Thursday, January 13, 2011

Seven years of reality

Seven years ago, I had no idea how my life, my reality, would change.  This amazing little boy with the cutest blue eyes immediately stole my heart and changed my view on the world in an instant.  And if that wasn't enough, he keeps teaching me and changing my views over and over again. 

My First Born was born with a bicuspid aortic valve.  When the cardiologist told us to take him home and treat him like a normal child, I was like, yeah right.  I'm scared to death as it is and now you're telling me he has a congenital heart defect!  However, we did just that.  Yes, we took him to his cardio check up appointments and when we thought about it, it was super scary but for the most part I was able to kinda push it to the back of my mind and not focus on it every day.  This was how I coped with the fear.

Then in 2007, on Husband's 30th birthday, he had his first open heart surgery.  The surgeon made his aortic valve a better functioning valve.  This procedure was supposed to give him more time with his own anatomy and allow him to grow more.  The plan was to eventually perform the Ross Procedure where they put his pulmonary valve in place of his aortic valve and then use donor tissue for his pulmonary valve.  You don't need a really awesome pulmonary valve because it just pumps blood to your lungs, but your aortic pumps blood to your whole body so it has to be kick ass and in good shape and not clunky or leaky, like his was when he was born.  On that surgery day, and the recovery days following, I have never been more afraid in my entire life. 

Then we entered another phase of his life.  School.  Not only did he have a heart defect, the poor guy also has ADHD and is possibly on the Autism spectrum.  He's had trouble with every daycare and his first school when he started Kindergarten.   Everyone expected him to get better or for us to say some magic words to get him to behave at daycare or school.  It just wasn't going to happen over night.  From our trials with the daycares and his first school, I learned not to judge other people, and parents especially.  I learned that I have to fight for my kids and seek out all the knowledge and help I can to get them whatever they need.  Finally, we moved him to a public school that was more than willing to help him succeed and he is doing it.  Now instead of mostly "red" days, we have mostly "green" days.

Last year, on April 12th, FB had another open heart surgery.  The repair on his aortic valve wasn't growing with him and working for him like we expected.  He needed another surgery.  The plan was to build him a new aortic valve out of his pericardial tissue.  His surgeons are the best and we were confident going into surgery that everything would work out as planned.  You'd think by now, we'd know better.  Plans, schmans...with this kid, no way!  He ended up getting a mechanical aortic valve implanted.  They were, however, able to implant an adult size valve which should mean no more surgeries. 

After seven years of raising this amazing, intelligent, caring, sweet and remarkable boy, I have been through so much.  WE have been through so much.  We also have a different reality than most parents.  Most kids get the occasional cough or virus.  Most kids don't have 2 open heart surgeries before they even get through Kindergarten. 

He has taught me patience, perseverance, love, acceptance and so much more in his short seven years.  I am truly a better person because of him and definitely a better Mom.  If all of this had been easy, I would not be the person I am today.  I know it.

Here's to you, my sweet, sweet boy on your seventh birthday.  Mommy loves you more than you'll ever know and I cannot wait to learn more from you.

Tuesday, December 28, 2010

Ahh, December, why did you come and go so quickly?

Apparently, I suck at staying on top of this blogging gig.  I'm going to make it my New Year's resolution to do a better job at blogging more regularly.  This is the kind of resolution I might even be able to keep this year, since it's something I actually want to do. 

Anyway, we had a wonderful Christmas.  I was so happy that Husband's brother and brother's wife were able to come to town to spend Christmas Eve with us.  It really made the day special for Husband.  He's had a tough year and it was so great for them to be here. 

