Tuesday, March 31, 2015

Looking Forward to a Chance of a Lifetime

Some 28 years ago, I left high school and headed off to college.  I was exited to go to BYU, excited to be (mostly) on my own, to be a "grown up" (hey, I didn't say I had a grasp on reality) and to start "real life" (again, that reality thing).

I was also excited to be with other people like me.

See, I'm a member of the Church of Jesus Christ of Latter-day Saints, a Mormon.  Always have been.  But frankly, Mormons aren't too plentiful in New Jersey.

Please don't get me wrong.  I loved high school as much as anyone else.  I had fun times, good friends. I still keep in touch with one after all these years, and count knowing her as one of my greatest blessings.  But believe me, I was considered weird.  In my whole high school, there were three other members of the church, and two of them were my siblings.

Yeah, I was different.

And when I went to college, it was amazing how great it was to have such commonality.  I didn't have to try to explain basic beliefs.  We all shared them.  And it was so freeing to be with people like me.

It's kinda the same way with the Trisomy community.  I've got lots and lots of "normal" (whatever that is, right?) friends.  Friends whose kids have 46 chromosomes, all in the right place.  Kids who ride bikes, dance, play soccer, sing, and can't keep a room clean.

But I'm different now, 'cause I've seen way more than most of them have.  It doesn't make their friendship less valuable, really, it doesn't.

But it makes me yearn to be near others who are like me.  Other moms who've heard the statement, "Your baby is incompatible with life."  "Your baby will not, cannot live."  Other moms who've learned how to live in a hospital, speak medical-ease, open their homes to nurses.  Others who've planned funerals along with births, and sometimes, often, carried out those plans.

From time to time in the Trisomy community we talk about how it would be so great to all live in one place.  We'd have street names like "Warrior Way" and "Angel Path."  "Trisomy Turnpike" would run through the center of our town and the grocery store would carry feeding tube supplies along with bottles, and maybe even onsies in bigger kid sizes!

Well, for a few short days this summer, I have the chance to be part of a group like this.  Every summer, SOFT (Support Organization for Trisomy 18, 13 and other related disorders) holds a major international medical conference.  Since Aaron has been born, it's been held in Maine, West Virginia, and St Louis among other places.  But those are places we really can't get Aaron to very well.

This year it's going to be here, in Salt Lake City, and I've been so fortunate to be on the committee.  There will be workshops for families on CPR, genetics, dietary needs, and support.  There will be medical clinic visits held at Primary Children's (yeah, Aaron's "vacation home").  But most of all, it will be five days of being with other families like ours.  Families who've been through the fire, who are still in the furnace, who know what it's like.

And my kids will get to hang out with other kids who've been through the same things.

I think Aaron was one when I first heard that the conference was coming to Salt Lake, and I started making plans then.  If you want to help us get there, I'd sure love some help.  I hesitated to put up a "go fund me" page, because I really hate asking for help.

But so many people have asked how they can help, and this is a way that would really benefit us, and Aaron.  We're over a third of the way to our goal, and if we exceed it, any extras will be used to fund some therapies and equipment that insurance doesn't provide for.

So if you'd like to help us out, if you have some to spare, we'd sure be grateful.  The link for the account is in the upper right hand corner, or you can click here:   Gofundme.com/CompatibleWithJoy.  

Or if you'd rather send it directly, you can always paypal it to: rebekahkpeterson@gmail.com  (Yes, this is a different email than I usually use, it's my work one.)

We'll also be participating in a 5K on Aaron's birthday (June 13, Liberty Park) to raise money for the local SOFT chapter.  There will be more details coming on that later.  But I know I've got a lot of runner friends out there, so I thought I'd give you a heads up on it.

This is such a great opportunity, and probably the only conference Aaron will ever get to.  See, with his medical equipment, specifically his oxygen requirements, he cannot fly.  Not that it's hard, it's not possible.  You can't fly commercially with oxygen tanks, and he can't use a portable concentrator with the vent.

I can't wait to be with my trisomy family.  This really is a dream come true.

