Bless it. This has been the longest week of my life and it
is only Wednesday. I literally felt myself breaking last night. I felt a
breakdown coming on like I’ve never felt it before. As I laid my head on the
pillow last night I told God, seriously if you love me at all, that baby needs
to sleep. We’d had two straight nights of about 2 hours of sleep. He was beyond
miserable and feeling awful. Both mom and dad were feeling awful and the hubs
was out of town at his two week long training. I don’t like to test God … I
know that’s frowned upon. But friends, I NEEDED rest!
…and he provided. It
took forever to get that baby to sleep. I literally drove around for
over an hour with Let it Go (blame that one on my babysitter) on repeat.
Finally about 9:30 he was out. I worked until about midnight and crawled into
bed, just dreading the cry that would inevitably come. IT DIDN’T!! I got up to
my alarm, showered, dressed, had coffee and started my computer to log in all
before he woke up! It was such a small little blessing, that I NEEDED so desperately.
It kind of got me to thinking about the past year or so of
my life. There are so many ways that He has been good to me. So many ways that
He has shown up for me. I’m not sure why I doubt Him. I’m not sure why I direct
ALL my anger at him (okay maybe not all, the poor hub gets his fair share). But the truth is even in the midst of
unimaginable circumstances He is still good, He is still true. He is still God.
There’s a word for us in there, friends. He is still good.
The circumstances aren’t. This week has about done me in.
Mom is in the precious argue about everything stage and not one single approach
I have tried works. Everyone says just agree with her. Ok! I do that … and then
she wants to fight about me agreeing! Some days are better than others that’s for
dang sure!
No matter how scheduled and prioritized I have tried to make
myself this week – my plans have all gone SPLAT! I can sit around and feel sorry
for myself (which for me usually involves chocolate, LOTS of chocolate) or I
can determine that tomorrow is a new day, dust myself off and try again.
And well the truth is, I’m trying again. Because He has been
SO good to me, I think he’s worth it! Plus I hear He’s all about second chances…
Sorry I haven't written in a few days. It's been hectic around here. Last week I had a sick baby, this week I have sick mom. Finally got her to the doctor yesterday and bless her heart she has a severe sinus infection.
I also started my new job. I posted this on Facebook, but just for fun...my new office!
I'm actually feeling 100% overwhelmed trying to manage all of these plus learn a new job. It's definitely not going to be easy, but the flexibility is going to help out so much!
Things have been ... interesting lately. We finally have the answers that we've wanted for so long, but you still feel this like expectancy almost for things to be different. Life just keeps on going ... even when your whole world has been rocked and turned upside down.
We are going to have an adjustment period for mom to get used to me working at home. I think she came in my office about 97 times yesterday. But that's okay - that's why we are doing this! Just a learning curve that we are BOTH going to have to figure out!
I've got to be honest, I've not only fallen off the wagon lately... I jumped off, let the wagon roll over me, got back in it's way again as it passed back by. That's been the last few weeks of my life. I wake up every day and say that I'm going to get back on track - and by noon - that's usually thrown out the window!
I did get a new exercise program - so I'm hoping that will help motivate me. I started it yesterday and I am SO sore today, so that's a good sign! It's the eating thing that kills me. But I have NO excuse now. I'm at home, I can choose to eat healthier. So I've already got a great recipe in the crockpot.
Low Carb Chicken Tacos ... mmm!!
I'm learning life is just one big process. All you can do is take it day by day ... so here we go!
It feels like a door has been closed or slammed shut really. For the past 8 months we have had this cloud of uncertainty hanging over us. Even though we’ve pretty much known for a while now, there was always still that possibility … that hope.
From the beginning my mom has said she would rather it be anything BUT Alzheimer’s. It’s not even been a year since we buried my dad’s mom, who had a rapid progression of dementia due to a head injury. So for her that’s what Alzheimer’s will be like. She will forget us all. She will be a shell of a person and miserable. The reality is we are a ways off from that, but my grandma was almost 90. She lived many, many good years. Mom is 54 …
Last week’s test at Baylor was basically supposed to tell us whether or not the proteins that are present in brains with Alzheimer’s were present in her brain. The way the doctor explained it to us was that the areas of heavy protein (they have another name for it - Amyvid) would light up red on the scan.
He took us into the room and we all sat quietly while he pulled her scans up on his screen. Her brain lit up like a Christmas tree, a very red Christmas tree. My heart sank.