We only had one major minor issue this year.  We went over for dinner at a relative's house on Christmas Eve and the boys ended up getting super wound up and were running around the house like crazy people.  So we made a swift exit back to our house and then we forgot to set out the cookies for Santa and to sprinkle the reindeer food on the lawn.  By the time I realized this, the kids were asleep and the house was gonna have to be on fire if I was gonna get them back up for anything!  I put out the cookies and just tucked the reindeer food away for next year.  Yay, check that off the to do list for next Christmas!  Look at me, all planning a year in advance and stuff.  Christmas morning was great and Santa was good to the kids and me.  Husband got me a necklace from Tiffany's that has my initial on it.  I love it!  The boys got me a new purse and I love it too.  I musta been a good girl this year!  

The boys were happy with their gifts too, for a while.  Then they told me they were bored.  I told them to go play with their new toys and FB said, "Yeah, we did that already."  Seriously...

Another fun thing happened right before Christmas that I forgot to mention, we got a new furnace.  yay.  I'm sure you can just hear the excitement coming through the screen.  Merry Christmas to us.  I mean, I'm all for being warm when it's flipping cold outside but, do these things really need to cost so much money?  I wonder what the markup is on a furnace...

Now that Christmas is over, we're gearing up for the month of birthdays!  FB, my best friend's daughter, my mom, another friend's daughter, my sister in law and of course, ME...we all have January birthdays.  We're planning an Army birthday party for FB.  He loves all things Army and camo so we're going all out with camo shirts for all the kids and basic training activities, it should be fun.  Eventually, I hope to get a post up with the details from SB's Superhero party.  It went off w/o a hitch and all the kiddos had a great time.

I hope everyone had a great Christmas and here's to a New Year, hopefully filled with many blog posts

P.S. By the way, I just wanted to take a minute to say, "thank you, thank you" to Kate from The Big Piece of Cake.  She has commented on my blog twice (so far) and for me, that's like someone famous is reading MY blog!  SQUEEEE!  Thanks again, Kate, you rock!  And so does her blog, so go read it!

Thursday, November 11, 2010

My Baby is Four!

I cannot believe it.  When did it happen?  Are you sure that's right?  He can't possibly be four years old.  I was just pregnant with him six months ago, I'm sure of it!  OK, enough with the denial.  I mean, look at the cuteness that is before you.  There's no mistaking that he's cute, always has been, inside and out.  Everyone has a kid who says and does cute things, but he's just so darn happy all the time.  Unless of course when he's being dramatic.  And oh, the drama!  He still fights us on the going to bed battle.  He says, "I'm not tired," or "I'm hungry," or my favorite, "I'm very very coughing."  He pulled this one not too long ago.  He laid in his bed and whined for a good hour about how he was coughing.  The child NEVER coughed during this entire episode.  Not once. 
I hope I never forget about all of these cute and wonderful things he does to make me smile and light up my day.  I know someday he'll be big and a teenager and I may not think that he's so stinkin' cute so I suppose I'll just use my blog to preserve this date and time of his life.  Here are some more very cute things he says: our dog's name is Indiana, but he calls her "Indianda," everything that happened in the past was "yesterday," even if it was a year ago, and everything that will happen in the future is "tomorrow."  When I asked him what he wanted for his birthday dinner, he said "bah-sghetti," and he at every last bite. 

He's having a superhero birthday party on Saturday and I'm not even close to being ready for it.  It will all come together at the last minute, like always.  It will be fun though to see all the kiddos dressed up like superheros. 

I'll leave you with this.... 
those feet are enough to make me want another baby! I can still smell them when I see this!  And like I told you, he has always been cute!  Right??

Thursday, October 21, 2010

He MUST get that from his Daddy...

With our First Born, clothing options have never been an issue.  He lets us pick out what he's going to wear and in the past he has even worn things that were uncomfortable without complaint.  Like one time I was helping him get ready for bathtime and I noticed that his pants had left a mark on his belly.  I said, "do these pants hurt?"  He confirmed that, yes, they did.  And of course, the motherly guilt kicked into overdrive when I thought about how many times he had worn them lately.  The point is, he will wear anything you ask him to wear without any thought as to why or even if it matches or not.  But don't be confused, he has always been well adorned given that his Grandma is a shoe and clothing shopaholic.  And it's the good stuff too.  Thanks, Mom.

