Life As I Know It

Week 7

noreply@blogger.com (Stacie) — Tue, 28 Apr 2020 05:43:00 +0000

Holy crap. Week 7. Ugh.

Milestone...we reached full overload today. I suppose it was bound to happen, and that it took this long to get to it can be seen as a positive. However you look at it though, the day was rough. The day was filled with bickering and side eyes and dirty looks from young and old alike. Not pretty. Our solution was to try and carve out our own space to take the day off from each other. There were varying degrees of success on that, but we tried.

I sure hope it helped. Tomorrow is a new day.

Distance Learning

noreply@blogger.com (Stacie) — Fri, 24 Apr 2020 05:54:00 +0000

I anticipated that juggling work from home and the boys' distance schooling would be a challenge, but I wasn't expecting how much so. This week has kicked my behind as I struggled to figure out and schedule some time for the boys to get their assignments done (with only one of them mostly independent, one slightly independent, and one not at all independent). It's still a work in progress, I think.

The boys together have 13 different teachers sending emails, plus the emails from support service teachers. One of the boys doesn't want to have anything to do with Zoom meetings because they overwhelm him, yet all of his teachers and the support services want to do them. It's been ... fun. I've learned a lot of what not to do as I deal with my own kids' teachers, which I suppose that is a good thing for my own students.

That said, my own students are about to complete their first week of distance learning. Of my 170 students, 50 of them are still MIA. No one answers phones or emails. It's quite alarming.

Bug

noreply@blogger.com (Stacie) — Sat, 18 Apr 2020 06:27:00 +0000

I don't know what came over me, but today I got the bug to do something. I ended up scrubbing all of the walls in our bedroom so I could prep it for painting. Apparently, when I get the bug to do something, I go all out. I needed to feel productive, though, so I think this is a good thing.

Week 5

noreply@blogger.com (Stacie) — Mon, 13 Apr 2020 05:19:00 +0000

Here we are at the start of the fifth week of social distancing. Honestly, I expected the lock down to come, but I don't think I fully grasped that we'd be here 5 weeks later and still really have no end in sight. Strange times we're living in.

We all set a goal for ourselves last week. We didn't even aim high for the goal, yet not a single one of us hit our goal. That's not the best track record. lol. I guess we try again tomorrow, although I don't know that I am holding out high expectations for success this week either.

All of this is eerily similar to how I felt back on bedrest with the twins. I had high hopes for doing all the stuff then, too, but nope. Nothing got done. All I did then was play games on my computer and blog. Funny how little things have changed.

We did accomplish the big neurology appointment we had for one of the boys. He started having seizures out of the blue on his 12th birthday. It's scary for him and scary for me, so I was really hoping the appointment would be a good one and we'd walk away with a treatment plan. We've started him on some medication, have seen zero side effects so far, and most importantly, haven't seen any more seizures. We're all keeping our fingers crossed that the meds continue to do their thing.

So Sad

noreply@blogger.com (Stacie) — Sat, 11 Apr 2020 05:10:00 +0000

We learned Isaac's family member in the hospital due to Covid passed away this week. Such sad news. My understanding is that the service will be small with only immediate family, which is also so sad to me. This virus steals so much from so many -- freedom, connection, and ultimately life -- and continues to steal from families when it prevents those still living from joining together to mourn their loved ones.

3 Weeks

noreply@blogger.com (Stacie) — Sat, 04 Apr 2020 03:12:00 +0000

Three weeks of social isolation down. No one has been out for the last two weeks with the exception of Isaac, who took the cars out for a drive.

Instacart delivery comes on Wednesday for our two week grocery run.

I ordered some masks off of etsy earlier this week. While I don't plan on anyone going out, you just never know if the need will arise. Best to be prepared. Our state and county recommend wearing them now.

I managed to find some Clorox wipes online this week, too. I felt a little like I won the lottery when I was able to purchase them. Now, if I could find some toilet paper, I would be happy. 5 people, 3 of them kids, use a lot of toilet paper I've found. Who knew?

I had a low day yesterday. One of the boys was ill yesterday (he had a seizure, his fourth, so that brings on a whole new challenge), so it all just weighed heavily on me. Today, though, I am feeling better. It helps that he is feeling better, too.

No new news on the family member in the ICU. I'm going with that being the best sign we can hope for right now.

Done for the Year

noreply@blogger.com (Stacie) — Thu, 02 Apr 2020 04:37:00 +0000

The governor declared that we will be out of school for the rest of the school year. To put that into perspective, we had not yet started our third trimester when the stay put order was put into play. We don't get out of school until the third week of June. Even though we knew that something like this was a very real possibility, I think it is a shock to everyone. My own kids are sad. My students are so sad. I'm sad.