The truth is in my gut I knew this is why he had called us in, but there still remained that small sliver of hope. I kept thinking that maybe, just maybe … I mean I still believe that God does miracles. I see evidence of them all over. So maybe the scans would show something everyone else had missed. Something that could be fixed and then my mom would be the mom I’ve always known and life could go back to normal and this past year would be something we all laughed about one day.
But the proof that I’d been hoping for, the answers I”d been seeking stared back at me from that screen…not only was the Alzheimer’s protein heavy in the back of her brain (where she has already been diagnosed with posterior cortical atrophy) but it was also heavily present on the sides and the front. We are still in the early stages…we knew that she’s 54. What this means though is that by the age that most people experience onset of symptoms mom will be in a rapid decline. We are looking at anywhere from 5-10 years of decline.
She will have good days. She will have bad days. There will be days when the cylinders just don’t click. He expressed to her the importance of taking care of herself. He talked with her about finding something to do that she enjoys. We had a good laugh because every hobby that she could come up with she won’t be able to do because of her vision. We are still dealing with the fact that she will function very much like a blind person eventually.
Mom handled it wonderfully. Every other single trip we’ve taken to the doctor she leaves crying uncontrollably. This time she took it all like a champ. We are going to try a medicine for 3 months and then go back and see him.
For me, it feels like a really crappy ending to one chapter and a crappy start to the next. The future is unknown, it is scary. I know I will be up for the battle (and there will be many of them) but right now, in this moment, I just don’t want to think about the fight that lies ahead.
All the things I know about Jesus are still true. He is still fighting for me and with me. He has not abandoned me. There is a plan in all this crazy madness. He will find a way for his glory to be shown to others through our fight and he will hold me steady through it all.
Just when I think things couldn't get much worse ...
The boy has been extremely sick the past week. He started running a fever last Thursday. Dr confirmed a double ear infection, started an antibiotic and expected him to be much better by Sunday. Sunday afternoon he woke up from his nap with 105.6. Scared me to death ... We spent pretty much all night Sunday and all day today trying to keep his fever down. It got up to 105 a few more times, but we did the whole lukewarm bath and alternating meds to try and keep him comfortable. But he has felt MISERABLE. It has been a rough few days. Tonight he was finally acting like himself again so I'm hopeful he is on the mend. I really need him to be on the mend.
Mom did her test in Dallas on Thursday. We heard from the doctor and he wants to see us tomorrow at 3. We had originally been told he would call us with the results so I don't think any of us really know who to feel. I'm imagining he is going to tell us that her brain lit up with protein (which means alot of Alzheimer's) and so he wants to discuss options and where we go from here. There is a small part that still continues to hope things will be different...but hope is a fickle thing.
When I was growing up we always had that January Crusade with Jon Randles. For a few years, they brought in that group All or Nothing. Lately the phrase when it rains it pours has been going through my mind. I feel so completely overwhelmed. I need to be at work this week. It is my LAST week with my kids and finishing things up. Instead I'm taking care of a really sick baby and now going to see yet another doctor with my mom. When it rains ... I know lots of people feel this way though. It feels like when things are going crummy ... they just start to pile up. These lyrics popped into my head this afternoon and I've been humming them all day.
When it rains, He Pours out His love, on His children ...
I can't really remember the rest, but that part is on repeat. God hasn't abandoned me. He knows, he hears, he cares...I'm clinging to that!
I'll keep you all posted on tomorrow. I don't really even know what to pray for, but I find myself in that place a lot these days. I'm learning that when I don't know what to say ... he meets me right there. For me that's a really good place to be.
If you had told me two years ago that my life would look the way it does today, I would have called you crazy. Flat out.
Two years ago, Chris and I were just about to find out we were pregnant. The boy, who we had hoped and prayed about for seven years was finally going to be growing inside of me.
Two years ago we were in a really great place. We were happy. We had friends. Life seemed really good.
So much can change in two years.
Never, in all the situations I played out in my mind, could I have imagined that my mother would be on her way to take a test that would determine whether or not she had Alzheimer's covering her brain. Never would I have imagined that she would be diagnosed and suffering from a disease where the back part of her brain just basically dies. Never ...
For whatever reason though this is our journey. This is the path that has been chosen for us.
While The Hubs bas been gone to a training the past two weeks, I've been putting the boy to bed. (I have to say it does NOT go as well when Daddy's not here...) One of the things I love about that time is that it's quiet. We cuddle up and rock and sing songs. There is one song in particular I just keep playing over and over.
I've posted this song SO many times before ... but it really is the cry of my heart during this time.
Through it All
Through It All
My eyes are on You
Through It All
Through It All
It is well ...
