Friday, March 29, 2013

We're Home

We're home!  Actually, we came home last night.  And while there have been a couple of hiccups over the past 24 hours, he's actually doing really well.

We're still not quite sure what happened.  We know he was sick.  We also know he had a large pocket of collapsed lung in his lower right lobe, which certainly would have contributed to feeling lousy.  Kinda hard to feel good when you're struggling to get enough oxygen to your body.  All in all, it was a quick stay, and he's bouncing back quickly.

Me, maybe not so much.  I'm feeling a bit old right now.  After a while, you get used to sleeping on the pull-out chairs.  And really, mine was one of the best.  They really aren't that uncomfortable.  And you get used to sleeping in the unit.  But for two nights, yeah, not quite long enough to adjust, or at least to get tired enough to just sleep through it all.  So I'm feeling kind of zombie-like right now. Here's hoping that a couple more nights in my nice comfy dark bedroom will help me be a little more human. 

Aaron, he's already back to his old tricks.  Let's sleep most of the day and party all night!  He figures he's got a lot of catching up to do to be like his big kids.  He has a set of jammies that say, "I do my own stunts."  Yep, he sure does.

People who say they sleep like a baby usually don't have one. 
~Leo J. Burke

Thursday, March 28, 2013


Aaron had a really good night last night, and a pretty good day yesterday.  We did get a CRP which measures inflammation in the blood.  It's a non-specific test in that it measures the stress the body is dealing with.  For example, just after surgery, it spikes but should then decline.  His numbers were higher than normal, but he's also been sick.  So I'm hoping we'll get another today and that it is lower, or at least the same.  If it is, I think we may get sprung.  YEA!!  If it's higher, well, we'll deal with that, too.

So that's what's going on, in a nut shell.  His viral panel came back negative, which means out of the hundreds of viruses out there, he doesn't have one of the five or seven most common.  Was it bacterial?  Maybe, but they've hit him with some high-powered antibiotics over the past 48 hours.  Could it be viral?  Probably.  He has been sick with something, and his lower right lung has more collapse.  What caused the collapse?  Good question.  But no fever for the last 24 hours, and MUCH happier.  He spent all night up, playing and smiling.  And now he's asleep.  Yep, I think we've got our bug back.

The treatment is really a cooperative of a trinity,
the patient, the doctor and the inner doctor.
Ralph  Bircher

Wednesday, March 27, 2013

PICU Admit

I am completely overwhelmed by the prayers  being offered on Aaron’s behalf.  Not only friends and family, but on temple prayer rolls and friends of friends, and friends of friends of friends.  Every one of them are felt.  May God bless you for your love and compassion.

7:00 a.m.
Aaron didn’t start running a fever yesterday, but he slept a lot (not surprising since he was up most of the night) and I did get a nap with him.  But when we woke up, I tried to shift his body in his bed and he started sobbing again.  I figured that was enough.  It might not be much to worry about, but we needed to get some tests just to make sure.  That turned into a bit of a circus.

I called his ped, Dr. K, and asked for a chest x-ray, a urinary cath, some blood work and a viral panel (where they check for the most common respiratory illnesses: RSV, flu, rhinovirus, and a couple of others).  No problem.  He was more than happy to order them.  Except, we needed to stop at his office for the cath because the outpatient lab at Primarys at Riverton doesn’t do caths.  Okay, so another stop, oh well.  
We get to Riverton and do the x-ray, no issues there, except there’s a significant patchy area in his lower right lung that I’m not used to seeing.  Go to the lab and find out that they don’t do viral panels there, but they can do his blood work.  Or maybe they can’t.  They’re only allowed two sticks before they have to stop, and Aaron wasn’t being cooperative.  So since we had to go over to the ER for his viral panel, we’ll do blood work there, too.  There are RNs and IV teams over there that have more options of where they’re allowed to stick and so on.

Over to the ER.  When we get there, we’re actually seen pretty quickly.  As the doc comes in to check on us and say “hi” I asked him about the x-ray.  It’s already been read and they’re reading pneumonia.  Yep, that patchy spot.  It’s decided that he needs to go up to the main campus for admission and the question is, by my car or by ambulance.  Since I don’t have anyone else with me and Aaron has been known to go bad pretty quickly, we decide ambulance is best.  It takes a while to get the blood work and they also want to start him on his antibiotics. 

