How 'bout an update?

I was scrolling facebook the other day and saw one of those memories feeds that makes your heart stop. It was right about this time four years ago, that we went to the very first specialist in OKC. We had no answers, just lots of questions and lots of unrest.

Four years.

It is completely unfathomable to me how much has changed in those four years. I am constantly running in to people who ask how my mom is and then seemed a little startled with my answer. I have said from the beginning I don't sugarcoat when it comes to this. I won't give the standard, "we're doing ok," answer with a smile. I just can't. This disease is so ridiculously brutal. It is hard. It is crap, but I do find myself settling on it is what it is more often than not.

My mom can longer feed herself, bathe herself, put on her clothes, tie her shoes, form complete thoughts ... but please tell me more about how great she looks and how she knew who you were when she saw you last.

She has lost so much weight we've stopped counting.

She is dying. Let me say it again to be sure that you understand. SHE. IS. DYING.

That is our reality. That is our burden to bear. I don't say it to be mean, I don't say it for sympathy, I say it to help you understand. The odds that my mother will be around when my kid starts first grade - they aren't good.

So often people hear Alzheimer's and dementia and they think of a long drawn out process. Often, that is true...for your grandparents. My mom is 58. I watch so many people come into the bakery, enjoying their grandkids and living in what is probably the prime of their life ... and I grieve for what we've lost. I grieve for what we will never have. My mom is dying. It's a reality we have to live with every single day.

And trust me I get it...people don't know what to do or what to say, so often they do nothing. You know what I'd wish you'd do...show up. Visit her. Sit with her. Give my dad a break (that man deserves more accolades and awards then he will ever get). Stop asking us how she's doing and telling us you really need to come see her, unless of course that is what you have to do to assuage your own guilt.  Because here's the ugly truth ... while she is dying, she's not dead yet. And believe you me I understand being busy. Lord do I? But you know what, not a day goes by whether I've been at work for 14 hours or 9 ... that I don't see my mom. I'm not asking you to come everyday. I'm just suggesting that maybe instead of wondering how she's doing you could know for yourself. You could spare 20 minutes (difficult as they may be) to sit with her while she can still sit. To make her feel like the whole world hasn't forgotten her or abandoned her because her brain sucks.

Well this has certainly taken a turn, but maybe it's been four years in the making. I would say I apologize if this offends you but I don't. This is our reality. I understand that. It's not yours. I understand that too. But you asked how she was ... and I'm just being honest.

Self Care

I'll be honest. Self care is HARD for me. Honestly, the hardest part of it is that I feel guilty. There are dishes to be done, laundry to be folded, bills to paid, so taking time to just relax and have me time, well it's hard.

However, I've learned how important it is for my sanity. Self care makes me a better wife, makes me a better mom and it definitely makes me a better daughter. Self care also looks different every time. Sometimes it is driving alone to get groceries listening to whatever I want, sometimes it's a long hot shower, other nights a walk outside. The important part is that I carve out time to do it. Lately, podcasts have become a big part of my self care. They allow me to escape for an hour! I listen to them on the treadmill, in the car ... really just about anywhere and I can't get enough!

I figured it would be fun to share a few of my favorites with you! Here's my top three right now! This list changes periodically (although the Popcast is always at the top!). Enjoy!

I LOVE podcasts. I don't know when I got old ... I used to always make fun of my husband for listening to talk radio - but now I can't enough! Here are three I am addicted to this week!

Popcast 

Ya'll these two people are like my favorite people on the planet and I don't even know them. I literally cannot wait for each week's episode to drop. My hubs and I support them on Patreon so we can get access to their special content. I live for the weekly bachelor recaps ... and sometimes I don't even watch the show, I just listen to them! LOVE them!!

Atlanta Monster 

So if you like true crime ... this one is a doozy so far. I love true crime and got addicted to Up and Vanished so when they came out with this one I was in. I'm only 3 episodes in and completely blow away!

Dirty John 

So I tried this one when it first came out but was super busy and didn't get to finish ... I started it again this week and love it. It's a little risque at times ... but super good.


