Facebook: The new high school drama?

I resisted joining Facebook for a really long time.  I found it boring, and more than a little unfriendly to users.  I was used to the relative ease of MySpace and didn't really want another "me" page, especially-gasp!-one you couldn't personalize with blinky things and cool backgrounds.  Fast-forward a few years, and I am a bona-fied Facebook addict.  It's become my way of keeping in touch with friends all over the country.. really all over the world.  I rely on Facebook to reach out to other heart families which has helped me to feel a sense of belonging I think is essential when you have a child with special needs.
In the past few months I have become astounded at the petty bull crap that passes for socialization on Facebook.  People have to turn every little thing into a debate, even when it wasn't intended to be.  I am all for a good, healthy debate.  But there is no sense of maturity, respect, or humanity.  Accusations and snarky comments have become the norm.  It has come to the point where people attack others on every little thing they say and do.  I am so disappointed.  Why has it gotten to be like this?  Who do we think we are anyway offering our two cents when it wasn't even asked for? 
What finally tipped my hand and led me to write this particular post is what I witnessed today.  I have a heart mom friend who I have never met in person whose beautiful child defies all odds.  It's nothing short of miraculous that she's alive given the complexities of her heart defects, which in turn have affected most other areas of her life.  Today, she was accused of making up her child's heart problems!  What the..?!?  You can't fake that zipper scar, the blue cast to the skin around the mouth, the oxygen tank she totes around when she is having a particularly bad day.  Just because it may be something you don't understand doesn't give you permission to spout off about it.  Just because you are a fellow heart mom or a mom with a child who has another significant medical need does not make you the expert on all things cardio-thoracic.  I was actually deeply ashamed of the CHD community for the way that this mother was attacked.  The filthy accusations and name-calling were reminiscent of a schoolyard fight.  Parents, whether of a medically fragile child or one who is perfectly healthy, already have their work cut out for them without having to worry about what others think.  No one is perfect, and everyone makes mistakes, but there is no excuse for being hateful, cruel and accusatory.  Aren't we all supposed to be adults here?
Unless a child has been beaten or neglected in some way, another person's way of parenting isn't wrong just because it's not how you may handle it.  Even if you disagree with someone, why does it have to be a toxic end to a friendship?  Don't you think this world would be mighty boring if we all agreed on every little thing?
At the end of the day, ALL children are blessings.  Absolute miracles.  We should be thankful for them, no matter what their afflictions may be.  The best we can do is to love and care for them the very best that we can. 
Even if you have walked a mile in someone else's shoes, it doesn't mean you have the same blisters as they do.  Or that you treat the blisters in the same way.  So if you have nothing nice to say, don't say anything at all!!  (Isn't that something your mom told you as a child?)  Or, in Facebook terms, if you don't "like" someone's status, feel free to not leave a comment.

