In Michigan we are currently getting a ton of snow. I hope those that are local are ready for it, cause winter is here. It looks like we will have a white Christmas.

Speaking of Christmas, have you ever done an advent calendar at this time of the year?  I never did one when we were kids, but Hunter’s ‘Regular Grandma’ got her one when she was 5, I think.

Note: Hunter has 4 Grandmas and 1 Great Grandma so we have names for them all :).  Phyllis is of course just Grandma, my Mom is Harmony (할머니 Korean for Grandma), and Regular Grandma (Sometimes Grandma Sarah) is John’s mom. Hunter came up with the names, so they have stuck after 11 years.

Now, with the advent calendars, the one Hunter got the first time was a little piece of chocolate in every day. As a momma who tries to monitor the sweets (yes, I am that momma), having chocolate every morning before breakfast wasn’t going so well with me. However, Hunter loved it and I kept up with the tradition every year, but I changed it up a bit. I found these Lego advent calendars a few years ago. So we have the Lego calendars now and do this along with the Avon advent tree Phyllis got me in 96. So every morning, Hunter has fun with the little surprises waiting for her when she wakes up. This year she got the Star Wars Lego advent calendar. I did mention I am a nerd/geek and Hunter is following in my footsteps, we are a little excited for the Rogue One movie next Friday.

The advent calendar got me thinking. With the changes we are seeing with Phyllis. It reminded me that every day is a gift, like the advent calendar.  I know that sounds corny but it is true while dealing with her ALS. Except, some of the ‘surprises’ we are getting each day are pretty hard to deal with. But, I try to think about the positives in each day. Like, being able to ask her how she is over messenger. Getting her to smile and laugh when I ask if she wants me to slap my dad for joking and aggravating her. Or getting a call from my dad and it is just a general question on how my day is and not one in panic because something is wrong.  It is the little positives I look for each day.  Because as my dad said this week, ‘we are taking it day by day now.’

Update on Phyllis’s ALS for this week: This was a rough week. We had some scares on Wednesday and we spent some time in the ER. I have to say that U of M is pretty awesome.  I had calls from the nurse, the social worker (we were assigned one from the ALS clinic), and her neurologist. Each of them asked how she was, how we were, and while being honest with what we were dealing with, they were all very compassionate and caring. She was very dehydrated and after she got IV fluids into her she was doing better. All her tests with the CT scans and blood work came back good so she was able to get the green light to get the feeding tube on Friday. For the rest of the week, between John Covel and Bryan and I, we rotated to try to give my dad a break.  On top of what is going on, I am worried about his health and well-being. All of us are pitching in to take turns spending the night, and being there during the day to let him get some rest or get things done.

The feeding tube procedure went well on Friday. John Covel and my dad went to get her Saturday and she is home now. John, Hunter and I went down on Saturday to visit and welcome her home, clean the house and make her some soup.

This week we are planning our annual Family Christmas party on Saturday. So I will be making the journey down on Friday. We are also working with Great Lakes Home and Hospice to get my dad some help and they will be calling on Monday to set things up. He finally agreed with me to get some help after a lot of arguing on my part.

Dad:’You don’t think I can take care of her?I can handle it’.  

Me:’No Dad, I know you can but you need help’

Dad: ‘No I don’t need any help. I can do it’

Me: ‘You are getting help, and you are getting it now, I don’t care if you like it or not dammit’

Stubborn Hillbilly :). However, I am just as persistent and stubborn as he is (I am a Russell and therefore it is in my DNA) and I won.

We have been blessed with many offering prayers and help from family and friends in the area. With me being an hour away, it kills me that I can’t just stop by daily to help or see if they need anything. John Covel and Bryan do this and I would love to be able to, but having others do it too just is amazing. My Dad and Phyllis are the ones that would typically do anything for you and now that’s coming back from all of you.  So for those that have helped or sent messages. Thank you from the bottom of my heart and bless you.

I saw this message by a friend a few weeks back and it hit home.  I am a Christian and firmly believe in the power of prayer and have been praying for strength during all this, but I am beginning to believe that God does think I am a Bad Ass 🙂

In closing, as we are getting ready for the holiday festivities, take a moment to appreciate your own ‘advent calendar’. Think of the simple beautiful gifts around you that you have every day. It will really help with the negatives that come around with the stress of the holidays.

