Numb

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

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

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

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.

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

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

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.