LBD Awareness Month

In memory of Flynn “Buddy” Murphy 

 January 1950 ~ January 2021 

 October is Lewy Body Dementia Awareness Month. 

 This is our LBD story. 

 Many LBD patients die as a result of falls or aspiration pneumonia. In his last year, Buddy suffered several falls and choking episodes. With respect for privacy of Buddy and the kids, I only shared small glimpses into his LBD journey. This exact month a few years ago he became very sick and was admitted to the hospital with sepsis due to aspiration pneumonia. 

One of the things LBD steals is one’s ability to swallow properly. While in the hospital, he had a permanent feeding tube placed and came home from the hospital on Hospice care. He passed away three months later. When Buddy died, we shared the “good” memories and photos. We felt like we could finally grieve the man we lost years ago. It was hard to see pictures of what the disease did to him. It became increasingly difficult in the months following his passing to look at those pictures of him. In his illness, we often forgot who he was before the disease took ahold of him. Our strong and confident leader relied completely on us. We tried to maintain some normalcy and to make him happy and comfortable in his remaining time. But, we often felt lonely and isolated. 

I joined several LBD forums and we discovered the Respite program. Soon the isolation faded and we began to feel less alone. Helping others and bringing awareness to LBD are things that bring some healing. While the memories and pictures of what this horrific disease did to Buddy, they are important because they tell a real and powerful story. 

 *Facts About Lewy Body Dementia: 

 *It affects millions of seniors.

 *LBD is not Alzheimer's disease. 

 *LBD is difficult to diagnose. 

 *Medications and LBD can have adverse interactions.      *Parkinson's disease and LBD are very similar. 

 *LBD affects sleep quality. 

 *Like most dementias, LBD is unpredictable. 

 *LBD has no cure. 

 With an average lifespan after onset of 5 to 7 years, the progression of dementia with Lewy bodies is relentless; however, the rate of decline varies with each person. DLB does not follow a set pattern of stages as is seen in some other dementias. Crudely, Lewy bodies are abnormal clumps of protein that gather inside brain cells. In LBD they particularly like to congregate in the areas that are responsible for thought, movement, visual perception, sleep regulation and alertness.   

Ultimately it is the friends and families of those with LBD who can take action, who can spread the word and who can support each other. So many of those caring for people with dementia are isolated and exhausted. 

 “More research into LBD is needed. Is there a genetic predisposition or are environmental factors a cause? Are there triggers? What, if anything, can we do to keep it at bay? Its victims cannot hold a conversation let alone start a new one. The onus is on their families and friends. We don’t want to let them down.” 

 #LBDawareness #lewybodydementia

Our Lewy Body Dementia Journey

 3 minutes of your time: October is Lewy Body Dementia Awareness Month. This is our LBD story. 

Many LBD patients die as a result of falls or aspiration pneumonia. In his last year, Buddy suffered several falls and choking episodes. With respect for privacy of Buddy and the kids, I only shared small glimpses into his LBD journey. This time last year he became very sick and was admitted to the hospital with sepsis due to aspiration pneumonia. One of the things LBD steals is one’s ability to swallow properly. While in the hospital, he had a permanent feeding tube placed and came home from the hospital on Hospice care. He passed away three months later. 

When Buddy died earlier this year, we shared the “good” memories and photos. We felt like we could finally grieve the man we lost years ago. It was hard to see pictures of what the disease did to him. It became increasingly difficult in the months following his passing to look at those pictures of him. 

In his illness, we often forgot who he was before the disease took ahold of him. Our strong and confident leader relied completely on us. We tried to maintain some normalcy and to make him happy and comfortable in his remaining time. But, we often felt lonely and isolated. I joined several LBD forums and we discovered the Respite program. Soon the isolation faded and we began to feel less alone.

Helping others and bringing awareness to LBD are things that bring some healing. While the memories and pictures of what this horrific disease did to Buddy, they are important because they tell a real and powerful story. 

*Facts About Lewy Body Dementia:

*It affects millions of seniors. 

