The First to Remember

IMG_6905It 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.  IMG_6906.JPG

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,


On this day

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 12th 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 2nd 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 21st 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


Take a walk with me..

It is interesting how people react to death. Some handle it with the peace and grace of a butterfly. Others handle it like they are walking through a war zone with the pain and anger etched in their minds and emotions. We are all different and so accordingly, we will handle it differently. I have friends and family that have been blessed enough to not have any loss in their immediate family and it always amazes me how they have lived unscathed by the shock of loss whether sudden or they knew it was coming. Myself, I had to deal with the loss of my 19-year-old brother suddenly in a car accident when I was 15. As a young girl losing her only brother, it was a shock to my world.  I handled it like I described, walking through a war zone. The pain and devastation to my family was visible then and my world was unrecognizable as it was before his death. Life never was the same for us and as I have heard many times from the loss of a child, my parents’ marriage couldn’t handle it.  They divorced about 2 years later. That experience, however, made me who I am today. I learned quickly that survivors have to wake up the next day. Time goes on even if you don’t want it to. You have to find a new normal. We have 2 choices. Find the strength to move on or lose yourself in the depression. I chose to find the strength and felt I had to be strong for both my parents while they figured out their own path. In many ways, I found strength in controlling what I could since the world around me was out of control. If I could find something I could do, no matter how small, and own it and take care of it, I did. Today, some may say I am a control freak 🙂 , but it is how I find my strength. Finding the things I can control when the world around me is out of control.

Many have heard by now that Phyllis passed this last Monday April 3rd. This time while the shock is still there, I found peace and strenght knowing the following:

I could say goodbye and I love you.

While the last time I said it, it was on the phone because I couldn’t make it down to their home till later in the evening, she gave my dad her ‘thumbs up’ and I knew she heard me. I missed her by 2 minutes. I pulled into the drive at my dad’s house and he walked out and said she just passed. This wounded me to the core for about 10 minutes. The shock of being 2 minutes late. But during my drive down, my dad kept calling and asking “how far out are you?” about every 15 minutes. The last time when I got to the exit to their home which was about 5 minutes away, he called again and I said ‘ I will be there in a few minutes’. Phyllis was holding on and the nurses couldn’t understand why she was holing on so long. But someone had said to me ‘maybe she was holding on till she knew you would be there for your dad’ and that made sense to me because, true to Phyllis, even in the end, she was making sure he would have me there to help him though this.

The suffering was gone

During the whole diagnosis and even before, I watched this vibrant, strong, and sociable woman fade quickly. For those of you that knew Phyllis, she loved to talk to people. Having her lose her voice was such a blow. Having her lose her freedom and ability to take care of everyone and everything was an additional blow. Then at the end, watching her struggle to just take a breath and watching her in constant pain, I wanted the suffering gone for her. I knew it was selfish to have her here because we needed her. I didn’t want her to suffer anymore and she was suffering horribly.

Today, we start to find that new normal. One day at a time, I will worry about my dad and my brothers. I know it takes time to heal. I know everyone is hurting. I also know from experience, that after time, we heal. We never forget, but the pain of the loss fades. Oh, it crops up when you least expect it and it is there again just when you think you have it under control, but your heart is never the same.

I called my mom this weekend to let her know I loved her. That she is an awesome ‘Harmony’ (Korean for grandma) and that I am so blessed that she has her health and that I can still talk to her. I am lucky to have 2 moms. Mine and Phyllis, my bonus mom.

The overwhelming support we have received from the family, friends and the community are a true sign of how special of a lady she was. I have said it numerous times, but I will say it again. I cannot thank everyone enough.

I have said before that I have a strong faith in the lord. I know others may or may not believe, but I do and I believe that he has given me the strength to get through this and be there for the family. I also believe that while he heard our prayers to help heal Phyllis, I know he doesn’t always answer our prayers in the way we want. He did heal her by ending her suffering. My belief is that she is in Heaven, free of pain, walking with our dogs that have passed, and talking to my brother Jeff telling him all the stories she was a part of in the last 25 years my dad and her were together and laughing. I see her smiling and laughing and that is where I find my strength during this time.