What podcasts do you listen to??

Let it Matter

This is a word for those of you who aren't sure what to say to those of us who are hurting. This isn't an attack on anyone who offers support - please know that. This is simply the ramblings of a girl who is in the midst of losing the biggest supporter of her life. This is the ramblings of a heart that feels like it is living in a perpetual state of breaking. So take it for what it is ...

Sometimes the best words we can offer to people who are hurting is that we love them, that we are sorry they are hurting. Somewhere along the way we've adopted this mentality that we just have to force that smile and focus on the good. Remember the good times. There's a time for that - I know there is, but sometimes people need to hurt. I honestly feel like I am in the longest grieving period of my life. I feel like everytime I think I make some leeway something happens to set me back about 100 feet again. Sometimes I wonder if it will ever end ... then I am reminded that it will and that will be worse then even this is. But I often feel the need to suck it up, plaster a smile and make sure I don't make people uncomfortable.

Anywho like I said rambling ...

I know we always feel like we don't know what to say to people who are hurting. Honestly, I don't have the answers. I won't pretend to tell you that. What I will tell you is that one of the most amazing gifts of friendship I have been given is a friend who lets me hurt. I have a friend, she knows who she is, and she is a treasure. We don't have a conventional friendship. We don't hang out much, or even spend that much time together ... but she is a gift in my life for so many reasons. One is that she lets me hurt. She has never made me feel like I need to reign it in, or buck up. She lets me feel the things that are hard and not once has she ever run away. I don't talk to her everyday - but somehow she shows up when I need to be reminded it's okay to feel.

Actually, she's taught me a lot about feeling. I kind of became one of those people who pushes all the hard stuff away and doesn't really deal with it, until it blows up on e'rybody. She's made me face it. She's made me feel it and I am a much better person because of it.

So sometimes when I need to be reminded that the way I'm feeling is important, it's a part of this process, it is the ONLY way I will ever make it to the other side, I put this song on and I let it matter. I let it all matter even the parts I won't ever write about, because it does matter. My hurt, my pain matters .... and so does yours. <3

Let It Matter

Johnnyswim

I don't want to feel better
I don't want to feel good
I want to feel it hurt like losing someone should

I'm gonna let my heart break
I'm gonna let it burn
I'm gonna stake my claim with the flame I know it hurled

Run baby run
Don't you know I've tried
But escape is a waste ain't no use in hiding
you know the best way over's through

So if it matters let it matter
If your heart's breaking let it ache
Catch those pieces as they scatter
Know your hurt is not in vain

Don't hide yourself from the horror
Hurt today here tomorrow
If it's fragile and it shatters
Let it matter, let it matter

I'm Baaaaaaaaack!!!

It's been a long while. I'm feeling it. I haven't written in FOREVER!  If you ever read my blog at all, you know I really write more for myself than anyone. I use it as a way to process and I have definitely been missing it.

Life is pretty much the same as it was two years ago. I mean I've added a bakery so that's new. But I still have an amazing little family and I still miss my mom more than I can say. This disease is even more brutal than I could ever have imagined and I hate it with a passion I didn't know I had. But ... it's our life. We still try hard to make memories and spend time together. I'll write more about her later.

But today I want to come back to writing talking about my word for 2018. Actually my word for 2017 was brave. I tried hard to be brave and there were times I can look back and see I overcame some fears and I jumped in.

I let down my walls with some friends and God gave me some really good friendships. I took a big ole swan dive into owning a bakery. It's going so well, even though we still have lots to figure out! I dealt with a health scare with ole Asher Man and towards the end of the year another one myself. I wasn't always brave - that's a hard word to live up to, but I tried and for that I'm calling it a win!