*LBD is not Alzheimer's disease. 

*LBD is difficult to diagnose. 

*Medications and LBD can have adverse  interactions. 

*Parkinson's disease and LBD are very similar.

*LBD affects sleep quality. 

*Like most dementias, LBD is unpredictable. 

*LBD has no cure.

https://youtu.be/ovfvhsMjodA

Sometimes we struggle to understand the events of our lives. When life is difficult, how can we make sense of what doesn’t seem to make sense?

There are things in life that we have just accepted—difficult things, unfair things, tragic things for which we have no explanation. But the time may come when we’re forced to confront these questions. When troubles strike close to home, we may either accept the fact that we have no answers or perhaps come up with answers that may later be proved wrong. That takes us back to square one. Is it possible to find the answers we need?

Why do we face adversity no matter how careful we may be in life? Adversity sometimes enters our lives by circumstances beyond our control. Sometimes it comes because of our own mistakes or the mistakes of others.

"Walking By Faith" ~ When Life Doesn't Make Sense

Faith is a choice, not a feeling. It means choosing to trust God even when things don't make sense to you. 

I now fully understand the phrase I grew up hearing in church: "Walking by faith"

I had it all. Whatever I thought "all" was. A marriage, children, a beautiful home, financial security, a job I loved and felt fulfilled in. I had a circle of friends, my kids went to private school, I taught Sunday School and was active in my church - women's ministries and more... life was good.

and then, as if overnight, it was gone...

There are events in my life that I've just accepted—difficult things, unfair things, tragic things for which I have no explanation.
I'm walking by faith.

I'm reading Habakkuk 1. I know the context is about the Babylonian invasion but I can't help but I feel much like he did in this passage of scripture:

"How long, Lord, must I call for help,
but you do not listen?
Or cry out to you, “Violence!”
but you do not save?
Why do you make me look at injustice?
Why do you tolerate wrongdoing?
Destruction and violence are before me;
there is strife, and conflict abounds."

But, I read his answer to Habakuk and his promises and I have to remain hopeful:

“Look at the nations and watch—
and be utterly amazed.
For I am going to do something in your days
that you would not believe,
even if you were told."

Throughout the past few years, I have wrestled with trying to make sense of everything that has happened. I still wrestle daily with this. I am learning that it may never all make sense to me.
I'm walking by faith.

Spouses will let you down
Friends will let you down
Church leaders will let you down
It may even feel like God has let you down.

"No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he'll never let you be pushed past your limit; he'll always be there to help you come through it." Corinthians 10:13

I'm walking by faith. 

Heidi Murphy - 2017

Confessions of an Over Scheduled Mom

First things first: 

If you are reading this and you are a mommy of children between the ages of  0-18, i hope this will help you. I think this may be the perfect blog entry to come back into blog world with. I don't ever seem to have enough time in a day. Blogging is way low on my list - my excuse for being away so long. Things always get in the way of my blogging. You see, trying to be perfect is hard work. So if you followed my blog before and thought I was gone for good, guess what? I'm still here : )

Getting Naked:

Yep, I just typed that. It's not what you are thinking though. I heard it from my pastor's wife at a recent retreat. I'm referring to becoming open and letting you see my heart.
Three things I know:
1. I'm want to be perfect
2. I'm not perfect
3. I'll never be perfect

This perfection I speak of is NOT a body image thing. I know I'll never be perfect in that department and I'm good with that. I'm talking about the way I mother,  my relationships, on my job, how people people view me, my attitude, my walk with God.......the list goes on.

I've recently started journaling. It started off as a suggestion from a Christian counselor. Let me just say that it wasn't at the top of my "to do:" list. However, it has become much more than a daily outlet or assignment from a counsellor. Journalling has given me a tool to write my feelings without fear of being judged, talk to God, keep track of my moods, embrace and appreciate myself, have self care or me time, set reasonable goals for myself, look back and see how far I've come and much more. I have just started my second book. That's big stuff for me. I started out with this stinky thinking: "I hate my writting, my words are weird, I don't do it right, my thoughts or feelings look foolish, this is a waste of time......Why would I want to write words down and risk feeling foolish when reading it back later? Or even worse - someone finding it and reading it.