Rest in peace Phyllis, love you.




Don’t Stop Believing..

I am a child of the 80’s. I mentioned Prince in an earlier post and Journey was another key part of my life as a teen. Songs are emotional for me as they bring back strong memories of times past.  They are like an audio memory clip of emotions. From fun times listening to Beastie Boys in my Best friend Kim’s Escort to heartbreak and young love for Journey’s Faithfully. It is so strong that if I close my eyes, I can see times where I was when songs were played. It is the reason why my love for almost all music is so deep.

This post is a hard one for me. Just a little over 2 weeks ago we were at Phyllis’s 70th birthday. Today she is struggling and suffering. My dad asked me to make sure that we play 2 songs for her at her service, Jamie Johnson’s Lead Me Home and Bette Midler’s The Rose. For those that know me, I have a strong dislike for country music. It makes me sad. I listen to music to make me happy and dance. Most country music makes me want to drink whiskey, maybe that’s why my dad likes it so much. So, having that song as a memory for Phyllis will be difficult. As for the Rose, this was the song her and my dad had played at their wedding by your’s truly. I played piano while someone sang the song.  I cannot sing. My daughter tells me that daily as I embarrass her on the way into school in front of the girls we carpool with. But the Rose will always have a bittersweet memory with it.

With everything that is happening, I believe in my faith. I believe that whatever happens, he will give me the strength to get through what comes our way. He hasn’t let me down in the past so I am trusting him now.

Update on Phyllis for April 3rd.

She has declined rapidly since her birthday. She can no longer process her food/formula and she has started to take Morphine. She is struggling to breathe and as of today we are told she doesn’t have much time left. I ask all of you to keep my dad in your prayers. Also, my brothers, John and Bryan, and our families. While I have hope that somehow she would pull through this, I also have peace in knowing that if she doesn’t, she won’t struggle and suffer anymore.

I struggle being an hour away. I will be at their home tonight just be there for my dad. The hardest part for me is not being able to do anything.


I want to give a huge thank you to everyone who sent flowers, cards, well wishes. She was showered in love and support. She had smiles around that night.

Peace, love and blessings

Missing.. Spring.. If found please call 1-IHAVEHADIT


Well, it is March. Apparently Mother Nature thought ‘Michigan hasn’t really had a winter. Here, have a few more weeks of teens and twenties.’ Just enough after a week of the 60’s to get everyone sick because we felt good outside without 5 layers and now we are boycotting the cold. People are outside with no coats because they have put away their winter coats and gloves gleefully hoping to never see them till next fall. They REFUSE to get them back out and would rather freeze.  To my West coast friends and friends down south, this is why you will see us ‘snow birds’ without coats when it is in the 50’s. It is a heat wave when you are 20-30 degrees warmer then where you live. To my friends on the East coast, here’s a warm mug a cocoa spiked with Rumchata or some spirit because apparently, you did something to Mother Nature to piss her off. My condolences.

Update on Phyllis for March 16th.

She has had to start taking higher doses of her Gabapentin. The nurses have said that if she reaches 12 a day then we must switch to Morphine. Unfortunately, she is maxing out her doses some days. But she goes others only taking a few. We are still trying to hold out on the Morphine but it is a balance of managing the pain. She has been having pain in her shoulders and knees and the massages she gets weekly have helped with that as well. She has also started to eat less. She can not handle the full container of formula and only can do half of it since she said “it feels like it is coming up my throat”. We stopped down last weekend for a short visit and she was in good spirits. Phyllis will be turning 70 on Monday! So please give her a shout out on facebook or messenger and say Happy Birthday.