About 7:00, Aaron decides to show them what he can do.  He starts needing more and more oxygen.  Up until this point, I’m still a little confused at his behavior.  He’s very much right in the middle of his baseline oxygen needs.  No changes there at all.  That’s about to change.  He needs a little more, then a little more.  I let his nurse know that I would really like to be on our way as he’s starting to act up and I’d like to get there before he really struggles.  She gets the doc and Aaron decides he really likes his oxygen.  More please! 
It’s decided that he’s going by chopper.  The pediatric team that was needed to go with us is in the air and on the way.  I have told that boy time and again that it’s only one ride per customer, and he’s had his!  Like the obedient child he is, he started to settle down.  When the pediatric team got there, they reassessed and decided that ground would be okay after all.  So we loaded and got on our way.

We’re currently sitting in the PICU.  He started running a fever again after we got here, but Tylenol helped out and he had a fairly restful night, was even down to two liters for a while.  But about 6:30, he wanted to show off again.  He was so sad and started desatting again.  He ended up in the 70’s and needed 10+ to come back up.  Gave him more Tylenol and suctioned some more and he’s settled down again.

Probably most telling is that he’s just not happy.  He has these big sad eyes, with his eyebrows furrowed.  I haven’t been able to get a smile.  They’ll round later this morning.   Last night, the docs here were thinking that it might be atelectasis, collapsed lung tissue, instead of pneumonia.  There is obviously more to it than that because of his fevers.  Not quite sure where this stay is going.  He’s on his home vent and home settings, but not quite stable on his oxygen. 

We’ve decided that he definitely needs to be observed in the hospital.  His demeanor and his varying oxygen needs just are too out of whack to release him.  But he’s also doing well enough that we can go to the floor.  So sometime today, probably this afternoon sometime, we’ll head up there.  And if he decides to go south again, the PICU is only a floor away.  Somehow it’s not nearly as hard emotionally to bounce back to the PICU as it is to bounce back to the hospital from home.

“A man is powerful on his knees.”  
-Corrie Ten Boon

Tuesday, March 26, 2013

Aaron is Sick :(

Aaron is sick.  How sick?  Good question.  But any "sick" is enough to give me a knot in my stomach.

Yesterday morning he was "off."  Nothing I could put a finger on.  Oxygen good, heart rate normal, but he wasn't his usual happy self.  And his night nurse said he'd been really tired, but couldn't get to sleep.

Then about 10:30 a.m., he started crying.  And crying. And crying.  My poor baby never cries without a really good reason.  Like a blood draw or IV stick that is taking forever to find the vein.  And then once it's over, he stops, pretty much just like that.  But yesterday, no amount of rocking and soothing would help.  He just sobbed.  For an HOUR.

Once he settled down and went back to sleep, I noticed his heart rate was up a bit.  Like up where it should be if he was working really hard in therapy.  But he wasn't.  He was asleep.  I took his temp and it was normal, but that higher heart rate kept me coming back each hour to take it again.  And sure enough, about 1:30, it shot up.

Now 101.2 may not seem like that high, but Aaron runs low.  His norm isn't 98.6.  It's 97.7.  And yes, we've taken it enough to know.  Plus, Aaron doesn't get fevers.  He's had four in his lifetime, and only one was very high.  He popped a high one following his trach and g-tube surgery.  We never did figure that one out.  He had a low-grade one when he had his only UTI.  Then with both of his pneumonias he had a mid-grade fever, kind of like the one yesterday.  See why I'm on edge?

Fortunately for Aaron, Tylenol sticks around a LOOOONG time for him.  Like a minimum of six hours but closer to eight to ten.  So he can be comfy for longer.  But again, about 9:00 last night, he was sad, oh so sad.  As I did his trach cares, I sat him up to fasten his ties.  And that triggered it.  This time it was Daddy who rocked him for the hour it took to calm him down.  When he was still crying even though he was asleep, we gave him Tylenol again, even though he wasn't running a fever at all.

