"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.

"I was so upset I cried halfway home."

Wed., February 26, 1992

     Ez. was up & down all night last night. Guy took her part of the time. It was a rough night for everyone. She had a runny nose when she woke up this morning. I've been giving her Dimetapp but no change so far. It'll probably be another rough night.

     This morning we went to Cathy Rudolph's for a Multiples party. It's knit cotton/polyester clothes you can mix & match. I didn't get anything–too expensive. I rocked Ez. to sleep on my lamp and Cathy put a blanket in the floor in her room but as soon as I laid her down she woke up. So I took her back out to the den & rocked her again & just kept rocking. She slept for about 30 min.

     Guy was home when we got back. He fixed me lunch after he finished his & fed Ez. then put her down for a nap. I took a nap too. He watched a tape.

     I slept longer than she did. I'd hoped to have a nice relaxing evening. I forgot about our meetings. He volunteered to work on the architectural control committee so he had to go down to the clubhouse for that. I was supposed to go to the ship's spouses club meeting and was taking Ez. with me. But I couldn't find the place it was supposed to be so I came back home. I drove all around looking for it. The place that I remembered meeting at before when he was stationed there is now a day care. I was so upset I cried halfway home. Ez. fell asleep on the way home. When we came by the clubhouse I saw Guy's truck was still there. I saw someone putting on their jacket as they were coming out the door & thought it was Guy. I figured he'd be home soon after we were but he didn't come & didn't come. I looked for the number at the clubhouse and called but only got the answering machine. So I went back down there. I had to bundle Ez. up again (she woke up when we got home & stayed awake). I was afraid that Guy had gone on over to the base instead of checking to see if I was home first because he thought I surely wouldn't be home so soon. But he was still there. I guess I could've just come on home when I saw his truck there but I went in with Ez. & told him what had happened. At least I wasn't crying by then.

     Ez. went to bed around 8:15. Guy got home about 9:00 and I had to give him a haircut. She's been really restless but has gone back to sleep whenever she gets her pacifier back. I can tell her nose is kind of stuffed up. She probably spits her pacifier out cause it's hard to breath with it. I hope the Dimetapp clears this up & she doesn't get another sinus infection or anything else. I'm staying up to see the lottery numbers or I'd have gone to sleep when Guy did.

"She almost choked once though & scared me to death."

Tuesday, February 25, 1992

     Sunday was the Pugh's last day here. They should be in Searcy by now. I didn't cry as much as I thought I would. Lots of people did though.

     Guy had duty again yesterday. Elizabeth did pretty good. I gave her some peanut butter on a piece of rice cake. She liked it. She almost choked once though & scared me to death. She went to bed ok but woke up when the phone rang & took awhile to get back to sleep completely. (Eddy was calling to tell Guy happy birthday.) She woke up at 4:04 but went right back to sleep when I got her pacifier in her mouth. I didn't go back to sleep til almost 6:30 though. Then she woke up at 7:13 and wouldn't sleep any more. I took a nap when she did but only drifted really. She only slept an hour because she pooped. She was really tired & went right to sleep at 1:00. I slept for about 45 minutes after my story went off. She slept til 4:00. Guy got home around 3:40 or so.

     We went out for supper for his birthday at Denny's. He asked about their free birthday dinner, saying he had duty yesterday. The waitress said he couldn't get it but when they added the check up at the register he did get it free. So that was nice.

     It was a gloomy day yesterday and today. It's supposed to clear up tomorrow afternoon. It's been pretty foggy, especially when we were out tonight but that was better when it rained on the way home.

     We went to K-Mart to get a couple of things we can't find at Wal-Mart – an additive for Chief's water to "deodorize" him and the kind of photo album we like. They had all sorts of albums but not the ones we wanted. I saved the label from the last one cause it was hard to find them too. The outside looked the same but these pages were flimsy. There was one there with the right kind of pages but the pockets were for the jumbo size prints. So maybe they're just out of them. We also got Ez. a new sleeper. Actually I think it's footed pajamas. She's outgrowing her winter ones. This is kind of medium weight. We have one light weight one she needs to grow into. When summer comes we're going to have to get a lot of new clothes for her or I'm going to have to do a lot of sewing.

