T18 Siblings and Life Lessons

Yesterday was Trisomy 18 Awareness Day.  Did I get pictures?  Not really, sorry.

Missionaries in Alexandria, LA
wearing blue for T18.

But his siblings wore blue.



His brother on a mission for The Church of Jesus Christ of Latter-day Saints (Mormons) even got his district to wear blue.  It was their P-day (preparation day, which means laundry, shopping, cleaning, etc) day, so they're wearing casual clothes, but he sent me pics.  ('Cause like I said, I didn't get them taken.)

Before he was born, Aaron's siblings (you know, those kids who were already here) had (relatively) normal lives, did sports, music, school stuff and had a mom who was involved with all of it.



Guess what, it's still that way, mostly.

When Aaron was born, and then when he was trached, I was told point-blank that he would ruin their lives.  It would be too hard on them to have a brother with such significant disabilities.  That Aaron would be too needy, it would be too hard.  Basically, it was wrong of us to try to make this work.

This is a common theme.  Parents are often told it's just not fair to the family to bring such hardship into their lives, especially if they have other children.

And it was hard, and it IS hard.  It's hard for them.  It's hard for us.  But you know what?  There were things that were hard before he was born, things they struggled with as kids, that we struggled with as parents.  If someone doesn't have difficult things in their lives, well, I guess they're wrapped in cotton and bubble wrap, and frankly, they're probably pretty boring too.  But honestly, I don't know anyone like that.

Ask a parent, any parent what kind of life lessons they really hope their kids learn, learn so that they're an intrinsic part of their fiber.  I'd be willing to bet that finding happiness, fostering close relationships, persevering, learning to overcome would be top of the list.

I asked my kids what lessons they've learned about themselves, or about life from Aaron.  What he's taught them.  Guess what they said?




Michael (12)  "He's taught me to always be happy.  He's fun to play with.  And he likes it when I bounce his yellow ball off his head.  He never gets mad at me."





Andrew (15)  "You can be happy even when things are hard or aren't fun."













Joseph (18)  "He is a rock. When I was preparing to serve I was really wanting to know that what I had been taught was actually the truth because I don't want to be saying things that aren't true. I wanted to know what was going to happen to him. I had always been taught that he already had his ticket. I really came to know for certain when I asked a preacher down here what he thought about it. What he said chilled me and solidified in my mind that a loving Heavenly Father would not send one of his children to hell because they are not able to be baptized. He told me in a very round about way that Aaron was going to hell. I thanked him for his opinion. We were in a recent convert's house and she asked me if that helped me and I said, "No, I already know where he's going." Growing up with him was a great way for me to "grow-up" quicker and mature quicker. I took more responsibility for my actions because of it and I always want to be there for him because he's my brother."


Matthew (20) "He's my inspiration for staying optimistic, no matter how difficult my circumstances are."





Jonny (23) "Aaron has taught me that you can live a happy life even while suffering through painful trials that are not your fault."

David (25)  "Aaron has taught me to persevere with a smile."

Mary (26) "Aaron has taught me how to hold onto faith and work through my fear.  Helping to care for him has pushed me to work through my discomforts to serve others.  He has taught me to greet my challenges with a smile (even though I still struggle with this) and how to take a deep breath when I am overwhelmed.  I have learned more about love from him than I thought I could.  So much of my life and worth is measured in how I contribute to my job and to society, but with Aaron, I have learned  how to value more the unseen contributions that shape how I  treat other people and the value I grant myself and others.



Deborah (27)  He brought our family closer than we've ever been before."

Yep, definitely ruined these kids.

Now, does this mean that life has been awesome for them?  Does it mean that they haven't struggled from time to time?  No, not at all.  We managed to somehow keep their activities going, but due in large part to a lot of support from other teammate's parents.  Mom hasn't been to nearly the number of soccer games as before, and has also missed concerts and other events.  Aaron has managed to land in the hospital on the major holidays, and most (if not all) the family birthdays at one point or another.  Sometimes it is hard!

But last week when my eighth grade girls were bemoaning combining with a seventh grade boys PE class, I started telling them about one of those little "Sevie" boys.  Told them that he saved his brother's life on more than one occasion.  That as a little preschooler, he knew his numbers between 80 and 100 before he knew 1-20.  That he was able to change out a trach, draw up meds with a needle and syringe, and give feedings through a tube in the stomach.  And they were pretty impressed!  (Although they still weren't jazzed about combining classes.)  

But look at what Aaron's siblings have learned.  Isn't this what we really want for today's kids?  Aren't these the kinds of lessons that today's youth (and today's adults!) need to know?  Happiness is what you make of it.  You're responsible for yourself and for others.  Look out for one another.  Life might not be what you hoped for, it might be hard, but you can still find joy.    And family is everything.

Now for a quick update about what's been happening here:  

When I last wrote, I talked about how Aaron had gotten sick, and with a pretty nasty virus at that.  But guess what??  He. Stayed. HOME!  We went through the usual ups and downs, but where we could handle it.  His pulmonary hypertension kicked in right on schedule, which also was a challenge, but one we could handle.  I think we might have bagged him a couple times, but that was all.  He really did well, and I have to think it was the change in food that let us deal with it here.

I did manage to get the flu about ten days ago.  THAT was miserable!  I pretty much lived either in my bed or on the couch for four days while Tamiflu worked it's magic.  If I had to go in Aaron's room, I gloved, masked and wore a robe that I only put on in there.  And I think we're far enough out that it's safe to say I didn't give it to anyone else.  Thank goodness.

And I think that brings us up to speed.  

Show me someone who has done something worthwhile, and I'll show you someone who has overcome adversity. 