This morning, he's sleeping quietly, peacefully.  And his heart rate is still down, and no fever.  But I've cleared my calendar.  I stayed up late to finish today's assignments and will be contacting the office about the kind of work I can do over the next few days.  They need to be jobs that I don't need a high-speed internet for, in case we do go up to our "vacation home."  As long as he stays happy and fever-free, we'll just cuddle and hang out today.  But if he struggles at all, if he hurts, if he gets another fever, we'll go in for labs and x-rays.  And of course it goes without saying that if his oxygen needs increase, we'll be out of here really fast.

So a plan has been made.  The hospital bag has been checked and restocked (yeah, one pair of underwear probably wasn't going to do it for me).  His medical history and papers have been updated, printed and put in the bag.  And we've had the "talk".  The one where I point out all the advantages of getting better quickly.  Like he can have all the rocking time with Dad that he wants.  And there will be no needle pokes or IVs here.  He's always tried so hard to be obedient and cooperative before.  Here's hoping it works again this time.

There is no medicine like hope, no incentive so great, 
and no tonic so powerful 
as expectation of something tomorrow.   
- Orison Swett Marden 

Sunday, March 24, 2013

Sweet Pictures

A sweet friend has been putting together some fun pictures about our kids with Trisomy for Trisomy Awareness Month.  I asked her to do "something" and she pulled these two pictures and did them.  Didn't she do a fabulous job?  I'm so grateful for my Trisomy family.  They mean the world to me. 

In Aaron news, he went to church today because Mary was speaking.  She leaves for the Missionary Training Center on April 3rd and then shortly thereafter goes to Canada Vancouver for the next 18 months. 

Because next week is Easter, he'll start going back to church regularly.  That's kind of been our signal date that winter (and hopefully most of the viruses) is on the wane.  He's been using his speaking valve for most of his vent trials, and hopefully tomorrow we'll start turning down the support on the ventilator a little bit.  We are actually a little bit excited about someday needing to take him out of church because he's being too noisy.  He, himself, not his machines.  It's not too often that parents are hoping for their child to make too much noise in church, but then, it's not too often that it's a real milestone for a child to be able to make that commotion.

“I didn't want normal until I didn't have it anymore” 
Lament: The Faerie Queen's Deception

Wednesday, March 20, 2013

Really Good News

Today is the first day of spring, although Mother Nature seems to have missed the memo.  Father Winter seems to be overstaying his welcome this week if you ask me.

Aaron had (some more) doctors appointments this week.  Yesterday he saw cardiology.  Everything there looks stable, unchanged, but stable.  I'll take that.  Plus, we came up with some ideas for possibly improving the health of his heart and lungs with changing some vent settings, but that's going to take some coordination with pulmonology as well.  So that ball has been set in motion, and I hope it just keeps on rolling.  I have a dream that someday, somehow, Aaron will be free of the ventilator, and maybe even his oxygen tank.  That would be such a wonderful experience.  Not that they're bad.  Really, I'm truly grateful for them.  I just wish they weren't needed.

But today, he had some cancer screening tests, a VCUG (long unpronounceable name) to check his urinary reflux, and a urology visit.  The best news is that he has no masses or anything else on his kidneys or liver.  I know the chances are very small, but even so, in the days leading up to the tests, I'm on edge.  Not fun.

But in a very, very close second to that best news is that he has outgrown his reflux!  This reflux occurred because the valve at the top of the bladder is supposed to be one-way only, but his was floppy (kinda like a lot of other things about him?  Ear canals, airway . . .) and let the urine splash back up into the kidneys.  I was told that with a grade IV reflux (only scores to grade V), most kids will end up needing surgery around four or five years old to fix it.  But he's done it!  It's gone!!  He has been discharged from urology and will be discontinuing his daily antibiotics!  One less thing to remember, do, worry about.

I had my own challenge this week.  I've had a tooth that's been bothering me since my surgery.  I kept thinking maybe the sensitivity would just go away.  Yeah, right, I know.  But while I like the dentist as a person, I have a real fear of seeing him professionally.  So I put it off until I just couldn't any more.  Turns out that he had to drill out almost the whole tooth, AND my gum had actually grown into the cavity.  Yeah, owie!  It still is  tender back there.  But I just keep reminding myself that Aaron has endured much more pain with quite a bit of grace.  So I just keep plugging on (and eating soft foods).

