Grace Under Fire: Our Journey to the Unknown

10/15/2022

Friend and family, it’s been awhile since we’ve posted. We have just hit the year mark from the diagnosis. A year in and so much has changed and yet so much remains the same. This disease is cruel and incredibly surreptitious. The way it snakes and sneaks through our lives and slowly robs us of time and memories is breathtaking. There have not been major changes, per se, it’s the million little things that pile up and break your heart and spirit in a daily basis. New days bring new struggles and realizations that things will never be as they once were.

However there are always silver linings. Andrea is playing a lot of golf with her best friend, Beth. She loves the Braves and watches every game. She is proud of Kentucky and their football team and has enjoyed watching them this season.

Our family can’t help to be lopsided, which is weird because everyone is still here. It’s just not the same.

Please remember us in your prayers. This disease is very isolating. For all of us. We miss and love you all. We’d love to hear from you or see you.

12/25/2021

Merry Christmas from our family to yours. May the fire never dull your grace!!

12/19/2021

In this season of advent we are called to remember love, joy, hope and peace. Today at church we lit the fourth candle…for peace.

Peace. It’s seems like a concept that is ever eluding and a place we strive to inhabit. It’s something we crave. We may not know where to find peace, but we all know what life is without it.

This week has been one where peace seems to be out of reach. We finally got a second opinion by our new amazing neurologist. While he confirmed the Alzheimer’s, he did not agree with the Lewy Body dementia. He believes that Andrea is suffering from a rare variant called Posterior Cortical Atrophy, PCA. Which is basically the back part of the brain atrophying. One of the major markers of this variant is significant visual spatial issues. This resulted is Andrea’s driving privileges being taken away. A blow we were not expecting.

And the hits kept coming that day, more heavy family news and a trip to the ER with Lily for a bad case of gastritis brought on my stress.

Peace like a river did not attendeth our way, instead sorrows like sea billows rolled.

Yet in the midst of the chaos, what ever our lot may be, it is well with our soul.

For we know this to be true, the peace that passes all understanding will guard our hearts and minds in Christ Jesus.

This peace allows us to say, even so, it is well with my soul.

12/06/2021

Lewy Body Dementia: An Additional Diagnosis

When sorrow seems to surround you
When suffering hangs heavy oer your head
Know that tomorrow brings
Wholeness and healing
God knows your need
Just believe what He said

He gives beauty for ashes
Strength for fear
Gladness for mourning
Peace for despair

Amen

Lewy Body Dementia is a vile disease and diagnosis. You can have LBD with Alzheimer’s, which seems to be our case, as we found out last week.

There is not as much information about Lewy Body as there is about Alzheimer’s. But here you can find 10 things to know.

https://www.lbda.org/10-things-you-should-know-about-lbd/

Yes, God does give us beauty for ashes. And for us, He kindly extends grace under fire.

11/07/2021

This is what they tell me. This is what I want to believe.

It all is a lot right now. Life continues to go on and lives continue to march on. I am frozen…stuck.

We don’t know how to ask for help. We don’t know what we need. All I know is that something has to give.

We need more than just prayers and thoughts. We need our tribe to suit up and show up. Walk beside us, push us, pull us, let us lean on you. Anything and everything helps.

Trying to be strong is exhausting. We are exhausted.

10/24/2021

And sometimes all you need is a win!!

Thank you Braves!!!

Andrea DeRossett is over the moon!!! Love seeing her so happy!!!

Maybe it is the little things that keep you going…through the fire.

10/24/2021

Grief. Hello my old friend. It’s been awhile.

It’s not always something monumental that will stop you in your tracks.

It’s the accumulation of the little things that continue to ebb forward for everyone else, but you.

The still and quiet of the reality of the now is deafeningly silent.

I miss the noise of the everyday trivialities. I miss the din.

Today there is no fire. Today there is no grace.

Just grief.

10/19/2021

So now you know the ugly truth.

But how did we get here?

What were the signs?

Yes, you knew someone who had “it”.

Thank you for trying to connect.

No effort goes unnoticed.

There is so much to share. I promise, when I am able to get it out, I will.

Today we saw a lot of fire and not very much grace.

Thank God mercies are new every morning.

10/10/2021

10/08/2021

So they say, and while we may not see it at this precise moment, there is validity in the sentiment.

Funny thing about tragedy, is that it really has a way of showing you who is in your tribe. Those you expected to be stalwart supporters in your camp have become glaring absences. Yet the kindness of people, people who we know well and others we don’t, has been truly a cloud of comfort. People who have stepped up along side us come from near and far, and we are so humbled by the outpouring of your encouragement and love. While tragedy does bring about change, seeing the pureness of the human condition so rawly displayed has been beautiful.

Always a silver lining. Always a glimmer of grace under fire.

10/07/2021

We have the results of the test. I apologize for not posting sooner, we needed a minute to process and wrap our heads around the visit with the doctor.

The beta amyloid test came back positive, which means there is definite proof of Alzheimer’s. For Andrea this was a concrete revelation that she indeed does have Alzheimer’s. This was very sobering for her. It made it real. Which in and of itself can be very heavy. Please keep her in your thoughts.

Me, on the other hand, left with appointment with more hope and seeing a light at the end of the tunnel. With medication, the doctor believes that Andrea may regain and improve at least some of her memory. And the monthly infusion will help keep the progression at bay. What I thought to be a hopeless decline, is now a renewed sense of hope. We have got this!!! And together we are going to fight this with all we have.

This. Is. Courage.
This. Is. Grace under fire.

Thank you for being a part of our journey.

10/05/2021

Dear Tribe, tomorrow we get the results from the lumbar puncture performed last week. We both have mixed feelings. If the test comes back positive for beta amyloid plaque, that is irrefutable proof of the Alzheimer’s and makes Andrea eligible for the newest FDA approved drug. For what it’s worth, we hope that it is positive so she can start the new med regiment. Funny that we are hoping for concrete proof of a horrible disease, yet here we are!

Please keep us in your thoughts, prayers, lifted to the light and sending good juju. We will have an update tomorrow.

Thank you for being part of our tribe and extending us grace under fire.

PS-For anyone wondering about the elephant in the room…yes, I still proudly love and support the TAMU Aggies. Unconditionally! We are not fair weather fans!! Farmers Fight! It is after all, fall in the south. 🏈 ‘Tis the season!