With All Her Heart

Living with congenital Heart Defects

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Flip Flop- Make it Stop

By Libbie

For several weeks, I had been contemplating having gall bladder surgery. I flip-flopped back and forth, trying to decide if I could just live with the pain and discomfort or if it would be best to just go ahead and take care of it. I heard from friends on both sides of the fence. Some said they lived with theirs for six years before having it out. Others said they didn’t wait and it was the best decision of their life. So, what to do…I called and set up the surgery. Then, I called and cancelled the surgery. Then, I called again and set it up. The nurse probably thought I was crazy, which, under the circumstances, is a perfectly logical assessment. Anyway, I finally set the date, got all the pre-op information and then waited. 

On the night before the surgery, I was beginning to wish I had cancelled. I really hate being put to sleep. Not because I don’t think I will wake up, but I just hate that feeling of wanting to be awake and feeling unable to be totally awake. I know some people like that sleepy feeling and they just sleep for as long as they can. I don’t. I want to be awake immediately and my first words are always, “Diet Coke.” As I stood in the bathroom, thinking about how much I hate being drugged, I also thought about how much I hate having an IV. All my life, I have hated shots, needles, and IVs. I literally break out in a cold sweat, feel faint, and I panic. Then, it hit me. What must it be like for Lauren? How can she have faced all those surgeries without going crazy? My surgery was going to be simple. Three small incisions, laproscopic, able to be up and around in a few days, how bad was that? What if I was having heart surgery instead? I felt sick just thinking about it. Not just sick thinking, “What if that were me?” but sick thinking about my precious daughter who had endured it, not once, but multiple times. I hated the image in my head. I hated the pain that I knew she had. I hated myself for being so weak. I hated the fact that it wasn’t over for her. And that was the biggest ache of all.

I know that Lauren and I started this blog a long time ago. We both wanted to tell her story and mine. The daily rigor of working as a teacher kept me from continuing, though Lauren asked me regularly if I could start back up again. Now here I am, with another piece.  This piece is not so much a telling of the story of her life, but a look at her incredible obstacles. Since my last post, she has suffered sicknesses of all types. She’s been to the doctor every month, sometimes multiple times. Will she ever get better? That’s the question she wants answered. I don’t know what I should tell her, because I’m a little afraid of what the answer might be. Thankfully, God has provided abundant blessings on her behalf, so I have hope. Hang in there, Lauren. I love you.

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Out of Gas

By Lauren

Being stranded stinks. Besides for the obvious fact that you’re stuck, it’s stressful because you have a problem and it’s sometimes difficult to solve it. Yesterday it happened to us.

Tim has been sick with a deep cough over the last few weeks so I thought since he’d used up most of his leave time I’d get him to the doctor over the weekend and that would be easier than taking more time off. I decided to go with him to keep him company since he doesn’t really like going by himself and leaving me at home when he goes places. That was why we got married, to stay together.

Little did we know I would end up letting the battery drain to the point of the car dying. Little did we know we’d end up having to call for a taxi to go home, get the other vehicle, and come back to jump this one off. Little did we know how that day was going to proceed. I would never have gotten out of bed that day, had we known. I doubt Tim would have either.

As I was saying, moving on. We were stuck and sick and miserable. But we finally made it home. Boy we were happy to be home. We would never leave again.

Until Monday, of course.

There was actually one time in my life I was very happy to be stuck on the side of the road. Only once.

It was a bright, clear spring day in March in the year 2008. The sky was the forget-me-not-blue and birds were singing. We weren’t listening, though. We were too busy packing to get everything ready and leaving for the trip to Birmingham, UAB where I was scheduled to have valve replacement surgery the next day.

We had an appointment for me to be admitted and if I missed the appointment the whole surgery would have to be rescheduled and who knew how long that would take!

I would have been quite happy to postpone that surgery forever. I was not looking forward to it and had been dreading it for weeks. No matter how many surgeries you have, nothing really prepares you for going through another one. There are all manner of things that can go wrong. And it’s a lot of physical and psychological trauma. So I really, really did not want to make it to the hospital. Because at the end of that tunnel was a pretty dark stretch of road.