WAIT!!!! (Sorry I didn't title this post: 'All about Journalling!) - okay, there.

 I've gone from the (first few pages) journal entries: "stupid, stupid, stupid......" to an entire book (three months of days) filled up with full pages of my deepest thoughts.

Growing Pains & Lunchbox Notes

      Another mommy heart moment! 

I was talking sternly with Sean about being more responsible. 

He and I have been having a rough patch recently as he's been 

exercising his choices and consequences of time management, 

with homework and other things. 

I was with Lily when he came and confessed about not 

finishing a worksheet. His teacher wanted me to sign it

and I was not a happy momma about this. I explained what 

punishment I would need to give him and what lesson he could 

learn from it. He apologized and stumbled away downstairs. 

I spent time bathing and reading with Lily. 
We snuggled for a while and I tucked her in.

I came downstairs, fully prepared to start my nightly nagging of : 

"take your shower", "pick up your things", "brush your teeth".....

However, tonight, the nagging did not happen. 

I came down to a fresh smelling, wet haired nine year old boy.

This is what he had done, totally on his own: 

showered

 dressed
laid out his uniform 

took a frozen bread loaf out to thaw

made fresh lemon-aid 

packed lunches and snack bags for himself AND for Lily.

I  was beaming! 
I looked over at him again.
(My heart leaped with overwhelming pride)

He was sitting on the sofa, with his wet little head, looking proud.

He was very happy I noticed and promised to start doing better.

Sean has never done most of these things. And, for the ones he has done, 

they have certainly not been without being asked (at least five times).

I couldn't help looking to see what he had packed. 

He packed himself a very sturdy lunch. Yep, no surprise.
He always tells me I don't pack him enough food :)

 Next, I unzipped Lily's box. Her lunch was pretty skimpy. 

She's a difficult eater and I could see that he tried to pack
her favorites.

I felt a gush of warm tears at his gesture.
That's when I noticed the note:

He had written and tucked the most precious note in 
her lunchbox. It was written on a paper towel.

I took it out and gently unfolded it. (I'm nosy like that)

This.made.me.cry

I think I'll keep him (at least for a while longer)!

The Fight of Her Life ~ Darby Kate

Please pray for this sweet angel.
http://www.darbykatesheart.blogspot.com/

The Evolution of Sean's smile :)

 

Merry Christmas

Your Disney Friend ~ Emily Roach

Meet my friend Emily Roach. She is a "Pixie Planner". A what????? Well, just go here to find out what she does. You can also visit her Facebook page, here. Be sure to "like" it for all the latest Disney news.

Frazer UMC: Trunk or Treat

Frazer UMC: Trunk or Treat

Bama Boys, a legend and Sean's new room. ROLL TIDE ROLL!!!!

Sean with a few of our neighbors. Having a street full of Bama fans is quite lovely :-)

We have prayed since we moved in our home six years ago that Sean would have some friends on the street to play with. Little did we know, he would be eight years old with a half dozen little boys around his age to play with. ALL Bama fans. I love it because it gets him away from the TV and video games. It is such a joy watching them all play football in the front yard. I have really come to care so much about some of these precious boys. Rambunctious? YEP! But ohhh, so sweet.

Sean, Jake and Alex

Buddy has been taking Sean to some Alabama games lately. It has been a wonderful, bonding experience for them. During one of the trips, Buddy was able to take Sean into the University and the theater where Buddy spent so much of his time while in college. Sean loved getting on stage and seeing everything about where daddy went to college. One very special thing Buddy was able to do was to introduce Sean to his most influential Teacher/Mentor, Dr. Edmond  "Ed" Williams. Dr. Williams also works with the ASF student program here in Montgomery.

