It has been a long time since I updated this. My lack of updates was due to many things, like being busy with the families and trying to help my dad out. But the main reason was there wasn’t anything to update to the family about Phyllis. No, I didn’t forget her, but there are some things that need to be taken care of in private and honestly, there was a bitterness about the happy moments, ‘the firsts’.

The First Anniversary

I have this ability to remember everything.  Especially when there is emotion attached.  But it is a blessing for some things and others I wish I could forget.

Last Tuesday was the first anniversary of Phyllis’s passing. I remember everything about the day. It started off as a normal day with dropping Hunter off. Well, as normal as it could be since I was getting daily calls from my dad telling me that Hospice was saying she didn’t have much longer, that she was struggling to breathe, or that we had to up her morphine dose. So yes, it was normal in the sense that I was keeping myself busy with the routine of school and work but the sadness was there weighing on my shoulders knowing what was imminent. At about 10:30 AM, my dad called me at work. The raw emotion in his voice came through the phone that was sobering and bought tears to my eyes.

“The nurse said she won’t make it much longer”

How much time?

“A few hours at best”

Do you want me to leave work?

“There isn’t much you can do if you come here, just finish out work I don’t want you to get in trouble”

I won’t get in trouble at work, but I know he just wanted to let me know, hear I loved him and that it was OK. You should understand that at this point, we knew what was coming and it was going to be soon.  In 2 hours or 72, time was running out. I went on my day the best I could. I went out to lunch with co-workers and kept up my image of everything being OK. When we left the office, one of my co-workers and good friend asked how was Phyllis. I was OK when I didn’t talk or think about it. I looked at him and did my best to hold it together but I was at my breaking point and knew if I said something, I would break. I grabbed his hand and squeezed it and he just knew. ‘It will be ok’ he said and then changed the conversation to something light hearted. At lunch, with 3 of my co-workers who I consider close friends all knew. They did their best to keep the conversation light and funny. They know how to make me laugh.

During tough times, those are the points in our lives where we see who truly cares, who helps, and sometimes holds you up when you are breaking apart. I wrote about it in one of my earlier posts what happened after I left work that day. Phyllis ended up passing that night.

The First Holidays

It doesn’t matter what time of year a loved one passes.  I have heard people say ‘oh at least you got Christmas, or you got <insert some holiday>” and I know they don’t know what to say to help. But I can say if you want to help, talk about what the person loved on that holiday. Remember them, joke about the things they used to do. For the first Easter we had an Easter egg hunt at the house.  It would have been something Phyllis would have loved.  All the holidays we celebrated together always made her happy.  All she ever wanted was all us kids together, sharing laughter and having time as a family.  Each holiday came and went with the bitter emptiness that was obvious no matter how hard you tried to keep the day joyful.

• Mother’s Day
• Thanksgiving
• Christmas
• New Years
• Her Birthday

The First Moments

In each happy event there was always this void.  An emptiness that something isn’t just right but there isn’t anything that can be done to fix it. We do our best to be present in the moment and celebrate with family and friends. I sometimes wondered if they were thinking about Phyllis too. Sometimes it was apparent, other times it was a subtle glance or seeing tears well up in someone’s eyes for a brief instant and then they would move past the moment to be strong, to not bring the mood of the celebration down.

• Bree’s First Birthday
• Bryan’s Baseball games
• Hunter singing at her first event
• Hunter’s Honors Night,
• Birthday Shopping, the list goes on

These were all events that Phyllis cherished. She went to Hunter’s last grandparent concert when she was diagnosed. She was going to Bryan’s games till she couldn’t walk anymore. She wouldn’t miss those for the world unless she was physically unable to.

The First Year

I would like to say we made it. In reality we survived it. I still worry about my dad and call him almost every day. He is getting better but he still has his days. I know we all do but it’s always harder for those that were affected the most. The survivors. There are things I can’t bring myself to do. I still have her number stored in my phone. I tried to rename it to just ‘Dad’ but couldn’t. it makes me tear up to try to do it so I just stop. Maybe I will in the future or maybe it will be like that forever. I see it with Hunter and the random outbursts that ends with ‘I miss Grandma’. It catches me off guard and breaks my resolve to be strong and in control. But I take that moment to miss her too and tear up. I just told a friend that I am trying to learn that being vulnerable isn’t weak. It is being human.  We all have our vulnerabilities and if we didn’t we couldn’t grow, be kind, or understand that sometimes our vulnerabilities open us up to our strengths.

