New Normal

Before I let you get too far into this I need to make an apology and a disclaimer. First, to the well-meaning, wonderful person at church who stopped me to tell me how wonderful my mother was doing and you had your head bitten off and handed back to you, I’m sorry. You are right in those few minutes that you see her on Sundays she seems to be doing really good. So I’m sorry I lost it. I’ll explain myself in a minute before I get too far though here’s my disclaimer: If you want to keep your rose colored glasses on stop reading now. This won’t be a pleasant post. It probably won’t be an easy read. So you’ve been warned. If you send me an email/message letting me know that it wasn’t a particularly positive post, I’ll probably just say told you so. :) (In a nice voice of course)

So here’s where I am…I HATE, absolutely, positively HATE this disease. It is the stupidest, most horrible, hateful, lying, stealing jerk of a disease there is. I would gladly give it my time, my sleep and all the things it is taking if it would just leave me my mother. Is that too much to ask?

Mom has gone downhill FAST. This is probably why when the sweet person told me how great she seems to be doing I lost my ever loving mind on them. She is not doing great at all. AT. ALL. Even our doctor has been surprised at how quickly it is moving and progressing. The past three weeks of my life have been hell. I’m sure that’s not nice nor is it politically correct, but I don’t care, it is honest. I have cried myself to sleep more nights than not and have actively started thinking of how I will not let this happen to my own children.

I won’t go into specifics for you, but trust me things are not good. She is not doing great. One of my closest friends in all of this is someone who is going through this situation as well. Her experience is different than mine, but we have found such comfort in each other and in being honest with each other about this journey. Our pet peeve is when people tell us how great our “person” is doing. We want to smile politely at them and tell them to take our “person” for an hour and then get back with us. I say that not to guilt anyone who has said this to us, but to help you understand, there is no doing really great with this disease. People who suffer from this disease are master fakers for as long as they can be. They don’t want you to see their fear and confusion. My mom got lost in our church on Sunday. She wandered around for close to 20 minutes before someone found her and took her back where she was supposed to be. But I would bet my paycheck that she ran into several people that had no clue she was lost. She wouldn’t tell you. She wouldn’t want you to think she was unable to find her way. She’d do everything in her power not to let on.  

Another thing I want to help you understand is that she will NEVER get better. We will have some days that are better than others, but we will never be better.  Even the very best medicine that they have available (which we tried) does not make us better, it only slows the progression. However, the med we had to switch to seems to be speeding that up, or else the previous med was doing a really decent job! Any who I felt like maybe that needed said.

This is an ugly, ugly disease. I know most people don’t know what to say or do so let me offer my humble advice, don’t say anything. Just love us, love us in the middle of this mess. Give lots of hugs, do lots of praying and know that it IS enough for us.

Okay enough of that. Sorry for my rant. I’m trying, really trying, some days I do better than others.

Lately my mom has been telling me I need to “get back to the Lord.” I love her, bless her heart. She still operates out of that awesome southern Baptist place of your works = your commitment and dedication.  If I’m not involved in lots of church things, well I must not have a very strong/close relationship with God.

I’ve worked for a very long time to overcome this way of thinking. This is the kind of thinking I grew up on.  I’m not saying it’s right or wrong, but for me it was not helping my relationship with God. It was making me fear him every time I missed a quiet time.

I’ve been reading a devotional that someone gave me. It’s been really good for my heart, but also something that is hard to swallow some days. Here’s a taste:

“Good works aren’t something you have to produce for God. He has already planned your good works in advance. Your role is to understand who you are and live as your authentic self…You don’t have to try to do religious deeds. Simply be yourself, knowing that good works aren’t your gift to God but are His gift to you. He has already planned ways for you to honor Him through your actions today. Go through this day with your Spiritual eyes open, and He will show you opportunities to glorify Him.” – Grace Walk Moments

So here’s where I’m at lately…I’m trying to learn to live as my authentic self. There are some days, lots of them actually, when I’m not even really sure who that is. My life is so busy right now. I work a job that literally takes up most of my evenings and weekends, I go to graduate school, I have an 18 month old, and I take care of my mom. The hubs and I got away on Friday night when his mom was here, and it was just so nice to have dinner together with no one else. I have no idea what a normal life looks like anymore. I pretend everyday I’m going to the gym, but by the time we get the boy in bed, I’m either working or sleeping…so it never happens!   But I suppose most of us have no idea what normal is … so we embrace our new normal, whatever that looks like. So that’s where I’m at. I’m trying to embrace my normal. I’m trying to find myself in the midst of all of the rest of it. You know what I’m learning is surprising me…

I’m learning I don’t have to DO anything. I just need to BE. I know, I know, this is the same thing I was learning two months ago and probably even last year, and the year before that … but apparently I’m stubborn (or so some people say…). I’m just trying to BE. That might look different every day … but that’s okay.

Who knows maybe someone needs to hear that today. Stop trying so hard. He never intended for us to work so hard at being what we think He wants us to be. He just wants us to be. There’s something really freeing in that for me, how ‘bout you? 

Trying ...

I've been mulling around a blog post for a few days. I finally finished Still Alice and I have a lot to say about that, but I'm still working on separating the words and my emotions. I will say this, PLEASE READ IT. I think it is an incredible look into the mind of someone suffering from this horrible disease. It gives us an idea of what they must be feeling and that is something we all need to be more aware of. I've got lots more to say on the topic, but today it's just too much.