It's a bit like we're living in a bizzaro world that's running parallel to the real world. Sigh.

Touched

noreply@blogger.com (Stacie) — Tue, 31 Mar 2020 03:49:00 +0000

I suppose it is inevitable that someone in our lives will be touched by this virus. Many of us probably now know someone who is probable or maybe even positive. Maybe fewer of us have already been touched by a death. It's a warped waiting game until we know who that someone in our lives will be and how close the relation will be.

We've learned that someone in Isaac's family is in the ICU on the ventilator. So sad. Sigh.

And yet, life continues. For us, that means celebrating our littlest, who turned 9 today. His desire for a party (his first time asking for one) put on hold until we can actually hold a party if we ever can at all. Schools are closed through May 1, but the governor said in this evening's update that they don't expect the peak of illnesses here until April 26. There's no way we're going back on May 1 if that is the case. No friend visits for the foreseeable future for any of us.

It's easy for us to understand, but it's a bit harder for a 9 year old to grasp. I'm not sure what could be done about that except to keep on keeping on, right?

We celebrated him as a family. He was thrilled overall with everything. For now, that is more than enough for all of us.

Something

noreply@blogger.com (Stacie) — Sat, 28 Mar 2020 05:23:00 +0000

Funny how hard it is to find something productive to do with myself when there actually is all the time in the world to actually find that something to do. Yes, I am working. We're making the transition to online learning, which is much easier for me to do than others I've found. I integrated plenty of technology into my curriculum. We regularly used online tools and platforms in class. However, it is quite clear that many of my fellow teachers were not doing the same. I've been fielding calls all day long about how to this or that online.

And yes, I am helping the boys with their schooling. S's learning takes more attention and direction from me as he needs the direct learning support, so I do spend a while focused on him. The littlest is a bit adhd, so he needs some one on one time as well. J, thankfully, is quite self sufficient, which is helpful.

Still there is a lot of time left in the day. Time that I could be doing so much more than I am currently doing. I sit down and get lost in the television or FB or email, and before I know it, the day is gone. I'm not even playing games on my phone any more. It's strange.

Supposedly being in a state of trauma response is exhausting. Avoidance is the coping strategy when a person feels powerless. I don't know that I would say what I am feeling is a sense of powerlessness, but maybe that's it? I don't know.

The time does remind me of how I felt when I was on bed rest back when I was pregnant with the twins. All those weeks doing nothing but moving from the bed to the couch to the bathroom. I had so much time then, too, but ended up doing nothing with it.

I've decided I need to find something fun to do this weekend. I need the outlet. I need to feel like I've accomplished something...anything. Here's hoping I find it.

Day 12

noreply@blogger.com (Stacie) — Thu, 26 Mar 2020 06:09:00 +0000

Tomorrow is day 14 since I was with my coworker who was likely Covid positive. (They won't test her because she no longer had a fever.) It is such a relief that I can put that behind me somewhat.

There are now 50 diagnosed cases in our county. 5 have been diagnosed in our city. As we all know, the number is likely much higher, but you can't diagnose unless you actually test people. We're just doing our thing to keep ourselves safe. That's all anyone can do.

The boys and I haven't been out of the house beyond our back yard since the 14th. Isaac went to the pharmacy on the 17th. We did do an instacart order today, but we could have held off longer than this. When I was setting up my order, it said the earliest delivery I could get was on Monday the 30th, so I put submitted the order yesterday to save the spot. I was pretty surprised to get notified they were going to shop and deliver it today instead. Lol. Oh well. After decontaminating everything like I'm some kind of crazy person, we are now supplied for another week or two.

Homeschooling is going well for the boys. J had his first Zoom meeting today. He has another one scheduled for tomorrow. S has his first Zoom meeting tomorrow. (Not sure exactly how that will go. lol) I have a staff meeting via Google Meet tomorrow. We're all still doing "enrichment" activities, so the meetings are basically giving the kids a chance to see each other and check in with their teachers. I can't do any type of virtual meetings with my students yet because the district hasn't been able to deploy devices and hot spots to students yet. (I'd say 40-50% of my students do not have access to a device and/or internet at home to use for online learning.)

