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 3^rd. 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.

-L-

 

 

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 70^th 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 3^rd.

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

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 16^th.

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

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.

If 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 19^th

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

-L-

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

This 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 22^nd:

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” 🙂

-L-

 

 

 

 

 

 

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.

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 16^th

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. 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.

-L-

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 26^th: 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.

-L-