Speaking of missing…

For the most part, dealing with the changes with ALS, I do my best to look past what is truly happening and be in the moment. Helping out with Dad and Phyllis and stopping in to make them smile, get a “thumbs up” from Phyllis and have her write me something random like “ Your Dad can’t find …., can you go look in …” and I make her laugh by saying “he was looking with Man-Eyes, It is not a condiment!”.  I try to keep things as “Normal” as they can be given the situation. But I have moments where I slip into “Missing”. I recently heard this term from the mother I spoke of that recently lost her 14-year-old son.  She is doing the best she can be dealing with her “changes” but she commented on the “Missing”.  Missing a smile, missing goofy moments. The Missing of events, characteristics, or personalities. That describes the moments when I say I slip into “Missing”. Pardon the f-bomb but ALS fucking sucks. I can describe it elaborately with emotion and anger but that pretty much describes it. I am sure all the things I miss, Phyllis misses too. But the horrible thing is that my friend misses her son who is gone and physically not here. Whereas I miss the things that are gone but Phyllis is physically here. I thought about this the other day and remembered when I lost my brother Jeff, if I had a chance to talk to him, what would I say? What would be my last conversation with him? I “missed” out on that chance and decided I am not going to miss out on it now.

What I miss..

Phyllis, I miss your voice. I could and would call you up at any given moment to just talk about my problems, the goofy stuff Hunter was doing, things John did to make me mad :). You would tell me advice, laugh and then tell me the latest trouble my dad got into. I know you love us. I know you are thankful for us. I know you would tell us if you could.

I miss your happiness. You would walk into a room and people would see the smile on your face, the friendliness in your voice and sparkle in your eyes.  I always think of yellow when I see you, even now, because you still brighten a room with your smile and make anyone feel comfortable. I know you are uncomfortable. I know you are being strong for us. I know you don’t want us to be sad but to be happy.

I miss you being grandma. You love being grandma. You would be the first one at a gathering to find something to entertain all the kids. Painting rocks, looking for pinecones, going for walks. Now I am blessed that Hunter has other Grandmas, but you took on the role with a mission and Hunter loves you dearly.

I miss your independence. Ok I know this one sounds selfish and it kind of is.  But I could call and have called at 9pm on a Wednesday night and say “Hunter is sick and I have a meeting I cannot get out of at work”. You wouldn’t let me finish and just say, “What time do you want me to be up there” and when I got home my house was clean, my laundry done, and Hunter thoroughly spoiled while being sick. You were a lady that would take care of business when it needed to be taken care of and then go 200% past that.

So as I said, I am not going to miss out on the opportunity to tell you as I know you will read this. You are my bonus mom. You have treated me like a daughter and I will forever be grateful for that. You have been there for me through the great times and the sad times. You are loved by many and I will keep our memories with me forever.

Happy Birthday to my Bonus mom, Phyllis

Love Lisa, John, and Hunter

Let’s go Crazy

It has been a while since I posted and it is mainly because of the chaos around Cheer leading schedules, family commitments, work and trying to do it all. I end up prioritizing things on my list and well the blog update kept falling down the list.

f6bc7136a366fcb17c5a90382404920eIf you are not a Prince fan, we can no longer be friends.  Just kidding, kinda.  I don’t watch the Grammy’s mainly because I rarely watch TV.  But I did see the highlights and watched the highlights from the Prince tributes. Prince was my childhood crush.  I had this poster and many others on my bedroom wall. As you can imagine my dad was thrilled. I can remember him saying “He’s a fruitcake’. But I grew up and have fond memories of all his songs being a part of my teen years and early adult years.  The proof is in my yearbooks where every one of them my BFF and I would write the ending lyrics to Let’s Pretend We’re Married:

Whatever you heard about me is true
I change the rules and do what I want to do
I’m in love with God, he’s the only way
‘Cause you and I know we gotta die someday
If you think I’m crazy, you’re probably right
But I’m gonna have fun every motherfuckin’ night
If you like to fight, you’re a double-drag fool
I’m goin’ to another life, how ’bout you?