Proud to be American

I remember when it was announced that Obama had won the election.  I was in my apartment's living room, trying without success to get Madi to eat something.  Begging and pleading with this child of mine to take in something, anything, to nourish her sick body and help her heart be as strong as it could be.  As Mr. President stepped up to make his victory speech, I got chills.  I got goosebumps.  And I cried.  Hard.
For me, it symbolized hope and health for Madi.  You see, the biggest worry in my life is getting the proper medical care for both of my kids.  With Sydney it's not such a hurdle, as she is healthy.  Madi is a bit of a challenge.  We are lucky enough at the moment to be on Minnesota Care insurance.  We pay a monthly premium just like with any other paying insurance plan.  Without the MNCare, Madi would not be here today.  So I always wondered what would happen as she got older.  We all knew insurance companies do not take on people with pre-existing conditions.  With Obama's new healthcare laws in place, I no longer have to worry about that.  He has made it so that she cannot be denied the care she so desperately depends on. 
Let me be clear here: I do not agree with every decision that the President has made.  I don't agree with every decision any leader makes.  I know that so many hate him, and it makes me very sad.  Every president in history takes on the previous president's failings as well as their successes.  The only thing people see, though, is which things don't get fixed rather than which ones do.  For that reason, I am a firm believer that no matter who is sitting in the Oval Office, it is imperative that as Americans we all band together as one country.  All this disjointedness is what gets our country in trouble.  Think about it:  if there was a major split and conflict of interest between the members of, say, a baseball team, how would they function?  Not very well.  We need to be unified in the belief that America is the best place in the world. 
Case in point:  I have a friend whose daughter has Down Syndrome.  She is loved like you would not believe, and a treasured addition to their family.  She gets the best medical care and therapies that her family can find for her, even if it means driving a distance to get that for her.  In other countries, kids with DS or other serious medical conditions are sent to an orphanage.  If they are not lucky enough to be adopted by the time they are around 5ish, they are sent to an institution to live out their days there.  Their only human contact is during essential cares, and sometimes these children are even tied to their cribs.  What kind of life is that? 
When you want to take a shower, what do you do?  Just turn the water on and get in, right?  This is a luxury that many people all over the world do not have.  Many people walk for miles every day just to get enough water to drink and cook with.  A lot of that water is full of diseases that kill many people every single day.  These are all diseases that are easily preventable, and again, something we don't usually think twice about.   Here we have access to clean water, food, good schooling, clothing, technology, electricity, and medical care.  Yet for so many, it's not enough.  There are too many people out there who are so stuck on their material things that they don't realize what a blessing their life is.  They aren't proud of their country.  And they should be.  Maybe we're not always the home of the brave these days, but we still are the land of the free. 
It's time to stop taking it for granted and band together as one country, there for each other, grateful for the priveleges we as Americans have.

Raindrops on Roses..

As a little girl, I was lucky enough to have my Great Grandma Lou in my life.  A lot.  I spent so much time with her that I distinctly remember asking her to marry me with a ring I had won at Chuck E Cheese.  She was one of my best friends, and when I lost her I was twenty-one years old.  Most people don't get to have their great-grandparents in their lives for that long, if at all.  One of my favorite memories of her is eating ice cream sundaes and watching The Sound of Music for the bazillionth time.  Oh, how she loved that movie!  I remember dancing around her teeny little living room, singing and dancing to the musical numbers.  Grandpa Woody, kicked back in his recliner, would just watch and smile.
To this day, if The Sound of Music is on TV, I will watch it.  Nevermind that I have the DVD or that I have honestly seen the movie more times than I can count.  It still draws me in and brings me back to when I was a kid, dancing with my Gram.  It's a reminder of a simpler time in life.. before I had to worry about bills, sickness, and making dinner.  It's spring now, the Lenten season.  I think of my Gram a lot.  It's her birthday in a couple weeks, so I am paying homage to my first best friend (besides Mom & Dad and siblings of course) by reflecting on the simpler things in life.. my "Favorite Things." ("My Favorite Things" song)

*The clean smell after a good rain
*Good jellybeans
*Big, thick books and the smell of the new pages as I turn them
*Old fashioned, beautiful-smelling roses
*Baseball season
*Fresh-mown grass
*Clean sheets that were dried on the clothesline outside
*That "newborn baby" smell
*A brand new hairdo
*Andes Mint Pie
*White Hot Cocoa from Caribou Coffee
*The entire Christmas season
*Leisurely walks with the kids
*Taking that perfect picture
*Lilacs
*Baby toads, and the wonder they inspire in my kids
*Sleep Number beds
*Good chocolate
*Cheese

There are so many more, but now it's time to go tend to two of my other favorite "things": my kids.

What are your favorite things?