We were driving along the interstate and making great time, in the silver grand Am which we’d only recently purchased when all of a sudden, the vehicle came to a halt. This was before we had smart phones all the time everywhere or Facebook, and so Tim was panicked about what to do. We had a trac phone in case of emergencies but we didn’t have anybody at church’s number. We didn’t have a phone book in the car either.

Finally we dug through the back seat and found some old church bulletins. They had the name and phone number of the preacher and some of the elders and deacons on it. We were able to call one of them and then get a tow truck to come and get us and the church member picked us up at the towing place so that we could go home and get our other vehicle.

I was pleased as punch about the whole set up and I thought it couldn’t have been better.  I was happy as could be. I might not make it to the hospital! Yay! I might get to have my surgery postponed! Yay!

Of course, in reality, the situation was a bit dire, but only Tim seemed to really care at the time. Tim, of course, was really upset about the whole thing.

I was quite disappointed when we were rescued.

As things transpired, it was a broken gas gauge in that vehicle and we had simply run out of gas.

Tim’s diagnosis yesterday was also just as simple: allergies.

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Again and Again


By Lauren

Again is one of Clara’s favorite words. She loves to be read to and soon as you’re done with the story she says, “Again!”

She can sit and listen to the same story over and over again for quite a long time. She can listen far longer than Aunt Lauren has breath for these days, and longer than the average adult has the patience level for.

When I was a little girl, I was much the same way. During and after my open-heart surgery when I was 8, Little Mermaid was my favorite movie. I used to put it in everyday at the same time after lunch. My sister would always come in from school to find it on the television at the same exact part.

To this day, I don’t know if she’s seen the beginning of the movie. (We really should remedy that sometime.)

Most people have phases like that when they’re kids. Unfortunately, I never really grew out of that phase. The ADHD makes it to where I like to read the same books over and over, watch the same movies, eat the same foods, etc and branching out to new things is really hard for me.

I’ve read Catherine, Called Birdy by Karen Cushman probably some 600 or more times, my Harry Potter books are in various stages of decay and falling apart due to the number of times I’ve read all of those, and my Little House on the Prairie series is also falling apart. I buy books, read certain ones until they are torn up and then have to buy new ones of the same thing.

I’m definitely a fan of e-readers, if for no other reason that my copies won’t fall apart anymore, no matter how many times I read them. But I digress.

When I’m looking for inspiration for a novel, I have a select few movies I like to watch. There’s just not that many good fantasy ones out there, and I have my favorites. The same applies also when I’m ill. I want something comforting, not something new, when I’m sick. Unfortunately, I spend a lot of time sick.

Tim has tried really hard to get me into new things. He discovered that the best way is to entice me slowly. I got into Stargate SG-1 after watching a couple episodes. I got into Top Gear after watching a very silly challenge episode where they were in Bolivia. Futurama, I’m not quite sure how I got in that one. I’m sure it was probably Tim’s suggestion.  He jokes that I only like movies on, “My approved list.”  He’s not far from being wrong. That is the way I am, unfortunately.

It took me ages to get into Harry Potter. Mom showed me the books once and said, “You’ll love these!”

I ignored it. I put it on the shelf and forgot about it. One day, I was bored and pulled it off the shelf. I was sucked in. The same thing happened with Catherine, Called Birdy. Mom said, “You’ll love it!”

It happens again and again.

Inevitably something I resist for a long time will suddenly become my new favorite thing once I’ve tried it and realize it’s really good. You’d think I’d’ve learned by now just to take advice and recommendations when given but I don’t.

But that’s life with ADHD.

Also part of ADHD means I pick out really weird things to remember. For example, I remember that Hermione Granger’s dress for the Yule Ball in Goblet of Fire was a floaty periwinkle blue material; I remember that Catherine in Catherine Called Birdy’s favorite bird was a goose because nobody else likes geese. Her father she compared to a buzzard, her mother to a swan, and her nurse to a nuthatch.

I remember Bill Murray’s character “Spencer” in The Man Who Knew Too Little was allergic to Old Spice and he worked for Blockbuster Video in Des Moines, Iowa, and I remember Luke Skywalker’s line in The Empire Strikes Back when Artoo got chucked out of mud by the swamp creature was, “You’re lucky you don’t taste very good,” as opposed to the line that’s currently in there now, “You were lucky to get out of there,” and that Prince Septimus in Stardust loves the color blue.

I could go on and on but I’ll spare you.