We had her memorial down in Florida around her birthday and I know she was smiling down on is.  John Covel, Bryan and I all together. All spending time with dad. It was something that just us kids haven’t done in over 20 + years. Before the families and responsibilities of life. Before when it was just us kids just learning how our blended family works. Before the sickness and sadness. For a few days it was just the 3 of us.  Two brothers and one sister laughing, crying, and just being ourselves with our dad but this time instead of Phyllis being there physically, she was there in spirit loving every moment. 

We all said we need to do this every year and agreed to try to do it. For us, it will be a New First.

Peace, Love and happiness from our family to yours,

-L

Social media is a great way to keep in touch with friends and family but some of them have a service that will give you a memory or remind you of what you did ‘On this Day’ last year, 2 years, 5 years ago and so on.  I have one called time hop and I like it as it lets me see also things I put as a status on Facebook.  Some make me laugh at the silly things posted or fun times had. Others make me tear up from happy events or sad ones.  One of my good friends Tracie sent me one this weekend of me finding out she was pregnant with twins, and thankfully the video didn’t show the all-out ugly cry I had but you could hear it. This was because Tracie was having a real hard time getting pregnant so this was just pure unfiltered joy. Until recently, I never thought that these flashbacks would remind me of what I have lost. Mainly because my posts and pictures are of happy times, funny things or events. The problem I have had with the flashbacks lately is that it is a constant battle of what I want to be reminded of since some of the reminders are of Phyllis. First, I don’t want to forget her and won’t forget her but it takes a toll on a person who has had to lose someone close and when you feel like you are doing fine, a walk down memory lane that just happened a year ago just rips open that pain and reminds you all over again of what you have lost and how quickly it happened.

Hunter’s School Spring Concert: Last Year May 12, 2016

These are some of the things running through my mind when I see these flashbacks:

‘We didn’t know she had ALS at that time’                                                  ‘She had a good life’

‘We had so much fun’

‘I miss her terribly’                                                               ‘What If I knew earlier she had ALS’

I jump off the downward slope of depression and sadness that anyone can quickly fall into.  But let’s face it, I don’t have time for that and Phyllis would be pissed if I allowed it 🙂

May 12^th 2017 – Some news on Phyllis

Some of you did not know this, but Phyllis donated her brain and spinal cord to the U of M Brain bank. They were extremely happy and appreciated the donation because very rarely do they get the chance to get both the Brain and Spinal cord. Today I found out what they are doing and it is quite interesting.  I will keep the medical speak to a minimum but I was also able to find some articles if you are interested in reading further.  It is ALS Awareness month so take some time to check it out.

When Phyllis’s donation was given to the U of M, the first thing that happens is that it is de-identified.  Meaning it is assigned a number and the general patient information that has been gathered during her time at the ALS Clinic are captured like age, health history, local, ect. But her actual name and personal identification are removed. This is done for patient privacy.  What it means is that we can’t follow what the results are unless we are in the medical profession doing the research. It may be frustrating, but then I think, would they want someone who is a pain in the ass like me calling them every month to ask how things are going, what happened, what are the results? Cause I would. Like seriously I would. 🙂

Here are the research trials her donation has been targeted for:

Understanding the changes in your immune system with ALS.

This is one is discussed here and the U of M Clinc is part of the collaborators:

In collaboration with Stephen Goutman, M.D. (U-M Department of Neurology) and the Michigan Institute for Clinical & Health Research, we are identifying upregulated pro-inflammatory immune cell populations that correlate with ALS disease progression. The goal is to ultimately identify potential biomarkers or therapeutic targets of disease.

People speak: They are looking at how the immune system of an ALS patient actually attacks the ALS protein in the early stages basically stalling or delaying the symptoms. But eventually the immune system starts to lose its battle and then the ALS protein wins. Dr Goutman was Phyllis’s Dr and when I spoke to him today he said their goal is to not only target this therapy for the immune system, but by doing it at an earlier stage in the disease, it will help prolong life and slow the progression using the patient’s own immune system with a little help.

The TDP-43 protein is a celebrity.

So this Protein has gotten some press lately,  If you read this news article, they have released a new treatment for patients.  This is the first since 1995. While Phyllis’s donation didn’t go to this specifically, what hers is going towards is the continuation of the research around this little protein. Dr. Sami Barmada is heading up the research that will continue efforts around determining the antibodies or ‘roadmap’ of the protein so that they can track and monitor the antibodies as they are being testing with new treatments or drugs.  What does this mean? The better you can track something, the quicker they can find treatments or even a cure.

Mothers day..

First, to all the moms out there, Happy Mother’s day.  Give big hugs to those that are here and call the ones that are far.  Plant a plant, light a candle, or say a prayer to the ones that are no longer here. I hope it is a good one for everyone.