On a sadder, more difficult note, our cocker spaniel, Daisy, will have to be put down tomorrow.  She started getting sick about two weeks ago and when we took her in, the vet thought it might be a systemic infection.  It turns out that instead, it's a very fast moving, aggressive cancer.  Deborah and the youngest boys especially are having a hard time with it.

And so as winter turns to spring, life moves on.  And we'll move on with it.

The day the Lord created hope 
was probably the same day He created Spring.  
~Bern Williams 

Sunday, March 17, 2013

Random Thoughts and Updates

Okay, I think I'm starting to get a bit behind here.  I've all sorts of great thoughts, fun ideas, etc floating around in my mind lately.  However, they're also kind of like those tiny pieces of dust you see flitting around in the sunbeams.  Very much there, but impossible to grasp.  So you just kind of sit and watch them dance.  Unfortunately (or maybe fortunately!) you can't see them in my head. 

But here's a quick update anyway. 

Aaron is doing great, yea!!  He went to the Ballroom National Competition with me last week and had a lot of fun rocking out to the music.  Deborah and Jonathan did very well, making it through the first round of callbacks and almost the second.  Jonathan and his partner, Hannah, did fabulous also.  They made it through five rounds of callbacks in their first event and then to the semi-finals in their second.  All in all, a very fun weekend of dance.

Aaron is also back on vent trials!  He's doing really well with them.  We're building up fairly slowly, so right now he does one hour off the vent and then three hours back on it.  I haven't figured out the best way to increase from here, so we'll just play it by ear. 

Today is St Patrick's Day, and yes, we do have some Irish in us!  I've watched as some other moms have used decorations on Christmas trees all year round and decided I wanted to do the same for Aaron.  The same way we're trying to cram as many birthdays in as we can by celebrating monthly, I want him to see as many Christmas (or other holidays??) trees as possible.  So this year, he got his own little Christmas tree that stays up in his room.

For Christmas, we decorated it with angels.  I thought that very appropriate.  He's our own earth angel, and I know he has so many heavenly angels watching over him.

In January, Michael and Andrew helped me make snowflakes.  And the weather outside decided to go along with the theme!  It really seemed to snow a lot this year.  They're saying it really isn't quite up to a normal water year, but I still have a few small piles of snow on my lawn, and it's been in the 70's the last couple of days.

February was hearts, of course.  I really don't have many seasonal decorations, but we made do.  I really liked the cheap, dime store valentines that we pulled out to use as well.

March, well, yep, that's today.  Lots of Luck.  Notice the glitter shamrocks?  Well, when you have two grade-school boys that just CANNOT get along and it's only 4 p.m. on a Sunday (a couple weeks ago), you get creative.  My first inclination was to put them to bed, but I also didn't want to be up at 2 a.m. with them.  What happens when you give said boys each a piece of paper with five shamrocks and some glitter glue?  You get TWO HOURS of peace!  You also get glitter from one end of the house to the other as clean-up begins, and shamrocks that don't fully dry for two more days, but hey, I'll take that!  They had fun, they served their brother, and we had PEACE!  (Yeah, I'll freely admit, with all the kids around here, that's sometimes, often? hard to find.)

Sleep well, my little one.  

 So that's where we are right now.  Tomorrow is March 18th.  (Funny how that always seems to follow the 17th.)  3/18.  Trisomy 18 Awareness Day. 

Will you do me a favor?  Will you tell someone about Trisomy?  Let them know that it happens, but also that it blesses lives.  He has blessed ours so much.  I hope he's blessed yours, too. 

"It is not length of life, but depth of life."  
Ralph Waldo Emerson

Saturday, March 9, 2013

1000 Days of Love

Three years ago, when we were first given Aaron’s diagnosis, I told my doctor that I felt sure his live would be measured more in weeks and months than days and hours.  I had no basis for this, other than a feeling.  And so many times it seemed our time was drawing close, but still, he fought on.  And today, March 9th, 2013, Aaron turns 1000 days.  1000 days and nights.  I didn’t dare to dream it, not in specifics.







Day 1 – June 13, 2010 
Just a few hours old

Aaron is born, tiny and frail.  It’s only in looking back at his pictures that I realize now how fragile he really was.  Struggling to breathe, eat, and even poop.  The basics we don’t even think of were a fight for this little warrior.  And fight he did.