As I look back at what I was listening to when I was 12 (almost Hunter’s age) was not the best thing for me to be listening to.  I did and my love for him never faded. I was able to go see him in concert with my sister in law, Helen, and that is one memory I cherish now that he is gone.

‘Cause you and I know we gotta die someday

The past few weeks I have been having reminders to not take things for granted.  Phyllis is a reminder daily when I don’t want to work out or that I am so tired and I think that she would love to be physical and active so I suck it up and just do it. I also had my cousin, Rhonda, come home for a visit because a relative is close to the end of her life and it reminded me that we have to keep in touch with those that are far away because time is short and I missed her so much. Spending time with someone that you were close to and haven’t seen in forever is food for a weary and tired mind and heart. Also seeing how Phyllis reacted to her Florida friends coming for a surprise visit is priceless. Finally, I was reminded again, that the time is precious and can be cut short with the passing of a young boy, Nicholas, who was Savannah’s brother, Hunter’s former classmate.

If you think I’m crazy, you’re probably right

I know there are times where life is just a big whirlwind. Waking up, doing breakfasts, making lunches, going to work, dropping kids off at school, leaving work to pick up kids from practice, coming home to do dinner and homework and by the time you get a free moment, it’s time to get ready for bed. Sound Familiar? But I have been trying really hard to take some of the moments between those events, like in the truck, or during dinner, to just enjoy the little things.  I think all of you have seen or heard the story about the teacher and ‘The Jar of life’  so I took that lesson and decided to make it part of my New Year’s resolution. Since the beginning of the new year, I made a resolution, I know we all do it, but so far I have been working really hard to keep this one and I have been successful.  Now I know, we are only 2 months into the new year so let’s see how long I can keep it up.:) Here it is:

  • Shut down from work at 5pm. So I won’t lie here. I will reply to an email IF it is something I can reply to in a short time. Also, if there is something I had to get out that day that cannot wait till the next morning I will do it, but so far nothing has been that important that it couldn’t wait.
  • Weekly walks with my mom. With all the issues we have had going on with Phyllis and my dad, it has made me appreciate my mom’s health and her time left with us.  My mom is a healthy, kind, feisty and an opinionated little Korean woman. She isn’t going anywhere any time soon if she has her way. She has no problem telling me what she thinks and I appreciate that (most of the time!). But I recognized that I am lucky to have her and Phyllis, as my bonus mom. I need to make the most of our time and the walks help just de-stress and catch up.
  • Dinners with Hunter. I have made it a mission to make sure Hunter knows some basic life skills. One is cooking.  The bonus to this is she makes some pretty darn good dinners and lets be honest, the second is I don’t have to cook dinner. She helps me plan the weekly meals and its good to have her input so she is happy to make it and eat it too. Shameless plug here, Hello Fresh has made this super easy for an 11 year old to cook dinners. It’s $40 per meal but for the 3 of us, I split it in half. So for $20 for a home cooked meal I don’t have to cook? Sold.
  • Zero out my email inbox every week. This may sound crazy. On an average I get between 100- 200 emails from work daily, and that’s a light day. I spent 3 weeks over Christmas break getting it to zero. From 3500 emails to zero. But it helps me focus on what’s important and gives me time to do the items above.
  • Date night. At least once every 3 months, I am planning on a date night with my John. With all the craziness of all things school, work, and life, that night out is like a breath of fresh air. I know you are thinking, once every 3 months?? It’s a start cause we never plan it before so I am making it a plan now.

So yes, I know I may be crazy, but I am making the most of those ‘little’ moments and trying to make some time ‘ for a few beers with a friend’

Update on Phyllis for February 19th

Well since it has been a month that I updated you, I will give you the high level details of where we are at today. Phyllis has been successfully set up with hospice.  They are coming weekly.  We have nurses, someone to help with the baths, Phyllis gets a massage and we have a social worker. It did get a little crazy during the transition because at one point in time it looked like a medical supply warehouse in the living room of their house, but we got it all sorted out and organized.  She has had to increase her does of Gabapentin, which is the nerve medication that calms her tremors down. This means she is sleeping more and it makes her groggy. The nurses have warned us that if this dosage starts to get to high or it isn’t controlling the pain, then we have to start her on morphine.  We are trying to do the best we can to not get to the point of using the morphine this quickly because at that time, she will start to sleep a lot more.