Some of this I’ve picked up from my multiple readings or viewings. Some of it I got the first time through reading or a viewing. I can sit through a movie once and if I liked a particular line of dialogue remember it enough to quote it. Movies I’ve seen a bunch of times, I can quote verbatim. Same with books I’ve read. I’ve got whole sections of Harry Potter memorized by now.

Yet I can’t remember a math formula to save my life. Go figure.

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Prologue

Since I get asked by so many people at church when they’re going to finally read my writing, I decided to put up a sample today from my novel.  It takes a lot of time to write and edit a novel, even a shorter one and my poor health makes it even more challenging. But I am willing to share some of what I do have that’s ready. :)

This is my blurb for the back of the book jacket. My prologue is underneath.

Enjoy!

KYRAN KYZER AND THE CROWN TOAD

12-year-old Kyran Kyzer doesn’t expect to get a kingdom for his birthday, let alone a magical one. It’s a dream come true! There’s just one problem. He’s the only one in the entire realm who doesn’t have any magic. He thinks he’ll be able to cope just fine. But the problems begin before he even gets there.  He needs special glasses to help him read, write, and communicate, most modern equipment doesn’t work for him, and his security people can’t keep track of him.

Soon it will be time for Kyran to return to Noveva to take his place on his father’s throne.

If he can.

Everybody knows there will be challenges for him without magic, but nobody expects a horrible accident to happen before he even arrives…

~*~

Prologue: The Hatchling

William Kyzer, 35, bent down to the trunk in his closet, studying the combination lock. It was an old trunk of dark cherry wood with thick brass handles. The lock was somewhat primitive. But then his whole life here in this world had been primitive. It would be a relief to get back home. Assuming that was, that home was still there.

And that was a big if.

The lock clicked open smoothly. He opened the trunk and climbed down the dozen steps inside to a small room. The room was magically lit so he didn’t need to turn on any lamps or conjure candles and it looked like any ordinary room in the house except that it was inside a trunk.

There were shelves of books on the far right hand wall. But he was more interested in what was on the left side of the room. He settled himself at a round oak table with an old office chair.

He opened the center drawer in the table and took out what looked like an ice cube. It wasn’t an ice cube, of course. If it had been it would have melted years ago when it was first put in the drawer.  It was a hologram module.

He then fished a ring out of his pocket and slipped it on his right ring finger. He waved his hand over the hologram module, and it turned on. It made a satisfying snap-hiss noise as it powered up.

He tuned module to the last broadcasting channel he remembered.  “Sentinel to Threshold Base, is anyone there?”

There was a burst of static as if it were poorly tuned.  The image on the frequency stayed blank.

He frowned and made another adjustment. “Sentinel to Threshold Base, is anyone there?”

Perhaps they were all dead. That was a horrible prospect but it was one that he had to admit was a possibility. Or perhaps the equipment had sat in storage for too long and was no longer functioning properly.

He turned the holocube upside down and checked the meter readings on the bottom. Everything looked like it was supposed to.  It appeared to be functioning properly. If nobody answered, well… then there was nobody left to reply.

“Sentinel to Threshold Base, is anyone there?”

At last he got a response!

The image flickered and hissed but finally came into view. He recognized the centaur general standing before him. He exhaled in relief and saluted, “General Rothav, Sentinel reporting in Sir.”

The General saluted him and he nodded. “It’s good to hear from you, Sentinel. After all this time, we were beginning to think you were dead.”

“Yes, Sir.  The feeling is mutual, Sir. How is the Phoenix?” he asked.

Rothav paused for a long moment before he said, “Dead. His wings were clipped eleven years ago. He didn’t survive.”

He paled at that and grimaced. “He was not reborn?”

“No, nothing remains not even the mate,” Rothav said.

“That’s a pity,” William said and he meant it with all his heart. He suddenly felt old and tired. Before he could ask anything else the General spoke again.

“How is the Hatchling?” he asked.

“Hatchling is doing very well. He is safe and sound and ready for flight,” he said. “That’s the reason I was calling, actually.”

“That is excellent news, considering his delicate condition when he flew the nest,” General Rothav said.

“Very much so. He has thrived here as we hoped,” William said. 

“Do you have a time in mind for the Hatchling’s return flight?” Rothav asked.