     I don't think I mentioned that the other day I finished a long-sleeved onesie for her except for the snaps. It's white with pink bunnies on it. The only thing left that's cut out is a plaid shirt to go with her burgundy overalls and a little bunny to fit in the overall pocket. Anyway, when I was doing the last bit of sewing on the onesie I was really having a hard time getting the fabric to move along. I kept adjusting the pressure on the presser foot but it didn't seem to make a difference. When I finished I saw the problem. The feed is made of rubber and the middle part had a big chunk missing and the bare metal was showing. I knew they were worn down but now I guess they'll have to be replaced. I hope it doesn't cost too much. I hope it can be done – the machine is almost 18 years old! Mom & Daddy got it for me for my high school graduation present. It was the best of the Singers then. That was just before they came out with the electronic ones and the free arm. That sure would come in handy for sewing Guy's patches on his uniform sleeves. I'm in the process of replacing all his SIMA patches with Opportune patches.

     I'd hoped to go to bed early tonight but Ez. had a hard time going to sleep tonight. I ended up rocking her laying on her back in my lap. But she's so long now I had to pull her bottom up on my stomach a little ways & hold on to her legs to keep her head from hanging off. A strange position but it put her to sleep. Guy was asleep within seconds. He said he was up working til midnight last night. I was up til 12:30 watching the Tonight show so I could get sleepy enough. That's what I used to do when Guy was at sea. But then, I could sleep as late as I wanted to in those days.

     Today's bottles had the last of the Similac in them. Ez. will be on straight milk from now on. We still have to warm her bottles up some but are gradually reducing the length of time we warm them. We got another sipper cup for her to try but she didn't like it. It has a gasket to control the amount of flow so if it's overturned it only drips out. But you have to suck on it to get anything out and she won't do that. Maybe because the first cup we got her she didn't have to suck on, it just came out. We may have to break down & buy the expensive one Dr. Karp recommended. I tried her feeding bowl with Cheerios in it but she just got a handful out and slung them all around. At Denny's I took food & a bottle to give her then we gave her some green beans & fries. She only took a few bites of each. She enjoyed watching all the other people though.

"Anyway, it hasn't been that great a day for me."

Saturday, February 22, 1992

     Since it's Saturday, Ez. woke up early – a little after 7:00. Guess who got up with her! I sure wish I could sleep through noise like Guy does. The times he did get up with her when he was on leave so I could sleep late, I woke up anyway cause I almost always hear her before he does. He'll probably want tomorrow afternoon too. I'll never get to sleep late again.

     We spent most of the day cleaning house. I'd hoped we'd get done in time to go to the mall for a little while. Ha! I don't know why Guy takes his time when he's cleaning. I'd rather get it over & done with & he just takes his time – when he even gets started. I was up here getting things out of the way so he could dust & vacuum, assuming he was busy downstairs. When I went down there he was laid back on the couch watching TV! I've been grumpy all day but that just about made me blow my top. I didn't really holler at him but he knew I was mad. I made a point later about thanking him for helping clean house today. (He cleaned the shower curtain too.) I told him that it seemed like no matter how much we accomplish I still feel like there's so much more that still needs to be done. He asked like what & I said all the stuff on the list. He just made a funny noise & walked off. Well, at least the house is clean. It doesn't look like it cause it's so junky. I just don't know where to put all the stuff we've got. I packed most of my bunnies but there are still quite a few out. I'm thinking about just packing them all up so we don't have to worry about dusting them. Guy rearranged them when he dusted but I don't know why he won't admit it. Sometimes it seems like he does things to annoy me on purpose.

     We tried feeding Ez. lunch from a little suction bowl we got at Farm Fresh. It wasn't a good idea. She just wanted to stick her hands in it then sling it around. We need to just give her things she can eat with her hands. She's not ready to learn how to eat with a spoon.