This week we surprised her,as I said earlier, with friends from Florida. Julie and Jenna made the journey to Michigan from Florida and thankfully had some sun and warm weather, at least for us in Michigan, follow them. Phyllis was so happy she cried. We have been having a good week this week and for that, I am thankful. It is day by day and if we can have the good days outnumber the bad days in a week, then it is a good week.

I will do my best to try to update the blog weekly again.  I know I have been remiss and some have wondered about her health. As always, feel free to send her pictures, messages on her phone or on Facebook as she appreciates it and loves to hear from you.

Peace, Love and Purple blessings


Blood doesn’t matter

If you are a child of divorced parents, you may have had the experience of having to accept a new step parent into your world. It is either one of the easiest things to do or one of the hardest. I was older when my parents were divorced so I didn’t have this fantasy that my parents would get back together. I moved on from that thought and have never looked back. It wasn’t meant to be for them and I accepted that when I was 16. Add new siblings to the picture and you really don’t know what you will get.

When my dad told me that he was going to marry Phyllis, he asked if I was ok with it. I replied with a yes, and never thought a negative thing about a new step mom. I mean, most of you know Phyllis, and there isn’t really anything negative about her. She was kind, a ray of sunshine, and was crazy enough to love my crazy, stubborn, father. I still think to this day that I lucked out on the step mom category because it is a gamble, and if your parent is in love with them, you are going to have to deal with this new part of your family and the mixed family. This goes for John and Bryan too. I love them like my brothers and I am sure I can irritate them like a sister because I have my moments where I can be a pain in the ass. However, in all fairness, there are times where they drive me nuts too.

Ever since my only brother passed when I was 15, it was hard for me to think that I would have that connection with another person, that sibling connection. But as time went on, not only did I get two step brothers, I also got a brother in law when I got married. It is the closest thing I have to siblings by marriage. I also have cousins that I am very close to as well. While the blood relationship to them isn’t there, the bond, the feelings and family relationship is. I worry about them all, I yell at them when I think they are being stupid, or cry with them when we have the good and bad times.

A mother’s concern, blood or not

familyThis past week when I posted the blog, I was pretty down. In all the chaos of feelings, everyday life and work, you get tired of it all. But I wrote about it, got it off my chest and moved on. As I said, in my very first post, this is my therapy. The thing that made me get angry and laugh at the same time this week was when I got a call from my dad.

“Phyllis says you need to get some therapy to help you with your stress”

First, after I get over my shock, I let my dad know that I am good. I have many avenues to talk about my feelings and I do. Second, I was mad because she was worrying about my well-being.  I went to message her right after I hung up with dad.


After that exchange, I was telling my John what happened, and I started to laugh. Here is a woman who is battling a horrible disease. Has every reason to take the selfish, self-pity route because everything that is happening to her truly does suck. But she is sitting here, making sure I am ok and that I am taking care of myself, because MY HEALTH and well being is causing her to worry more than what is going on with her.

Blood doesn’t matter, she looks at me as her daughter and will worry like any mother.


Update on Phyllis for January 22nd:

FINALLY, hospice starts their schedule this week. It may seem like I have been mentioning hospice for a few times in the last few posts and it is because getting them to actually come to the house has been a huge task. Because of ALS, there are certain treatments that ALS patients get for ‘comfort care’ that in the eyes of hospice are categorized as “aggressive measures for treatment of the disease”. What does that mean? It means that they will not start hospice until all those measures are no longer being taken. However, with ALS, we had to explain to them that:

  • The feeding tube is so she can eat
  • The Trilogy ventilator machine is so she can sleep well at night or aid in breathing on rough days.