I've been thinking a lot lately about 2018. At first I decided I wasn't doing a word. But then I thought about how much it helps me. It keeps me focused sometimes and I know God uses that word in my life through the year. So I've really been thinking and praying about what it should be. I've gone through quite a few. At first I was sure it was supposed to be serve, then I landed on balance. Honestly I just didn't have a lot of peace about either one. This morning we were driving back home and I was listening to a song. This song has become one that I cry to quite often. It's called Georgica Pond by Johnnyswim. In it the singer talks about losing her mom. It's a song that when I need a good cry I put on. It came on our Pandora and as I was listening I was thinking about what all this year could possibly have in store. Some if it will be scary. Some of it will be amazing. Some of it will be hard work and some of it will be fun. Some of it will be heartbreaking but through all of it I know one thing will stay the same. Jesus. He will not let me down, He will not be surprised, He will not abandon me. I can trust Him. And in that moment I knew my word ...

No matter what happens in 2018...I am not alone. I will inevitably continue to lose my mother and watch her fade into only a shadow of who I used to know. There will be highs and lows but through it all I can trust that God is for me. There may be times I have to cling to that word with all that I am ... but then that's what makes it a good word!

What about you? What's your one word for 2018?

I'm so happy to be back writing even if I am the only one who ever reads these words. I need to be writing them. Thanks so much for reading!

Til next time,

Moving

This blog is no longer active. I've moved to the address below!

Please follow me over there, I think it will be much more user friendly for us all! 

www.hegivesgreatergrace.com


See ya there!!

Not Enough

So remember a few weeks ago when I wrote about the darkness? It was bad. It had been bad for a while now. I think I thought I was hiding it better than I had been but it was there BIG time.

Once I finally admitted how bad things were I floundered around for a few days trying to figure out what to do. Then one day I just decided to get up. I decided I was the only one who could pull myself up out of that hole…

So I started paying attention to what I was filling my head with. I started carving out time for myself. I started caring. Let me tell you finding time for me has been the hardest part. I’ve actually been getting myself up around 4:40 every morning. I go to the gym (most mornings) then I come home and have time to spend some quality time in the Word. It has also helped me not feel so stressed and rushed in the mornings.

Another thing I’ve been doing is meal prepping on the weekends. It has helped SO much! All we have to do is grab a meal and read the directions … but that’s a whole other post!

So I’ve also been reading a lot! I’ve grabbed the people whose words are good, whose words breathe life and I’ve been saturating my brain with them. And you know what? It’s helped. I feel better. Even on hard days, I feel like I’m in a good place.

Things are still hard. I still feel like I’m in this long process of losing my mother and there are days when I don’t really want to care or try, but I’m working on giving myself some grace on those days. There are mornings when I didn’t even get home until 9 the night before … my alarm goes off and I just want to sleep. I’m working on giving myself grace on those days. There are days when I NEED a cheeseburger if I’m going to make it through and you know what? I’m working on giving myself grace on those days.

Why is grace so hard? Why do I usually offer it so freely to others and have such a hard time with offering it to myself?

I want to believe the absolute best about people. I want to believe there is still good in this world. I want to offer 2^nd and 94^th chances for people to turn it around because I’ve been offered the same. But when it comes to giving myself that same chance … well … it’s just hard.

I’ve been thinking and reading a lot about grace lately. I’m currently doing two online bible studies and I would encourage you if you aren’t partaking to get on board. Every morning you get the devotional sent to your inbox. They are not laborious devotions with mountains of questions to answer and passages to look up, although those have their place as well, but in this busy season of my life I need simple. I need the heavy lifting already done for me. I just need to soak it in and let it saturate.

She Reads Truth (http://shereadstruth.com/) has monthly plans. It gives you scripture and then it gives the devotion, followed up with some application at the end. The other one I adore right now is If:Equip (http://www.ifequip.com). This one is just scripture, that’s it. Then a short two minute video to pull out some good stuff at the end. Just soooo good. Trust me on this, have I ever led you wrong here?

Okay but back to grace. So this morning in my reading I found this gem…

Grace is the great leveler — we all need it, heaping amounts of it, all the time.

We ALL need it. All the time. Do you know who is included in that we? Yep, us. We need it. It is our life blood. It is our fight song… we need Grace.

 

 

Do you know what the most beautiful thing about this is … it’s ours for the taking. One of the hardest things for me is coming to realization that I CANNOT earn this grace. I cannot be good enough, smart enough, studious enough, put together enough, feed my kid all the healthy meals enough, take care of myself enough, protect and guard my marriage enough, treat my family lovingly enough … anything enough to earn this grace. I CANNOT earn it. I have to take it.

