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-