Our favorite Pirate picture



 Day 100 – September 21, 2010

Still tiny, he’s been hospitalized a couple of times already.  We’ve even called 911 and been transported by ambulance to Primary’s by now.  Our first time, but it wouldn’t be our last as we would get to know them very well!  He’s outgrown his central apnea by now, but obstructive apnea is setting in.  And we didn’t know it.  Every day is a blessing.



Day 200 – December 30, 2010

He’s weathered a couple of surgeries by now, g-tube and nissen, followed a couple days later with trach surgery.  He’s also been life-flighted back in when his vent settings aren’t enough to sustain him.  He fought for days, masking the struggle, until finally in the early morning hours the day after Thanksgiving, he just couldn’t fight any longer on his own.  Bless the Lone Peak Fire District paramedics.  They recognized it, intervened, and saved his life.  A priceless gift that we will always remember, and we can never repay.  Now with new vent settings and a new trach, he really takes off.  No longer struggling to breathe, he starts to put on weight and grow bigger every day.



Day 300 – April 8, 2011

Aaron has gotten really friendly with the staff at Primary Children’s Medical Center.  Thanks to the trach, he now has a new hole in his body to let germs in.  And as they (the germs) try to decide who is top dog, he ends up fighting infection after infection.  BUT thanks to the trach, he has the strength and endurance to fight back, and he does.  In February, he manages to fight off a pseudomonas (yeah, as yucky as the name) pneumonia with only a six day PICU stay.  I found out on discharge that the expectation was weeks, not days, in there.  That was, IF he managed to fight it off.  All in all, he didn’t manage to go three weeks between discharge and his next admit, but this part was coming to an end.




Day 400 – July 17, 2011  

We celebrate his birthday in June!  It’s an awesome time!  And he’s now strong and stable enough to start focusing quality of life surgeries and issues, instead of life saving challenges.  He has surgery to repair his cleft lip (twice!) and gets ready to start casting for his feet which are curved up and out, the opposite of club feet.









Day 500 – October 25, 2011

We continue working on his feet.  After a series of casts, he has surgery to lengthen his very tight Achilles tendon and keep his talus bone horizontal instead of vertical.  He also lands himself back in the hospital with a cold, yeah, the common cold.  It’s a rough time as he fights back and forth with the effects it has on his lungs.







Day 600 – February 2, 2012 

Due to his illness in October/November, Aaron has once again been grounded for the winter.  Except for doctor’s appointments, he doesn’t go out.  But he’s growing big! In fact, he’s doing so well that he gets put on a diet!  Yeah, my chunky monkey doesn’t have to work nearly has hard to breathe and eat, so he puts his efforts into growing!  Yea!!



Day 700 – May 13, 2012

He’s almost two years old!  Growing and loving his life, he’s trying to roll over.  We’ve found a new hearing aid that makes his ability to hear almost normal.  It’s so fun to see his reaction to sounds.  He loves going out on walks and to soccer and baseball games.  He is so happy with his life.  Enjoys staying up and playing all night with his nurses or going out on walks. 






Day 800 – August 21, 2012

Aaron enjoys his first road trip.  We drive to Arizona to see Gramma and Grampa Brown.  While there, he gets to meet cousins he’s never seen and go swimming.  We also meet up with another special boy, Santi who has Trisomy 13 ring, a very similar condition to Trisomy 18. 



Day 900 – November 29, 2012 

Aaron gets to go to story time now.  He has a lot of fun moving and dancing to the songs.  He continues to love getting out, and even goes trick-or-treating for the first time.  He’s sitting up pretty well with support, and even for a few seconds at a time without support.  He rolls around in his bed and loves to play with his toys.  With his new bed, his big kids love to climb in and play with him, and he’s always game! 








Day 1000 – March 9, 2013

What can I say?  He’s our miracle.  Such a blessing we never could have imagined 1000 days ago.  Thank you all for your prayers and support.  He is our inspiration.

Take a few minutes and watch him grow over the last 1000 days.  I think you'll enjoy it.  A special thanks to Kathryn Weaver for her Trisomy logo designs.