“Not yet. I merely was gaining information with this initial contact. I wasn’t sure there would be anyone left at home to speak to. Now that I know, we will have to discuss things,” William said.

“Does the Hatchling know what he is?” Rothav said.

William paused, “Not yet. We were unsure whether or not we would be returning. It wouldn’t have been fair to tell him about his heritage if there was nothing left of it to return to.”

There was a long silence and William couldn’t tell if that meant General Rothav agreed or disagreed. He continued as though he agreed. “I’ll be in touch again after we have discussed things. Keep a channel open for me,” William said.

“I will,” Rothav said.

William then saluted and Rothav saluted him again. “It was a pleasure, General.”

“Pleasure for me as well. I look forward to delivering the news to those on base that the Hatchling is alive and will be returning,” Rothav said.

“Knight Kysler out,” William said. He stood up and stretched. Things were stable at home. The news about the Phoenix and its mate was horrible, but at least there was a home left even despite that.  And that was something to be grateful about.

His wife met him at the top of the stairs. “How are things?” she asked.

“Stabilized. Things are safe enough now for us to go back,” he said.

“Then why do you look so upset?” She paused and then understanding dawned on her. She sat down on their bed while he locked the trunk back up. There was a long silence between them. 

She then stood up and went to the bedroom window. They could see the Hatchling outside, having a snowball fight with his best friends. She watched him for several minutes before she said, “How are we going to tell him?”

There was an even longer silence before he said, “I have no idea,” he admitted. “But we’ll think of something.”



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Two by Two

By Lauren

Tim and I joke that I ought to have two of everything, but for me it’s really true. I need two of everything. No, really. Because if I only have one of something and it’s critical, I will lose it. You name it, and I’ve lost it. I’ve misplaced everything from car keys, dorm room keys, percussion mallets, yarn needles, crochet hooks, and even things like prescription drugs and thick heavy books.

I lose things you shouldn’t be able to misplace.

But that’s life with attention deficit hyperactivity disorder.

This week, I was crocheting and I picked up squares to sew them together. Unfortunately, I couldn’t find my yarn needle. The one I was currently using was a backup for another I’d also misplaced. But now I’d lost the back up too.

And I couldn’t go any further on the blanket without another one.

Oops.

Yeah, that was my bad.

I ended up having to call Tim at work and asking him, if he would be so kind, could he please pick me up some more on the way home. Luckily, he is agreeable. I couldn’t remember the brand name of the kind I’d lost, so he picked out some. They weren’t the right kind but they worked in a pinch. And later that night, after he’d bought replacements, of course, I found the missing needle I’d lost in the first place, so he returned the unopened packages and got me the right kind.

Once I lost a set of van keys when our church youth group was out at a rally. I was going to the car to get something I’d left there. I dropped the keys in the grass along the way.

The entire youth group had to help me hunt for them.

We eventually found them.

This was a regular recurring event in my youth. When I was in the marching band I played the bells. It was the only instrument I could play because it didn’t require any oxygen on my part, and I could stand in the pit and not have to walk around the whole time. We regularly performed in special competitions and one Saturday before a show, I dropped my mallets in the parking lot. Now, if I’d had my regular set that wouldn’t have been as problematic because they were white and you could see them a mile away. But I didn’t have them. I was using a back up set.

And these had black handles with a clear mallet head.

And I’d lost them not long before we were scheduled to perform. Yeah. We eventually did find them, and we did well that day. But it was definitely not one of my better moments.

It’s not just the losing things that I have problems with though. I also don’t do social relationships very well. I frequently stand too close to people when talking and interrupt to put in my viewpoint, or I block someone by mistake because I don’t realize they’re walking behind me. Self-awareness is lacking.

I’m on medication and this helps to manage my ADHD but it’s not perfect. And sometimes I forget to take my medication. It’s a double whammy.

So the next time you ask me if I’ve lost my mind, please be aware I probably have!

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A Hand to Hold

by Lauren

Sorry for the delay in blogging. My collaborator has been really busy with end of summer and beginning of school year things. My own blogging Muse ran away and left no forwarding address until now. She was rebelling because I’d used up all the ideas she’d given me while Mom was on vacation and busy with school. I felt guilty constantly reminding her that we had a blog to maintain and adding one more item to her already busy workload.

But today the Muse gave me a really good idea, so here I go.