Both those items, along with the ALS medicine were the reason why she couldn’t get care. We finally worked with the hospice team to make them understand why this wasn’t aggressive measures for treatment and that it is truly comfort care.

In the upcoming week we are going to get a Hoyer lift. This is going to be a great help with getting Phyllis around and providing some relief for my dad in having to lift her up. If you don’t know what it is check out the link.  Also for those that may be going over there in the next few weeks. We will be moving her bed into the living room so that she is comfortable and also not just sitting in the bedroom all day. She sits in her chair now and doesn’t use the bed cause it was too hard to get out of.

Finally we are slowly getting her meds figured out. The prescription for her nerves is pretty strong and quite honestly makes her pretty groggy. So it has been a week of trial and error to try to get a pattern with it that keeps the tremors at bay and not be completely out of it. If I can get my dad to follow what I have been suggesting, we are hoping that it keeps the tremors at bay but allowing her to be alert enough to interact with family and visitors.

She had a lot of visitors last week; again that brings her spirits up so thank you to those that have stopped by.

Hunter and I stopped by on Friday to bring dad some dinner and hang out for a bit and we were able to get her laughing. When Hunter and I were on our way home, I asked her how she was. Sometimes the visits make her sad. This time she just said, “I am ok mom, it was a good visit and I really wanted to see grandma and grandpa, don’t worry about me”. I just said to her “It doesn’t matter if your 11 or 44 I am always going to worry about you”

It hit me on that ride home, that with all moms, biological, bonus, step, whatever you are, you will worry no matter where you are or how you are feeling about your kids.

Go ahead Phyllis and laugh because I know you are thinking “See, now you get it” 🙂








How strong can one be? Losing my_____

Have you ever been in a position where you said to yourself ‘I don’t think I can handle any more of this’ and one of two things happen. You handle it and move on or you lose it. However, when you do, you pick up the pieces and ultimately, you move on. I am not just talking about what is going on with Phyllis and ALS. I am talking about anything in anyone’s lives right now. I have friends with all kinds of struggles but I feel that at one time or another we have all been in the position of losing it.


Losing my mind

This last week was my first week back after a month off work. I would like to say I had a fabulous vacation in somewhere warm with sand and a cold beverage, but that is far from what happened. It was also Hunters first week back to school and her cheer leading schedule is in full swing. It seemed that it wasn’t possible for things to get any more jam packed on the calendar. I had a full blown vacation hangover. I know we all have the moments where it seems like from the time you wake up to the time you fall back into bed that you feel like you just ran a marathon. I know I am doing the best I can do and I know many others are out there doing the best that you can do too. But you get up the next day and start all over. It is a fresh start and you move on. But then you have that curve ball. As I like to say, the random thing that blindsides you on any random day. It could be your car breaks down, or you get the flu, or your kids get sick.  Whatever it is, it takes all your strength and control to not lose your mind.  In my case, ALS is that curve ball. It raises its ugly head and decides to throw us one early Wednesday morning. Phyllis had started to have new symptoms. Apparently her disease took a break for a few weeks, but the changes came back in full swing. God forbid we have some time without changes. From Wednesday on, it was a long hard week for all of us and especially my dad. Being an hour away, it is making me lose my mind with worry and frustration cause there isn’t anything I can do but call doctors and complain to them. Their response is:

 “There isn’t anything else we can do but make her comfortable.”