Then along came Second Born.  With all the GAP jeans and cargo pants and cute Polo shirts and the altogether amazing wardrobe items he was able to inherit from his older brother, he was pretty much set from the beginning.  Of course, we still shopped and bought him even more super cool clothes.  He was gonna be styling, for sure. 

One of SB's first words was "button."  I thought, "Oh, that's so cute, he's pointing to my button and telling me what it is, such a SMART boy!"  Apparently not so much.  Don't misunderstand, he's definitely a smart boy!  But he wasn't telling me that it was a button.  He was fully aware of what it was and I think what he was trying to say was, "Woman, get that button away from me...and make it quick!!"  Yes, he has issues with buttons...and zippers...and pockets.  He refuses to wear anything that has a button or a zipper or a pocket.  And he'd really prefer everyone else to refrain from wearing clothing with buttons, zippers and pockets.  He will come up to me and tell me, "Mommy, I like your sweater, it doesn't have any buttons."  Thanks, I guess.  So if it isn't enough that his clothes have to be free from all buttons, zippers and pockets, they also have to be "cool."  The "cool" status can also change based on his mood.  Some days, soccer shirts are cool, some days, they aren't.  I don't really understand the issue he has with clothes.  Most people say, "isn't that funny?" to which I think, yes, it is....except at 6:30 am when you're trying to get him dressed for the day and he refuses to wear anything that's clean in his closet.  But my *favorite* is "He probably has sensory issues."  I mean, sure that could be it but, really??  Do you think you can diagnose my child just because I tell you he doesn't like buttons.  I mean, it rings true for any type of discussion about your kids.  People automatically assume that they know exactly what the problem is and how to fix it.  Maybe, just maybe, he just doesn't like buttons.  I don't like turtlenecks because I don't like things touching my neck.  It makes me feel like I'm choking.  Maybe this whole "issue" is inherited from me!  Who knows, and really who cares?  It certainly isn't affecting his growth or development.  Anyway, I'm going off on a tangent here that could be an entirely different and complete post on its own. 

He'll just always be the kid wearing "soccer" shorts and t-shirts.  I'm OK with that.  It's quirky and it's cute and it's probably something we'll laugh and joke about when he's older.   And if anyone asks, he gets it from his Daddy...

Monday, October 4, 2010


One of our new favorite shows is Parenthood on NBC.  I love it.  It speaks to me.  The other night Husband and I were watching it and the character Kristina was told that she "catastrophizes" everything.  I looked over at Husband and said, "that's me!"  I totally do that.  I cannot watch my boys play without thinking about how they're going to fall or how they might break their leg or arm.  And then throw into that the fact that FB takes blood thinners for his mechanical aortic valve and it's just more than my heart can take!  Husband tells me and the boys all the time, "it's all gloom and doom with Mom."  And he's so right, because it is.  I always think of how things are going to go bad at any minute.  If I'm driving on the interstate, I think about how we could wreck, about what would happen if something happened to me or the boys or whoever else is in the car with me.  Who would take care of the boys if something happened to me or Husband or both of us?   What if something happened to Husband and I?  My mind reels with all the horrific scenarios over and over.  I suppose worry is part of being a mom.  I wish I didn't worry so much and take everything fun and turn it into some awful catastrophe but I can't help myself.  For a long time, I thought this was just something that I did.  Now I know, "catastrophization" isn't just me and there's a little comfort in knowing I'm not alone here. 