Friendship is born at that moment when one person says to another: 
‘What? You too? I thought I was the only one. – C.S. Lewis

Sunday, March 22, 2015

More Blessing Than Burden

Some time ago, I stood in a line for a friend's little one.  Right behind me, a couple mentioned that such a burden had been lifted from the family because of the care their baby had needed.  I am so grateful that the grieving parents had not heard this because I know (they've told me) they never saw their child as a burden, but rather as a blessing.

So many worry about the heaviness of the burden of caring for a family member.  And yes, it is a burden, but so is everything worth having.

Let's repeat that in other words:  NOTHING comes without a price. There is no "free lunch."  There is always a trade-off.  If you want a great end result, you have to pay the price.

Years ago we rented a cute house in New Jersey.  We had a big yard, and none of the "burdens" of home ownership.  The yard was taken care of.  Taxes were paid by the owner.  Any repair over $50 (and good luck finding one that's not) was taken care of with a phone call, and nothing out of my bank account.

But what's the "American Dream?"  Home ownership.  Yes, with all the burdens that come with it.  Getting an education is a burden, but I don't hear many say it's not worth it.  Simply existing on this planet is a burden.  Gravity, anyone??

But we don't look at these things as burdens because the blessings outweigh them, by a long shot.

Yesterday, I was talking to a couple of our kids (the rest were scattered around the world, literally) about Aaron.  I was told that having Aaron would be an incredible burden on our family, on our kids, on our marriage.  Yes, told that straight out.

When I brought it up, everyone one of them responded with outrage.  It was almost kinda funny.  See, while their lives have changed, significantly, while it's sometimes been hard, REALLY hard, they don't see it as a burden.

Deborah laughed when I mentioned that there is the idea that special needs parenting is isolating.

In a way, it is.  I don't do a lot of the things I used to.  I feel I've lost contact with some of my old world.  But she laughed because my world is so much broader than before.  When she and her partner needed a place to stay for an out of state dance competition, I had lots of friends I could ask.  When I needed a wheelchair for David last year, I had offers of several within minutes.  The number of people whose lives have touched mine, and whose lives I've touched is enormous.

In their words, he's the best thing (can a person be a "thing?") that's ever happened to our family.  One person said that they couldn't imagine surviving the other stresses they've had to deal with over the last several years without Aaron.  Another, an older child, mentioned that they could not imagine having conversations that we've had before Aaron.  While those conversations have not been about Aaron per se, he has made us more open, more willing to listen, and more willing to risk.  And those words and ideas and thoughts have been very much needed.

I think our marriage, our family, our children are stronger, better.  As we were talking, it was mentioned that yes, if one person tries to, or has to, do it alone, it's got to be awful.  Alone is not how we were created to be.

But if we approach the challenge as a team, as a family, it can make us that much stronger.  As humans, we're fantastic at adapting.  That's why we're still here, still alive.  And that's what you do when faced with a challenge, especially an (almost) insurmountable challenge,  If you can't go over it, and can't go under it, you go around it.

And the view on the other side may just take your breath away.

If you can find a path with no obstacles, 
it probably doesn't lead anywhere. ~Frank A. Clark

Friday, March 20, 2015

Be Happy!

I'm told that today is International Day of Happiness!

So here's to your happy.  Doesn't this face just make you smile?

And a fun song from my latest favorite group to make you grin.  

Happiness often sneaks in through a door you didn’t know you left open. 
~John Barrymore

Wednesday, March 18, 2015

Trisomy 18 Awareness Day

I've tried for days to come up with something "important" or "profound" to say about today, and it just hasn't happened.

I'm afraid I'm a jumbled up mess of thoughts.  There's an explanation of what Trisomy 18 (or any trisomy) is over on the right-hand side of this blog, but that only skims the surface.

It can't possibly touch on the grief and pain that comes with being told that your child won't/can't live.  It can't hold a candle to the joy when you see that little heartbeat on the ultrasound, after fearing that the lack of movement signaled his journey was already over.

Definitions don't show the fear when your baby "forgets" to breathe, or a doctor refuses care.  They can't light up the room like a smile or a giggle from that same silly child who has fought more battles than most people can even imagine.