Day 9

noreply@blogger.com (Stacie) — Mon, 23 Mar 2020 05:33:00 +0000

It's maddening to me that there are so many people who completely disregard the stay put and social distancing mandates. A neighbor of ours threw a party today, complete with loud music and lots of people. It took everything in me not to yell something at them while they were partying it up. How dare they? They have such little respect for anyone else that they'd continue to gamble with large groups and put others in danger. It's so selfish.

~~~

We watched The Greatest Showman this evening. It's a particular favorite of Jack's. He loves the music and sings the entire way through the movie. Tonight, I didn't feel the joy watching Jack sing that I usually do. The characters sang "This Is Me" declaring they're "who they're meant to be," all I could think about is how cruel the world is toward those who are different. In 150 years, people really are not that much more accepting than they were then.

My family is one that is different, and for the first time I'm feeling scared of those differences. It isn't because of my boys. I think they are amazing just the way they are. But to other people, often people only see those differences. Many times, people will see past the differences to the uniqueness within, but that doesn't always happen.

~~~

We've been in practicing social distancing in this state for 9 days. The news is one story after another on how it is wreaking havoc on countries, on communities, on hospitals. Supplies are running short and hospitals are overrun with illness which is causing those who are in charge to make heartbreaking decisions about who they can or will help.

Age has already become a factor in who gets treated. Some hospitals will no longer help those 60 and above.

60! There is so much living left to do at 60.

It makes my mind swim at the thought of what other kinds of arbitrary parameters might be established to keep up with the demands placed on hospitals.

It's age now, but what will the next factor be?

When I let my mind go to those dark places, I wonder. We're already different. If it came down to it, would my kids' differences be a deciding factor against them?

~~~

My neighbors' party. People playing sports in the park. Crowds at the beach. People determined to go see the cherry blossoms...

All of it makes me angry.

All of it adds to potential exposure and infection.

All of puts the lives of others in danger and potentially forces decisions that shouldn't have to be made.

Well This Week Was a Long Year

noreply@blogger.com (Stacie) — Sun, 22 Mar 2020 06:49:00 +0000

This was quite the week.

Last Friday, we were told after school started that my school would follow the county's guidelines be out for this week (3/16-3/20). We were told at that time to take our computer and charger and not come back. It was later confirmed that the boys' district would also follow the county's guidelines and also take this week off.
On Saturday, the local newspaper published that a student in our district was "presumed" positive for Covid-19. Based on that information, my district decided we would out of school through the end of our spring break, or 4/20. Work assigned to students was expected although we were told the work would not be graded and was only enrichment.
On Sunday, we were notified that the student tested positive on their first test, but did not test positive on either of two subsequent tests, so was no longer "presumed" to have the virus. Great news for the student and their family!
By Wednesday, we were notified that all districts in the county would be out of school through May 1, and that we would be moving to e-learning for the time after after spring break and for as long as we are out of school. We were also told there is a strong possibility we will not return to school this school year.
On Thursday, our governor called a state wide stay-home order, effective that night.
On Friday, I was notified by my co-worker who teaches in the room next door to me that she is "presumed" positive by her doctor, but she did not have currently have a fever so they would not test her to confirm. She had all the other symptoms including some digestive issues. Yes, I worked with her regularly. Yes, it is quite possible I was exposed, although she had been sick, so I know I kept a further distance than I might have otherwise. (I have 5 more days until the 14 day incubation period is up. Fingers crossed.)

So, yeah. There has been a lot going on.

I am trying to give myself and those around me grace because this time is challenging for all of us. I am not one who does well with uncertainty, though. I like to have a clear plan and move in a forward direction. In times like these, however, clear plans hard to come by.

Obviously, the focus is on making sure the boys are set. I want to make sure they have "something" educational to do and create the structure they need to thrive without stressing us all out. I've set out some pretty basic expectations for the week: As of now, weekends are free from work as a normal weekend would be. For Monday through Friday, our goal is to complete reading (min. 30 minutes a day), academics (min. 1 hour a day), creativity time (min. 1 hour a day), chores (approx. 30 min. a day), and we're trying a new program computerized program to help work on calming skills.

My goal is to limit tech time during the week, and I think we've done a decent job on that. We purchased some Chromebooks for the boys to use for their academic work.

They boys (who are now 12 and almost 9 and in 6th grade and 3rd grades) seem to be taking everything in stride right now. I'm happy about that. We've even managed to avoid the dreaded "I'm bored, mom," this week. I'm happy about that, too.

What I am sad about is how this is impacting S. He is the one who is least adaptive to change in his routine. Plus, we fought his school district SO HARD to get them to implement the strategies and services he needs so he can thrive. It's taken us years of state complaints, mediation, advocates, lawyers, meetings, and time to get to this place. We just finished completing a pretty solid IEP for him three weeks ago...and now this. Sigh. While I am glad that I get this opportunity to work with him myself (Isaac, too - he may be a special ed teacher at heart) I'm just frustrated with the break in the other services we can't provide. Sigh.

It was mentioned to me by another blogging buddy that maybe we should get back to this blogging thing. We are living through a historical time here. I'm sure it will be interesting to be able to look back on all that happened during this time.

May we all stay safe and healthy.

All of the Things

noreply@blogger.com (Stacie) — Tue, 19 Feb 2019 07:24:00 +0000

Never one to really pay attention to the news or politics before, for the last few years now our nights are filled with news and TRMS. I had the distinct feeling, the other day, that we have become my parents as I can vividly remember them doing the same thing during the Ross Perot days. It's a little shocking to realize we are now the ancient age they were then. I'm not sure how that happened.