Fitting In

I have never been one of the popular ones.  In high school, I was too chunky for cheerleading, too "goody goody" to be cool, and way too smart to have fun.  Don't get me wrong, I had lots of great friends, some that are still around.  But I never really felt I had found my place in the world.
This past weekend, we visited the new Minnesota SeaLife Aquarium at the Mall of America.  We were there for a couple different reasons-the first was that it was Madi's 5th birthday that day.  The second was a celebration for our friends whose son Cameron is now one whole year past his latest heart surgery to repair defects from Hypoplastic Left Heart Syndrome.  (Treatments for HLHS)  We also met up with one other heart mom and two of her kids.  It was a fun-filled day.  Both Sydney and Madi were well-behaved and really enjoyed seeing all the fish. 
It was during this MOA trip that I had quite the "aha" moment.  While sitting down to have lunch, I brought out my "arsenal".  Hand sanitizer, wipes and Madi's noon dose of medication.  My friend didn't even bat an eye.  In fact, she herself was diligently applying hand sanitizer to her childrens' hands as well as her own.  Most times when we are out and about, these prevention measures that we take to protect Madi's immunity are usually met with weird looks, whispers and sometimes pointing.  I try my best to just ignore it, knowing that they have no knowledge of why we look like the biggest germaphobes on the planet. 
But that day, in the crowded mega-mall, it sunk in.  Though I no longer care about fitting in, I finally found a place where I belong.  Being a part of the heart world sucks a lot at times.  There are way too many doctor's visits, blood draws, medication, surgeries and unfortunately deaths.  But sometimes, as crazy as it may sound, it's a great place to be.  I would give anything to not have to know what it's like to have a child with a heart problem.  Since there's nothing I can do about that, I have learned to make the best of it.  In so doing, I have found a group of friends that are the epitome of unconditional friendship.  I love all of my friends.  Heart moms and dads or not, they are all in my life today because they are special to me.   Sometimes, though, it's nice to be in a situation where explanations aren't necessary.  It is during these times that my life feels a bit more "normal" than usual.  Most likely because it's normal to them.. and they get it.

To vaccinate or not to vaccinate?: There is NO question.

Today while Madi's teacher was here, we got on the subject of school.  Madi will be entering a school-readiness preschool program in the fall if all continues to go well with her medication changes and she has had no rejection episodes.  (How did she get to be five friggin years old already?!?!  Yeesh!)
Like any other parent out there, I have my concerns.  Will she miss me?  How will I do with her away from me?  Will she make friends?  Will she finally have tamed her urge to pick her nose? (Dear Lord, please!)
Most importantly, though, I have serious worries about things that most parents never think twice about.  It all comes down to vaccines.
I know, I know.  It's a heated debate no matter who you talk to about the issue.  I, for one, see no harm in vaccines at all-in fact the opposite is true.  Not vaccinating is what's so dangerous.  This year in Minnesota, there have been twelve reported cases of measles.  Twelve.  That's unacceptable.  Now there are whispers of polio showing back up on the scene.  What next?  These are all almost completely preventable diseases.  Why risk your child getting something that could seriously sicken them, put them in the hospital, cause them brain damage, or even kill them?  As a mother who has paced the halls of the PICU till there was practically a groove worn in the floor, take it from me: you do not want your child to have to be there.  For any reason.
In Madi's case, it's vitally important that the people around her are up to date on her vaccines.  Due to her medications, her immune system is compromised.  This is to prevent rejection of her heart, and while it poses some risks, it's necessary for her to live the best life she can live.  Because of this, she cannot receive any vaccinations that are live.  This means that she cannot get the chicken pox vaccine, or the second dose of MMR (Measles, Mumps and Rubella) that most kids have gotten.  We will be forced to rely on what we call "community immunity."  In essence what that means is we are counting on others around Madi to be able to ward off the disease; thereby protecting Madi from something that her body is not protected from.  It's like when a herd of elephants gets attacked and all the big elephants surround the little ones. 
Transplant is a serious change in how we live our lives.  Something that may just make you or your kids have a simple runny nose can kill her-and a lot easier than some may think.  Somehow, someway, we have to figure out a way to ensure that when Madi is in school, she will be in a classroom where all children are up to date on all vaccinations.  I am not sure how that will work due to all the privacy laws out there, but I am sure the docs from the Mayo Clinic will have to be on board somehow.  To ease other parents' minds, and mine.
When Madi does go to school, I am sure I will be dubbed "That Mom."  As in, "that mom" who is always asking when the last time your kids were sick was, and breaking out the hand sanitizer.  Yep.  That'll be me.  But it's a duty I am fully ready for. 
We have fought too damn hard to get where we are today, and there's no way I am going to let anything stop me now.  Please read up on vaccinations at the CDC's website here and get educated before making any rash decisions on whether or not to get your kids immunized.
You will be equipping your child for the battle against an army of ugly diseases.  Offering them the best protection you can.  You will also be protecting those out there, like Madi, who don't have a choice.  And for that, we say thank you.