As most of you know, Tim and I have four cats, one of which we adopted earlier this year as a result of a visiting neighbor’s feline. The neighbor’s cat was so sweet on Tim and warmed Tim up to the point he wanted to go get another when I suggested the idea. We browsed the Pet Finder for a little while and there was a really cute cat listed on the thing named Wilma whose first owner had died. It said she loved to play and head butted even the cameraman taking pictures for attention. We think head butting cats are adorable, so we went to the Pet Placement Center where we got Caramel and Hazelnut.

As things turned out, Wilma (whose name is now Pepper) also has a disease called stomatitis. It’s an auto-immune disorder responsible for a lot of things, but is manageable with shots. They told us at the time about how much things would cost and we thought she deserved a home, so we took her in.

She’s very playful and hyperactive and slightly crazy but also very sweet too and she loves to snuggle. She’s a lot like me. Must be why we love her so much, haha. :D

Cats normally don’t like going to the vet and Pepper is no exception to that. Since Tim only has one good hand, the task falls to me to get the cats into the carrier whenever they need to go anywhere. Caramel waltzes right in. He’s perfectly healthy and has had no fear of getting in the carrier. Vanilla too, waltzes into the carrier like there’s no problem.

Hazelnut and Pepper are entirely different. Hazelnut fights like a demon cat and Pepper also struggles to get away. She broke free once, but her hiding place that she’d chosen to hide from me was a small bookcase she likes to use to jump on top of the china cabinet.  She would have done better if she’d jumped actually onto the china cabinet, as there’s no way either Tim nor I could get her off the top of that thing to go to her appointment. 

Thankfully I was able to recapture her and put her in the carrier the second time without a lot of fuss. Once the door shut, I could hear her cries. She’s not a very vocal cat unless she’s going to the vet. As I sat there listening to her cries, it suddenly struck me that this must have been how my mother felt. I was telling her it would be okay but she’s only a little kitty and it was very scary to her. Since I am sick this week with a cold, I couldn’t go with her and hold her paw, but I knew that Tim would reassure her.

I hated shots of any kind when I was little. Blood work for medical procedures was painful. Unfortunately for me, I had to have a lot of them. And I didn’t want to go.

I would cry and cry during the tests. Mom had to be the one to hold my hand and tell me things would be okay if I could just hang on a little bit more. Of course, I didn’t understand when I was a kid. I just wanted things to stop. Even as recently as my last heart operation I pitched a fit when they were putting the I.V.’s in. I didn’t want that needle.

They hurt!

A lot!

Now that I’m all grown up with “kids” of my own, know how hard taking me to get medical things all the time must have been for my mom. I’m just thankful I had such a good mom who took care of me when I needed it and helped me through the scary parts and gave me a hand to hold.

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Happy for Myself

By Lauren

In case you’ve missed the news on Facebook, I have a new nephew. Philip Edward Shull was born at 11:02 this morning. Mom and baby are doing just fine. A few minutes after I announced the news, I got a text from a Dear Friend, “Are you okay?”

I assured her that I was fine and that this time was much easier than last time. And for the most part that is true. I haven’t had nearly the difficulties with Leah being pregnant the second time as I did the first.

But there’s always a small bit of lingering sadness that remains behind underneath the happiness. I won’t be able to share the things with Leah that she’s sharing with me. My hysterectomy makes that impossible. I know I made the right decision and I don’t regret it in the least. My pregnancy would have been an extremely high risk one and that’s even without the factoring in of me carrying 22q11.2 Deletion Syndrome. I would have had a whopping fifty percent chance of bringing a baby into the world that was equally as bad off or worse off than I was myself.

That’s a lot!

So, yes, I’m confident that I made the right decision in my head. Even in my heart, I’m much more confident this time around than with the last one. 

It wasn’t always this way though.

I’ve always been jealous of Leah. I’ve always felt that her perfect health was God’s way of saying to my parents, “Yeah, sorry about that first one. Here’s one to make up for her.”

She was smarter than I was, made better grades in school than I did, liked better fashion, had more friends, and on and on the list could go. When she was pregnant for the first time it was extremely difficult for me. I had always wanted to be just like my mother. Being just like my mother included having three kids of my own and a family. My doctors had always assured me that I would probably be able to carry a pregnancy to term without any problems.