~~~

My mil was diagnosed with dementia several years ago, and while she and I have never been close, it is still ~~painful~~ heartbreaking to watch someone experience this journey. The decline hasn't been linear, so we never know how she'll be impacted from day to day.

Family dynamics are often a challenge during good times, so it isn't surprising that when things get hard, the cracks will show. And they have--oh boy have they. As much as I wish it didn't, it also brings out some resentment on my part. There is a part of me that resents the attention mil now requires after a lifetime of her having little to do with us...when my own mother devoted so much of herself to us and in the end received so much less. I so wish she were here with us.

It will be two years Sunday.

~~~

One thing about my boys’ school district is that they do really well celebrating those who excel. They invite kids to board meetings and have big ceremonies and such. These kids get t-shirts and hats and certificates and praise on a regular basis. Kids can flourish in that kind of environment. I have a kid who is celebrated at every turn. He is so, so smart, so it is nice to see that others recognize that, too! If I only had kids who excel, I’d likely be very impressed with their district.

The thing is, not all kids excel or find school easy. Some struggle...and it is with that population that I’ve found their district is woefully ill equipped. The kids who give it their all, yet still fall short of the upper 10% seldom get recognition at all (and certainly don’t from the district itself). Kids plugging away and being their best selves can be ignored. Kids with learning differences who need a bit more than others to make the learning field accessible and fair can be pushed aside. I also have a kid who struggles, who works harder than any kid I know. He is so, so smart, and it's heartbreaking to see that others fail to recognize that in him. Getting what he needs has become a costly battle—we are in due process with the boys' school district. After years of trying to do what I could to get the school to accommodate my kid, we ultimately hired an advocate in 2017. It has been a continuous back and forth for the district to ultimately say they'd no longer agree to anything without litigation. The lawyer is now doing his thing. But honestly? Why should it take thousands of dollars to get the school district to do what they should have been doing all along? It isn’t because we want for our kid to have better than everyone else. It’s because we want “accessible.” And if it is this hard for some with a MA (in administration even!) to get what her kid needs, what is it like for those without a background in education? I know the answer to that.

It’s easy to celebrate the creme de la creme. I think to impress me, there needs to be a push beyond that. To impress me, there should be more done for those who struggle the most—not because they are forced, but because they know it’s the right thing to do. To impress me, all kids should be given what’s needed for them to flourish, and it shouldn't take a lawsuit to get to that point.

~~~

House hunting in our area is not for the faint of heart. We've been looking, although not aggressively right now since last summer. Apparently I have expensive tastes. lol. Hopefully the right place in our budget will reveal itself soon.

~~~

I've been dreaming a lot lately, which for me to both remember what I've been dreaming and have it reoccur over is unusual.

People have been chasing me as I desperately try to run away.

I'm running through sludge as I try, unsuccessfully, to chase my kid as he saunters down the street away from me. (And it isn't the kid who would be sauntering that I'm chasing. Just saying)

I've had to get somewhere important only to end up sitting in my car, snarled in a traffic jam, watching the clock tick down to the appointment time.

Each night the scenario is slightly altered, yet the feeling is always the same. I need to be somewhere/do something yet can't do what has to be done.

Dr. Go.og.le tells me that I am feeling powerless or lacking self-confidence. Wonder why? Sigh.

~~~

Alone

noreply@blogger.com (Stacie) — Mon, 13 Aug 2018 08:15:00 +0000

The boys have been so funny lately. Challenging, too, for sure, but funny. Last week, they had done something that made me chuckle. Without thinking about it, I reached for the phone to call my mom. She'd chuckle about what they did, too.

