (their dog) while she's gone. Mike is at sea. She's staying at their house–we have to go feed her and let her out twice a day. The only time I have to go is Sat. eve. cause Guy has duty Sat. I dread it. She'll be back Tuesday. She called Tues. night & said her minivan had been stolen while she was at work. They had a car stolen from the side street at the church building one Sunday night a couple of years (or more) ago. It's hard to believe that could happen more than once to someone. Since Mike's at sea she can use his truck till he gets back. They have two car seats for Martha.

     I got a letter from Philip today. He sent a computer printout with Ez's name, ours, and just the Pulley side of the family. There was another one listing Papa's great-grandfather, his children, their children, etc. down through Ez's generation. It does need a lot of updating though. He said he's trying to verify info & get it all together so I guess I need to wait awhile before I put all this in Ez's book.

     I got her to move kind of sideways forward in her walker today by holding some cheerios in my hand for her to come get. It seems like she might be getting ready to pull up. She grabbed ahold of the edge of the coffee table a few times & moved her lets around but didn't get up on her knees or anything. It may not be long now though.

"Happy Leap Year!"

Saturday, February 29, 1992

     Happy Leap Year!

     I felt miserable when I woke up this morning. My nose was all stopped up & runny on one side all night. Thank goodness Ez. slept all night. I stayed up till almost 12:30 and started waking up at 6:30. Ez. woke up around 7:00. I was expecting Guy home by 7:45 or 8:00 but it was almost 8:45 before he got home. Ez. was ready for her nap soon after breakfast but I didn't have the energy to carry her up the stairs. So I sat her on my lap and sat up one step at a time. Guy got home a few minutes after she went to sleep. I managed to feed Chief but not myself. Guy fixed me toast & bacon–it felt good on my throat. We both went to bed & he said he'd get up when Ez. woke up and to wake him if I heard her & he didn't. When I heard her I told him she was awake & I thought he said ok. But he didn't ever get up so I just went & got her & brought her back in here. He asked why I didn't wake him up & I said I tried. He went ahead & got up with her & I went back to sleep. I don't remember what time it was or when I got up but the neighbor playing his clarinet is what woke me up. He's just about to drive me crazy with that. He plays every night & most of the day on weekends.

     Anyway, I felt a little better after eating some soup for lunch. I decided to go over to Piece Goods. It occurred to me that they should be having their Customer Appreciation Day soon & I wanted to check things out ahead of time. It's on March 12. I looked at the pattern books & decided on what to make for my & Ez's Easter dresses. Her birthday is on Easter. I looked for "mix & match" fabrics but they didn't seem to have any. I finally found some handkerchief linen in polka dots & thought that would look good–white on pink for me & pink on white for Ez., both with white collars (detachable on mine). I just hope there's some of it left by then. I did buy one remnant piece today–a nice wintry plaid but it's not too heavy. It's really too late to make her a winter dress now so I may save it til next fall. I also got some tape to fix Ez's two plastic bibs. The binding is coming loose on both of them. This is wider than the original though so hopefully it won't pull too loose.

     We were supposed to take my sewing machine in today. It's long overdue for a tuneup and when I was finishing up her once last week... I just checked and I already wrote about this. We're going to take the machine in Monday.

     After I got back, Guy went running. Of course, Ez. woke up after he left. I washed my hands good before going to get her. I changed her diaper & brought her back in here till Guy got back. After resting up, he took her downstairs so I could get some more sleep. I only really slept good for about 30 minutes. I just mostly tossed & turned. I felt a little better after taking a shower. We had popcorn for supper. My throat is feeling better now but my nose is still half stuffy. It's worse when I lay down. I already told Guy that I want to stay home in the morning so I can get some rest. He's watching some war movie downstairs & I'm watching The Sting in bed. I'll probably fall asleep once I stop writing. Hope we all get a good night's sleep.

February 1992

18 years ago...

     Instead of my usual blog post where I type out a journal entry of my mom's former days, I thought I'd do something a little different for today's post.
   
