Wednesday, June 3, 2020

10 until 10

Ten years.  TEN YEARS, GUYS!!!

This guy, he's going to be ten years old on June 13th, TEN DAYS!!!!

Before he was born, he only had a 50% chance of surviving until birth.  What??  Isn't that when we start counting lifespan?  And then when he was born, I was told he had about a 5% chance of reaching his first birthday.

I lived on the edge all that year, wondering how much longer we had.  His first birthday party had more people than at a lot of wedding receptions.  I was so overwhelmed and grateful for that milestone, even though he slept through pretty much the whole evening.

Having reached that milestone, I learned that he had a 60% chance of turning ten.  If someone had told me before that one of my kids only had a 60% chance of reaching ten years old, I would have been devastated.  Instead, I was over the moon.

From 5% to 60% was such a huge leap.  I really couldn't fathom that much time.  Now, I can't imagine life without him.  (Not that I could before either though.)

Anyway, here we are, ten days from his tenth birthday.  And I will forever be leaving behind the days of kids in single digits.  I remember being so excited myself when I reached the ripe old age of ten, double digits and all that.

I had hoped to have a fun birthday party for him this year.  In fact, a friend had offered to throw one for him at a local park with ponies and all sorts of fun.  Obviously, that's off.

We would love for anyone to send a video (he loves those!) or greeting or whatever and we'll read or watch them with him on his birthday.  Because of the pandemic, it will be immediate family only here, and that's assuming that they're all well and the weather is good, because it will be backyard only.

Please, please know we're so grateful for all your love and concern and prayers through the last ten and a half years.  He's not only our miracle, he's everyone's.

Compatible with Joy!

"The first fact about the celebration of birthdays is that it is a good way of affirming defiantly, and even flamboyantly, 
that it is a good thing to be alive." 
~G.K. Chesterton

Wednesday, May 13, 2020

This is Rough -- Week Whatever

Things are rough here, at least in the space between my ears.

I do okay as long as I only think about today.  If I try to think about tomorrow, or next month, or next school year, it's really, really hard.

Economies are starting to open up.  That's a good thing.  I really do believe that.  And governments are trying to put into place ways to keep the vulnerable safe until a vaccine and/or a good treatment can be found.  They're saying that anyone at high risk and anyone caring for them should stay isolated.  Except I think that most consider the elderly to be the only vulnerable population.  There are all sorts of ways to avoid going out if you don't have to work, if you're retired, if you don't have children at home.  So far, I'm not seeing a way to do it otherwise.

There are a lot of high risk people who are not retired.  Many are children whose parents are not independently wealthy, who can't afford to "retire" even for a couple years.  What do we do?

Andrew and Michael need to go back to school, if it's being held.  They NEED  that interaction.  They can't stay locked up for two years.  It wasn't super hard when all their friends were isolating, but now that they're starting to get together again, they want out too.  I need to work.  But it's public school.  A petri dish.  What do we do?  Calling a number for groceries, meds, etc to be dropped off for the next two years isn't feasible.

I think of my high school years, of the time over the past few in the schools and of the crowded hallways, the packed classrooms.  Guys, that's where the memories are!  That's where the good (okay, and not so good) things happen.  I don't remember the lessons from classes much at all.  I remember the interactions.  And as I look at what is being said, and what is not, I don't know that this will happen for the kids next year.  I hear about only a portion of students being on campus at any one time.  That sounds lonely, and scary.  Yes, I know, it's life.  And they'll get over it.  But I ache for my kids, my boys and the kids I've taught.

There is just no good and easy answer to any of this.

I've worked hard to transition Aaron away from the blended diet that he does so well with to a formula, that isn't nearly as good for him.  But if he ends up in the hospital, there's not a good way to get his food to him, and they won't provide a blended diet.  Even more, if I get sick and can't make it for him, he needs to still be fed.  If anyone in our home gets this, all our nursing will stop.  So we'll be dealing with the virus and no help from the outside.  I keep having visions of it being like when Laura Ingalls and her family got malaria, and everyone was so sick and there was no help until someone found them.

Yesterday morning, early, I got a knock on my door.  Andrew was there and had just thrown up.  He'd made it to the bathroom, but it was his turn to get up with the puppy, so what should he do in the morning?  I told him to wake Michael when Simba started whining and tell him what happened.  Okay, fine.  Before this hit, I would have been asleep again before he even got back upstairs.  Instead, I lay awake for over two hours, wondering if Covid had found us, and how.  Was this the start of it?  Where was it going?

He threw up once, that's all.  No fever, no diarrhea, no muscle aches, nothing.  And yet, I still made him stay in his room all day long, by himself, meals and everything.  Normally, if it had been 12 hours and nothing (or sometimes sooner!) I let the kid out.  But no way.  He didn't get to come out until this morning.  And I worried the whole time.

I guess there's a reason that much is written about certain parts of history and how people endure, or even thrive during those times.  How they make people stronger, better, or sometimes bitter.