Words can't convey the sorrow we feel when a child passes on, even if we haven't met them in person, the grief that rips at our soul, or the niggling of guilt that somehow, we've been passed over, and what did we possible "do" to deserve to keep our little one.  Yes, survivors guilt is very, very real in this world I now live in.

It's sitting on the porch on a warm summer's evening four years ago, holding my frail, tiny baby, hooked up to a 50 foot oxygen cord, wanting so badly to be able to walk out carrying him and hang out with friends in the street as kids race by on bikes and scooters.  And being angry that it's not possible, while feeling guilty for feeling angry because so many other moms don't have babies to hold anymore.

It's learning a whole new language, and new skills, and gaining confidence that you really can do the hard things.

It's joy that can't be described, not with mere words.  Imagine the pure love, the eternal optimism of someone who KNOWS who he is, knows his value, and loves everyone around him.  There is no pick-me-up like being in the presence of someone like that.   How many of us actually get to experience true, unconditional love, nothing held back, no judgement, no recrimination, no disappointment?  Just love.

We often say that the 18th Chromosome must hold the "LOVE" gene, because there is just so much packed into his little body.

Trisomy 18 is life packed into a microcosm.  It's cramming as much living into as many moments as possible, because someday, those moments are going to run out.  And tasting the joy and the pain all the more because of the knowledge that it will be brief.  Because no matter how long we get, minutes with our baby who is born sleeping, hours, days, weeks, years, it will be too short.  It is never enough time.

And so while the moments last, we cherish them.  We know we've been given a precious gift, and we are grateful for it.  And that, my friends, is what living is all about anyway.  Because when that day, that someday comes, we don't want to be left with regrets.

When you live in a world where someone has told you your child is dying, you start preparing for someday. Someday, you'll have to decide that even though a surgery is needed, it is just too dangerous to go through with. Someday you'll have to decide when to stop trying to fix problems and to just provide as much comfort as you can. Someday you'll have to decide when treatments aren't working anymore anyway, so it is time to go ahead and stop them. Someday you'll have to decide when to sign papers that give medical staff permission to let your child stop breathing and their heart stop beating. Someday you'll have to make funeral plans for your baby. Someday you'll have to say goodbye.

Someday is never actually supposed to happen. - Carolyn Marie

Sunday, March 15, 2015

Sharpening the Saw

I like tools.  I really like power tools (probably ADD part of me, and yes, I truly do have it).  I've heard several times over my lifetime, that it's important to have a sharp saw.  And if you use your saw, you have to sharpen it.  Using it causes it to dull, and a dull saw is not a fun one.

I think my saw has become dull, and I didn't even realize it.  I had great plans for posting every day or two about Trisomy during this month.  But just like it's hard to use a dull saw, it's hard to work through things with a tired mind.

And for me, it's been a rough several weeks.  I "think" Aaron has finally settled down with his ventilator settings.  Other family members have had challenges.  It's been winter, and even if we didn't have the snow, it's still been darker.  I don't do so well without the sunshine.  Slowly, without me realizing it, my saw has gotten dull.  I've gotten lost.  And I didn't even know.

A couple weeks ago, though, I stumbled upon a new book series.  I love to read.  I read almost anything I can get my hands on.  But I've discovered in the world of Kindle books that often there's a reason the book is free.  And a lot of times I simply can't finish a book.  I might read the ending just to put a finish to it, but that's it.  Not this time.

Ginny Dye writes a series of books set in the Civil War Era, and I fell in love.  They're historical fiction, and frankly, I don't know how true to life back then they really are.  But the characters, their challenges, their emotions, they struck a cord within me.  As I finished the first (free) book, I couldn't stop.  She currently has seven out in the series, and I'm afraid not much got done around here that didn't HAVE to be done.  I found myself marking passages that stood out to me.  And I found a renewed strength.

Then this week was performance week for some of our kids.  Deborah and Matthew both competed at the National Amateur DanceSport Championships.  The dance world, and probably every other "world" is so funny.  Behind the scenes is very different than on the stage.  There's pinning and gluing, twisting and stretching in weird gyrations.  Spraying and painting of strange colors in order to look "natural."  And then out on the floor, it all looks so easy, so natural, at least if it's done right.

