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.
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