The firsts are always the hardest.  But I will be spending time with John’s mom and My mom and enjoying that time together. But on that day with this being the first Mother’s day without Phyllis, and with me getting the flashbacks of us last year, I will remember that we have those memories and that we can always smile.

Peace, Love, and Happy Mothers Day

Have you ever heard of the alcohol Aftershock? It is described on Amazon as:

Aftershock hot and cool cinnamon liqueur is the ultimate Aftershock taste. It is unique with its cinnamon flavour and thick syrupy consistency. It can be enjoyed at parties as a shooter or mixed with other drinks for a unique cocktail.

As a Public Service Announcement, I mentioned this in an earlier post but I would like to state to all those that have never tried this spicy poisonous death of a liquor, DO NOT DRINK THIS. Oh sure, it goes down as any spicy sweet cinnamon alcohol would.  The cool crystals that form on the bottom are an added mystery while you are shooting it. But true to its name, you will have an “Aftershock” after drinking this.

Russell Covel Christmas 95ish

Someone, I think my John and I, thought it would be a great idea to bring Aftershock to the annual Christmas party.  This was before kids, dogs, or spouses. After a night of eating way too much food and opening gifts we started with a few shots. Everyone thought how good it tasted. Then we continued, and shot after shot, we almost finished the bottle among the 5 of us. As I noted in the PSA above, this was a bad idea especially after all that food. As the night passed by, everyone either passed out or went to bed. At the St Louis st house, Phyllis’s garage was a 2^nd bedroom AKA Bryan and John’s man\ party cave.  My John and I slept in there and we woke up the next day feeling horrible. As I walked into the house , I noticed the carpet and it looked like a bad scene from a horror movie. There were bright shocking pink stains that looked like blood splatters on the carpet. Bryan or John (I can’t remember) was passed out on the couch with a trash can next to him. The “Aftershock” of that drink was the ass kicking it gave to everyone and apparently someone puked on the carpet, a lot. I forgot to note that Phyllis just got new carpet installed a few months prior, a pretty coffee cream carpet. So as you can imagine, she was not happy with that. She was the only smart one who did not have any of the poisonous death and was fine. She shook her head at all of us, but proceeded to make us coffee and breakfast. After that year, we all agreed to never allow that alcohol into the Christmas party again.

April 21^st 2017, the Aftershock of Phyllis

After the chaos of getting everything ready for funerals, luncheons, and arrangements a new eerie calm happens.  The actual planning and activities for the funeral and luncheons was pretty set thanks to Phyllis.  She did most of it before she passed. So there wasn’t much to do but go through with her plan and for the most part it went off well.  But unless you have had someone close to you pass, you don’t realize how painful the calm is after things go back to ‘normal’. I use normal in quotes because it isn’t normal but it is life. You wake up, you do things, you go to sleep.  There are not things to keep your mind busy like immediately after the funeral. Visiting family have went home and back to their lives and there are other tasks that keep reminding you of your loss. The phone calls to insurance, credit card companies, utilities, ect and having to repeatedly say “My wife/mom passed and I need to..”  Most everyone tells you of their condolences, you thank them and then move onto business. This past week I took time off and helped my dad with this as he hates talking to people on the phone and as he said “ you do it so much you are good at it”, so I did a lot of it on speaker so he could ‘approve’ my discussing things with them.  After almost 2 days of this, we got about 95% of things taken care of. The other reminder is the material things. While a person may be gone, everything they owned is there, reminding you of things and memories.  It seems silly to think that the little things like a toothbrush, a hairbrush or clothes can trigger this but as I was packing Phyllis’s swimsuit cover-up, I remembered all the times she took Hunter swimming.   The remaining medical supplies we are donating to ALS and Phyllis’s clothes I did get to packing were donated to Grace Centers of Hope in Pontiac, which is a shelter for men, women and children. I know that would make Phyllis happy to know they are being put to good use.  I made sure my dad was ready for me to start packing and asking him if he was sure and even though he said he was, I could see it was bothering him so I made him leave and go to Terri and Don’s when I was doing it. I kept a few things of hers and moved things around in their closet so it wouldn’t look so empty. But the act of doing this was just a reminder of what we have lost. The house was so quiet as I was packing up things owned by a lady so full of life. The missing was strong.

For those that are reading this, feel free to check in on him and tell him his worrying daughter told him so. He’s not on Facebook but he has his cell phone and does text. He will yell at me for worrying and I will just tell him to deal with it.

All of us kids are still checking in on him daily and his friends are helping to keep him busy. I know the evenings and mornings are quiet and those times are the hardest for him. I see it when I am there and I hear it when I call. For the most part he is doing ok but he is going to have his moments, as it is expected in the calm and quiet of the aftershock.

