Happy Birthday, Mom. We miss you.

We're coming to the end of the blogathon, and I just want to take one more opportunity to thank all my sponsors.

Rob--for your donation as well as taking Noah all day so I could blog, and staying up with me for the last 7 hours of the event. UPDATE: And then watching Noah all day Sunday while I slept.

Linda--for the writing as well as financial contributions

Kris & George--again, for stories, too

Andie--whose email in the middle of the night kept me going when I wasn't sure I wanted to anymore

And to Chris, Bruce, and the ever-philanthropic Anonymous, for their generous donations to a great cause.

I hope you all found this website worthy of your sponsorship.

UPDATE: Also, almost forgot. A very special thanks goes out to Kat, who stopped in to give moral support throughout the night, even though we've never met. Until you've done one of these things, you can't imagine how much feedback helps.

UPDATE 9/4: Also, thanks to Len Zazzarino, who made a donation in my mom's name after reading this site, even though the blogathon was over. It's much appreciated, Len.

Thanks, and...



...bye-bye! (Picture is my mom and I, New Year's Eve, 1974)

My last content post...from my aunt Linda:

"Watching her die was one of the hardest experiences I
have ever encountered. I was her friend as well as
her sister in law. She and I confided in each other.
Her faith in God was so strong, but she also struggled
with the fear of dying and not wanting to die. She
asked me to come be with her at the hospital thru
those last few weeks of her life. I was there when
she died. She valiently struggled to live. She even
put herself thru being on a respirator.

"I do know she knew we were there even tho she couldn't respond to us. It's
an honor to be with someone you love when they die.
You get to hold their hand and remind them that the
angels are there to assist them crossing back to the
spiritual side. I never regretted being with her
during this time of her life."

The last hospital visit (now with 57% less glurge!)I originally wrote this story as part of an essay in my freshman comp class. At the time, I thought it was the--best--writing--ever, but reading it back this week, I have realized that a lot of it was contrived, sentimental, melodramatic crap. I've taken out the most cloying sections, but I've left most of the minorly sappy stuff intact...because, well, that's what I do here. And it's 7 am in Houston, I've been up for 24 hours, and I'm too delirious with sleep deprivation to write anything better. So here it is:

The bell in the elevator beeped when we reached the third floor. We stepped out into the too-dark hallway and walked down to Mom's hospital room. The dimly lit hallway reminded me of the long corridors in the emerald castle in the Wizard of Oz. When the nurse opened the door to Mom's room, I half-expected to see columns of fire and a big holographic face floating in the air, shouting, "You have come to see MOM, the great and powerful?"

Instead, all I saw was a standard hospital room, and my mom sitting on one of the beds. She smiled when we walked in...but as I stood there across the room, I was frightened at how fragile she looked. She had always been small, but now she was just skin and bones. Tubes ran from both her wrists up to IVs on either side.

"Hi, kids." She said it in a voice barely over a whisper. Her voice was the same one I had heard since birth, and come to love more than any other. The ominous tone of the day was broken, and we all rushed to sit next to her, and to answer her questions about little league games and swimming lessons. She held baby Jordan for a while, and made jokes about the hospital food. After about 10 minutes, the nurse approached us and ushered us out into the hallway again. She told us that Mom wanted to see each of us alone. Uh-oh. This had never happened before. My brother Creed was to go in first, then me, then Ryan, then Dad would go in with Jordan.

I could feel a lump forming in my throat as I walked slowly into her room for my turn. My mom was still sitting on the bed, but she looked like she had been crying. I felt sorry for her, and for myself. That emaciated person across from me was my mom, the one who had been there for every major event in my life. She was the one I turned to when I woke up scared in the middle of the night, the one who cleaned up my scraped knees, and the one who wiped away my tears when I cried. She was always there after school to smile and ask me about my day. I could not imagine life without her. I started to cry.

Mom reached out one of her hands to me, and I took it. She pulled me closer and gave me a hug...I hugged her back gently, and felt like I might break her. As she wiped my tears away, she whispered, "Don't cry, Joy. I love you." I smiled at her weakly, and said I loved her too. The nurse approached us then, and said that I should send Ryan in. I waved good-bye from the doorway and left the room.

That was the last time I saw my mom alive. I was too young to go visit her in ICU, which is where she was headed later that day, I think. They put her on a respirator, and feeding tubes, and made every effort to keep her alive for as long as they could, in the hopes that she would recover. My older brother was the only one old enough to see her like that.

I used to wish that I could have been with her when her soul left this earth, but now I'm glad I wasn't. Some things are just too much for a child's mind to bear.

The Wizard of Oz

My mom loved this movie. The day it came on network TV was an extremely big deal at our house. We'd look forward to it for weeks, clear our calendars as soon as we knew what day it was coming on...I don't remember a single year that we missed it.