These are unprecedented times.  We keep looking back to the 1918 pandemic and all that happened then.  I wish I had more writings from people's lives.  My great-grandmother lost both her parents within two days of each other.  She and her brother were placed in an orphanage.  Yet, when I hear stories of all she went through during her life, when I look back on my own memories of her, she was a rock!  She worked so hard, endured so much, and yet was funny and gentle and lived a long life.

So right now, I'll try to keep my focus on the here and now.  I try not to think of what it would have been like if my own high school years had been interrupted like this.  I try not to envision what might be coming.  I'll continue to work with my boys here at home, keep training this puppy of ours, and find time to work on my own schoolwork.

I've started taking a video or two, just a few seconds long, each day to put together once we're done (or once I decide it's been long enough anyway).  It makes me look at things differently.  What do I want to remember from this time?  What am I going to forget about?  What am I taking for granted?

There is a future coming.  I don't know what it will hold or what it will look like, but one thing is certain, it will come.

All the flowers of all the tomorrows are in the seed of today.
Croft M. Pentz

Sunday, April 26, 2020

An Eventful Time: Week 6

Looks like I'm writing about every other week.  At least I'm still writing, right? 

Anyway, it has been a bit of a crazy week here.  The week before was pretty normal, whatever that is anyway. 

We had Easter Day on our own, which was a little hard for me.  I miss my kids, sooooo much!  Sunday dinners are much easier to prepare and clean up after, but I miss the banter and laughter, and the hugs.  I very much look forward to the time we can be together again. 

But this week?  Well.... 

There are people doing different things during quarantine, things that otherwise wouldn't happen.  Us, too, apparently.

The boys, Andrew especially, have been begging for a dog for years.  I keep saying no.  There's not time, there's not a fence, there's not, well, whatever.  Too busy.  Except now we're not.  (I guess.)  So we've been casually looking, and then it wasn't quite so casual.  Andrew really got into it.  He'd spend hours each day looking at classifieds and on rescue pages.  We even had a beautiful German shepherd come out for a "visit."  He was a sweet dog, but not a good fit for us.  And then he found him. 

Meet Simba!  Initially his name was "Lucky" but by the second day he'd warmed up enough that he was pouncing on things, and crouching before!  He even saunters and runs and plays like Simba. 

The boys are loving him, but also learning about sharp puppy teeth and getting up in the middle of the night to take care of him.  It's a learning experience. 

And Jonathan graduated this week.  Finals over, he and Avanlee came out for a porch visit and it was good to see them, but hard not to hug.  Right now, they still plan to move to Saudi Arabia so he can pursue a Masters/PhD in mechanical engineering in August.  But no ceremony, no party, just a hike to the Y on the mountain for the two of them.  I'm so glad they have each other.

Aaron continues to do really well.  His school nurses come work with him each school day for a few hours.  He goes on walks, does physical therapy and is working on counting and understanding coins, among other things. 

Long overdue pictures put up.
I've gotten a start on my own course work, and the Andrew and Michael are moving forward with their own lessons.  We got some sad news as two favorite teachers at the middle school won't be back next year.  We already knew we were losing an amazing principal.  This whole lack of closure is so hard!  We didn't know the lasts were going to be last.  I wasn't even at the schools the last couple days because of the ballroom competition down at BYU. 

I don't know where this whole Covid thing is going to go.  No one does.  Right now, people seem to be saying there's a whole lot of over reaction, blowing things out of proportion.  The medical personnel don't seem to agree.  I just know I don't want to take a chance with Aaron's life, or anyone else's.  I'm more than a little worried that we'll follow the 1918 flu pandemic where the initial wave, the one in the spring, really wasn't that bad, but then when things were relaxed, it all blew up in the fall.  I've gone over my boys' schedules for next year wondering which classes are going to be very difficult to do online.  You know, choir, band, that kind of thing really needs a class. 

But at the same time, the slower pace is also kinda nice.  I like waking up about 7 and relaxing in bed for a little while before getting up and going.  There would be no chance for a dog with all the school and soccer and scouts.  Everyone is at dinner each night.  We've watched more movies in the last six weeks than probably the last six years.  Everyone knows when bedtime is, and it's late enough that there aren't (many) arguments.  Aaron spends a lot more time out and about with us because he's not so tired after being at school all day, and neither are we.

It's just a new, strange way of life right now.  But we're all still alive, and enjoying life, while also missing the old stuff.

"When we are no longer able to change a situation, 
we are challenged to change ourselves." 
~Viktor Frankl

Saturday, April 11, 2020

Week 4: Hitting our Stride?

I know, I know, I missed week three.  It happened, trust me. 

We're hanging in there.  Funny, in a lot of ways, we've been prepping for this since Aaron's birth, but preparation and execution aren't always the same thing. 

Last week (week three), we got into some routines.  School work was being done (mostly) and chores were not.  Sound about right?  I signed up for my online class and started looking at things.  Aaron continued working on his school with his nurse. 