Dream no small dreams for they have no power 
to move the hearts of men.
Johann Wolfgang von Goethe

Thursday, March 7, 2013

For the Family Whose Baby was Lifeflighted Yesterday

-   I saw your baby yesterday, or rather, I saw the isolet, the little incubator, that protected your baby from the world.  It was Wednesday afternoon, about 2:45 at American Fork Hospital. 
My heart aches for you.  Obviously, I know almost nothing, but from what I saw, I make some assumptions.  I assume that your baby was just born and was probably sent to Primarys.  I assume that you began the day not having any idea that you would be dealt this, because face it, no one plans and hopes that their baby’s first journey will be on a medical helicopter, all alone except for medical personnel.  The chopper was parked at American Fork for quite a while, motionless and cold already when I got there with my own son for his labs.  And it was as we were loading back up that they brought your child out.  So I’m guessing that instead of a frenzied rush in the Emergency Room, something warned the nurses and doctors during or right before labor that maybe everything wasn’t the way they expected.  And they called for back-up.
So my heart goes out to you.  I don’t know your heart and your fears, but I know mine.  I remember the very cold, dark night that a chopper landed outside my home.  I remember the rock in my stomach, the lump in my throat, the fear that stole my own breath as I watched my son fight for his.   I imagine that you were expecting a joyful ride home in your own car in a few days, not this new adventure.   It’s instinctual, born in us to protect our children, our babies, and hold them close.  We feel that no one can take care of our children and know them like we do.  But sometimes we have to stand back and let someone else do it. And it hurts, it hurts so badly.
So from a mom who’s ridden and riding her own ride, know you’re in my prayers.  You and your baby.  The lows are so low, but the highs that come with each new small milestone are just as high.  You may have many valleys, but I pray you also experience the mountain tops as well. 
"Only if you've been in the deepest valley can you ever know how magnificent it is to be on the highest mountain."  Richard Nixon

Sunday, March 3, 2013

I Know That My Redeemer LIves

I've been struggling lately, a lot.  I have struggled with work, with home, with meals, housework, Aaron's cares, basically anything that falls under time management stuff.  I've struggled with it.  And I have not been happy, content.  Yeah, struggling with that, too.  And of course because that can't be enough, I know intellectually, that I have been very blessed.  But I haven't been feeling that either, so let's throw in some guilt, just to spice things up a bit.  Did I mention I've not been happy?

Today was Fast Sunday.  One the first Sunday of the month, Mormons go without food (fast) for two meals and try to draw closer to the Lord by feeding our spirits more.  But sometimes, that natural, physical (hungry) person gets in the way.  In an effort to help focus our fast better, the past two months I've written on a white board, "It's Fast Sunday.  For what purpose are you fasting?"  And then I leave space for people to write.  As I did that last night, I pondered on what my soul needed, and I felt like crying to my Heavenly Father, "I need comfort.  I need to be content with the blessings that I have.  I need to feel thankful again." And so I wrote that down at the top of my list.

And once again, my Father has let me know that He does love me, that He does hear me, understand me and cares even for my whiny, ungrateful, hurting self.

I went to another ward meeting today, like I have been most of the winter, so that I could take the sacrament and then go home and be with Aaron while William and the kids go to our meetings.  I've just found that I'm a better me when I get to renew those covenants I made when I was baptized.  I sat there, waiting for the meeting to start, spoke with a couple people, and started singing the opening hymn when it began.

That hymn?  I Know That My Redeemer Lives.  And I do know He lives.  Those words spoke so much comfort to my soul.  It was a direct answer to my prayer.  My Savior and Heavenly Father are intimately involved in my life and the lives of all of us.  They want nothing more than to reach out and comfort us.  I felt my guilt at not being grateful enough swept away by the message in the second verse.
He lives to comfort me when faint.  He lives to hear my soul's complaint.  He lives to silence all my fears.  He lives to wipe away my tears.  He livest to calm my troubled heart. He lives all blessings to impart.

Then we moved on to the third verse.
He lives, my kind, wise heav'nly Friend.  He lives and loves me to the end.  . . .   He lives and grants me daily breath.  He lives, and I shall conquer death.