     18 years ago. On this day back in 1997, my life changed. But don't be quick to assume this was a negative change. Don't get me wrong, I'm not saying it was a positive change. That would be cruel to say. But my life did change on this day 18 years ago, and today, I choose to see the good that came out of it...

     From what I've gathered from stories family members have told me, here is a rough summary:

     My mother, Ellen Pulley Jones, was a surprise child in her family. She was born in November 1955. When I say she was a surprise, I'm not exaggerating. Her oldest sibling was 18 years old when she was born. My grandmother was in her 40's I believe. To my knowledge, she was a happy baby and a very bright and gifted child. She learned to play the piano at a young age, a trait she passed on to me. She could sew her own outfits, and later in life proceeded to sew many for my childhood. She could cook like you wouldn't believe (I was definitely never hungry). But there was something off about her, something that you wouldn't have known just by looking at her.
    My mother had cystic fibrosis. For those of you who don't know what cystic fibrosis is, it is a disease that affects mostly the lungs. Simple tasks such as breathing are 100 times more difficult for someone with cystic fibrosis. It's not a disease you can catch from someone else. And it's not a disease that can just develop on it's own, like cancer. It is genetic. The only way you can get cystic fibrosis is if both of your parents carry the cystic fibrosis mutation in their genes. Both of my grandparents were carriers, but they had no idea. However, if both parents are carriers of the gene, that doesn't mean that every child they have together will have CF. There is only a 25% chance of each child being born with cystic fibrosis. 1 in 4. Those sound like pretty good odds right? My mother was the 4th of 4 children...
     Skip ahead to when I came along. My mother was terrified, TERRIFIED that something was going to be wrong with me when I was born. They had no idea if my dad was a CF gene carrier. Lucky for my mother, they were able to test me for it when I was born. I do NOT have CF. But because my mother had CF, I carry the gene. So if my husband is also a carrier (we have no idea if he is or not), there is a 25% chance each of our kids could have CF; but if he's not a carrier, we won't have to worry about any of our kids having it.
     My childhood memories of my mother are fuzzy, but I do have them. What I am most thankful for is the fact that she knew her disease might take her from me too soon. So she recorded everything that we did. I have so many home movies, you'd be amazed. But she didn't just record home videos. She recorded her thoughts about life while I was growing up too. Hence these journal entries. My mother was a smart woman. She had good reason to record as much as she did. She didn't want me to forget her.
     Did you know that in 1959, the average age of survival of children with cystic fibrosis in the United States was six months? Six months old. Could you imagine if my grandmother, who had a surprise baby in her 40's, ended up losing her at only 6 months old with no idea why? I am so glad my mother lived past 6 months old. Even at the age of 25 (approximately) when she found out that CF was what was wrong with her, they didn't think she would live just a whole lot longer. In 2010, survival is estimated to be 37 years for women and 40 for men. And guess what. My mother lived to be 41! And that was in 1997. She beat the average age for women with CF to live in 2010 thirteen years before! I was 6 years old when my mother died. And I know why she died when she did. She lived as long as she could for me. She wanted to be present in my life for as long as possible, so that, when she did die, I would still have memories of her. And thanks to her recording our home videos, and her journal entries, I remember her in a way that I wouldn't trade for anything, other than having her here instead.
     I think of her every day and wonder what she would think of me if she were here. Would she be proud of me? Would she approve of the life I'm living? Would she be proud that I graduated from Harding just like she did 35 years before that? Would she love my husband as much as I do? Would she have bawled her eyes out at my wedding? Would she be asking me for grandchildren by now? Would she call me every day just to tell me she loved me? I hope the answer to all those questions is yes.

     18 years ago, I lost my mother. But 18 years ago, I gained a guardian angel.

"I was shaking so bad and crying cause I felt like I'd almost lost her..."