I think that may be a metaphor for what causes so many of us to struggle.  We only see what happens on stage in other people's lives.  But what happens on stage only lasts a few minutes.  The high school team has practiced for hours every week since the beginning of school.  They danced their three minute routine twice.  Six minutes on stage, hours and hours behind the scene.

But we're only oh too aware of what happens backstage in our own lives.  We can't see the pain from pulled muscles that others are dancing through.  The whole idea is to make it look smooth, natural, fun.  While the whole time, our own aching feet and strained shoulder are screaming at us as we try so hard to catch our breath while not coughing up a lung 'cause we've caught a cold.

We don't see the burnt (or forgotten) dinners at other special needs homes.  We don't know that they are struggling so hard to make ends meet that ol' Abe Lincoln on the penny is screaming 'cause he's being pinched so hard.  We don't see the siblings who feel conflicted 'cause they love their brother so much, but also feel left out and like they need to handle hard things on their own.

And we don't realize that our saw can't hardly cut a piece of paper, let alone the hard Black Maple that our lives require.

Our week of performances came to an conclusion last night with the middle school Grand Concert.  Joseph told me (warned me?) before it started that I had to pick a favorite piece.  Yeah, right.  I love music, and as long as it's done well, how am I supposed to choose?  And there was a lot of really, really good music.

But hands down, the one that spoke the most to my soul, was "Consider the Lilies of the Field."  As the third verse spoke of  innocent children who suffer, of their pains, tears filled my eyes.  He suffered for them, and carries their pains.  And maybe that's Aaron's secret, his perfectly imperfect heart. He trusts his Savior fully, completely, and He has made Aaron's heart golden.

And if I will learn to trust Him as Aaron does, He will do the same for me.

"Consider the Lilies" by Troubadours and Cantabile

I need to keep my saw sharpened, and allow the boiling water to soften me.  I need to trust my Savior.   And remember that there's a lot more work that goes on behind the scenes in everyone's life than I see on stage.

"The same boiling water that softens the potato hardens the egg.  
It's about what you're made of, not the circumstances."
Author Unknown

Tuesday, March 10, 2015

Supervising Homework

Aaron's job today was supervising homework.  He did a pretty good job, too.

He's learning at school as well.  Today his nurse said he did really well with his word chart.

That's where he's got some words and pictures and he responds to questions or activities by indicating the right card.  He can point to it or just fix his gaze on it.

Right now, his main focus is yes, no, more and all done.  Someone was tickling him today, and they wanted to know what he wanted.  Silly boy kept signaling "more, More!"  Yep, he loves to be tickled and his siblings are pretty quick to oblige.

At home, Daddy was giving him a back rub and I was trying to work with him, but he seemed confused to me.  I KNOW he loves his back rubs.  As soon as you start, this little boy who spends almost all of his time lying on his back rolls almost all the way over to make it easier for you to get to his back. If you stop too soon (and "too soon" is defined by stopping after any length of time), he reaches back and tries to rub his own back.

I was showing him his cards, and he kept looking at "all done."  I knew that wasn't right.  Except when I went to look closer at the cards, it was "more" and "all done" was on the other side.  Yep, I think I was the one who was confused.

It's day ten of Trisomy Awareness month, and this is our snapshot on what's going on with Aaron.

“A good snapshot keeps a moment from running away.”  

Eudora Welty

Sunday, March 8, 2015

Let's End the Label "Incompatible With Life"

To sign this declaration, please visit http://www.genevaperinatalcare.com/
A few weeks ago, I wrote about when we first discovered that Aaron was going to have more challenges than the rest of us.  (click here for that post.) That was on a snowy Thursday morning.  (Some things are just imprinted in your mind, you never forget.)

The next Tuesday found William and I at Utah Valley Regional Medical Center, meeting with a Maternal Fetal Specialist.  We were given the doctor's name and the time to be there.  In a situation like that, you don't negotiate, you just make it happen.

The tech came in and did an ultrasound, then Dr. F came in.  I think that's when we first met her.  She looked at the images that her tech had taken, and spent more time getting more views.  I was laying on the table, William was to my left, she was to my right.