Staying on the subject of Bama...... Sean got a new room and a remodel. WHOO HOO!!

This is only a portion of the whole, but it is fabulous. I mean, I want to live in that room~

This is a picture of Bryant Denny Stadium. It is a 6 foot by 4 foot wall art (stick up) and nearly landed Buddy and I in divorce court. Heh, not really! But it sure was a booger to mount that thing.

Frazer's Trunk or Treat is coming UP!!!!

I am SOOOOO excited about this year's Trunk or Treat at my church. I am married to a theatre man and, well, we tend to go over the top a little (tiny) bit when it comes to anything involving building a set or dressing up. Welp, the only occasion for building a "set" or dressing UP would be Trunk or Treat. And, well.... maybe birthday parties.
Ok, sooooo you don't have to be smart to figure out our theme this year :-) We will definitely be dressing UP for this one....Stay tuned ~ More to come!!!!

Lily's party invite (sneek peek)

Ooh, La, La!!! Lily is almost SEVEN.

HOW can it be true??? I am overwhelmed with so many emotions about this.

1. Thankfulness to God for blessing me with this child nearly seven years ago after three heartbreaking losses and a pregnancy with her filled with complications, needles and bed rest.

2. Overflowing gratitude for the miracle of her life when she lay at death's door five years later.

3. Bittersweet feelings for her growing up way to quickly, right before my eyes.

4. Giddy, giddy, giddy about giving her another fabulous birthday bash.

I could go on and on but you get it, right?

Anyway, I am not sure if you have noticed or not, but.... these parties are all for ME! I was not privledged as a child. I don't want to make this post sad but, we were... well, how do I say it?? - We were POOR!
Now, there is absolutely NOTHING wrong with a simple party in the backyard, but, as a child I always dreamed of a fabulous party fit for a princess. I daydreamed for hours on end of pink in every shade, tutu's, feather boas, tiny sandwiches, candy, goodies, fabulous cakes and LOTS of friends. It never happened but my momma always made it filled with love. The dream never left me and I was blessed with a bundle on PURE PINK LOVE on December 1st 2004.
  I think I am living the childhood I always wanted. Hey, at least I'm honest. Oh, don't get me wrong, Lily is having a blast along the way as well :-)

I am usually pushy with the themes (I admit with shame) BUT, this year was totally Lily. She chose the theme and is helping plan every single detail along the way - momma taught her well - hah!
Her sweet "Shisha" designed the invitations for her. I. LOVE. THEM....
This is the back of the invitation. I am sure you can guess the theme :-)
More to come....

"I'm bringing home my baby bumblebee"!!!

The song that comes to mind when looking at this picture: "I'm bringing home my baby bumblebee"!

I sang it over and over, day after day, to my little preschoolers when I taught at Montessori Academy.

After the STJ Halloween party, we delivered Sean to a friend's house to spend the night. This meant that this glorious little "bug" was all ours. We planned movies, snuggles, giggles.... BUT, this is what we got ~ one VERY sleepy little bumblebee. NOPE, she did not brush her teeth.

Second Grade - STJ Halloween party

"Siblings invited"
That was all Lily needed to hear when she learned about Sean's second grade party.

Sean wanted to be this scary thing.... UH! Whatever it is. Grim Reaper? Oh, I just dislike it totally.
Apparently it is the "thing to be" since there were six other kids dressed just like him.

The party WAS great though. (loud) Buddy and I both went. We walked into a room filled with screaming, running and very LOUD 7-9 year olds. There was a grand buffet of food for the kids, (kids were loud)  cool, jamming music, (kids were loud) fun decorations, (kids were extremely loud) cookie cake, cupcakes and candy (Did I mention the kids were LOUD)?? HA! The parents sat in a circle around the great big room as kids came around to each of us for candy. It was chaotic, crazy, LOUD and fun. Enjoy these years as they will pass too quickly :-)

A teacher for Lily "Bug"

I started this post about a year ago......I wanted to "do it justice" so I just left it as a draft to come back to after some thought. Well, I forgot about it :(