Friday, Feb. 28, 1992

     Wed. night was a very rough night. I don't know what time it was or how long Ez. had been crying but I didn't even hear her. I woke up as Guy was getting out of bed. He went ahead and took her first then I tried awhile then finally we gave her a bottle of juice and she went back to sleep. It was 2:35 when Guy came back to bed. We found out she's trying to cut a molar on the bottom right side. It felt a little less close to the surface tonight than it did last night. She wouldn't let us rock her the usual ways. Whenever she'd lay her head down it probably hurt her jaw. I finally laid her down on her back on my lap and she went to sleep after I rocked her a few minutes. It was hard on my arms and hands though having to hold on to her legs to keep her from sliding down. She didn't take good naps yesterday or today but she did sleep through the night last night. Would've been nice except I couldn't get back to sleep after Guy left.

     He had to work late yesterday cause they were having fire drills. I don't know why they had to schedule them at quitting time. I was getting really upset cause he was supposed to go to the post office and grocery store on the way home but he hadn't taken the stuff to mail. I started thinking about how being on the ship is going to be just as bad an experience as SIMA. I'd been kind of waiting for the other shoe to drop. I was just in a bad mood anyway cause I started yesterday morning. Then Guy being late and Mary Sembra was coming over at 7:00.

     Then when Ez. was eating supper she started choking on her cookie. She was able to cough it up. But she did it again a little bit later and it seemed like she wasn't able to get it up. I was patting her on the back and trying to get her out of her seat and she finally coughed it up along with a lot of applesauce. I took the cookie away from her then and tried to clean her up. I was shaking so bad and crying cause I felt like I'd almost lost her and I panicked and didn't know what to do. That's why I want to take that class, so I will be able to handle it. When I told Guy he asked if I'd read the class book yet and I told him I hadn't gotten to that part. I read it this morning when I couldn't get back to sleep. But it made me cry to think about what if I couldn't do it. I didn't giver her anything but Cheerios to feed herself today. No problems.

     Meanwhile, my throat started getting irritated last night & was sore this morning. I've been eating pretzels and Hall's cough drops all day. My throat is a little better but just in the last few minutes the right side of my nose started stopping up. I took Robitussin last night and tonight so coughing won't keep me up. I guess I need to up my sudafed and start the cipro in the morning. I don't know why she gave me a "double order" of it last time. It's more convenient to take tablets than use the nebulizer but I hate getting a yeast infection from the tablets. Maybe I'll try eating yogurt and see if that keeps it from happening. When Ez. first got her runny nose we figured she caught a cold from someone in class Sun. Then we decided it was only because of her tooth, so I didn't figure I could catch it from her. But I guess I did. 

     We went to the credit union and the post office after her morning nap. She did real good. I used the stroller both times cause I knew I couldn't carry her and stand in line. 

     It's 11:30 now. At 10:46 I heard this kind of knocking noise. I thought it was on TV at first but I still heard it when I turned the sound off the TV. It was my jewelry box and the candle holder on top of the dresser vibrating. I felt of the dresser and could feel it vibrating too. I went to check on Ez. and everything seemed ok in there. When I got back in here it wasn't doing it any more. That happened once a few years ago & Guy wasn't home then either. But he said it was probably a tiny tremor. Not a comforting thought. I hope it doesn't happen again.

     Mary Sembra came over to talk about the Singles Group. Things are finally falling apart. I'm surprised the Pugh's didn't keep it up when they took over from us. Mary's the only girl who participates and she tries to motivate the guys to be leaders but none of them want to take initiative. The Johnstons are wanting to be the next sponsors but they haven't talked to the elders about it. Mary said they told her they wouldn't come to the monthly fellowships because the singles didn't need anyone to hold their hands. I don't know if we did any good besides just letting Mary get some things off her chest. She caught us up on news too. Merry Gallahar is pregnant again. I asked Guy later whey he thought she didn't tell us. He said maybe she still thought I didn't like her. I asked if she said that to him or someone else and he said no. It's not that I don't like her. I just feel awkward about us being pregnant at the same time and I lost my baby and she didn't.