I remember, she looked at us, eyes full of compassion, put her hand on mine, and said, "I'm so sorry.  I have to tell you, I think there's about a 98% chance your little boy has something called Trisomy 18."

I started crying.  She asked if I knew what that was.  I said, "It means he's "incompatible with life.""

And just like that, our course veered off in a whole new direction.  But we were so fortunate.  She told us from the beginning that there would be hard decisions to make, and it was her job to make sure we had the tools to make them.  She would follow our direction, and we were free to wait to make decisions, and to even change our minds.  But she would do whatever she could for us, and for our son.

Immediately, we told her we would be carrying to term, or however long his heart continued to beat.  That was our starting point.

But I remember asking, over and over as I learned more, "Why can't he live?"  He didn't have any vital organ defects that would make it impossible.  Some kids with Trisomy do, some kids without Trisomy do, too.  But his vital organs all looked pretty good.  And I just couldn't understand.  My doctor didn't know either.  All she could tell me was, "we don't know why, they just don't."

But as I searched the internet, I started finding children, living children with Trisomy 18.  I got excited, so did she.  We just didn't know.

And that's where this is going.  Knowledge is power, and we need more of it.  This week, on Wednesday, there will be an initiative presented to end the term "incompatible with life."  Because those three little words have so much power, power to mislead, power to wound, and power to destroy.

No, not every child with Trisomy 18 will live.  Not every child with 46 chromosomes will live.  But let's learn together, let's find the options.  Let's give support.

This week, there is an initiative being presented at the United Nations in Geneva to end the labeling of unborn children as "incompatible with life" and give support to moms who choose to carry to term.

You can sign a petition to support this decision.  And YES, your voice does matter.  Show that life, beautiful, precious, fragile life, is important, and so is hope.  It will only take a few minutes.  I think it took me less than two, and I expounded on my reasons why I was signing.

Please, for Aaron, and for the other moms and dads who are not given any hope, any support. Because my experience with my doctor was not the norm.  It was the exception.  Everyone should get a chance at life.

"If you knew that hope and despair were paths to the same destination, 
which one would you choose?"  -Ginny Dye

Thursday, March 5, 2015

Silly Boy

Aaron was having a fine ol' time tonight.

Every so often, he manages to unhook his feeding pump from his tube and feed his bed instead of himself.  I put absorbent pads under his blanket in an effort to not have to change the WHOLE bed frequently.  Usually it works.  Not today.

Today I came home from a meeting and found he'd unhooked himself again.  This time, he put it up by his head, and had wiggled his way off the blanket so it was just on the sheet.

Yep, gooey formula all over the bedding, saturating his bib, and permeating his trach ties.  Yuck.

On top of said sheet was his blanket, the absorbent pads, and ALLLLL his toys and equipment.  Major excavation needed to change all that out.

So here he is, funny boy, just watching mom while he continues to fiddle with his g-tube button, trying to pull that out, too.

Most of the time, g-tube feeding is easy peasy.  You all know those three hour meals where the kid doesn't eat a bite 'cause it's "yucky?"  Well, not him.  He eats all his veges and fruits without complaining.  Well, most of the time.  I guess this is his way of reminding me that he's going to make his opinions known, too.

And if that's what he's doing, I guess I'll take it.  I was feeling grumpy and out of sorts at having to do all the bedding changes, climb around in the bed, stretch the sheets and so on.

And then I remembered that I've got a lot of friends who would give ANYTHING to be changing bedding again.  So we sang, and he laughed at me.  And I pinned his right arm down and wrestled his left one while trying to get him cleaned up.  And he laughed at me some more.  Am I a lucky mom or what?

In a Throwback Thursday effort, here are a few of my favorite pictures of our little guy from the past.  Ain't he just the cutest?

 And finally, a great big "Happy Birthday" to my oldest son.  Twenty-one years ago he came into our lives and we were so grateful to have him here and healthy.  I'd spent six weeks on total bed rest, and then had to still take it easy to keep him inside long enough.  I knew then that it wasn't necessarily good for a baby to not bake long enough.  I've since learned how many challenges can come and how real they are.  I'm so grateful for his example, for his love and perseverance.  You're amazing, David.  Can't wait to see you in seven more weeks.