Peace love and blessings

-L-

I have been thinking of starting a blog for friends and family.  This would also include family that I haven’t seen or met ( I will get to that in a moment). But I am someone who loves to communicate. It is a form of therapy for me and who doesn’t need a little therapy now and then.

As I said, this is also for family I haven’t met.  How is that possible? Well I have to back up about 27 years for that.

Time for a flashback. 

My dad and Phyllis started dating in 1990. As time went on, I met her 2 sons, John and Brian. We were adult kids for the most part (as much as 18 -20 year old kids can be adults) and didn’t have any negative feelings about our new blended family. I wanted my dad happy after the reeling loss of my brother, Jeff, in ’87 and Phyllis made him happy.

Now what I didn’t know was that Phyllis comes from a huge family. If I recall, there are 9 of them ( I am sure when someone from the Hosler side reads this they will correct me if I erroneously forgot a sibling, please feel free too). As I started to visit my dad and Phyllis in Milan and stay there while I was going to college at EMU, I started to meet them. Everywhere. I laugh at this still because Phyllis and I would go to Kroger, or to the Legion, or ANYWHERE in Milan, I would meet an aunt, a niece, a nephew, an uncle, or a cousin. I firmly believed and still do that the majority of Milan’s population is related to Phyllis somehow or someway.

Overtime, I too fell in love with this beautiful, funny, kind and generous woman and was proud to be introduced as her daughter and proud to introduce her as my mom. My life was full. I had my Korean mom and my American mom.  How blessed can a girl be with 2 moms that love her unconditionally.

June 1st, 2016 – Phyllis’s ALS Diagnosis

I will just say, that is the worst day of 2016. I posted about in on Facebook here. I waited a few months to come out in the open about it. But it still cuts me to the core.

Today

Now with that brief flashback, I want to help the extended families with updates. Again, this is my form of therapy so I hope it provides you updates on what is going on.

Status on Phyllis’s ALS: On November 9th, she had her appointment with the ALS team at U of M. This team is awesome and they review her case, her current status, and the progression of the disease. Unfortunately, we did not get the news we were hoping for. The said her form of ALS is Bulbar ALS. In short, it is the most aggressive form and we were given a timeline of 3 months.

We have went from 2-5 years to 3 months.

I try to not think about it too much. I keep my mind busy with the typical working mother and wife responsibilities. Work, School work for my 11 year daughter, Hunter and Granddaughter, and Groceries, Christmas shopping, cards, ect. You get the point. As long as I don’t have time to think about whats coming, I can focus on today and the present. I focus on making the time we have left and how I can, with the help from my brothers, make it special and full of love, laughter and smiles.

The past few days we have spent the time with family over the Thanksgiving break. Coming from extended families, I spent the actual Thanksgiving day with my mom and then this year, I went to Dad and Phyllis’s to spend the holiday with them too.

We had all of us there. The 5 big kids: John and I, Brian and Suzie, and John Covel, and the 5 grand-kids. There was a few times where we had her laughing so hard and it is good to see her laugh and smile. The funniest part was when John Covel bought an air horn for Phyllis. The commentary around getting my dad off his ass with an air horn was pretty comical. He won’t need his hearing aids for that!

On Tuesday last week, they delivered Phyllis’s hospital bed. A sobering moment that forced me to think of what’s to come. After the bed was delivered, I asked my dad if he had sheets for the bed. He said ‘no, but they will make due’. I decided that I was going to go and buy her a new bedroom outfit.  If this was going to be her new bedroom, why not make it pretty. A long time ago, when she and my dad were dating, I moved back in with my dad to go to college. I was the typical poor college student. She and I went and bought a whole new bedroom outfit for my room at the Sand Lake cottage. Matching bedspread set, wallpaper, decorative pillows, no expense was spared to make my new room ‘Home’. I never forgot that and felt it was the least I could do. Hunter picked out the set.  Lets just say it may be more appropriate for an 11 year old girl, but Grandma Phyllis loved it.  Dad told me that she cried when she saw it.

Phyllis is doing her best, but she is declining.  Many of you that haven’t seen her in a few months would be surprised. But she still has a smile for us when we see her.

In closing, I will try to post an update weekly.  My entries may also be about random life stuff too, but I figured this was the best way to keep everyone up to date.

I have one last request. Yesterday, I saw her get a Christmas card with a lovely note from my cousin Penny in California. She loved it. If you are family, friend or newly acquainted friend can you take a moment to send her a Christmas card this year? Their address is:

Butch and Phyllis Russell

13885 Murray Dr.
Milan, MI 48160

All the best to everyone who reads this. I know many have struggles going on that we may not see or hear about. We are stronger with family and friends and be kind to one another.

-L-