This week was spring break, and we took it!  No school for the boys, a bit more "projects" that have been languishing, and lots more movie time.  I finally got my closet (where Aaron's meds are kept) organized and cleaned out.  Now I actually know what we've got.  Amazing, huh?  And I started my class, got assignments and started turning them in.  We'll see if I've got what it takes to go back to school after almost 30 years. 

Aaron and his brothers even got hair cuts.  Yeah, it was past time.  Pretty sure I did them last during winter break.  But hey, it happened this week!

Aaron is doing pretty well.   Allergies are kicking both of us, but we do what we can.  I have started trying to put into place what needs to happen if I get sick.  From what I'm hearing, many struggle just to walk a few steps, or even sit up.  I can't be out of commission like that.  Not that I'm planning on getting this, but then neither was anyone else.  I'm trying to transition him away from his blended diet.  If I get sick, or if he ends up in the hospital for any reason, it would be incredibly difficult to maintain that.  And I don't want to have to make changes when things are already stressed. 

It's quiet around here, especially on Sundays.  I miss my big kids.  They don't come around because we're trying to keep everyone safe.  But Sunday dinners with five of us instead of 14 or 15 is a bit of a change.  I guess it's six, because Aaron is here even if he's not actually eating with us.  He does now have room to be at the table, and thinks it's really funny to put his feet up on it.  His brothers laugh at him while telling him that's not nice.  I don't think he's going to learn anytime soon...

I made masks for everyone this week.  They're cotton with a double layer of non-woven interfacing for filter.  The good news is, they're also easily washable, and each one is different, so it's easy to tell them apart.  I never thought I would put medical masks in Easter baskets.  But I also never dreamed that I'd be dropping off Easter boxes to my kids who don't live here.  Later today, we're going to go out for a drive and do just that.  We packaged them this morning and then we'll call each one as we put their box on their porch and wave at them.  Oh, boy.  This one is kinda hard. 

My cute granddaughter is six months old!  I'm so glad she was born six months ago, and not during this thing.  We got her to wear a mask by sewing a binky into it.  She still wasn't quite sold, but it was much better than the looks she gave me when I tried to see if I was making it the right size.  It was like, "Gramma, you're trying to smother me??!!??"  Shocked, worried, a little scared...  Yeah, it was kinda funny. 

I'll be honest, I'm kinda struggling.  It's hard being home all the time, never going anywhere.  I love my family, and there aren't even that many of us here right now, but to be with the same people, day in and day out, not see others...  One of the reasons I love subbing is that I get to interact  with soooo many people!  Here, it's me, William, the kids, and whatever nurse is here (although usually they're here while I'm sleeping).  Sometimes Linnaea comes up so her mom can work.  But that's it.  And it leaves a lot of time for thoughts and feelings and, well, whatever.  But also no real "alone" time, which I also miss.  I'm learning more about who I really am, and some of it is pretty good, and some I'm not that thrilled with.  I suspect that's the way it is for most of us. 

So this Easter, like this spring, is kinda different.  I'm grateful for the opportunity we had to fast yesterday in a world-wide fast.  I'm so glad for the chance we had to watch General Conference last weekend and the messages that were imparted, messages of hope and courage and strength.  I know where my strength comes from, and when I am still and listen, I feel the peace my Savior brings. 

I have no idea what the future is bringing.  No one does.  But with my Savior's help, I know I can find the strength and peace to make the most of it. 

I know not what the future holds, 
but I know who holds the future.  
~Author Unknown

Sunday, March 29, 2020

Week Two: Settling In

We're getting there with this whole "social distancing" thing, hitting our stride (maybe, knock on wood, fast!).

Utah schools did an online "school spirit" week, and we mostly participated.  Honestly, we probably did better this week than in the weeks the kids are actually in school.  There was a crazy sock day, a whatcha reading day, pajama day (how easy was that!), email your favorite teacher day, and school colors.  In one form or another, we managed all but the last one.  Oh, well...

Crazy sock day
Keeping in line with what the kids are doing, I started my own online class this week.  I've got lofty aspirations to enter a Masters of Social Work program in the fall of 2021 and have some prerequisite courses to complete first.  I managed to get a scholarship for one through BYU Independent Study, so here I go!  My goal is to work in medical social work, seeing as how that's been such an integral part of my life for the past almost ten years.  Wish me luck!  It's been a very long time since I was in the classroom and everything has changed!

Whatcha reading?
Aaron is doing well.  We're hanging in there.  I find myself checking the news multiple times a day.  I've decided I'm grateful that Utah only updates once a day.  I know when it will be and check just after that.

On the plus side, I get to spend more time with my cute granddaughter.  She is so much fun!  And we've gotten more housework done, including moving furniture around to make this better for everyone. (Although my boys may not think that's so much of a plus!) 

I worry so much that we're not doing enough.  I know (believe me, I know) that the flu kills so many more, but this is different, this is new.  And it's quickly overwhelming hospitals and equipment supplies.  The flu doesn't shut down elective medical procedures or cancel office visits, both of which have been done.  And by the way, "elective" means it's not an emergency, not that it's just cosmetic.  A hip replacement, a g-tube, ankle surgery, tonsillectomy:  those are considered "elective."  If it can be put off without risk of death, it's elective.  And they're not happening right now.