That was before the lung injury.

After that happened, we knew there would be no way for me to have a baby. Babies take a lot of space up and are right next to your rib cage. I was already on oxygen even without a baby. Who knew what having an extra little person inside me would do to me.

The choice for the hysterectomy had been the best one. Mom had always said that she didn’t want to have to choose between keeping me alive or keeping the baby alive. Given the complications of my health and heart already, there was a good possibility that eventually we might have faced that if I’d gone that route. We’d made the right choice for everybody. But it wasn’t the easy choice.

There’s a scene in the movie Julia & Julia where Julia Child finds out her sister Dorothy is pregnant via telegram. She turned to her husband and said, “Oh Paul!”

Nothing else was said in the scene. But there didn’t need to be any more words. I knew just how she felt.

When Leah first told me she was pregnant with Clara, I closed the door in my room and cried. The next few months I struggled hard with bitterness and envy. While I worked on the baby blanket for Clara, sometimes I would dissolve in tears at random while stitching my squares. Tim was very supportive during this time, making me feel better when I needed him to. I had him and I had the kitties, but it still wasn’t quite enough.

I remember praying for something I could do; preferably something I could do better than Leah. But something. Anything. I wasn’t going to be picky about what. But I wanted a way to stand out. I wanted something to fill the void about the lack of little feet running through the house. 

The following year in February, I found Holly Lisle’s Create-A-Plot Clinic and not much longer after that, I ended up signing up for her How to Think Sideways writing course.

The next few months I learned everything I could about writing fiction. I soaked it up like a sponge and then wrung it out on paper. I came up with some book ideas based on my feelings about the pregnancy that likely would have put me in an institution had I showed them to anybody but fellow writers. I also started dabbling in poetry. I wrote some nature poetry and some dark and depressing poetry.

But the months went by quickly instead of plodding as they had been before.

April 22, 2010 Clara was born. She was a month earlier than she was supposed to be. Dad called to tell me the news.  I called and talked to Leah for a few minutes. After we hung up, I cried. I gave treats to the kitties to make myself feel better and went to Hobby Lobby to get yarn.  Retail therapy, I told myself.

It turned out I didn’t really need it. Not much later, Dad called again and asked if I wanted to go see Leah and her baby. He collected me in the airplane and we flew to Jackson. Mom drove the car so that we would have a vehicle. 

Once we united, we stopped at the Papa John’s to get Leah some pizza and bring her some doughnuts. She hadn’t been able to have any sugary sweets during the pregnancy with gestational diabetes.  Now that she wasn’t pregnant anymore she could have all she wanted.

I wasn’t sure what I would feel when I gave her my presents. I had ordered some clothes specially made and I brought those with me. I can’t remember if I gave her the blanket before this or at the same time. But I do remember the first time I held Clara.

She was so tiny and so precious and so perfect. All of the bitterness and envy I’d been feeling since Leah first became pregnant just melted away like butter. Leah trusted me with something special. How could I be sad around what was so full of life?

 

Fast forward two years later. Clara is now walking and talking. We love to Skype together, although she doesn’t quite understand the fact that I’m far away and not in the actual room. But I love my sweet girl. She can always brighten my day just by being with her for a few minutes. So when Leah told us at Christmas she was pregnant again, I was excited instead of sad.

I didn’t spend the months between dwelling in misery and being mad at her like I had the first one. Instead, things continued as normal. I worked on my manuscripts and I crocheted on shawls and blankets.

Today when I got the news she’d finally had Philip, instead of sitting at home crying and then taking myself shopping, I was working on a shawl for a friend of mine. I quickly posted the news on Facebook. And the only retail therapy I needed this time was finally buying her a gift.

So when my Dear Friend texted me to ask, I was able to reply with confidence.

I might not get everything my sister does and I can’t be just like my mother since I’m not in the best of health, but you know, I’m okay with that. We’re different people. And Clara brought us both closer together. This time I was able to really be happy for my sister like a sister should be.

And I am happy for myself, too.