We would all sit on the couch downstairs, eat popcorn, and enjoy the movie, commercial interruptions and all.

warning: I'm gearing up for another sad post, so be ready. In the meantime, here's my favorite picture of my older brother and me:

Let's see...what else have we got left on the list...there have been some comments that my posts lately have been depressing (ok, 1 comment, but every one matters). So here's one of them thar homecoming queen pictures that I like so much (and I said I might post sooo many hours ago...):

You're also starting to talk to yourself. :-)

ok, Joy...enough with the long posts...you're starting to get behind. :-)

"I think if she would have believed she was dying, she would have taken more time to write letters to her children about what life meant to her, how much she loved them, and advice for growing up..." - Linda ShepardShe probably would have, and I would have read every word over and over again. But in a way, she did write a letter like that, at least once.

The summer my mom passed away, I went to girl scout camp for a week. Even though this was less than a month before she died, she was still at home that week. I think she had the oxygen tanks, though, and wasn't moving around very much. Anyway, on the second day of camp, I sent a letter home, and on the third day, she sent a letter back to me at camp. I still have the letter, and keep it as one of my most cherished possessions. Here's what it said:

"Dear Joy,

Glad you are having a good time at camp. We all read your letter and were very happy to hear from you.

Not much has happened around here since you've been gone. Dad and Creed built a new pen for Sonny & Ginger [our dogs] back where you and Kallie had your club house. Ryan found your money, you left home on the counter.

Creed caught a nice wide-mouth bass up north fishing with Grandpa. You and Kallie only missed one [little league] game this week. One of your games was a "Bye". Dad and I are going to Creed's game this afternoon. (Wednesday)

Dad will be picking you & Kallie up Sat. morning. We can't all ride along cuz there isn't enough room in the car if Jordan goes along. His car seat is too big.

It sounds exciting at camp. Enjoy yourself.

I love you,

Mom and Dad

P. S. Creed, Andy [Creed's friend], Ryan, and Jordan all say "hi". Tell Kallie "hi" also. See ya soon XXXXXXXXX <---- All our love and kisses"

No, it wasn't deep insights, and it wasn't Shakespeare. It also didn't try to pass itself off as life advice. However, if you look at it closely enough, it imparts as many insights about what was important to her as if she had written a memoir.

"...she would have taken more time to write letters to her children about what life meant to her..." She wrote this letter when she was deathly ill, and didn't mention anything about being sick. Life, to her, was about self-sacrifice.

In two short pages, she mentions every member of our family, and chronicles everything they did that week I was gone. Life, to her, was about family.

She includes two neighbor kids in the written conversation, as though they were members of the family. Life to her, was about inclusiveness.

"Enjoy yourself." Life, to her, was about fun.

"...how much she loved them..."

"All our love and kisses"
"I love you, Mom and Dad"

"...and advice for growing up..."

"Creed caught a nice wide-mouth bass up north fishing with Grandpa" Acknowledge your children's accomplishments, no matter how small.

"Ryan found your money" Give credit where credit is due.

"Dad and I are going to Creed's game this afternoon." Be there for your kids.

"Dad will be picking you & Kallie up Sat. morning. We can't all ride along cuz there isn't enough room in the car if Jordan goes along. His car seat is too big." Do what you can, and be honest about your limitations.

"I love you, Mom and Dad" Tell people you love them.

See?

You can see the actual pages of the letter here: Page 1 Page 2

Need to upload some stuff...changing computers.

Oops...need a new post. Took me too long to write that last one.

The things she's handed down--the generation beforeWhen I asked people this week what they remembered about my mom, they always talked about how strong she was, and how she was dedicated to her family. When I think of those qualities, I know immediately where she learned them.

My grandmother is one of the most remarkable people I know. Her whole life has been based on faith in God and dedication to family, and it has not been easy. I don't know much about her life before she met my grandfather, except that her family survived through the Great Depression, and she lost her mom when she was young.

My grandma doesn't drive. She never learned how to drive a car, and still catches rides or takes the bus wherever she goes. She also was not a farming girl...she didn't like animals, and prefers indoor activities to outside ones. When she married my grandpa, she moved to his family farm, on the end of a dead-end country road, with nothing within walking distance. They lived on that farm for somewhere around 30 years, until they sold it to John and Linda in the 70s. She didn't like farming, but she loved Jack.

They were strong in their faith, members of St. John's Catholic Church. They started having children shortly after they were married, with no idea of the heartache that would come with the joy of their family. Grandma and Grandpa lost four children to CF over the years, 3 of them before they even had a chance to move out on their own. One was just a baby. As a mother, I cannot begin to imagine the kind of grief I would face in watching my son die of an incurable disease, let alone 4 children. Through all the pain, the family held strong.

My grandparents celebrated their 58th wedding anniversary this year. They have good relationships with all their surviving children, and everyone lives close to one another. Even their daughter in law Linda describes them as "the best parents in the world."