Lo, children are an heritage of the Lord ... Happy is the man that hath his quiver full of them.  Psalms 127:3, 5.

Wednesday, March 4, 2015

Snapshot on Today

This was about the third time he managed to fling
his lion over the side of his bed.  Then he lays
there, looking at it, until someone rescues him.
I think he's got us well trained.
Today was a pretty typical day as far as life with Aaron goes.

This morning when I took report from the nurse she reported that he'd had a good night, slept really well.  When he woke up, I found he had a pretty boogery nose though.  Gotta love it, right?  I mean, I always swore I wouldn't have snot-nosed kids.  And I didn't!  Until I had kids that is.

But when I got home from running carpool his school nurse said that he'd had some more, and there was some color.  Just like that, we went on snot watch.  You know, there's storm watches when the conditions are ripe for issues, and storm warnings when it's actually occurring.  We were on snot watch.

Then this afternoon, I had a follow-up call with our trach whisperer at the hospital.  We've been having to use his secondary settings, the rescue settings, almost daily because of struggles.  So I talked with her last week about switching to them permanently, but with some modifications to help him breathe a little more comfortably.  This past week has been good from a breathing standpoint but I've consistently had to use more oxygen.

See, breathing actually has two components: ventilation and oxygenation.  Ventilation, or breathing has to do with gasses in and gasses out.  Oxygenation is about oxygen exchange with the cells, that oh-so-important gas our cells need.

I was beginning to wonder why it seemed that I had to choose which one was going to work well, oxygenation or ventilation.  I mean, seriously, BOTH are necessary.  It didn't seem fair.

She suggested that it actually might be the different methods of support, and said she'd do some research into it.  AND she also thought it would be good if I sent a shout-out to mamas in the special needs world to see what others had experienced.

You know, my special needs family came through for me.  I mean, I was looking for some fairly specific parameters.  I needed the same ventilator, oxygen dependent, and experience in switching modes of ventilation.

BINGO!  There is a wealth of knowledge these mamas have.  And yep, it's because the vent is working differently.  I can deal with burning more oxygen, as long as it doesn't mean he's struggling more.

We have a international medical conference coming up this summer, right here in Salt Lake.  I'm on the local SOFT board and we're raising money to attend.  Can I tell you how excited I am to meet other Trisomy parents in person??  This is really a once-in-a-lifetime event for us, at least for Aaron.

See, you can't fly with oxygen tanks.  Yes, you can use a portable oxygen concentrator (POC) on an airplane, but that won't work with a ventilator.  Vents need more flow than a POC can deliver.  Which means that any location not within driving distance is simply not an option.  And having him stable enough to even drive a distance is hard, too.

But this time, it's in my very own backyard, so to speak.  And we're going to be there, by hook or by crook.  'Cause having support like I got today, knowing that these other people really "get it," they've been through the talks about end of life, the heartache, the joys and the fears, you just can't put a price on that.

And we need each other.  We really do.

And that "snot watch?"  Fortunately, it's expired.  He's looking good.

It is not so much our friends’ help that helps us, 
as the confidence of their help. ~Epicurus

Tuesday, March 3, 2015

Special Kids, Special Parents

I've had people tell me (and I've probably told people this about themselves pre-Aaron), "I don't know how you do it.  I could NEVER do what you do."  Um, well, actually, if you had to, you would.

I remember a few years before Aaron's birth, a friend was taking her child up to Salt Lake a couple times a week.  And I thought, no way!!  No way I could arrange my schedule to do that.  It was too full!

Ha!  Showed me.  Not only can I do that, I have.  In fact, I've moved into the hospital and not walked outside for days on end.  Not something I really recommend, but somehow my quirky personality (and my computer window on the world) makes it work out okay for me.

But see, I don't think it's because I'm "special" or "awesome" or whatever.  It's because I've been given a strength I didn't have before.  Like any other parent, you do what has to be done.  And the blessings that come back are even better.

Besides, when you get to spend time with someone who loves whole with their whole heart, who exudes that unconditional acceptance, your contribution is still lacking in comparison to what you get back.