Losing my shit

I have a high tolerance for dealing with people in stressful situations. I like to think I keep cool when things go crazy. But when one has the everyday life challenges going on and then you get hit over and over and over again, after a while I think even a sane person would lose their mind in the aisle of Meijer shopping. I am standing there asking myself “Why am I tearing up in the vitamin aisle?” Because I can’t find Hunter’s vitamins she wants. Yup, I was starting to lose it over vitamins. My therapist that I had after my brother died called that ‘the pressure cooker syndrome’. I keep throwing things in the pot and the temperature keeps rising. Then if I don’t’ express myself or let off some ‘steam’ I will lose it over something dumb, like vitamins. Because we can only be strong for so long before we need to vent. I do get that chance to vent. My close friends and family, they have been awesome and supportive in my random ramblings and letting me rant against the disease that is being so unfair. I have learned a long time ago that I need to get it out, to release the vent.  If I don’t, it has such a negative impact on my mental and physical health and I need to be there for Phyllis and my dad. Hearing the doctors tell us there isn’t anything else that can be done just makes me angry. It is a horrible disease and I have educated myself on it enough this past year that I know what is coming. I see it. It doesn’t mean I am prepared for it. I still have hope. Hope for one more day, week, month, or year.als2

Losing my friend

I went to the house on Friday to help my dad and Phyllis out. The strength that I see in her is amazing.  She is one of the strongest people I know.  Not just in a physical sense. She used to be one of those ladies that would be able to help you move furniture in your home or pick up a shovel to dig up a garden. But she is also strong in a mental sense. Most of the times that I see her or message her – whenever we ask “how are you doing today” I get the “thumbs up” with a smile. This week, was a tough one and she was pretty down on Friday. Watching her like this make me want to do anything I can to try to make her smile, or bring her spirits up. It also makes me want to do everything I can to not break down and ugly cry. I want to fix it. I want her to know that I see her struggling and that I am here, we all are. Watching her like this gives me clarity that whenever I feel like I am losing it that I am stronger than I know. If she can deal with losing everything and being trapped in her body that is giving up and still have the strength to give me a ‘thumbs up’ then I can handle the chaos of work, school and life’s curve balls.


Grandma Phyllis with her Grand-babies – Bree and Bailey

Update on Phyllis for January 16th

As I mentioned, we had some drastic changes this past week. Wednesday she started to have these ‘tremors’.  From what the doctors told me, it is the disease just firing off all the nerves and losing control. For two days, there was little to no sleep for my dad or her, texts and calls from him in a panic, it was painful for her and trying to get the doctors and nurses to find something that can help took too long. She described it like when your hand or foot falls asleep and you have the pins and needles effect, except it was all over her body. She and dad had a rough Wednesday and Thursday trying to get the tremors under control. By the time I got there on Friday, she only had a few light episodes. But nothing as bad as it was. John Covel spent the night on Wednesday and Thursday but I am calling hospice today to try to get them 24 hour care. My dad is still giving me the ” I can handle it speech” and I am just telling him to deal with me working on getting him help. She has lost her ability to walk. She cannot use her left leg anymore to sustain weight or help her get up. I helped on Friday and stayed up with her till about 3 am.img_2991 This is what 3 AM looks like. Tired, fighting sleep, no make up, but I am still smiling. Why? Cause Phyllis and my dad are getting a good night sleep. I can sleep any other day of the week but Friday I dealt with a little sleep deprivation to do what I can. Plus I got some work done :).  The doctors have told us to take her off the rilutek since it has ‘run its course’ and it isn’t doing anything for her. That is the medication all ALS patients get to try to slow down the progression of the disease. While this is not what we wanted to hear, the stupid twist to it is that we can now get Hospice. You cannot get hospice for a person if they are doing anything or taking anything to prolong life. So with her getting off that medication, Hospice will hopefully give us the help we need.

I see all kinds of posts from friends about their struggles. I know that saying ‘I will pray for you’ may not always help, but I do. If anything, I feel it’s a little positive energy sent their way. I am hoping that they feel the support somehow. I know that everyone is dealing with their own personal struggles and I know I am airing mine in the blog. I do try to keep it bright and funny but this week just wasn’t either.  I heard a friend this week tell me that “she was a horrible mom” because she feels like she isn’t doing all she can for her kids. She has her own struggles and with the help of friends and family she is handling it. I told her, and I am trying to do this myself. “Stop thinking about what you are doing wrong and focus on what you are doing right. Focus on the positive. Sometimes we don’t see how the people we love in our lives are thriving because we are doing the best we can to help them and support them. Even though we may feel like we are failing.” I took a moment this week to thank my John for being there for me. Because I was looking at the negative about living so far away and that it kills me. He just told me to ‘do whatever I need to and don’t worry what others are saying. You HAVE to take care of your dad and Phyllis.”