Utah hasn't seen a lot, yet.  I'm praying we don't.  Andrew is supposed to be in New York City right now.  Two and a half weeks ago, over 80% of the parents voted to continue with the trip along with one to California.  With Aaron's challenges, we pulled Andrew out.  Obviously, they've since been cancelled and no one has gone.

We've tightened things down around here some more.  Our adult kids were coming over for Sunday dinner along with William's mom.  That's not happening anymore, and I miss them terribly, and it's only been two weeks.  We've tightened up our nursing.  There was one nurse who was also a student, and when cases started appearing, I asked the agency to not send her until two weeks after her last hospital clinical, but now I've asked that she not come back until after this passes.  The four I've got coming are all very careful about social distancing, and so are their families.  We try to do the same.

President Russell M. Nelson called for a worldwide day of fasting and prayer today.  As I ponder upon what that means, I'm reminded that we've seen miracles come about due to faith.  We've seen them in our own lives, and also in scripture and the lives of our ancestors.  I know my nightly prayers are fervent pleas for strength and courage and comfort for the frontline workers in this pandemic, for those who are fighting the virus themselves and for their families, for the doctors and scientists who are working tirelessly to find treatment and a vaccine.  I pray for strength, for health, for us and for those around us, both physically and emotionally.  And I pray for peace.

Faith is not without worry or care, 
but faith is fear that has said a prayer. 
~Author unknown

Saturday, March 21, 2020

Lockdown Week 1, Take 2, Switching the Field

 I just spent the last hour plus writing a lot of things out.  This week has been different, challenging, sometimes HARD.  But I don't think it was any harder for us than for many others.  In fact, due to the need to keep Aaron safe the last almost ten years, it may have been easier.

But as I look through my notes that I've jotted down this week, one thing stands out.  This too will pass.  This will be temporary.  It will change the focus of many lives. Sadly, it will take many lives.  But we need to look for the good, too.

Last Sunday, as part of our worship service, we watched "Music and the Spoken Word" from the week before.  As part of the service, the speaker spoke of  the "Winged Victory of Samothrace".  The statue is broken, missing her head, her arms.  He referenced the beauty of the lines, the grace, and the unknown origin of the statue.  And then he said that it reminds us that "Victory is beautiful, but never flawless."

That spoke to my soul.  Life doesn't have to be perfect.  I don't have to get everything right.  I just have to keep trying.  I feel so overwhelmed by all the roles that I have: nurse, teacher, cook, referee (yeah, three teenage boys will make you one very quickly!).

President Nelson's message of hope during this time was also helpful.  We can find joy in the journey, which prompted me to think about what was happening if I wasn't finding the joy.  What am I looking at?  In soccer, when an offensive player is being overwhelmed with defense, many times they call for them to "switch the field."  If the defense is focusing on one or two players, that means someone else is open.  When I'm overwhelmed, discouraged, I need to switch the field.

When I focus on the news, the inability to get out among people, all of the "what ifs," it's hard, it's crazy hard!  I start to worry, am I doing enough?  Am I good enough?  Can my kids learn what they need to at home?  What about AP tests?  Will he be ready?  What about soccer?  Are we taking enough precautions to protect Aaron? Can I get all his meds?  What about food?  Can we make it through this lockdown without hating each other by the end? What about getting enough exercise?  Why me?  Why us?  Why now?  And why on earth an earthquake????

But when I switch the field, everything changes.  Spring drives me crazy. 
There's never enough time with soccer and band and choir and scouts and youth group and prep for end of year tests and AP exams.  We rarely even eat dinner together.  I usually leave it out on the counter until everyone cycles through because schedules are so difficult.  It's cold and rainy, but sports and carpool and everything goes on.  Kids are "done" with school, but still not done, so it's a struggle to keep not only my kids focused at home, but my students at school.

Instead, life is much slower right now.  I make breakfast each morning.  That hasn't happened for years.  Michael watches a quick funny video from his principal.  We start the day with a short seminary lesson via Facebook Live (thestevescott, I highly recommend it!) and then move to school work.  The boys are (fairly) focused and get their work done during the morning.  We all have lunch together and then "story time."  I'm reading The Orphan Keeper out loud to them.  It's a good book, but one I don't think they'd ever pick up on their own.

When things get squirrely, when frustrations rise, I send them outside to play football in the yard, or upstairs to use the pop-a-shot.  There's free time.  Yeah, quite a bit of screen time.  We do a scripture study and write (briefly) in the evening after dinner and then watch a movie together.  Last night was Lion King and there was discussion on whether singing was allowed or not.  I pulled the "mom card" and announced that we could, as long as it wasn't overwhelming.  😁

We've adjusted nursing hours so that Aaron's school nurse can come in and work with him each morning for a little bit, so he's still learning as well.  I'm hoping to go back to school for a Masters in Social Work the fall of 2021, and I need to take three classes prior to that to be admitted into the program, so I'll be doing online work along with the kids.

