"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.