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

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

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

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

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

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

I Want to Remember, I Don't Want to Forget

December.  Christmas Time.  The most “Wonderful Time of the Year.”

For so many years it was my favorite time.  In lots of ways, it still is.  The lights, the sounds, the smells.  Friends, family, surprises under the tree. Celebrating the birth of our Savior.  It’s magical, sacred, glorious! In my 50 years, I’ve only slept a handful of times on Christmas Eve. As a kid, I wondered what I was getting.  As a mom, I can’t wait to see my kids’ faces. Yeah, it’s special.

But life has changed for me.  Or life changed me.  I don’t know.  I still love the music, the decorations, the Spirit of the Season.  But I’m also hesitant, frightened, and a bit sad.  Nine years ago I was praying for just one Christmas with Aaron.  Now, I keep praying for “one more”.  And hoping that it’s many more.  

Winter is hard on kids like Aaron.  So many in the hospital, so many who have passed away in December, often from a virus.  Yeah, and the common cold is the most common culprit. Most years we spend part of the month in Primary’s.  Last year we raced in, almost too late, and fought for ten days to keep him breathing.  Five years ago, we spent the days before Christmas, Christmas day and the week after in the PICU, coming home on New Year’s Eve.  That was the year our children voted unanimously to put off Christmas so Aaron could be part of things.  


The reality is, someday Tiny Tim’s crutch will be alone by the fireplace, and no one wants to deal with that before it has to happen.  

So along with my smiles, I find myself fighting tears.  ‘Cause this is hard.  Aaron is declining.  He has been for the past year or two.  It’s slow.  I hope it’s very slow. 

But it’s real. We are getting poorer results while giving more support than we ever have before.  

And because I want to remember, I don’t want to forget, I try to store as many memories of the good times while I can.

I want to remember the look of joy on his face as he sees Daddy come into the room.  

I want to remember him imitating Linnaea’s cries.  He was so funny.  She was upset, and he chimed right in, then stopped and looked at us to see if we noticed how cute he was being.  And then went right back to it.  Newborn cries in stereo, without twins!  

I don’t want to forget the looks he gave David when David snuck brownie crumbs into his mouth.  If looks could kill...  And he wouldn’t take his eyes off Big Brother for quite some time, in case he tried it again.

I don’t want to forget how excited he gets when we get him ready for church and put him in his wheelchair.  He likes going out, but he really gets going on Sunday mornings when he’s all dressed up.  Buckling the straps is a challenge as he wiggles and giggles through the process.  

I want to remember how he laughs at his own jokes, and how silly they are.  He loves to tease his brothers, and is quite the imp when it comes to “helping” them with his cords and tubes.  He often laughs so hard that the ventilator alarms, thinking that he’s breathing too fast.

I want to remember the look of wonder when I first turn on the flashing penguins above his bed.  

I don’t ever want to forget the cuddles and the look of determination, along with pain, when he endures yet another IV poke, or other hard time, but does so with an expression of trust that as long as I’m there, he’ll get through.  

I want to remember him “leading” the music down in the congregation on Sunday while I’m up front.  

The wiggles and giggles in his bed.  (Did you know the cool kids don’t lie upright in bed?  It’s sideways with feet hanging over, always.). 

The running and spinning with his brothers in his wheelchair.  The “supervision” of basketball games on the driveway and soccer tournaments.  

The drives in the car where sometimes he manages to unbuckle his seatbelt, making it so we have to pull over to refasten him.  

How he “helps” with diaper changes and g-tube feeds, and laughs at you the whole time.  

Sunday was our Christmas concert.  That’s really where I feel the Season begin.  And this was the first year I brought him.  I don’t want to not have a memory of him there while I sing.  And so this year, he came.  He sat and played with Daddy through the music and really enjoyed it.  And I have another memory to tuck away, safe and sacred, and treasure when there are no more memories to make.  

At a Christmas party two weeks, a friend was telling me about how her son’s condition has progressed to only soft foods, and they’re not far from a feeding tube. I had no words for her.  It’s natural to tell someone that things will get better, it’s just a bump, it’ll improve.  But it won’t for him, for her.  And I’m starting to realize that we’re in a similar position.  

Oh, I’m not discounting that things can’t get better here and there, but overall, we’re on a downward trajectory.  That’s what progressive diseases do.  They continue to get worse.  They don’t get better.  And “someday” will come, sometime.  And I don’t for a minute think I’ll be ready.

But in the meantime, like a squirrel storing nuts for a long winter, I’m packing away as many thoughts and memories and pictures as I can.  

”You remember someone said that God gave us memory so that we might have roses in December....” ~J.M. Barrie