Monday, October 11, 2021
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.
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?
Wednesday, October 18, 2017
"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
Tuesday, April 30, 2013
Growing Pains & Lunchbox Notes
We snuggled for a while and I tucked her in.
I came downstairs, fully prepared to start my nightly nagging of :
However, tonight, the nagging did not happen.
This is what he had done, totally on his own:
laid out his uniform
I looked over at him again.
(My heart leaped with overwhelming pride)
I couldn't help looking to see what he had packed.
He always tells me I don't pack him enough food :)
That's when I noticed the note:
her lunchbox. It was written on a paper towel.
Saturday, April 20, 2013
The Fight of Her Life ~ Darby Kate
Wednesday, March 13, 2013
Friday, December 28, 2012
Friday, March 09, 2012
Your Disney Friend ~ Emily Roach
Wednesday, October 26, 2011
Frazer UMC: Trunk or Treat
Bama Boys, a legend and Sean's new room. ROLL TIDE ROLL!!!!
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.
Frazer's Trunk or Treat is coming UP!!!!
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!!!!
Tuesday, October 25, 2011
Lily's party invite (sneek peek)
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"!!!
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
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"
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's great pumpkin quest!
Thursday, September 29, 2011
Lily's first six birthdays
Where did this baby girl go???
A new room for Lily
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)
Tuesday, September 27, 2011
A heart for "JJ" - Heart cath day!
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.
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.
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.
Monday, September 26, 2011
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
Sunday, August 14, 2011
Lily's last surgery
Will update my blog soon (seriously, I will) I am way behind and have much to share.