October 11th, 2012
 Until..... today as I was scrolling down on my bloggie dashboard, I saw the unfinished post.
Where do I begin?  Because, here we are an entire year later with an entirely different teacher. But let's talk about THIS teacher.
 "Mrs Hubbie" as Lily affectionately calls her sometimes, was an absolute angel for our sweet girl when she needed an "angel" most.
After being at STJ for two years, we moved Lily and Sean to a different school. They were only there for a year. Many prayers, tears and discussions later, we decided to bring them back to STJ. We were happy to be back, but worried about the transition on the kids. Mrs Hubbard knew about Lily's accident and her switching schools. She was sensitive to all of Lily's needs and gave her extra TLC. Lily had another surgery for her tracheal stenosis during this time as well. Mrs Hubbard made sure Lily was safe in cold weather and let her rest when needed. She was also mindful of Lily's breathing issues or if she ever had any cough or episodes of stridor. What I discovered about this precious teacher though is that she gives this TLC to each and every one of her students. She truly has a special gift and a love for what she does.
When the school year was up, Lily had gotten so attached to her teacher, she asked to be held back (hah)! Of course, she DID move on to second grade. But, even over the summer (after her first grade year) Mrs Hubbard still continued to love her "babies". The kids all met her at the movies one day for a movie date. To our kids, this teacher was like a SUPERSTAR!! How awesome is that?
Thank a teacher today. They have the most important job of all ~ growing our babies.

Lily had such a fun time in the corn boxes!

and in the hammock.....

and in the corn boxes....... :-)

 

HAPPY FALL, YA'LL

Lily's great pumpkin quest!

Lily's first six birthdays

This collage makes me VERY glad I take way too many pictures and go a little over the top for birthday parties. Now, going "over the top" does NOT always mean spending a fortune. More on that later. As Lily's seventh birthday draws near, I will be trying to come up with theme/ideas. For now though, I loved this little trip down memory lane of all of her birthday cakes (with pic of her). Look out seven, here we come !!!!!

Where did this baby girl go???

A new room for Lily

Has it really been almost FOUR years??? It was November of 2007. Lily was still two. She was almost three, and we decided to take her crib down and put her in a bed. The mattress was called a "bunkie board" and was at the absolute lowest level. She still had a little climb so we put a bed rail up. I have always been hyper aware of falls for them since Lily took a tumble down our hardwood stairs at 8 months and then Sean fell (at 4 years old) down those same stairs with his leg cast on.
Anyway, I was so exited about Buddy painting her light pink walls and having her pink toille stuff that she had had in her crib. I found a soft, sweet green comforter to match and we put up a little chandelier. Voila, "big girl (sorta) bed" yet, STILL my baby girl's room. It was the best of both worlds. UNTIL.... Fast forward four years to 2011. Her it is at almost the same time of year. Lily will be SEVEN years old in about eight weeks (tear). She still adores pink, er..... only a few shades darker. She was having nothing doing with that "baby stuff" of what we called her comforter. AND..... she wanted to move upstairs to the "big room". (gulp)

So recently we took the first of many new leaps. First, we got her a real deal mattress and box springs and raised the level of the bed up. That worked out. Next, we painted her a REALLY PINK (she picked the color) room upstairs and let her pick out her own bedding. Last night was her first night with it all finished and I must say, I LOVE it!!! I did sleep upstairs with her though :-) I just can't take anymore accidents for a while so we will install a baby gate soon. In the meantime though, we are busy getting Sean upstairs as well. He has chosen crimson RED (Roll Tide). Here is a before and after of her room makeover. Will post Sean's in a few days.

A heart for "JJ" - Heart cath day!

Former Frazer family member blogs about adopting a son from China and the battle they are now facing with a heart condition he has. He is already a little miracle to have survived this long. We are all praying and following thier incredible journey.