So let go my soul and trust in Him
It just seems to be on repeat in my heart. I've found myself quite often during my quiet times just tell God I don't know what to say to Him and simply repeating those lines over and over. I know He knows my heart. I'm so incredibly grateful for the way He continues to meet me and love me right where I am.
I love that He is big enough for my anger, He is big enough for my fear, He is big enough for my sadness. He is just big enough. I'm so grateful for that.
Mom will be in the test tomorrow (Thursday) afternoon. We should have the results by Monday at the latest. I'm not sure what it will really change at this point but at least we will know. My heart doesn't feel as heavy tonight ... so maybe that's a good thing.
I guess I'm working on finding light ... in the darkness.
It's in my nature. I've been called a people pleaser for most of my life. And the truth is, I am. I want to make people happy, sometimes to a fault. Sometimes at the expense of myself.
This whole experience has really taught me that I can't please everyone. It's taught me that it's okay to not please everyone.
People seem to have a lot of suggestions for how we should be doing things. People seem to have a lot of suggestions in general. I literally sat with someone today who told me they are curing Alzheimer's with diet and exercise. I wanted to be like, "Oh really?? Is that all we are missing? Thank you so much!" I know people mean well ... they do, sometimes it is just annoying!
I'm struggling with what people think today because I'm in a situation where I am disappointing some people. I am having to put my family first and make some decisions that some people won't agree with. It's hard for me, because I want to do what I feel is right, but I also don't want other people to be upset with me. So today I'm claiming that my best is enough for God, even when it's not enough for others.
I have not only decided to move back in with my parents, but I am going to be leaving my current job and taking an online job that will allow me the opportunity to stay at home with my mother. The school district that I work for has been very generous and kind in allowing me to do this. Ultimately, this decision is not about me, it is about my mom and for right now she gets to come first.
I will miss my students GREATLY. They are why I do what I do. I will miss watching them realize how smart they actually are and achieve the success they are looking for. I will miss investing in their lives and my own life becoming so much richer because of it.
However, I'm trusting in this moment that God is big enough. He has a plan. NONE of this is catching Him off guard or by surprise. He is still sovereign and He is still directing steps.
I'm also realizing that all I can do right now is put one foot in front of the other, giving Him my very best. He will meet me right here where I am. He's not asking for anything other than a next step right now. So that's what I'll do. I'll keep clinging to Him, taking each step and trusting that He is not going to let me fall...too hard.
So many emotions have floated around in my mind and my heart the past few days. I hate everything about what is going on, BUT I have decided that I cannot let that burden me anymore. I hate the saying it is what it is ... because I want to be the person that says no I don't accept this! But in this circumstnace, it kind of is what it is. There's not a lot I can do to change the circumstances. I want to fight them. I want to learn absolutely everything there is to learn about all of this and I want to search for trials and research and absolutely anything available out there. At the end of the day though, I know that for me it will be best to just face this diagnosis head on. It is what it is. I wish I could change it, but right now I can't. That won't stop me from fighting, but it will help me in accepting.
I refuse to be beat by this though. I refuse to crawl into the hole (the one that is dark and I know so well) and let it win. I have written before about my struggles with depression. Right now, I honestly belive were it not for my child I would not be getting out of bed. It literally takes everything in me to roll over and turn on the light, climb out of bed and face each day. But I refuse to live with this cloud hanging over me. It sucks. We know that...we can all agree to that. But she's still here. It is not the end for us yet.
So I want to cherish absolutely every single moment. I want to live life to the fullest every single day. I've had several people question our move out to my parent's house. You know, let me just be honest for one minute, no at the end of the day I did not see myself at 32, married with a kid, moving in with my parents. But you know what, I didn't see a lot of this coming. Right now us being in their home allows for several things to happen.
One, it allows for my mother to spend enormous amounts of time with her only grandchild. It allows her to make memories with him, that even though she may forget and he may not be old enough to remember, I ALWAYS will. As I sit in the evenings and watch the two of them play Legos or drive around in his car, my heart gets extremely heavy. Because I know what this diagnosis means for our future, but I want to embrace today. I want them to have the best, most loving relationship there ever was between a kid and his nana. She deserves that.
Two, it takes some pressure off of my father. For those of you who know my dad, you know he is not what we would call a super emotional guy. However, I have seen this man step up in enormous ways in the past 6 months. He has been there for my mother like absolutely no one else. He reminds her that they promised for better or for worse, in sickness and in health, and he tells her that she is not going through this alone. If I can do even one thing every day that makes his life a little easier, it's worth it.