We now have time to cook together.  Michael and I did a quick inventory of the food we have in cold storage, and we're in good shape there.  Wednesday morning started out with an earthquake.  Utah doesn't usually get those.  We were definitely shaken up, but so many people called or texted to check in on us.  Not only neighbors, but also a nurse manager and his equipment company.

So while it's taking time to get adjusted to our "new normal," there are good things too.  We've done the new normal thing before.  And this won't last forever.  It may last a long time, but it will come to an end.  I don't know what will happen in the future, but I know if I can stay close to God and remember that sometimes I need to switch the field, we'll make it through.

This is not the first time the earth has gone through a pandemic; it won't be the last.  I'll do whatever I can to protect my family and my community, but at some point, I have to leave the end result up to Someone else.  I don't have that kind of influence or power anyway.  I'll try to nourish and care for my own soul so that I can be open to the needs around me.  And as we prune out the excess dead wood, there will be more energy to put into areas that are more important.

And if you're wondering, the previous post was in definite need of switching the field.  There wasn't much focus on the good there at all.  Be grateful it was just a draft.

Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. 
~Hubert Humphrey

Saturday, March 14, 2020

Where I Am, Where We Are With Everything (Coronavirus)

It's been a _____ couple of weeks around here.  Crazy, mind boggling, interesting, confusing, scary, busy, whatever.  You fill in the blank.  I'm not sure where this is going.  Another "straighten out the brain tangles" post.  And it's long, really long.  You've been warned.

Aaron has done pretty well since coming home.  We've seen a few seizures here and there, but overall, not too bad. The new heart med is helping him not work so hard from that standpoint, and also can cause diarrhea, which is not good, except that's the opposite of what he's struggled with the last several months.  Upshot of that is he is not currently on any of the GI meds (2 doses of 2 different meds per day) that he was on.  Take away giving four med doses per day?  Yes, please.

But then there's this whole, well, you know.  It's all anyone is talking about today, and yesterday, and last week, and...

I'm struggling.  Honestly.  But it's also been interesting how things have developed here at home and out in our community.  Two weeks ago it was making enough noise that I was really starting to notice.  Yes, I know it was beyond awful for many before that, but I was dealing with seizures, and it wasn't here.  My brain literally can only deal with so much at one time, and I was already overwhelmed.

The week we came home from the hospital, my husband asked me on Thursday (March 5) what I thought of grounding Aaron, especially from church.  I honestly wasn't sure.  He really likes going, but the facts are, there are a lot of people who don't think much of going to church sick.  It's wrong, it's totally irresponsible, but it's true.  His school, on the other hand, is beyond hypervigilant about germs. It's probably the safest place he could be.  But like I said, I wasn't sure it was a good idea.

Friday morning the news began making noises about Covid 19 already being here, just undiagnosed. I started a conversation with one of Aaron's doctors, and she strongly recommended he be grounded.  So William and I put into place a way to make that happen.  That afternoon, the governor announced a state of emergency for Utah.  That evening, the first diagnosis appeared.

Can I tell you about Sunday?  I heard every single cough and sneeze and sniffle in the congregation, and cringed each time and Aaron wasn't even there.  Yes, I know some may have been allergies, or a tickle in the throat.  But reality is, I haven't heard them since his first year of life.  Yes, they've been there.  I haven't noticed.  But I did this time. My body, my brain, has shifted back into that mindset.  That exhausting, hyperaware, PTSD mindset of constant vigilance.

So that was the first step.

Then this week.  This is my week. It's a huge ballroom competition, National Dancesport, at BYU.  For the past 11 years, I've pretty much spent Wednesday through Saturday of this week at the Marriott Center.  We had a lot of discussion about whether or not I should go.  But I was also taking care of my cute granddaughter there.  We talked about social distancing.  I planned to only be there for the days mine were dancing, Wednesday evening, all day Thursday, and Friday morning.

On my way there Wednesday, William called me.  Church leaders had called off Stake conferences, determined that missionaries would be trained at home, and that General Conference would not have people in the congregation.  He wanted to talk about locking down our house, and having all of us stay home from church so as not to bring anything home to Aaron.  I was totally on board with the first.  It's not like we have that many people come over anyway, but to restrict it to just nurses working and our family seemed more than reasonable.  I was really hesitant about church though.  He reached out to our bishop (leader of our local congregation) about this as well.

Well, then things went down that evening.  That was the night that the Jazz game was called off right before tip-off.  That was the night the NBA suspended their season.  That was the night many colleges officially closed classes.

I went home and told William I was totally on board.  The next day the governor held another press conference, asking people not to gather in groups of more than 100 starting next Monday.  He stated that this did not affect public schools, but pretty much everything else.  That afternoon, church officials suspended group meetings immediately.  Once again, my husband was ahead of the curve, and I had been dragging my feet.  But still, Dancesport continued.  So I was there.