Oh, how grateful I am for my Friend.  And so very grateful for the daily breath He grants me, not just me, but Aaron as well.  For every one of those sweet breaths that Aaron has been give over the last almost 33 months.  But not only are Aaron's breaths daily gifts, so are each one of our breaths.  And when those breaths cease, it is still not the end.  Because of His gift, His love, we can conquer death and live again.

Spring is coming, new life, new hope, rebirth.  The world will be green again after winter's long sleep.  Like the earth, we will also be given new life through the resurrection.  I am so grateful not only to know this, but today, to be feeling it again.

No, my challenges aren't going to be taken away.  I'm still trying to figure out how to cram about 28 hours worth of activity into each 24 hours.  It's not working yet.  But I know that through my greatest challenges come my greatest blessings.  And with His help, if I ask for His help, I'll find my way.

I will sing unto the Lord as long as I live: 
I will sing praise to my God while I have my being.  
My meditation of him shall be sweet: 
I will be glad in the Lord.  

Friday, March 1, 2013

Kicking Off Trisomy Awareness Month With a Fight

March: the third month.  Trisomy:  three chromosomes instead of the usual two.  Fight: to put forth a determined effort, to struggle to endure or surmount.  And here we go again. 

I never, NEVER dreamed that things like this happened today.  In Germany, pre-WWII, among Hitler's very first victims were the infirm in body or mind.  He started with them.  Today, while I'm sure they would be appalled at being compared to him, doctors still sometimes decide that a person's life is "not worth living."

So, since my eyes have been opened, I wanted to share with you just a couple of examples. Unfortunately, there are many more.

First is sweet Peter.  He was six years old when he lost his battle.  But it wasn't Trisomy exactly that took him.  It was that his hospital records had "Trisomy" listed as one of his diagnosis.  He was allowed to bleed to death, yes, "allowed" is the right word.  His mother and others are now fighting to make sure that in Minnesota, hospitals must make public their "futility policies".  YES, hospitals DO HAVE THESE, where THEY decide if it is worth fighting to stay alive.  Here are a couple of articles, pretty short and well worth reading about the fight going on in Minnesota.  And lest you think that Minnesota is all alone, please know that they are not.  It's just where that particular battle is currently being fought.

  • Peter Kellett and Trisomy 18: Part I - excerpt from the article
    "The doctor said infection from appendicitis had strained Peter's heart to cause death. But the Kelletts weren't believing him. They ordered an independent autopsy, which found no infection. Peter had internally bled to death."
  • Peter Kellett and Trisomy 18: Part II - excerpt from the article
    "She said, "All throughout Peter's life, from the beginning, the only help it seemed we got (from the medical profession) was to help him die. There was a huge difference between the way doctors treated Peter and the way they treated our other kids. It was like they couldn't see the value of his life. The doctor (at his birth) said Peter would never contribute to society. My argument has been that people with disabilities contribute to society in the most important way. They help us become better people. I call them 'teachers of our souls.'"If having known that particular hospital had adopted a futility of care policy, Kellett wouldn't have taken Peter there. She said parents had the right to know these policies existed. She said, "I have a feeling what's behind (these futility of care policies) is saving money. There's a lot of passive euthanasia going on, especially involving kids with disabilities. We're still devastated over how Peter died." 
I love in the article when she challenges the doctors who say that Peter's life has no meaning.  She points out that children like Peter are "teachers of our souls."  In our world today, where so many souls seem lost, could it be that these children are the most valuable teachers we have?

Also, it seems ironic but appropriate that, once again, as a community, we are fighting to help a child live.  Fortunately, some people with some very big clout have gotten involved, contacted some doctors and plans are being made (changed!).  Today, baby Vanessa is fighting for her life.  Her parents are fighting with her, against her hospital.  She is at CHOP, one of the very best hospitals in the United States, but it has taken some muscle to get her treated.  You can read about it here on Facebook or here on  

Please, don't close your eyes to this.  Don't think that it doesn't involve you.  It does.  When someone decides that a life has no meaning, it touches everyone.  Spread the word.  Trisomy happens.  That is not the tragedy.  That there are those who think it makes a life unworthy, that is the tragedy.  Edmund Burke said, "All that is necessary for the triumph of evil is that good men do nothing."

Look how far our little teacher has come.  He's worth the fight, and so are the others.

Remember the worth of souls is great in the sight of God.