Here's the thing, I don't really care if you agree. I don't really care if you think I'm making the right choice. I'm doing what I feel is best for my family. Realistically, the research shows we won't have a whole lot of years left, especially GOOD ones. So I'm going to smother the heck out of my mom, spending and soaking up as much time with her as possible. And if you don't like it - go tell someone else! :)
This is what I realized last night: I don't want to waste what precious, little time we have left. I don't want to look back 10 years from now and wish I'd have taken it all more seriously. I don't want to look back and wish I'd have spent more time with her than worried about the future.
I don't know what tomorrow holds. My mom told someone yesterday life can change in an instant. It really can. I'm incredibly grateful that I still have her and so I'm going to spend those moments making memories that will l ast forever.
You know me and my lyrics. A friend keeps sending me this, even though we both know it's going to make me cry every time! :) But it is SO GOOD!
Just Be Held
Casting Crowns
Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on
And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down and let it go
So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held
I'm not even sure where to start. I'm really only writing tonight because I know the armies of prayer warriors are anxious to hear.
The news was not good. It was actually what we at one time said was our worst fear. To sum it up as best I can, the doctor detected significant shrinkage in her parietal lobe. This is a syndrome which is called Posterior Cortical Atrophy (PCA). This syndrome is most typically caused by Alzheimer's but can also be linked to our original diagnosis of Lewy Body Dementia. There is a new test that has only been out about a year and it is only done in Dallas and Houston. This test uses a radioactive dye to show the doctor if there is protein on the brain, where and how much. The test would be fully covered by insurance if it was for cancer purposes, but since we are dealing with Alzheimer's the test is not covered at all. We decided we would like to go ahead and have the test for a very simple reason. The test will let us know if we are dealing with Alzheimer's, which can be slowed (not stopped) some with medicines. Otherwise there is no treatment that we can really do.
The course of PCA is not a good one. Basically the brain is unable to process information. So she would eventually function like a blind person not because her eyesight is bad but because she is no longer able to process what she is seeing. For example, she might be looking at something right in front of her like a glass of milk, but is unable to find the glass of milk because her brain cannot process that it IS a glass of milk. Confused? It's still very confusing to me too, so don't worry. It's a grim prognosis and one that there is very little research about. Here is one thing I do know ... and had confirmed multiple times today, early onset dementia is actually nothing like regular alzheimer's and dementia associated with older people. While there may be similarities...having this disease onset in the early 50-60's range is quite different. We are dealing with a monster of a disease that very little is known about. However, unlike alzheimer's in the elderly, my mother will be completely aware of all that she cannot do at this time. She will be aware of all that she is losing. She will be aware of all that she struggles with. There are so many other differences that I will go into later because I think it needs to be said.
One thing the doctor did talk with her about is important enough to mention here. She wanted to talk to him because SO MANY people say to her that she looks fine. They tell her that they have the same problems as she has and so she wondered if maybe everyone is making too much of this. (I could and DO tell most of the lovely, well-meaning people who say this to me that you are welcome to spend more than five minutes with us and I guarantee you you will notice the changes.) The doctor was adamant that one of the things about this disease is that is a silent. She does not lose her hair like when battling chemo. She does not lose a limb like when battling a clot. She loses her mind, which NO ONE can see. There will be plenty of MOMENTS that she will seem totally normal. However, he stressed to us how harmful continuing to tell her she looks good can be. That's not to say you should tell her she looks awful. But perhaps just don't try to offer your own diagnosis of her condition. What we are battling is VERY real and when people say things like this they are unknowingly diminishing that in her mind. Her understanding how real this battle is, is VERY important.
As a family, we don't know how we feel. Defeated is a word that comes to mind. This is hard to face on so many levels. As we were leaving, the doctor asked me if I had any questions. I talked to him about how quickly she has gotten worse over the past few months. He hugged me tight and said I wish I could tell you it will get better, but I can't. It will only get worse. (It's a good thing I really like him.)
We are also determined. Dad, my brother and I sat down tonight and talked through some things. We made some plans and just processed a little bit together. We are going to fight this as a family. We are going to be there for each other and do whatever it takes to support mom. That much we know.
The test will be next Thursday in Dallas. The doctor will have the results the next day and we will go from there. The crazy thing about all this is that it feels so hopeless. There's really not a lot of fighting we can do ...
When I was putting the boy to sleep tonight. We were listening to some PraiseBaby (apparently my child is addicted to that stuff). The song Forever Reign came on. I played it on repeat for about 6 times. I NEEDED the words. That's what I'm leaving you with tonight.