Tuesday, September 28, 2010

Talk about boy crazy

Last night we had our first Cub Scouts Pack Meeting.  WOW!  I mean, WOW.  There were about 50 boys, all elementary school age running around in a not big enough room and I think Husband's head was going to explode before we'd even been there 10 minutes.  I didn't really start to lose it until we Den Leaders took the boys outside to have snack and run around.  And, boy did they ever run around.  I suppose it was good for them to get some energy out but they were making me a nervous wreck.  I just knew someone was going to bleed at any moment.  Some boys were just running around chasing each other.  Some were rolling down the hill.  Some were wrestling.  It was chaos but I think they were having fun.  It didn't look like fun to me, but I'm not a 6 or 7 or 8 year old boy so what do I know?  Eventually one little boy got kicked in the head when he and another were rolling down the hill.  He cried for a minute but seemed to get himself back together soon enough.  Overall, things were going rather well considering the banshees were generally staying in the confined area where we could watch them and yell to them when their wrestling got rough.  Then about four of my Tiger Cubs lost the "brass" slides that hold their neckerchiefs around their necks.  I yelled out to the group, "We're missing four Tiger Cub slides.  Everyone look for them and the first one to find one gets a prize!"  Yes, of course, I had no prize.  You should have seen them run around looking for those slides!  They were boys on a mission!  I couldn't believe how well that worked to get them all focused on a task together.  I'm going to save that and use it again later someday.  I didn't even really feel bad when the first boy came running up the hill, grinning from ear to ear, screaming, "I found one!"  When he handed it to me, he said, "What's the prize?" I just smiled and said, "You get a round of applause and a high five."  He gave me that knowing sneer and walked off.  Yeah, sorry kid, life's full of disappointment.  Maybe I taught them something last night after all.

Friday, September 24, 2010

But wait, there's more!

The Kindergarten saga continues...

We had our regularly scheduled check up in February with our pediatric cardiologist.  He said things were not holding out from FB's first surgery as well as they had expected.  He wanted to get another x-ray and to also talk about FB's case at his heart board meeting in a couple weeks.  We knew that day FB was going to have surgery again, and sooner rather than the later we had planned. 

A week or so went by and we got the call.  "Yes, we do want to go ahead and do another repair on his aortic valve.  We'll set him up with an appointment with Dr. Amazing Surgeon again and go from there.  We're thinking about having it during his Spring Break."  Oh, you mean in just another month and a half?  Again, GREAT!  So we cried and worried and waited. 

At the same time they were still deciding about his IEP at school and for what services he would qualify.  We had our IEP meeting on Thursday before Spring Break and we had a meeting with the surgeon the next day so the school couldn't implement his IEP until after he recovered from surgery and returned to school.

His surgery was originally going to be another repair of his aortic valve.  Then when we met with the surgeon, he told us his plan was to fashion new aortic valve cusps out of his pericardium tissue.  OK. Sounds good.  We trust in your judgment, of course.

Surgery day arrived, after being postponed a week to accommodate the doctor's schedules, and we were again scared to death.  Our prayers were answered again and he made it through the surgery.  We did end up with a mid-surgery change in plans, however.  FB's aortic root was too big to make the aortic cusps out of his pericardium but big enough that they could go ahead and implant a mechanical valve.  This means that FB will need to take blood thinners for the rest of his life and that includes finger sticks to check his levels regularly.  Oh, and he ticks.  As in, you can hear his mechanical valve ticking all the time, which makes hide and go seek terribly difficult.  But other than that, he's the picture of health.  We also hope that he will never need to have surgery again, at least not before he's 70 or so and we're long gone!  Hallelujah! 

He went back to school about 3 weeks before school was out for the summer.  We survived those few short weeks without any issues and were glad to start our summer off on the right foot.

Long story short, FB has had so much shit to put up with in his life, it's just ridiculous.  I suppose other people have worse things and I shouldn't complain because in the end, he's fine now, heart-wise.   First grade has been pretty calm so far.  He's had a few incidents this year, the headlock for example, which won him a recess-free day on the following school day.  Fortunately, they haven't sent him home yet this year, which is awesome.  But we are surviving. One Day at a Time.  And of course, if you call my phone or leave me a voice mail during school hours, I'm liable to answer with an exasperated tone because you have just given me heart palpitations.  Don't you know it kills me when my phone rings? Don't call me unless it's an emergency, or in fact aforementioned headlock has once again occurred...