Guys, this is a big deal for a lot of people.  It's where they declare a national champion and send them to the International Championship.  Yeah, I know, so is the NCAA tournament, so is the NBA, and all the other things that were also being cancelled.  But for me, for my kids, this was personal, this was where the rubber met the road.

BYU even suspended classes.  And still the dance went on.  Until it didn't.  Mid-afternoon, the director of the ballroom program came to the podium and announced that at the close of the evening, it would be over.  Gasps and tears were audible through the arena.  Deborah would finish her competitions, but Jonny and Avanlee would not.  One that they stood the best chance in was on Friday morning.  It was the last time they would dance in a competition before leaving for Saudi Arabia next fall.  Teams and couples from around the country who had prepped all year, would not take the floor.  It was hard, and heartbreaking.

And our schools?  Well, Friday was a half day because of end of term.  Just was, and was on the calendar that way a year ago.  They announced that Monday and Tuesday would also be half days so the teachers could learn and prepare "in case" schools were closed.  Yeah.  In case.  Friday afternoon, the governor closed schools for two weeks.

This one scares me.  It scares me not just for Aaron, but for those around us.  Over the past several weeks, I've had lots of students wondering what the big deal is.  I mean, it acts like something between a bad cold and the flu.  And for most of us, that's what it is.  But not for everyone, even every typical person.

So we'd do some math.  Say you've got 2400 students in the high school and a quarter of them have it at the same time. That's about 600 sick students. (Not that they got it at the same time, but are currently sick at the same time.)  Current numbers say that kids do much better than adults, but still, 1-2% will need hospitalization to make it through.  So maybe 6-10 need a hospital.  That's not bad.  That's totally doable.  Until you realize that this is one high school.  Our district has 12. 

There are 78,000 students served by our district alone.  With those numbers, if a quarter get sick, that's 19,500 sick kids, and I don't think that's too out there.  We're confined in one county, mostly the northern part and interact through sports and other activities on a regular (but not now) basis.  If 1% need care, that's 195 kids.  From one district.  In a state with 41 districts.  Where the local children's hospital serves a five-state area, and has 266 beds, including long-term patients like NICU and cancer and organ transplant children.

And kids do better than adults.

See the problem???

Frankly, I've had to unfollow a lot of people lately.  Usually when things are  posted that I find irritating, or even ridiculous, I roll my eyes if I do anything and scroll on.  But because my anxiety has been high, for my own mental health, I find I can't handle the misinformation or the casual dismissal of what will happen if things aren't better controlled, if we can't flatten that curve.

Aaron wouldn't even be admitted, for anything, if things got out of control.  If our healthcare gets overwhelmed, the fragile ones have to be dismissed so that others can be saved.  The elderly, the ones with underlying conditions, the ones less likely to live.  If things get big, even typically healthy people will die that would otherwise be able to get care and live.  It is beyond critical that we slow the growth, flatten the curve.  I can't stand the thought of this turning into what's happening in Italy.

So that's where my brain is now.  For my own well being, I'm cutting back on how often I check in on the news.  We're putting together plans for church at home and trying to figure out school here as well.  Aaron's school nurse will still be coming, at least for a little while, because she knows much more than I do about what and how he's learning.

Just over 30 years ago, Hurricane Gloria hit the eastern seaboard.  I was a junior in high school, same age as one of my boys.  The governor cancelled school across the state and yes, it was pretty rough for a lot.  I remember waves crashing through casino windows down in Atlantic City.  There were a few deaths, but nothing like the state had prepared for.  It turned back out to sea instead of hitting us full force.  For my family, it was really bad wind and rain, and I remember being irritated by my mom who wouldn't let me go hang out with friends.

I very much hope and pray that this will be a "Hurricane Gloria" for us, where it disrupts life and causes inconvenience, but we all get to come back together.  Can't even begin to tell you how much I pray for this.

Hope is some extraordinary spiritual grace that 
God gives us to control our fears, 
not to oust them. 
~Vincent McNabb

Sunday, March 1, 2020

Our Week in a Nutshell (Mostly)

 Our life is crazy.  So is yours, I’m sure.  It’s just different kinds of crazy, but sometimes, it goes a bit (a lot?) over the top!

I think it started on Tuesday, although possibly Sunday.  But Tuesday was the defining moment.  Andrew had an ensamble performance for a solo/ensamble assignment and Aaron and I were going over to listen.  Except the Aaron we put in the wheelchair morphed into something else: a stiff, non-responsive, somewhat discolored, appearing to not be breathing creature.  What??  I checked trach placement, we made sure oxygen was actually on, and then it was over.  He had seized.  Hadn’t seen one of those for a long time, but apparently, they were back.

Over at the school, he had a few more, and then went for the whole “breathing is optional” scenario, so I bagged him.  Hey, unfortuantely, that’s part of our routine craziness. We just do it.  And then because he’d had about five or six seizures, when we got home, I gave him his rescue med.

Tuesday night was a bit restless in sleeping, but he slept.  Wednesday morning, his regular seizure med got overlooked.  He had a seizure during PT at school, and then that afternoon things really ramped up.  Five in about an hour, gave rescue med, they continued.  Five more and another dose of rescue med, and still they kept going. By then we’d gotten him home and realized that his Keppra had been missed, gave it, consulted with neurology, and came up with a game plan.  There were a few more, and then he fell asleep, HARD!