It took longer than it should have, I suppose, before I remembered. She isn't there to call. No one is now. Yes, my brothers are out there (although we communicate via email if at all). My aunts, uncles, and my grandmother are there. Even very dear friends I consider more like sisters are in my life. It just isn't the same, no matter how much I love them. No one cares about my guys the way their dad and I do, accepts them without a second thought, or listens to the mundane details of our day because they care about it all. I am alone while surrounded by people.

The people I belong to are no longer here.

It's a humbling thought. It still shakes me to my core.

~~~

We keep on keeping on around these parts. Not much else to do, is there?

Ten

noreply@blogger.com (Stacie) — Mon, 17 Apr 2017 05:05:00 +0000

Yesterday was the 10 year mark for blogging. It seems a bit surreal to see that number. I started this space the day I started stims for the cycle that brought me my boys...

So much has happened since then. I don't think the me of ten years ago could even fathom how different life would be right now. I can't even fathom it, and I'm living it. Sigh.

Anyway, while I don't blog here as much as I used to, I do still care deeply about this place and all of you who have been here for the journey. Thank you. For everything.

Stac

Keep On Keeping On

noreply@blogger.com (Stacie) — Sun, 09 Apr 2017 06:39:00 +0000

It's been 6 weeks. An entire month has passed without her in it. Sigh.

~~~

I'm on spring break right now. Instead of relaxing and regrouping for the last 43 days of school (yes, I am counting down), I've been spending my time at my mom's house packing up her belongs and starting to prepare her house for sale.

It's a heartbreaking thought, really. Aside from the memories and people who love and miss her terribly, her life has been reduced to the contents of a 1500 square foot house. The task has been both infinitely harder than I expected and simultaneously easier. It's...

I don't know.

I do know that here I am going through the things she collected over the years while trying to figure out what they meant to her or why she felt like each particular thing was worthy of keeping. I know so many stories behind the things...but there are so many I do not know. How could I have spoken to her every single day, spent countless hours at her house, and yet know nothing about so much?

There are things I've found that have made me laugh. Her insane amount of undies in her drawer, enough where she could have gone months without washing had she wanted.

Yet, she had gotten rid of so many of the clothes in her closet that she had 12 shirts and a few pairs of jeans she cycled through regularly. Not much else was in her closet clothes wise. I wonder if that was restraint on her part. I know she worried about money. Did she not buy clothing for herself because of that? It makes me sick inside to think that could be the reason.

It has made me think about what my own children will find when they go through my belongings once I've gone. Will they wonder why I have so many damn jackets and purses when I always use the same ones over and over? Will they look at the set of pregnancy tests I've kept and be grossed out rather than sentimental like I am? Probably. Sigh.

~~~

My intention was to do the probate of mom's estate myself, saving a substantial amount of money in the process. I purchased a book that told me how to probate an estate in 132 easy steps. At least it seemed that way. I started the process. I completed several forms, but I was just so stressed about it all that I decided my sanity is worth more than saving money. I went to a lawyer - where I found my paperwork was done correctly, thank you very much - and turned it all over to him. The hearing is in May; I'll be moving forward with selling the house once I've been named executor. (I continue to fly solo on decisions, despite the fact that both my brothers live within a mile of her house. I sure hope that changes, but I don't know that it will.)

~~~

Both of my parents requested to be cremated. Their current happily ever after location is my kitchen table. It's somewhat surreal. I'm not all together comfortable with that location, but I am not sure where to put them. They didn't exactly want their ashes spread anywhere, and I'd have to admit the conversations about cremation never extended to what would happen after. So, there they sit.