MIRACLES ~

Cate's miracle

Patrick Quinn, One of our Frazer pastors, holds his daughter Cate. A week ago she suffered a tragic fall and landed on her head. Patrick tells of the pain he and his wofe experienced as they waited to see if she would be ok.

http://www.offerchrist.com/general/experiencing-pain/

Learning

Look how mommy padded him up real good :-)

Pinky up....

Oh... I forgot about our Disney trip. I do believe I am so far behind with blogging, I will never catch up.

I CAN take this girly ANYWHERE!

We were priveleged to recieve the great honor of a gift for Lily from an organization called "Compassion Partners". Due to Lily's pontentially life threatning condition (she is fine now) and the dignosis of tracheal stenosis, which can be serious if not treated, She was granted a wish to go to Disney World. The organization paid for Buddy, Myself and Sean as well as Lily. We went for the Fourth of July weekend and had a fabulous time. The weekend was all about celebrating the life and miracle of Lily and just having some great family time with no schedules or stress. I will say that it was about the most enjoyable trip to date. We took it easy and just did whatever we liked. Lily wanted to "Royal treatment" of course. This included the "Perfectly Princess Tea Party" at the Grand Floridian Resort and Spa. Something she has wanted to do for a few years. However, the price was a bit steep for the luxery so we never did it. With the trip being paid for, we were able to splurge a little on things like the tea party for Lily and boating excursion for daddy and Sean.

First day of school 2011

Lily - first grade and Sean - second grade
I am one proud mama. We moved back to STJ from MA. The kids are adjusting well. This is an old and much overdue post. But, since I am on a roll here catching up my blog, I thought I would keep going.

Sean has really taken off acedemically. He is reading like a pro and has such confidence in his work. He rarly makes anything other than A's. As for Lily, she is doing great for the past year she has had. She is playing "catch up" a little. Since her innitial recovery from the accident, she has had five surgeries. I think she has done quite well considering. She is starting to read and her writting is getting better. I am starting to see confidence in her work and her eagerness to learn. I think we are about to see her make great strides.

Modeling clothes

Would it be safe to say that this girl LOVES what she does??? She has modeled clothes for Julia, owner and designer of (Frogbelliesandblossoms) clothing line since she was about two or three. She pretty much runs the show now. :-)

Daddy's boy!

Sean has always been a "mama's boy". So, I can't tell you how thrilled I am that I have noticed him drifting closer to his daddy over the past year. I don't feel threatned at all. I know we have a special bond. I also know how important it is for a son to have that special and close daddy relationship. I remember when I was pregnant with Sean and being very serious about this "raising a boy thing". I took a class at Frazer called "Bringing up Boys". The book we were reading spoke about boys naturally being closer to mothers in the beginning. But, there should be a period when a boy would start to draw closer to daddy. It warms my heart to see how close they are becoming. In the past year they have gone on several adventures together. Beach trips, helicopter rides, Football games, camping trips to the mountains. Sean is loving these moments and I am positive Buddy is too. I know they are making memories that will last a lifetime.

My babies

This is JUST how I want to remember them when they are grown. I LOVE this picture because it captures and pretty much sums up their distinct personalities in a single click. Lily is carefree (always) and brave as ever. Sean is always thinking, somewhat tenative and ALWAYS in character mode. I assure you, every aspect of this outfit was thought out with careful planning. Right down to making the blue jean knee hole a bit bigger just before I snapped the picture. He was all about me taking this picture while Lily could care less. She probaby had no idea I was even standing there with the camera. I want time to slow down - it's fleeting and my babies are growing up way too fast.

Baptism reception for Dylan

Our sweet God Daughter, Kenisha and (Husband Steve) allowed us to share in their special day. Last Sunday precious Dylan was dedicated to Christ until the day comes when he can choose for himself. I was so thrilled about this that I thought we needed to celebrate. After church, we had a small reception/luncheon at out home. Dylan's "Nana", Marylew and I put out heads together to arrange some good food and sweet treats. Of course, Dylan was the sweetest treat there.

Hard to believe this precious angel will be SEVEN in eight weeks