Slept soundly from about 5:00 pm until about 10:30 pm, restless until about 5 am, and then slept pretty much ALL DAY Thursday, waking for about an hour, (another seizure!) and then asleep until Friday mid-morning.  

And then?  You guessed it, more seizures.  After another cluster, we gave his rescue med yet again (four times in just under four days).  At that point, I was done.  We had to do something, so we came up to Primary’s.

Here’s the thing: illness causes seizures, but he’s not sick.  Stress can cause them, but he’s not stressed that we can see.  We had seriously No Idea!  We decided to stay and watch him for a couple days.  And neurology said to increase his regular seizure med.

Saturday went okay.  There were a couple times that we thought he might have had one.  But Aaron’s seizures are really pretty short.  If you’re not watching, you miss them.  Twice he had been playing and then just zonked out, super fast.  We think he may have had one and then we caught the postictal phase.  Who knows?

But, in addtion, his oxygen needs were going up, and up, and while it’s not been that unusual for us to deal with this, the doctor wasn’t real impressed.  She put in a call to cardiology.  They ordered labs.  The x-ray shows his heart is a bit larger for size than his last views.  And yeah, his heart is working harder again.  Sigh...

They’re putting him on a heart med we used back when he was tiny and in heart failure.  It will help relax things a bit and let his heart work more effectively.  Except, it can also mess a bit with some electrolytes, so we had to check them first.

Another lab draw, another poke.  And some different news. His electrolytes have always been really good.  And they weren’t really bad this time either.  But some were low.  Shouldn’t have been low enough to cause seizures, but maybe???

So they gave him potassium and magnesium, and maybe calcium.  (I can’t remember right now.). And then the heart med.  And ya know what?  He’s looking pretty darn good right now!

My night owl, my “don’t you dare wake me before noon” kid has been up and playing pretty much all morning.  We don’t see any seizures.  He’s still on a (fairly) managable amount of oxygen.  And we’re hoping to get our walking orders soon.

And that, in a very large nutshell, is how things are going right now.

Today is March 1st, the first day of Trisomy Awareness Month.  My goal is to post a picture of him  each day to instagram and Facebook.  Today I’m hoping it’s one of us going home.

If we weren't all crazy, we'd just go insane.
Jimmy Buffett

Sunday, February 16, 2020

Life Out of Order

There's an order to this thing we call "life."  It's the way it's "supposed" to go. 

As kids, we watch our great-grandparents, or sometimes grandparents grow older, weaker, needing more help.  Our parents are strong, in charge, know everything (okay, until we're teens anyway). 

I remember coming home from school one day and finding my mom curled up in her rocking chair, crying.  She'd gotten a phone call saying that her grandma, my great-grandma, had died that day.  I knew her, but not that well, and felt a little sad and kinda awkward.

A couple years later, as I got up to go to school, my mom came and wrapped her arms around me to tell me that my grandma, my dad's mom, had just passed away.  That was harder.  It felt wrong, the day felt colorless and strange because time should have stopped, but no one else at school seemed to even realize that the world had changed. 

The years go on.  My other grandparents also passed, although my children knew two of them.  My mother-in-law no longer drives.  When I talk to Mom, I hear Nana's voice.  My father's hands have been replaced by my grandpa's.  It's strange to see them on my father, but that's the way things go.

My children are growing and grown.  I have an adorable granddaughter.  Now I'm the one getting older, and worrying about my parents and my mother-in-law.  I'm the grandma.  And this is how things are supposed to be.

Adult children bury their grandparents and parents, and eras end, and it hurts, but life goes on.  Babies are born.  Old people die.  The Circle of Life.

But sometimes it's not that way.  Not always.  Not nearly enough.  And I'm still trying to figure out how to process it.  I'm at the point where I'm about to throw in the towel and cry that it's just not fair.  It never will be.  And there's nothing I can do about it.

We special needs moms are scary.  Honestly.  Other moms are afraid of us. It's almost like our life is contagious.  Our children die.  They don't grow up.  And it feels so, so wrong.  And in the fierce way moms have of protecting their children, other moms don't want to know this pain.  They don't want it to be real. 

We don't either.

I've lost count of how many children have died, just since 2020 began.  But two in particular have devastated me.  Zane was one of the few boys with full T18 older than Aaron in the whole world!  His mom has been a mentor to me from the beginning.  He went into the hospital just after the New Year and was gone so fast. 

This week, sweet Emarie got sick.  She's 12 (now forever 12) and I think we've known her family for almost ten years.  She didn't have T18, but she was part of the Chromosome 18 family.  She coded on Wednesday, and hung on until today.  I just can't seem to wrap my head around this.  She was so happy, doing so well.  A wonderful big sister, and now she's gone. 