I did decide that I am going to have a cremains necklace made for myself. (Funny that the thought of wearing their ashes wigs me out so much less than finding a place in my house for their ashes.) I've also decided to make memorial necklaces for the grandchildren as a gift. Of course, to do this will mean I will have to open the urns to extract the ashes, but I am trying to not think about that part.

~~~

We are all still processing the loss. My knee jerk reaction to call my mom whenever something happens or to just talk has lessened some. It is a little scary to realize that something has happened and that desire to talk to her about it didn't come like before. I miss her terribly, but the tears have stopped (for all of us) for the most part. The sadness isn't quite as crushing as it was a few weeks ago. Progress, I suppose.

Ja.son has selected some mementos from mom's house and has put up several pictures next to his bed, which seems to bring him comfort. He, too, is now able to talk about memories and fun times without the immediate welling of tears, although he still does well up from time to time.

Ja.ck's concept of what is going on has been harder to gauge. He is still so young (just turned 6) and he wasn't as close to grandma as his brothers were. He knows and says that he misses her, but we haven't got a lot more out of him than that.

Sh.awn is the one I am most worried about, in particular because he does have an expressive language delay and it is hard for him to articulate the thoughts he has. He has also never cried, even though, he, too, talked to my mom almost daily, and I think feels this loss on a much deeper level than his brothers because of that. When she first passed, any time we talked about it or mentioned her name, he would suddenly state he wasn't feeling well and needed to go to the doctor. Thankfully, that has passed. Now, he will randomly ask where she is, even though he knows the answer, and tell me that he misses her. He even pretended to call her on the phone the other night to talk. That just about broke my heart, I have to say.

Overall, though, we are as good as you could expect in this kind of situation. We're doing lots of talking, lots of snuggling, and we keep on keeping on.

Numb

noreply@blogger.com (Stacie) — Sat, 18 Mar 2017 05:19:00 +0000

My mom passed on February 24th...man, that is still hard to write. She passed peacefully while listening to a video of my Shawn singing "You've Got a Friend In Me." I hope that brought her some comfort...

While I know with every fiber of my being that she is no longer here-how could I not with this permanent ache that I have-I think I'm living just this side of denial for the time being. Maybe that is okay? Or maybe it's not? I don't know, but for now, I am able to keep getting up and doing what needs to be done. Because really? There isn't anything else to do.

Children still need to be cared for.

Bills still need to be paid.

Things I would rather not have to do have to happen.

Like it or not, life continues. There's no pause. No stopping. It just continues, even during those times you wish desperately that it wouldn't.

Hospital 2

noreply@blogger.com (Stacie) — Sat, 18 Feb 2017 20:09:00 +0000

They called me this morning with news that she has had a heart attack. They took her down for an angiogram where they found a tight blockage of her main artery. They placed a stent. The procedure went very well.

We are now hopeful that this will allow her to oxygenate better and focus on improving. She was starting to show some signs of responding to the treatment for pneumonia before the angiogram. Now we can hope for even more of a positive response. She is still very sick, though.

And I am still really worried.

Hospital

noreply@blogger.com (Stacie) — Sat, 18 Feb 2017 08:08:00 +0000

If you could keep my sweet mom in your prayers, I would greatly appreciate it. She was hospitalized on Wednesday with bilateral pneumonia. She was doing okay. Oxygen levels were lower than they'd want, but she was hanging in there. This evening, I got the call that they needed to intubate. She has been through so much...she refused. Was adamant. I went to the hospital to convince her to keep fighting. Finally, she agreed to be intubated.

My gut said that after everything she's been through, this isn't going to be the thing that takes her. I told her that. Now I'm questioning myself. Is my "gut" nothing more than some stupid Pollyanna reflex, and I'm full of shit? Denial? I don't know.

I do know I'm shaken. She is very sick. This could be very bad.

Now we wait and pray her body and the meds are able to do what they need to do so she can heal.

This and That

noreply@blogger.com (Stacie) — Tue, 07 Feb 2017 05:55:00 +0000

The plague is upon our house, and everyone is sick except me. I have, however, been coughed, vomited, and snotted on, so I imagine is is just a matter of time. The joy.

~~~

My mom has completed her 7th of 12 chemo sessions. She is hanging in there, but it is clear that the full dosage of chemo is too much for her body. We did a trial session with a reduced dosage (80% of the dose) for session #6, and she did so much better physically. On Thursday we are to discuss how to proceed.

Reducing her meds is a scary prospect. There are no studies on the effectiveness of a lower dose, so to change the plan will bring in questions on the long term outcome. :(

~~~

We will be headed out to a camping weekend this month. The camp is designed for kids with serious medical issues and their families, so I am really hoping the boys love it. I, on the other hand, am pretty equally divided between dread and excitement, depending on the time/day you ask.

I'm feeling 90% positive about the whole thing. That 10% that is questioning though? Sheesh, it's loud and persistent. Sigh.

~~~

We just celebrated the big boys' NICU Homecoming Days. It's mind blowing to think that it's been 9 years since our time in the NICU. Seems like yesterday in a lot of ways. It also seems like centuries ago.

Ready for 2016 to Hit the Road. Bring on 2017.

noreply@blogger.com (Stacie) — Tue, 27 Dec 2016 08:45:00 +0000

Tomorrow my mom goes in for the start of her third round of chemo. She does as well as can be expected, but she is pretty miserable from the side effects of all the meds they give her.