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Make a Wish

By Libbie

About a month ago, you may have read or heard the story of a little girl whose father would not allow her to accept a trip to Disney World from the Make a Wish Foundation. I know it sounds crazy, but after reading more of the story, I understood where he was coming from.  The little girl was in remission from her cancer for the past two years and he thought that a child who was sick or dying should be chosen instead. I wish I could have talked to that man.  I would have told him that anything he could do to bring a smile to the face of his daughter would be worth it.  I know, because Lauren was lucky enough to be given a trip to Disney World from the Make a Wish Foundation in Alabama. And though it didn’t make up for all the pain she went through to get it, I’ll never forget her smile.

The circumstances that put it all in motion began months before.  One night in January of 1990, Lauren began to complain of pain in her chest.  Both Tim and I were concerned, but didn’t really know what to do.  Lauren complained of chest pain often, but it would go away and she would feel better.  This was different.  She cried and cried as Tim held her in his arms.  After awhile, she fell asleep.  The next day, she seemed to feel better and we thought no more of it.

I took Lauren for her yearly check-up with her cardiologist in Birmingham a few days before Easter in April.  Tim wasn’t able to go, so I went with Lauren and Leah.  We didn’t expect any big changes.  She seemed to be feeling fine and looked forward to playing in the playroom at the hospital.  The visit with the cardiologist usually consisted of having x-rays, an E.K.G., and an echocardiogram.  Lauren never feared these visits because there were no shots, no IV’s, and no blood taken. And I never feared them either, but that changed.

After the tests, Lauren, Leah and I sat in the room waiting for the doctor to come in and talk.  He brought the x-rays with him, and told the girls that they could go in a different room to play while he talked to me.  He had never done that before, and when I saw her x-ray, I began to understand why.  There was something on it that I had never seen before, so I asked, “What is that?”  It was called a pseudo- aneurysm. Evidently, that night in January, Lauren’s homograft valve and conduit that carried blood to her lungs had burst apart and she had bled out into her chest cavity.  She would have died that night back in January, but the scar tissue that she had from her previous surgeries had kept the blood contained in an area in her chest.  Immediate surgery was necessary, and also extremely risky.  I was told to go home, get things packed, and come back to the hospital on Monday.

I don’t know if it was the hardest thing I’ve ever done, but it ranks right up there.  I had to call and tell Tim, who was, of course, devastated that I had gone alone and had to bear such awful news by myself.  I guess that part was not as hard as having to tell Lauren. We had been planning on taking the girls to Disney World in May as soon as school was out.  Now, that would not be possible.  Lauren’s chance of surviving the surgery was low, and even if she did, she would probably not live many more years.

God was good to us, however, and He answered prayers from all of the people who prayed for her.  We were blessed to have Dr. Pacifico, the best of the best, perform the surgery and it was not only a great success, but he had been able to do some things for Lauren that he had not counted on. 

Of course, we were thrilled, though the trip to Disney World was out of the question, or so we thought. As it turned out, the Make a Wish Foundation wanted to make Lauren’s wish come true.  And, they did.  So, even though she didn’t have cancer or a disease that would take her life, she was a little girl who had been through much more than I ever have and unlike the dad that wanted only a sick child to have a wish, I think it’s appropriate for those who have suffered and survived to have one, too.

 

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Damsel in Distress

by Lauren

Damsels in distress in fiction always have two things in common. The villains usually kidnap them and knights in shining armor almost always rescue them. Or whoever the hero happens to be in the course of the particular story.

In my story, the villain that kidnaps me is purely mental.  You’ve no doubt heard the expression, “He doesn’t know when to quit.” Well, in my case, I truly don’t know when to stop. You’d think that with the heart problems that pacing myself would be easy. Just go at a nice, slow steady pace and then I would eventually get wherever I was going. But for me, it’s not that way.  And definitely easier said than done.

When I was a kid, I had the desire to fit in and be like everybody else so completely that I played at the same pace they did.

And then I dropped. Hard.

I dropped so hard that I had to be rescued. I have had to be rescued many times over the course of my life. I am most definitely a damsel in distress when I get in those positions. And my rescuers mostly are my family members.  

Once when I was at a camp in the summer with my cousins, I didn’t want to get out of the pool. The pool had a two-hour swim time and I was determined to enjoy it just like the rest of my fellow campers. I was supposed to tell them when I got tired and get out of the pool. Well. I never told them. I was having a very good time and I wasn’t tired. At least not for awhile. But then it happened. Suffice it to say that when the lifeguard blew the whistle telling us to all get out of the pool and that it was time to go back to the cabin, I couldn’t climb out.