That’s hard for me.  I would bet I’m not alone here.

This life is hard. It knocks us down … hard. But through it all… God does not abandon us. He does not leave us. I love this …

When we are faithful and when we are faithless, our God reigns. Whatever the circumstances we find ourselves in, He is the one true King.

Gah so good! It just takes the pressure off. Do you need the load lightened today … there is hope. Don’t give up. Keep fighting, keep going and know that our God reigns.

Update on Life and the Walk to End Alz

I have had good intentions of writing more … but it just never seems to work out. There are just never enough hours in the day, especially when all I want to do after the boy goes to bed is binge watch Netflix J!

Things around here are moving along pretty steady. We have good days; we have not so good days. Then we usually throw in a couple heartbreaking days, but overall we are doing pretty well. My dad amazes me daily. He has become the full time caregiver. Mom can’t be alone really at all, but at least not for more than a really short period of time. She wanders, gets lost, and gets so easily confused, it’s just not good for her to be alone. One of our current struggles is getting her to tell us when she goes somewhere. We’ve had evenings where we search the house over and can’t find her anywhere. Panic sets in and then someone spots her on the back porch. We’ve made a rule she has to tell us when she goes outside, but she forgets. This is just how living with someone with this disease is though.

We are learning to manage and take the difficult days in stride. They don’t knock us down quite as hard as in the beginning. It’s so sad how you just learn to accept this stupid disease.

We are about to embark on some serious change. We spent time talking with our old doctor before he left us L and everyone decided that if we were going to do this now was the time. So the hubs and I are about to buy my brother’s house, he and his wife are going to buy my parent’s house, and then my parents are going to build a very small house in between both of us that will be handicap accessible. The loans have all been approved we are just waiting on appraisals at this point. I think it is going to be really good. Mom and Dad will be building something small and simple. It will be catered specifically to her and what her changing needs are. The doctor feels lie as she loses her sight completely this will be a good step in having a place for her to feel comfortable.

We don’t talk about this much but…there will come a day when she won’t be able to care for herself at all. On the heartbreaking days we see glimpses of this and it stinks, but my dad wants her at home with him for as long as possible and building this home can help with that.

In October we are going to see a new doctor. She’s terrified. They most recently went to see a doctor here in town and it did not go well. Within two minutes this doctor decided that mom had been misdiagnosed and had MS. I could write a whole post on how angry this makes me … but it doesn’t matter because she won’t be seeing him again. We are going to see Dr. Hope in OKC.  We are hoping that she will be able to just help us manage as we progress. Mom is terrified she’ll want to do more tests and stuff we just don’t want to deal with. I’ve told her we won’t. We are in charge of her treatment. It stinks our doctor left but we will figure it out…one step at a time. That seems to be the motto of my life lately!

Lastly, I just want to talk about the walk! Oh my gosh you guys…I’m not even sure I have the right words to say because THANK YOU just doesn’t seem like enough.

On August 12, I posted and said we were about 61% of our goal. Today August 22 – 10 days later – we are $10 away from our team goal. I want to blow our team goal out of the water. I can’t even explain to you what this means to my mother. Every time I tell her someone new has donated or joined her team she cries. She keeps telling me she didn’t know all these people still cared …

It’s not too late to join us or to give. I’ll post the link below. 

http://act.alz.org/site/TR/Walk2015/OK-Oklahoma?pg=team&fr_id=7738&team_id=259183

I’m also trying to have some t-shirts made. Can you let me know if you’d be interested in purchasing? They will have this on the front:

And then on the back hopefully it will say #we <3 Susie.

I need an idea of how many I need to order. I’ll be reaching out to you soon who have joined our team and our planning to walk with details. If you are planning on walking with us but haven’t joined (or just don’t know how – like my sweet Mammaw) reach out to me so I include you in the planning. The walk is three weeks from today – eek!!

As always the support and encouragement you give blows us away … thank you.