She had a PET scan last week that showed DRAMATIC improvement. Looking at the difference between the scan from a few short weeks ago to now are breathtaking. Her body was riddled with tumors before she started chemo--more than I even imagined. The sight of those images made me ill. Now, thankfully, tumors that had blackened her internal organs on the first image are nearly gone. Her lungs are clear. Her stomach looks to be pretty much clear. Her liver still has a small spot, but overall, the difference is striking. It really is an incredible sight.

Her oncologist was beaming. "Just what I expected to see!" he declared.

I am slowly starting to exhale and a tiny bit of the dread has lifted. I'm still guarded, but there is hope there, too. My mom, however, is still in the thick of bimonthly injections of poison and will be until the first week of April. She had hoped that a good scan would mean a shorter course of treatment. It was hard for her to hide her disappointment when she learned that wasn't to be the case. And, well, my heart hurts for her.

~~~

With my mom being ill, it has fallen on me to coordinate and execute the holiday festivities. It was definitely a challenge for a number of reasons, but mainly, I just haven't been in the mood for celebrating this year. Plus, I was reminded why I do not care for cooking.

Thankfully, I managed to pull it off while not poisoning anyone in the process. I'll call it a win.

~~~

At the start of December, my husband received a frantic call from his brother. Their mom was missing. She had never arrived to a destination that should have been a 5 minute drive from her house. They did end up finding her some four hours later. She was in a city 30+ minutes away in the opposite direction of where she was headed. She had totaled her car in a single car accident.

The scariest part is that she had no idea why she was there or how she got there.

Fast forward to a "family meeting" that included my husband and his brothers, their mom, and their aunt (mil's sister) in which a letter from a doctor was provided that was dated TWO years ago stating that my mil showed symptoms of dementia. It was the first time any of the brothers had heard that news. The aunt said, "oops, sorry" about not telling them, and that was that.

So...yeah.

The boys are now cycling through taking her dinners and scrambling to get info that has been slow to come/non existent. The aunt has not exactly been forthcoming with information. (She took mil to the doctor and mil got two new scripts since they all had their meeting, but the aunt didn't tell the boys about it. I actually found out through another source which led to my husband asking a direct question about. SIGH) The mil is showing some concerning behaviors, which isn't looking great. She's not even 70. :(

This is yet another situation in which I can only do so much. I'm tired of these situations.

~~~

We have finally squared away oldest child's IEP. It only took two months and 4 meetings totaling over 9+ hours of discussions to get there, but hey. One has been signed that I can live with. Oh, and as a bonus, they finally delivered on an accommodation (adaptive keyboard) that was written into the IEP in May...of 2015!!!!...just before break. How awesome is that?! (eye roll)

I am frustrated with the whole lot of the people at their school. I know they would rather I disappeared. I'll say it again. If a school/district can be this inept when they KNOW I am an educator and that I KNOW what they should be doing, I shudder to think what other parents without an educational background goes through.

~~~

But you know what? I have these guys...

