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?