Decorating NONsense

I am beginning to realize why tornadoes so love to flatten trailer parks.  I live in a very nice mobile home in a fairly big park.  It is a nice park-there are no cars up on bricks or lawnmower parts strewn across the yard.
However, if you take a walk through where I live you are bound to see some interesting things.  In fact, I don't even have to leave my living room to witness the oddities.
Case in point: the neighbors have a hole on the side of their house.  A chickadee flies in and out of it every single day, many times a day. 
What the hell?!?  If some random bird flew through a flippin hole in my siding and into my house, I would not be nonchalant about it.
I thought that just for giggles, I would give you a glimpse into my little corner of the world so you could laugh along with me at the things I see.  Here goes nothin!
*Christmas lights on nightly.  Still.  It's almost April.
*Plastic flowers in outdoor planters.  Yep, plastic.
*Strobe-like lights in the driveway.
*In one yard: a ceramic lion painted bright gold, an ancient limo, a psychedelic-colored VW, and two statues of dogs lifting their legs on a rock.
*A grill entirely encased in tin foil.  It looks like someone trying to build a homemade rocket, but they do actually cook on it.
*All forms of plastic and ceramic geese, donkeys, and other animals.
*"Windchimes" made of old CDs.
That is just a small sampling, and it's not even springtime yet.  I cringe to see what will crop up once the snow melts and people get outside.  I know that each person has their own style and sense of outdoor decor.  I truly get that.  But what is it about living in a trailer park that makes people invent such odd ways of accenting their little yards?  I mean, I am all for recycling and upcycling and using what you have.  But there's already such a stigma surrounding living in a trailer park, so why make it worse? 
Myself, I prefer soft green grass, rosebushes and a hanging basket or two.  I save the craziness for inside, and the only "trailer trash" we have here is what's in the garbage can.

Happy Birthday Sydney Jo!

I cannot believe my baby girl is two years old.  Time really does fly!
Two years ago, at 9:34am, my Sydney came into this world.  Weighing in at 7lbs 12 oz she was quite a bit bigger than Madi had been as a newborn and she was bright-eyed and ready to eat.  It was such a relief to meet my little pumpkin and finally be able to hold her and kiss her and all the fun things that go along with having a new baby.
Sydney has always been such a laid-back kid.  She is so content with everything in life and always has a smile on her face.  I think we can all learn a lesson from Sydney.. let's be happy with what we have and try to smile every single day-even if it's for a teeny tiny reason-instead of griping about the little things.  No matter what life has thrown our way, Sydney has always rolled with the punches and been a good example for how we all should be. 
I have a lot of guilt about the early days of her life.  Madi had just gotten out of the hospital yet again when she was born, and shortly thereafter was when Madi got her second ambulance ride, followed by pacemaker implantation and then the road to transplant started.  I pretty much moved into Children's and subsequently St. Mary's hospital and in so doing I missed out on a lot of Sydney's babyhood.  I knew she was just fine where she was but it hurt to not be a part of her everyday life.. to hold her and snuggle before bed, rock with her and feed her, and just be there for her.  Now she's two, and snuggling is not usually on the list of preferred activities for her.  Ha ha.  But I steal the kisses and hugs when I can and truly relish every one of them.  If there's one thing I have learned from being a mom, it's that time goes by all too fast and you should treasure your children.  They are our greatest accomplishments, biggest gifts from God, and the best blessings you could ever have.
My silly, sweet, beautiful little girl, Mommy loves you more than you will ever know.  Happy 2nd Birthday!