Know your role

Happy Birthday Dad!


Yesterday, my dad turned 70 years old. I always wondered how crappy it would be to have your birthday so close to Christmas. So many of my friends that have December birthdays experience the ‘this is your birthday and Christmas present’. I also bet it is rare that they get a birthday present that isn’t wrapped as a Christmas present.

As I reflect back on his past birthdays, there have been some great ones and not so great. We have had the annual Christmas party on his birthday before and some years we may have been very inebriated from overindulging in such fine liquors like Aftershock. Take note, any liquor blend that has a name like Aftershock, or Fireball are just asking for pain and suffering the day after.  It is truly an “Aftershock”. My brothers, my dad, John and I have had experience with this. Trust me on this.

Another birthday year, Dad had stood up to some belligerent guys at Fenders in Milan and paid the price. He was there to have a few birthday drinks with friends and 2 guys started to harass a couple in the bar.  Short story, we have family pictures of my dad pretty beat up. He and another guy did get the 2 jerks out of the bar, but not without them getting a few hits in. Sometimes I wonder does he realize his age. This wasn’t when he was like in his 40’s. This was when he was in his 60’s! I asked him this repeatedly as I yelled at him. Hunter has some pretty interesting 1 year old Christmas pictures with grandpa and grandma.

This milestone for my dad would have been celebrated with some flair and whiskey if it was a typical year. I would have probably worked with Phyllis to set up something of a get together. There would be stories to tell and reflect on.  Similar to the stories like above. But I will just say it, ALS sucks.

Russell Family Christmas


back row: John Darrah, Me, Jamie, John Covel, Bryan, Suzie Middle: Bryan II, Phyllis holding Ms Bree, Dad Holding Penny dog and trying to contain Ms Baily and sitting is Hunter and Brody

We had the Family Christmas party Saturday and overall it was a wonderful time. We had laughs but tears too.  It is hard to not realize the undercurrent of emotion that was around us, the proverbial “elephant in the room”.  We all took extra moments with Phyllis taking pictures, emotional hugs, and tears. Everyone realized that this may be our last one. We hope and pray we get more, but we are taking what we can get and cherish it. My dad said a very nice Christmas dinner prayer. It was an emotional prayer but one that was filled with love and support surrounded by family and friends that are like family.


Terri and Don Conde with Phyllis and My Dad

The grand kids got spoiled, as they usually do. This year my nieces stole most of my attention. img_2586While I love the boys too, little Miss Bailey is a riot and Miss Bree is the sweetest thing. I mean, look at them! God blesses me with nieces and nephews because I can love them and cuddle them but then give them back. 🙂 I have said a few times in the past, I am not a multi child mother. And to those parents out there with more than one, god bless ya cause some days I can’t handle the one I have. As I review the pictures that come up in my time-hop app from Christmases past, it is funny to see them grow up and then new grand kids are added.  It is bittersweet to see how happy we all are from those past years and while not perfect all the time, there is love in our crazy mixed up family that can be seen every year.

Update on Phyllis for the week of December 12th : We had the appointment with the holistic doctor and they have started the supplements they have prescribed.  It was funny talking to dad about the visit as he said “they were a little weird”. Having Phyllis raise her arm and then based off of observations, they suggested supplements. But I feel that we are at a point of trying anything. Phyllis is adapting to the feeding tube and we are getting on her to keep eating at a regular schedule. Our constant nagging is probably driving her nuts. But when I was there on Friday, she seemed to have more energy and was able to nag my dad on things, which produces a smile or laugh from her. So it seems hopeful that the ability to get her nourishment and supplements are helping. Everyone pitched in on Saturday for dinner and set up. We had for the most part our typical Christmas. I am still worried about my dad and his health but I think that’s just going to become a constant as time goes on.  This upcoming week I am looking into light therapy and we have home care coming in and helping out. It will be a change for both Phyllis and my Dad, but all us kids are hoping for the best and that they are more help that a ‘pain in the ass’ ( as my dad states).

Changing roles

I talked to John today about how my dad was 70 now. It got me thinking about how the roles of parent and child are changing. I am not happy about it, as all my parents are an integral part of my foundation of life. Each one of them, my dad, my mom, and Phyllis are my support system in their own way. I don’t know about others, but I have always thought of my parents as invincible, a force to be reckoned with. Especially my dad, he has always been in my corner and we have had some tough times. Even being 44 years old, I still have to check in with or text or call them when I travel :D. “I am here, I have landed, I am home” as they are always worrying about my safety. But now with the uncertainty of what the future holds, I see myself starting to worry, about their health and their safety. I have those moments when the phone rings and I think whats wrong or I have to call daily to check in on them. The roles are changing and we will all have to adapt to that change. It is just here sooner than I expected.

I hope that during the holidays you think about those that have past and remember them fondly, while enjoying those that are still here no matter how irritating that one person in your family is. Also, if you are traveling during this time, I hope you arrive safely and remember to check in to just say ““I am here, I have landed, and I am home”. I am sure your loved ones will appreciate it.


Every day is a gift.

img_2514In 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. img_2468I 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 🙂0f83585b34b46aecddeacd4d9ba99124

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.


Holiday Chaos

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


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 1st 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 28th: 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