On May 15 of this year, my grandma faced yet another death in her life--her husband's. May he rest in peace, and I hope she will find comfort in her family and her faith to get her through the one death she wasn't able to face with Jack by her side.

My grandmother is the embodiment of strength and grace under fire. Mom truly did learn by example.

More musings from Aunt Kris, as left on my voicemail"Your mom was always such a good mother. Everything she did was for you kids. Let's see...what else do I remember?"

"That even when she was in the hospital, on a respirator and dying, she remembered her wedding anniversary."

I actually had to cook this time *gasp* Next post has content--promise.

I'm fried, guys....i can see the light at the end of the blogathon tunnel, though.

I'm rounding up posts for the last few hours...we're going to revisit some of that quote in the last post, hear from my aunt Kris one more time, have a cry over my last visit with my mom in the hospital, and hear from Linda again.

But right now, I need food...again.

More words from Linda"I remember when she was admitted to the hospital for the last time, and how we had prayed for a miracle for her to be healed...I remember how she struggled to live and how she hated leaving her children. I think if she would have believed she was dying, she would have taken more time to write letters to her children about what life meant to her, how much she loved them, and advice for growing up. She never intended to die and leave them. [In the end, though,]her dying was her healing."

Goodbyes and BubblegumWhen I was 6 years old, my uncle Ronnie lost his battle with CF. He was 22.

Though we have pictures of him playing with us kids, and he lived with my grandparents during a time that I went to visit them often, I don't really remember much about him. I remember that Grandma would always want us to be quiet when he was home, because he was usually sleeping. And I remember that he liked Mad magazine, he liked to draw, and he played the drums. And that he would always sit in the same chair on holidays...the one in the corner by the archway into the kitchen.

I also remember his funeral. It was the first one that my mom took me to. I'm not sure if it was because I wanted to go, or because she wanted us to see what a funeral was about before we faced hers.

The memories I have of that day are a little scattered (especially after 16 hours of blogging). I remember that there was a bouquet of flowers that my mom said were from us--his nephews and nieces. There were either 5 or 6 carnations (I don't remember how old my cousin Nick is...if he was born before then, there would be 6), and all of them were blue except one. The pink one, for me, because I was a girl. I wanted to take it out and home, but Mom wouldn't let me.

I remember walking up to the casket with my mom, holding her hand. She knelt down next to her youngest brother, and reached out her hand to touch his. Then she kissed him on the forehead, and we moved away and sat down with the rest of our family. I don't remember the service, and I don't think I was at the gravesite when they put him in the ground.

The only other thing I remember about the day was walking out of the funeral home, crying. My mom asked me if I wanted a piece of gum, and I nodded. It was Trident bubble gum...I'm not sure why that sticks in my mind.

Four years later, I went to my mother's viewing at the funeral home. As I waited my turn to go up to the casket to see her body, I watched the other people ahead of me. None of them touched her. I thought back to Ronnie's funeral, and how my mom had touched his hand, and kissed his forehead. Was I supposed to do that? I just didn't know.

I stood in front of my mother's lifeless body, that looked just like her, and yet wasn't her. Even though I was afraid that it wasn't the right thing to do, I touched her hand. It was cold and rough, but it was still my mom's hand. I stroked it a minute, and then went and sat down with my family.

No one offered me gum that day, though.

The back-clapping lady

My mom was always sick...she never acted like she was, but we all knew. Her CF mainly affected her digestive system, but the closer she got to the end of her life, the more the mucus started to fill up her lungs as well.

I don't remember exactly when the back-clapping lady started to visit our house regularly. I know she didn't always come...but I know she was a regular visitor for at least a year.

The back-clapping lady was a nurse that came by our house to pound on my mom's back and sides with her cupped hands. This treatment loosened the mucus in her lungs, and helped her to breathe easier. It also made her cough harder while it was going on. At first, it looked like the lady was hurting her. I would stay out of the room, and just let them do their thing.

After a while, I started to listen in the hallway...between the coughing spells, my mom and the nurse would talk about her kids, and us, crafts and shopping. Over time, I realized that the back-clapping was a good thing, and the nurse taught me a little bit about how to do it.

I would practice on my dolls(or my brothers), trying to get my hands cupped just right. Every once in a while, I would try it on Mom. She always told me that I helped, though I doubt that I was really strong enough to do much good.

Master of DisguiseI asked my aunt Kris (dad's sister & our actor in the family), yesterday afternoon if she had any memories she could give me to put up here for the blogathon. Here's what she remembers:

"One halloween, I decided I was going to really surprise you kids. I was dressed up in one of my old lady costumes, with this old mask that covered my hair, and my whole face. I parked my car two blocks away, and walked around the back side of the block and up the front walk. I even changed my walk a little, to make sure that no one would know it was me.

"I rang the doorbell, and your mom answered and said, 'Hi, Kris.'"