I had literally exhausted myself so completely I could not move another muscle. I had to be pulled out of the pool and then we left camp early that week so that I could rest.

There have been plenty more incidents like this throughout my childhood.

I remember in the blizzard of 93, my siblings and I and the rest of the neighborhood kids were playing on sleds and having snowball fights. I played so hard and enjoyed myself so much that later I couldn’t walk home. My sister ended up having to go home to tell my parents that I was collapsed in the snow. I didn’t have to lay there that long. Dad later came to rescue me and carried me home.

This was especially problematic in elementary school. Physical education was required, of course. And all of my gym teachers said I could rest, but when they were barking orders to everyone else, I always kept on at their urging. I was supposed to be exempt from the physical fitness tests at the end of the year, but I went ahead with them anyway. Everyone was supposed to and they stressed everyone. So I did it. I was part of everyone wasn’t I? Naturally, I went as far as I could. And then I dropped.

Like a rock.

I had to rest in Mom’s room for the rest of the school day. Mom was a computer lab tech back then. Mom was really, really upset. I don’t remember much else about that day. But I remember mom was not happy and I remember passing out in her classroom and some of the other kids wondering what had happened.

Fast forward to adulthood. I’m still that same way. I still don’t know when to quit.

The second year Tim and I went to DragonCon, I had paid for a group of writer’s workshops. The workshop for the weekend cost extra and I was determined to enjoy it. The weekend is Labor Day weekend, but the workshops only last for the first three days. The first day I did three sessions. The second day I did five. I didn’t go to any sessions on the third day. I was too tired and ended up needing to rest in my hotel room the rest of the weekend.

Today I was cleaning. I intended to start cleaning only a little bit and just do a few minutes worth. I have some collectible dragons and I thought of a fun place to display them that was much better than the place I had them currently. But the place I wanted to put them was full to the brim of junk. So I got started cleaning and when I was done, Tim brought me a rag to wipe the dust off.  I wiped the dust down and cleaned off my dragons and artfully arranged them on the shelf. The shelf looked mighty fine after I had finished cleaning it and the rest of it looked so horrible. It just didn’t seem right to stop right there. So I kept cleaning until I literally couldn’t clean anymore and had to stop.

Writing at least is easier for me to pace myself. I tend to write in scenes and scenes don’t last that long. I can write several without dropping like a rock.

But even in my writing one year that happened. It was the first year I participated in National Novel Writing Month and I was determined to make it to 50,000 words by the end of the month. Problem was, I was still only at 20,000 words. I was more than half of my word count behind. So I wrote five thousand words everyday for a week.

Then I dropped.

And it took me all of the next week to recover.

I don’t know why I’m like that. I’ve never really understood why. But I’ve always been that way.  Perhaps somebody else can shed some light on it. Maybe my common sense on when to quit was part of the chromosome that was deleted.

But, hey, at least I know when to quit blog posts.

Sometimes.

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Happy Birthday

by Lauren

The birthday cake has been devoured and all the presents have been opened. That means my 31st birthday is officially in the history books. How did it stack up in comparison to other birthdays? Well let’s find out.

Presents

- Cake with lots of icing from Publix
- Harry Potter British edition eBooks for Kindle
- Nightgown t-shirt that says “Bear Hug” with a black bear on it
- Star Wars tin lunch box
- Dinner at Red Lobster
- Dinner at Chick-Fil-A

Over all, this birthday was a really good birthday. :) Not just cause of the presents, although those were nice. No, what makes a happy birthday for me is that I’m alive.

I’m not sick. 

I’m not in the hospital.

I’m not at the doctor’s office.

I did visit the urologist, but it was a scheduled visit. And I didn’t have to hang around to be admitted to the hospital. Being sick on your birthday is stinky. I’ve been there done that many, many times. This year, thankfully, wasn’t one of those years.

What else was happy about it? I saw my aunt and uncle I don’t get to see very often. Mom, Dad, and Tyler all surprised me and came through town on their way home from vacation.

I got many birthday wishes from dear friends all over the country and in other parts of the world.

My sweet husband humored me most of the weekend preceding and even more on the actual day of.

I have my four sweet furry cats who adore me. I even got snuggles for my birthday from Caramel for a little while.

I have been richly blessed.

It’s been a very happy birthday.


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