     She didn't take good naps today, probably because we were moving around so much. She got her bath on time though. She was rolling all over the floor in our room afterwards, laying down and sitting herself up over & over again. She's really gotten good at that. When we went back downstairs Guy went out to watch COPS while I started working on making stuff for the congregational fellowship tomorrow – carrot cake & potato salad. I was trying to watch the exhibition skating of the Olympic winners but that was hard to do. Once I got the cake in the oven I started peeling potatoes. Ez. was getting fussy. Guy had already given her a bottle. I told Guy I'd take her after I finished the potato I was working on. He said he could put her to bed & I said he's miss COPS. He said he could miss a few minutes of it. I said ok. A few minutes later he got up but instead of taking her up he just walked around with her, still watching TV. When I finally finished the potatoes & got them on the stove, I went to get her & told him what timers were for what & he said ok. I was halfway down the hall & asked if he wanted to say goodnight & he just hollered it from the couch. Sometimes I think his priorities are 1) TV 2) Elizabeth 3) me.

     It didn't take long to get her to bed. I took the monitor back down with me & it didn't take too long for her to go to sleep. After his precious show was over he came & helped me fix the potato salad. Then he loaded the dishwasher and started it. I asked if that could wait a little but he started it anyway. Then he went out to watch TV again – I don't know what – while I was stuck in the kitchen, waiting for the cake to finish, then for it to cool off enough to take it out of the pan, trying to watch the skating on the tiny black & white TV, with the dishwasher roaring in my ear. After I turned the cake out I told him I was coming upstairs. I watched the skating (& some skiing) while I was under the hair dryer, using the earphone for the TV. I should've written this while the skiing was on but I didn't feel like getting up to get the notebook. To dry my hair I have to sit in the floor by the closets with the TV pillow. I need to figure out an easier way but all the outlets are blocked.

     Anyway, it hasn't been that great a day for me. Like I said, no matter how much we get done, we're never going to get caught up.

"I just hope he doesn't end up like Mom."

Friday, Feb. 21, 1992

     I decided to watch a tape yesterday aft. and cleaned up in the living room some while Ez. was taking her nap. She went to bed about 8:30 last night but woke up a couple of times. The second time I got her up to rock her. She almost fell asleep once then just started fighting me. She wasn't crying so I just laid her down and when I checked on her a few minutes later she was asleep. I don't remember getting up with her overnight and I think she woke up around 7:30. I took a nap when she did this morning. This aft. I vacuumed downstairs right after lunch, except for where Ez. was sitting. I had washed the tablecloth we have under her chair but crumbs had accumulated before I got it back down. I decided to try something different. I'd been just scooting her up to the table without putting the tray on. Today I folded down that end of the table and put the tray on, scooting it up to the table. I had to scoot her back a little cause she was kicking the end piece & making it bounce & bang. She thought it was neat to have the tray there; I guess she doesn't remember it. I'm not sure if this idea is going to work. We may need to go back to our original plan of using the tray and sitting her beside me, at the corner of the table.

     She went down for her aft. nap at 3:00 & Guy got home about 3:30. She woke up not long after that. She went to bed at 8:00 and I didn't hear a peep out of her until Guy came upstairs. (He was downstairs flipping while I was watching the Olympics.) I'd gone in to check on her and put the blanket on her and Guy turned the sink on full blast. She started stirring and I came back & asked if he had to turn the water on so loud. He said he couldn't control the volume. I'm sure that's what woke her up. He got her back to sleep after a few minutes of walking her. Hopefully she'll sleep all night.

     Sue called last night to say Harold would be having surgery this morning to repair that artery. She called around 11:30 this morning to say the surgery went ok. He'll be in ICU tonight and go home in a few days. She asked if I'd call Daddy so I did. I tried to keep it short but I'm not sure how long we talked. He remembered Harold was having surgery but he didn't remember when or why, I'm afraid he's getting worse. He knows he is though. I just hope he doesn't end up like Mom.