And this goofy kid just keeps on playing.  He used to have a small mobile and would tangle up the bells that hung from it.  Well, that mobile and the tiny cradle that it went with, have long been put away.

But now, he's got a great big jungle gym that his toys hang from.  And he still tangles it up!  Bigger bed, bigger hanger, and bigger toys with a bigger tangle.  He makes me laugh.  Apparently, we make him laugh, too.

Either way, yesterday my boys were asked if having Aaron around was good for our family.  Every single one of them were adamant that Aaron had only made our family much, much better.  I don't know what we did to deserve him, but I'm so grateful we've been blessed to have him in our home.

Monday, March 2, 2015

Then and Now

This is Aaron getting ready to come home for the first time.  He is two weeks and two days old. His clothes are preemie sized, and rolled up in the arms to fit him.  The feet are floppy because his legs don't quite reach down that far.

I didn't think I would see the day we would get to bring him home.  I truly hoped we would, but didn't dare count on it.  When they told us he could come home, I was beyond giddy.  I was barely two weeks post C-section, so I wasn't supposed to be lifting things or running up and down the stairs.  My poor kids.  They were working jobs where they had to be at work at 5:45 a.m. and got home about 9:30 p.m.  And I had them doing the running and lifting.  FINALLY, they persuaded me they needed some sleep.

He was so, so tiny.  Only 4 1/2 pounds.  And while I didn't want to think about it at the time, I knew he wasn't sent home to live.  He was sent home to die.  Had a typical baby been having the apnea episodes and desats he was having, had their labs looked like his, they would not have been discharged.

I knew that, and I was (sorta) okay with it.  I'd known of other babies who they tried to get "stable" before sending them home, and after a while, their bodies just were too tired and gave up.  I wanted to get him home, to make the memories we could before he went Home.

Today, though, today he's happy and thriving.  Today Aaron went to school.  He had a great time!  Apparently it was kinda a sad day at school.  His nurse reported that there was a new student who was having some separation anxiety and was upset.  Several others picked up on his sadness.  But not Aaron!  He had a great day, worked hard.  He even got to play in wet sand which I'm told was a big hit!

Today he weighs just over 40 pounds.  I remember weighing 40 pounds.  (Yeah, I was a beanpole.)  He loves reading books with his brothers and playing on a yoga ball with his nurses.  He thinks it's funny to grab my hands when I'm trying to cut his trach ties or his g-tube tapes.  And if you say something he doesn't agree with, he'll shake his head while smiling to let you know you're wrong!

Yep, our "incompatible with life" little man is definitely "compatible with joy."  And we're so grateful he is.

Let us relish life as we live it, find joy in the journey, 
and share our love with friends and family.
President Thomas S. Monson

Sunday, March 1, 2015

It's That Time of Year!

It's March, the third month, tri- and all of that.  So naturally, it's Trisomy awareness month.  Before Aaron, I really had no idea what  Trisomy was, or even that it existed.  I knew (sorta) about Downs Syndrome, but not that it involved chromosomes or anything.  Really, I pretty much knew nothing.

But we all have chromosomes, most of us have 46 of them, 23 pairs, one of each from mom and one from dad.  If you're missing a chromosome you have a monosomy, if you've got an extra, it's trisomy.  And there you have it.

But just like in a recipe, you can't take half an ingredient out, or add in another half of one ingredient and expect to get the same results.  So when the chromosomes get changed, so does the way the body reads the "code."  And that's how we got our Aaron.

There was nothing we did, or didn't do, that caused it.  Except sometimes we wonder if God knew we needed him in our lives to help us get where we need to be.  Whatever it is or was, we're grateful for His sending Aaron to our home.

So my focus this month is on sharing what we've learned by having Aaron in our lives.  Today's just kinda a down and dirty "this is trisomy" one.  But check out how much he's grown!  The ultrasound was about five years ago, and the picture of he and Michael was from this week.  He LOVES it when his big brother climbs in bed and reads to him.  Just like the others, I think he's got the book bug.

I may not get something put up each day on his blog, so feel free to "like" his Facebook page and catch the glimpses into our crazy, mixed-up, wonderful life.

Knowledge is the true organ of sight, not the eyes.