Her dad took family pictures for us before Matthew's mission.  Her mom and I sat together at so many school events before they moved farther south.  I love her smile, her younger siblings.  And I have no idea how to process this.  I never figured out how to process Zane's passing. 

This seems so wrong.  So out of order.  My mom used to say she wanted all of us at her funeral, because that meant she wouldn't have attended any of ours.  I said that to my kids, too.  Until ten years ago. 

Most of my posts manage to end upbeat.  This one won't.  I'm sorry.  But I just can not seem to find anything positive today about a child dying.  It just feels so wrong.  So out of order.

“For no soul can ever be replaced, and death claims a beauty and a magnificence that will always be missed.”
― Jocelyn Soriano

Monday, January 20, 2020

I Hope...

I'm not very good lately at updating.  Sorry.  I tend to keep a lot of these thoughts in my head, or I think I've written, but nope.  Still in my head.

I finally managed to get around to communicating with Aaron's neurologist regarding our weird two weeks the beginning of November.  Actually, it was more of a bury my head in the sand than a too busy kind of thing.

We had that weird 48 hour stay the beginning of November where we thought things might be surgical, but then looked like a viral tummy bug.  But he was just So. Tired!  All. The. Time!!  Trach/vent clinic came up mid-November so I mentioned it there.  He was still really tired. We're talking over a two week period he was sleeping more than twice as much as normal and kinda tired acting even when he was awake.  We (doctors and I) decided to look into some labs.  Were his thyroid meds working well?  That can certainly cause it.  What about vitamin D levels?  They all came back good.

In the back of my brain I'd been wondering about seizures.  No reason.  He wasn't acting that odd.  It was just this darn lethargy.  So once we had the labs back, I decided to give him a dose of Ativan (seizure rescue med) one evening.  Lo and behold, it worked.  He had kinda a strange night where he really didn't sleep, was dazed but would interact if you came into his line of vision.  And the next morning?

Well, apparently we found the reset button.  He was back to his normal, active, playing, goofy self.  I liked that I had my kid back.  I didn't like the implications so much.

In the meantime, we were struggling with his oxygen.  Cardiology had warned me long ago that as his pulmonary hypertension progressed, we'd get to the point where we would have to tolerate lower oxygen saturations.  And we have been.  At one point (several years ago) his sat monitor alarmed if he went below 92, then it was reset to 90.  96 was our ideal, the sweet spot.  I can't even remember when we reset it to 85.  It's been some time.

But since mid-fall, 85 was pretty good.  If he was asleep, we might see an 88.  I can't remember the last time we were in the 90's.  This kind of thing pulls at you.  It weighs you down.  We were having to set the alarm for 80-82 on a regular basis.  It's hard.

So with him feeling better and not sleeping so much, work, worry about sats and such, I just really couldn't seem to find the emotional time and energy to connect with neurology about possible sub-clinical seizures.  Especially since I felt like I might be tilting at windmills.
Getting ready for the VEEG

When I finally did, I got an email back increasing his seizure med (which also makes him a little more tired and less interactive, boo!) and telling me to contact a company about a 48 hour video EEG (VEEG).  That was scheduled for two weeks after the med increase.  (Completely coincidental, but also an important time frame.)

In the meantime, Christmas was coming, we were getting out of school, and everything else.  Sats continued to be between 80 and 85 most of the time.

His VEEG was Jan 2-4.  Talk about fun!  He had to keep 21 wires glued to his scalp and two more on his back for two full days.  In all honesty, he was really, really good about it.  I gave him a short haircut and he did have to wear no-nos on his arms because he kept hitting them, but overall, no issue at all.  However, when it was done and I told him it was over, immediately he started pulling at the cap and netting and wires.  Those suckers were coming off!  It did take a lot of nail polish remover (acetone), Dawn dish soap and coconut oil to get it all taken care of.
48 hours later, all done!!

But here's the thing:  the day before we started the VEEG, his sats started creeping up.  He became less tired.  I was seeing 91, 92 when he was asleep, and the monitor wasn't going off all the time like it was before (yes, even set at 80 we heard it a lot).  And it's continued. This last week, I've put his monitor back up to 85, and it's still not going off much. We even sometimes see 90's when he's awake!

I did some research into his seizure med.  Keppra is a pretty fast acting drug.  It reaches a high state in the blood between an hour and two hours after administered.  However, it takes about two weeks to reach what they call "steady state."  Remember what I said about the time period between the increase and his VEEG?  Yeah, about that long.

Aaron:  Legend in the Making
So now I'm (impatiently) waiting the report.  We don't see neurology until March (and that's only happening because someone cancelled) so I won't get to talk to the doctor until then.  But I think we have at least some answers.  It looks like he's been seizing and we weren't aware.  Seizures are exhausting, hence the extra sleep and lethargy.  But even if we can't see them, that doesn't mean they're not dangerous.  We need to figure out things.

But at least now, he's happy.  His heart and lungs are working better.  He's getting the oxygen his body needs.

I hope this is the answer we didn't know we were looking for...

"Hope.  It is the only thing stronger than fear."
 Suzanne Collins