I'm a member of a group of Early Onset Children and today someone shared this with me.

My dear girl, the day you see I'm getting old, I ask you to please be patient, but most of all, try to understand what I'm going through. If when we talk, I repeat the same thing a thousand times, don't interrupt to say: "You said the same thing a minute ago"... Just listen, please. Try to remember the times when you were little and I would read the same story night after night until you would fall asleep.

When I don't want to take a bath, don't be mad and don't embarrass me. Remember when I had to run after you making excuses and trying to get you to take a shower when you were just a girl?

When you see how ignorant I am when it comes to new technology, give me the time to learn and don't look at me that way ... remember, honey, I patiently taught you how to do many things like eating appropriately, getting dressed, combing your hair and dealing with life's issues every day... the day you see I'm getting old, I ask you to please be patient, but most of all, try to understand what I'm going through.

If I occasionally lose track of what we're talking about, give me the time to remember, and if I can't, don't be nervous, impatient or arrogant. Just know in your heart that the most important thing for me is to be with you.

And when my old, tired legs don't let me move as quickly as before, give me your hand the same way that I offered mine to you when you first walked. When those days come, don't feel sad... just be with me, and understand me while I get to the end of my life with love. I'll cherish and thank you for the gift of time and joy we shared. With a big smile and the huge love I've always had for you, I just want to say, I love you ... my darling daughter.

Original text in Spanish and photo by Guillermo Peña.

Translation to English by Sergio Cadena

I fail at this so miserably everyday. God help me to be the daughter she needs me to be. Help me to learn to be selfless and loving and pour out myself for her. Help me to be patient and kind and loving. This is my prayer tonight ... God help me.

New Year... and all that.

Well, it's hard to believe that it is 2015. Sort of, I'm not going to totally lie, I wasn't like in shambles saying goodbye to 2014. I was kinda ready for it to be in the rear view mirror, if ya know what I mean!

I am one of those weird, crazy people that really loves the new year. I love the feeling of a fresh slate, a clean start, that speaks to me. I love to make goals for myself and then spend a year attempting to get there!

 I've got a lot of things swirling around in my brain with this new year that I am hopeful will develop over the course of the next year! Some I might share and others I may not. One thing I am going to try and put more effort into is my blog. I love this blog. It really is a way for me to process and deal with all the things spiraling out of control in my life. It's a way to keep people up to date on what's going on with us and honestly, I hope it gives people a direction in which to pray for us. So I will commit to working on it more, I promise.

The end of this year was whirlwind. Honestly ... I still feel like I'm just now able to come up for air. I took a job working from home so I could help out more with mom. I'm glad I did, and I wouldn't change that for anything. But it is REALLY hard. I am still not totally sure it's what I need/want to be doing, but I'm taking my time to try and figure that out. One of those new goals I was talking about is going to be really working on organizing my day and my time and setting some better boundaries for myself. We will see how that goes

The holiday season was tough. I didn't realize how much my mom always did until she couldn't do it anymore. Most days I did good just to get us all dressed and through the day, let alone accomplishing half of the tasks on our to-do lists. The two week vacation has been much needed and really good for me. I won't say I'm excited to go back to work, but I am excited to start working on some of those goals/commitments.

Anywho ... here's the latest on our life!

Right before Christmas mom went back to the doctor. They were really concerned because she had lost about 18 lbs in 2 months. I know, I know, I wish I had that problem too, but she didn't have 18 lbs to lose and it was really affecting her health and body functions. She claimed the meds were making her nauseous all the time so we've switched meds. There were several down sides to the doctor's visit. The biggest being that the doctor does believe this disease is moving extremely fast. We all knew it was a rapid moving disease, but none of us have been prepared for just how quickly it is moving. The second downer was that the med she was on is the best out there currently. So nothing else that we put her on is going to help quite as much. It's funny because had you asked me before he took her off it if it was working, I probably would have shrugged and said not really, but once she was off it for two weeks it was AMAZING to realize how much it really was helping. She is eating better now, but not really gaining weight. It's kind of a battle for us, but something we are working on!

To say life over the past few months has been hard is an understatement. I know, I know ...

I'm working on growing up and dealing with it all! But one thing I am really working on is just adjusting. I have done  A LOT of reflecting over the past few weeks. I think I was living in this weird place of denial. I think I honestly felt like if I could just take care of things and make things easier for her, it wouldn't really be happening. But I've worked myself sick and exhausted and she just keeps getting worse, so there goes that brilliant plan! 

So I think I am just trying to work on making adjustments. I'm working on giving myself some grace. This is a crummy situation, I absolutely one hundred percent hate it! But... I am going to do my very best in dealing with this and just continue trying to take it one day at a time! 

To say there is a learning curve is an understatement :)! 

So here's what I've learned this year, life moves on. Your world crashes, it falls apart and life just keeps moving on. God is still good. He is still faithful, but life is still hard. His goodness doesn't change. But you do. You get stronger. You fall down (A LOT). But you get determined and you just keep moving forward. 

There are a lot of things I want to be different in 2015. There are a lot of things that will be hard in 2015. I guess for me I want to continue making memories, loving the time we have left and making the most of it all. 

Happy New Year, Y'all!