-L-

This week has been one of those weeks where I want to say ‘I cannot adult no more’ and  curl up in my blankie with my favorite stuffy and watch nonstop cartoons with a big overflowing bowl of captain crunch berries.

Or

The big girl version: Curl up on my sofa in my yoga pants, grab a bottle of port wine and cheese, and binge watch 48 hours of Star Wars, Harry Potter, or James Bond (I am very much a girl nerd, no Lifetime channel for this girl)

Both versions sound wonderful. But since it’s the holidays, I try to plan every last second of our days post-Thanksgiving to January 1^st with Holiday parties visiting with friends and family, Christmas shopping, making cookies, Making eggrolls, decorating the house, Christmas events like lights, or train rides, Charity events and volunteering. It can be exhausting, but I like to plan. I geek out on figuring out how to coordinate, multi task and maximize my time so I know what’s coming. I know how to react to changes. I know how to fix any issues that come up because I planned it.

The Changes

With my deep rooted need to plan things, I also am flexible enough to understand that things don’t always go as planned. I do my best to not let it show. Oh sure I may be flipping out on in the inside but on the outside, I am trying to keep it cool.  Phyllis’s ALS diagnosis was one of moments of me trying to be cool as my dad told me. I didn’t cry, I consoled him and her. Behind the scenes, if you looked behind the curtain, like in The Wizard of Oz, someone had just pulled the rug out from under the Wizard and kicked him in the stomach.

I went into fight mode. Thinking, trying to figure something out. How do I plan around the diagnosis, how do I formulate a plan for a fix. For the first time in my life I felt that this is something I can’t fix. For a minute. Then it was calls to specialty clinics, calls to doctors, being a pain in the ass to doctors. Trying to research what can be done. Anything, something, it was a plan.  A week by week plan that I felt was crappy and one that would be poorly executed, but it was something.

ALS however, is like the 3-year-old kid that is content one moment with their favorite fruit snacks but then 30 seconds later chucks them at your head because they have decided they don’t like them anymore and will refuse to eat them and wants something else. The normal that we thought we had with the symptoms and changes we were seeing with Phyllis were changing weekly. Just when we thought, ‘We can do this, we got this’ something would change. She needed a walker, she needed to be able to communicate since she lost her voice, she couldn’t eat rice, or salad any more, then later meat. The constant change is the hardest to deal with. I roll with the punches and get up and brush myself off. It’s hard on all of us. But I know it’s hardest on my Dad and Phyllis.

Grandma and her Grandbabies: L-R Hunter, Bryan II, Bailey, and Brody

Phyllis’s status for the Week of November 28^th: This week we got a CT scan on Thursday. This will be to check things out since last week she ‘felt like she had a weight on her back right side’. This started an argument with Her and my dad.  Apparently she didn’t tell him but told me when I was there to see them. She just smiled at him sweetly and he was saying ‘It isn’t funny’. I was torn between laughing at him with her and then also getting yelled at by my dad or scolding her for not telling him. I chose to just stay quiet and smile. She is also getting the CT to get a feeding tube since she is losing too much weight. It isn’t because we aren’t feeding her. We are all driving her nuts with our constant badgering to get her to eat. It is just getting harder for her to eat. If all goes well, we will have that done next Friday. We also have been and continue to look into alternative treatment options.  We see another doctor next Wednesday and I am still looking at other treatments.

Speaking of alternative treatments.

In my need to try to fix things, I try to research things too when  something is suggested. Right now we are looking at ‘wellness clinics’ that offer supplements and alternative treatments.  That also includes things like Cannabis oils or Essential oils.  I will look into anything to see if it is legit and let Dad and Phyllis know. So I have decided to use the power of social media! If you have legitimate suggestions feel free to pass it my way.

Holiday pressures

In closing, for those that have sent their Christmas cards to Phyllis and my Dad, thank you so much! I know we put a lot on ourselves during the holidays with the need to do everything and make sure it’s perfect. But I have to remind myself constantly that I have to say no to things ( that’s hard for me 🙂 ) and that it isn’t always going to be perfect.  What’s important is who you are with and the time you have fills you with happiness. For example, this week I let Hunter decorate our Christmas tree.  It is far from the perfectly placed and evenly coordinated ornaments that I would have done. But we had fun putting it up together.

May your holiday season be filled with happiness, the misplaced ornaments, and fun memories.

Peace, Love and Blessings

-L-