We are stronger than we think we are. We just don’t realize it till we are forced to be strong because it’s the only choice we have.


So fresh and so clean


Happy New Year! I hope everyone had a great and safe New Year. I took a week off from updates to just spend it with family and celebrating Christmas.  With 4 extended families, I feel like we ran a marathon with trying to see everyone before Christmas. We have family locally, then in Milan, and then in Toledo. It is always good to see family that we should see more often than we do and I hope to change that this year.

With a new year, I always feel like it is a fresh clean slate. You have the chance to start the new year off like a new year at school. Everything is new, we all have these plans for the upcoming year. I know many will be doing the get healthier, lose weight, or whatever but I want to ask all of you to try something different this year. Take something you are passionate with or something you want to learn. I am pretty active in charities surrounding families in need or shelters and last year was my first year as a board member for Project Beautiful Inside and Out. But this year, I want to try to do something every month with Hunter.  I am lucky enough that Project Beautiful Inside and Out allows and encourages youth to participate in their volunteering activities so that is one of my goals this year, get Hunter more involved.

So here is your challenge. Think of something you can do every month and find time to do it. If you don’t have the financial ability to donate, then look to other things like:

  • Visiting an older acquaintance and spend time with them or help at their home.
  • Help at local shelters (either animal or people).
  • Help at schools or Churches that are in your neighborhoods.

Your time is as valuable if not more as any cash donation.  Make a list and try to check it off at the beginning of the month. It is easier to do that scrambling at the end of the month and not making it happen. Make kindness and compassion a goal, whatever you may choose.

Prayer request: Besides having Phyllis in your prayers, can you also add my John’s 93 year old Grandmother AKA ‘Great Grandma’ as Hunter calls her. She fell 2 weeks back and then last night was admitted to ICU. Grandma Sarah is a strong, stubborn Italian lady and the matriarch of the Vossen, Lukasik, Howell, LaMontagne and Darrah families – who we love dearly 🙂

Phyllis’s status for the Week of December 26th: We had the follow up appointment with the Holistic doctor on Wednesday. She said that she is seeing some improvement from the last visit and modified her medication a bit. However, the new modifications seemed to upset her stomach so we are going back to what was working and I have called the Holistic doctor to keep her updated.  She has her good days and not so good as she is feeling weaker. I want to ask friends and family, if you know someone not on Facebook, feel free to send them this blog and tell them they can follow it. Phyllis had a good friend of hers just find out this past week that she has ALS and was a little sad that she didn’t know. We finally got the home care setup and schedule in place and now my dad is getting some help. But if you are able to help please let me know. It is hard for him to get out for errands and finding someone to hang out with Phyllis since she cannot be left by herself. Just visiting with her is helpful to my dad.  If you can, contact me, my dad or even Phyllis. Send me or Phyllis a message on Facebook. Speaking of Facebook, Phyllis is on it constantly and will chat on messenger.  Since she can not speak anymore, please send her messages of encouragement, or just to say hello to either Facebook or text her phone. Also a thank you to those who have been sending me info on ALS trials, home care help or just helping in general.  You know who you are. Lots of Love to you all.

Bittersweet New Year

As I said above, each New Year is like a clean slate. But it was hard for many of us in the family, and I think I can speak for all of them when I say, with 2017, we are so unsure of what it brings. We know what we are facing with Phyllis’s diagnosis. We know the outcome.  Will it happen in 2017? We hope not. So the ‘clean slate’ we are hoping for already has things written on it, but one of the things I will be adding is Hope. Hope for improvement, hope for a cure and hope for Phyllis and Dad .

Make your clean slate count, cherish what you have because you never know what will blindside your everyday life on a random Wednesday.  Life is to damn short.