Lou Holtz

Changes Part 2, Or Aaron Gets Sick

Like I said before, after changing Aaron's food, he seemed to be doing really well, until Tuesday.

Tuesday morning he was a bit whiny, very tired, more than usual.  He went to school, but wasn't really into it.  That night, he was still a bit cranky and his heart rate was higher, too.  Oxygen was still good.  We didn't have any junk in his trach.  His lungs sounded amazing!  But still...

I gave him his Tobii and asked him if he was sick.  He pretty much ignored it and turned over to take a nap.  A little later, we could hear him in his room "speaking."  He was listing out everything that hurt.  Eyes, nose, face, head, hair, ears, nose (again), eyes, eyes, eyes, and then kidneys!  Kidneys??  Yeah.  First of all, apparently he likes the kidney picture according to one of his school nurses, and second, I think he was trying to say he just hurt EVERYWHERE!  Poor kid.

He slept well that night, and again, still nothing to indicate that he was sick.  I actually wondered if he might be just out of sorts, although he was sleeping more than usual.

Um, nope, he was sick.  The next day he started running a fever, and his eyes were watering a TON, plus his nose started running.  Yeah, sick.  And my mama heart was worried.  Sooooo many people around here have the flu.  Primary's is SLAMMED right now with all sorts of nasty bugs.  They've been double bunking in some of the PICU rooms, and they've also overflowed into the Neuro Trauma Unit on the same floor.  I've been told the infant unit is double and even triple bunking, and there has to be a medical consult to admit any patient who is over the age of 15.  It's bad right now, really bad.

And Aaron had a fever, and was miserable, and his nose had started....  You know where my mind was going.  I called his ped and got orders for a viral panel and we went down to the hospital.  Let me tell you, this kid has amazing patience and fortitude.  If you've never had a flu test, it's nasty.  They take a big ol' (sorta) flexible swab and go up your nose and to the back near your throat.  Yeah, YUCK!  He's had so many, but just grimaces and shakes his head after.  He's a trooper.


Good news is that it came back negative for flu.  Bad news is that it was positive for a coronavirus.  For most of us, that's a cold, but maybe a cold on steroids.  It's pretty rough.  The particular strain he picked up usually hits either the upper airway and sinuses (nose, eyes, etc) OR the lower down in the lungs.  Fortunately for Aaron, it's lodged in the upper airway.  Unfortunately for him, that means we're suctioning his nose a lot, and he likes that about as much as any little boy would.

But we're at home.  He's back to playing, throwing pies at his brothers and smiling.  As long as the pulmonary hypertension doesn't go out of control this next week, we should be sitting pretty.

And thank goodness we got his food changed over!

Enjoy the pie throwing! (He's using his
eyes to move the cursor.)

“The art of medicine consists in amusing the patient while nature affects the cure.” 

Voltaire

Changes, Nothing is as Constant as Change

I'm not quite sure how it's been almost a month since I wrote.  But you know how you have a ton of things to do, and because there's so much, you just don't?  And then you get even more, and so you "don't" some more?  Yeah, that might be what's happening here with Aaron.  There's been a lot going on.  Oh, not all at once (mostly) but over time it adds up.  I keep thinking, I then I don't.

But this isn't just to keep others up to date.  It's my way of documenting how things are going, what we're changing, what's happening between those awesome, terrifying moments when things are turning on a dime.  (yeah, read "awesome" with a touch of sarcasm, will ya?)

Anyway, a month or so ago, Aaron started struggling again and we didn't know why.  He's still on the vent 24/7, but he was having some funny desats.  Then he needed more oxygen.  After a little while, we noticed this was more obvious just after eating, but it wasn't necessarily resolving between meals.  He really wasn't plugging, although we had several trach changes in there just to make sure.  His dirty diapers were "okay" but pretty firm, and not as much as he should have.  And his lungs sounded great!  What??

It got worse.  We started needing to bag him occasionally, and then more often, sometimes once a day.  Or he'd be on the tank because he needed more than the ten liters our concentrator goes to.  We'd try albuterol to open his lungs more, suppositories to make sure he was getting "cleaned out."  Sometimes he seemed a little uncomfortable, but still.  More trach changes (with nothing at all in the trach).  What was going on?

It kinda came to a head last weekend.  He was just a mess as far as his oxygen went, but no other signs that we could see.  I figured we just needed to make a change, and went back to blending his food.  I still had some frozen bone broth and frozen fruits and veggies, and added in the other things I needed.

Now, I stopped blending for a few reasons, mostly my own sanity.  We found what we felt was a really good substitute, an organic, plant based formula that looked a lot like my own blends.  It does have more oils in it than mine does, but that was okay.  And for a while (like late last fall 'til now) he did well on it.  It's not hard to blend for Aaron, really.  It's easier than meal prep for the rest of us, but still.  It's One. More. Thing. on top of everything else.

Except I guess when you eat McDonald's Happy Meals every day, eventually your body isn't too happy.  And that's what I'm going to have to consider this substitute to be.

Given that the rest of his vitals were good, he looked good, he sounded great, he was active and happy and all that stuff, I decided that if I could switch him back to blended diet over the weekend, and just try to baby him through the next few days, maybe we'd be okay.  And that's what we did.  Saturday was kinda rough, but he did okay.  Sunday was a bit better.  Monday was even better.  I think we figured it out.

And apparently, just in time.

Yeah.

Tuesday... well....

I need to put these in two posts because this is already too long.  And like I said, I use the blog for my own records and I'll probably need to find this info again.  I promise, I'll get the next one done quickly.  (I hate books that don't really "end" and leave you waiting for the next installment.)

"Let food be thy medicine and medicine be thy food."

Hippocrates