They're pretty awesome, too. :)

~~~

So, needless to say, I am over this year. Let's bring on 2017, and with it bring on a year of health and happiness for all of us.

xoxo,
Stacie

Life Keeps Chugging Along

noreply@blogger.com (Stacie) — Mon, 28 Nov 2016 06:01:00 +0000

Isn't it funny how life keeps moving even when you want nothing more than to curl into a ball and have the world stop around you? Sigh.

Things keep moving forward. Tomorrow is my mom's third chemo treatment. Aside from feeling like she's been run over by a truck. losing weight, and nausea when she hasn't taken her meds, she seems to have missed many of the side effects that could be plaguing her. (I'm knocking on wood and throwing handfuls of salt over my shoulder as I type that so not to jinx her.) She has a PET scan just before Christmas - I wish they would have been more sensitive to the timing of that. It could be very good if we see positive things happening or very bad if we don't... Sigh. So there is that ahead.

Two weeks ago, she called me to come shave her head. That was a LOT harder for me than I expected it to be. She was very stoic about it all. When I got back to the safety of my own house, I was a mess. I could probably still find myself crying about it if I thought about it for very long. There is something so tangible and heartbreaking about losing her hair.

I was in a miserable situation with a student teacher this semester, as well. The man assigned to me had very limited experience in an Am.er.ic.an classroom (he immigrated here 5 years ago) and absolutely no experience in middle or high school Then he announced that he had never really spoken in front of a group before this experience. Which? Why would anyone think this job would be the one for them with all of that stacked against them? The most frustrating part for me was that he was also incredibly arrogant for someone in his position. I had reached the point of dreading going to work each day. Things came to a head two weeks ago, and I asked for him to be moved to another placement. Such relief when he was finally gone.

I've also struggled with the boys' school again this year. There is an entirely new IEP team in place this year, so I am back to the starting board when it comes to getting them to address the boys' needs. Sigh.

Such is the way of things, I guess. Life tends to pile on the crap to wade through when you're at the bottom.

The boys had this week off from school. It has been welcomed, that's for sure. There were plenty of PJ days and piling on the couch to watch movies. Definitely a salve for my weary soul. We have 15 school days until winter break. I am so looking forward to that, too. Until then, there is nothing to do but keep on keeping on.

Hanging on by a Thread

noreply@blogger.com (Stacie) — Sat, 22 Oct 2016 05:26:00 +0000

Doctor appointments, scary conversations, kid IEPs (including another round of fighting with the school), nights with little to no sleep, and my period had made the week miserable enough. Dropping my phone in the toilet at work today was just the cherry on top.

It is easy to see that I am slowly drowning in it all. I can't quite figure out how to be everywhere I have to be, all at the same time.

PET scans. Heart ultrasounds. Lung function tests. A repeat endoscopy.

There is now renewed concern that the original stomach ulcers are cancerous. Instead of reducing with treatment, they've grown. More biopsies have been sent out. More waiting for results.

Now there is concern about stomach rupture with the start of the chemo. They waffle between admitting her for the first treatment or allowing her home with constant supervision.

Chemo has been pushed back to the 31st. Another day of wondering how I'm going to be there for her and be with the kids.

And it hasn't even really begun. Hoping this thread I'm hanging on to will hold.

Spinning Plates Here

noreply@blogger.com (Stacie) — Sat, 15 Oct 2016 04:58:00 +0000

Two doctors later, there is more information and a plan. The GI doctor was first. Meds for appetite stimulation and to coat her stomach were prescribed. Another endoscopy is scheduled for Monday to check the healing of the ulcers. There is the pesky matter of a gall bladder filled with stones, which is likely the main reason for her pain...but they want to wait to address it after the chemo has finished.

The oncologist was next. A PET scan, lung function test, echo of heart, meeting with the oncology pharmacist, and placement of a port for chemo access. All to gear up for chemo to start on the 26th. A week and a half away.

6 cycles of chemo. Each cycle consists of two course over 4 weeks. 6 months of treatment if all goes as planned.

It's all so very overwhelming.

The oncologist had no answers as to why they had so much trouble finding the cancer. He said he trusts the Stanford results.

She is being very stoic about everything. "It is what it is," is what she tells me.

I am freaking out (although I don't think she knows that), I am not sure how I am going to do all that needs done. How I can get her to her appointments. How I can do what I have to do at work. At home.

What do I tell the boys? Their birthday is the 27th. I can't associate their birthday with news like this, so I want to make sure there is time between their day and when I do tell them. I don't even know what to say.

I feel a lot like the person spinning plates with all of them wobbling, ready to fall.

noreply@blogger.com (Stacie) — Tue, 04 Oct 2016 04:18:00 +0000

The sample was sent to LA and then on to Stanford. Results came today.

Ho.dgk.ins Lym.ph.oma. No information was provided outside of that. She has an appointment with an oncologist on the 12th, which is I suppose when more answers will come.

I can't even begin to dissect the emotions I'm feeling, particularly the whole WTF??? about being told specifically that it wasn't cancer, only some sort of scar tissue, to now being told that it is. I also have to admit that I am not confident about the prospect of her getting treatment from a group that so royally fucked up at every turn. She is angry, but her frustration seems so quiet. She is not me, and her temperament is most definitely different than mine. While I tend to fight first and ask questions later, she is one to sit and reflect. So, while I can urge and try to voice my opinion, ultimately I have to take my place as the passenger, sitting back and letting her take the lead on how this goes. My job is to support her. (Which, in a lot of ways, is so much scarier than taking over control myself.)

I have done a very limited amount of research this evening. Survival and cure rates seem to be very high with this type. I couldn't bring myself to go much deeper than that because I honestly can't wrap my mind around all of this just yet. I need to sit with this for a bit.

How does a person go from being completely healthy to cancer? From a heart scan due to high blood pressure/pulse to lesions? From TWO biopsies with negative results to Ho.dgk.ins Lym.ph.oma? I don't know.

If you're the type who prays, would you say a few extra prayers for my mama? Because she just has to be okay.