Friday, April 29, 2011

When It Rains...

We made it this far.  We limped through living off of little more than a wish and a prayer every month in the income department.  We paid down debts.  Moved forward.  Finally bought a house.  Took the plunge and traded in our car for a newer one.  That itself was a hard financial decision to make.  While the car we had to begin with wasn't paid off completely, it was getting there.  But Noel's ex-wife had beat it to death and it was on its last legs.  We had no extra money whatsoever, and the list of necessary repairs was growing ever longer.  So we sucked it up and committed to a new car loan, thereby avoiding costly repairs.  It was the best decision we could've made at that time.  When we bought our house, our real estate agent said that I had the best credit he had ever seen in someone my age.  We even gimped it through the financial strain that went hand-in-hand with Madi's ordeal-thanks to lots of friends and family and generosity.
Now this.  My husband busts his butt.  He has worked for the same guy off and on for 16 years or so.  He genuinely loves his work, and is very talented at what he does.  He probably could make more money somewhere else, but in this fragile economy it's best to just try to stick with what you have and make it work.  Especially when he has really good medical insurance.  For the past couple of years, it has been happening more and more frequently that Noel doesn't get his paychecks on time.  Sometimes they will be a day late, sometimes two.  More often it's a week, ten days, a whole pay period behind.  It's kicking my ass, to say the least.  I can make one dollar stretch to two most of the time but you can't make something out of nothing.  We no longer have a savings account.  We have several late payment "dings" on our credit report.  We now have credit card debt again.  It's very frustrating.
Why does this keep happening?  Well, it depends on who/when you ask.  Sometimes, it's that they are waiting on pay from an insurance company, the county, for a big job to be done, for the mail to bring some check.  Sometimes it's because there are problems with taxes and accounting.  Sometimes it's just some idiotic clerical error-like overdrawing the vendor account, which then saps the payroll account. 
So I have been keeping track.  Of every late fee, disconnection/reconnection fee, interest, bad mark on our credit.  I feel I have a right to collect these fees (once money comes in) as I did nothing to cause them.  We did our part-my husband gets up every day and goes to work-but for some reason this company fails to appreciate what we are going through.  Don't get me wrong, they were wonderful when Madi was going through all that she went through.  They were there when we needed them, and were as flexible with scheduling as was possible.  But when we come to the pay, well, it gets to be a war.  You see, Noel's boss seems to think that if we didn't live the way we do, we wouldn't have money problems.  Even with late paychecks.  What does that mean, anyway-"living the way we do"?  We live in a mobile home, precisely so we have lower mortgage payments.  We only have one car.  (Yes, it's new, but as I stated above, it was a decision that was the best for us.)  We don't go on vacations.  Noel and I do not go out.  Our weekends usually consist of grocery shopping and hanging out with my mom.  A lot of the furnishings in our home are used, and most of the ones that aren't came as a gift or were deeply discounted.  My children's clothes come mainly from gifts, or from thrift stores and garage sales.  I have worn the same shoes since I was pregnant with Madi.  (What, they are super comfy!)  I clip coupons like a maniac and sign up for every mailing list and sample I can in the hopes that I get some good coupons.  I really shouldn't have to justify our lifestyle.  We try very very hard to be the best people we can be, and to do it within our means.  I just want to scream at him "Do you even REALIZE what we have gone through, you F**KHEAD?"  I USED to have a back up plan.  I USED to have savings.  But all this has sapped every single last resource I had on tap. 
Meanwhile, Noel's boss, his wife, and their seven children sit in their giant house and shut themselves off from the world, not realizing that it's MY husband who put them there. 
Yet here we are.. waiting.  Again.  And the end doesn't seem to be in sight.  Noel's boss probably is well aware that he has us between a rock and a hard place.  There aren't jobs out there right now for what Noel does.  He can't qualify for unemployment unless his company actually has a lack of work and has to be laid off.  The company is never lacking for work to do, it's getting people to pay that is causing such havoc.  Stuck.  That's what we are.  I am sure that it will get better.  In all reality, we are blessed in many other ways.  And money really doesn't mean everything to us.  We have made it so far, and i have great faith that the Lord will bring us through this storm too. 
I think I just need to find an umbrella...

Wednesday, April 27, 2011

Year-round giving with LOVE

Hi Friends & Family 
 I know this is early, but I know some of you like to keep your eyes peeled for bargains year-round, so I thought I would plant the bug in everyone's minds now.. and continue to do so off and on in the coming months.
As you all probably know, we like to give back to the people who did so much for Madi when she was sick in the hospital pre and post-transplant.  One of our favorite things to do is collect things for the Child Life department at St. Mary's Hospital in Rochester.  New toys, books, movies and video games can help a child to pass the time, feel a bit better, or even assist in physical and occupational therapy.  The Child Life department also holds a "Santa's Workshop" in the winter so that parents of kids who are in the hospital can "shop" for their children's Christmas gifts.  Having a kid in the hospital is a huge financial strain, and to be able to give these parents and kiddos good birthdays and Christmases as well as help them during their stay to get better and stay better is a very easy thing to do.
This year I hope to bring tons of items to the Child Life department for Madi's transplant anniversary and/or Christmas.  Next time you are out and about, if you have a few extra dollars, maybe you could think about these kids.
Even the "dollar spot" at Target has fun items like pens, markers, books, and stickers.
Here are some basic guidelines:
*No stuffed animals
*No bubbles
*All items must be brand new
*Items such as lip gloss, chapstick, Play-Doh, etc must be individually wrapped.
*DVDs and video games are always welcome, provided they are not "Rated R"
If all else fails, pick up a gift card to Target, Bath n Body Works, Walmart or iTunes.
We will collect them here at our house and then when it gets nearer to delivery time, I will post a reminder again.
If you have any questions-maybe about what's allowed and what's not, or what may be needed, please feel free to ask away!
Thanks for your consideration!

Thursday, April 21, 2011

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.

Wednesday, April 13, 2011

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.

Monday, April 11, 2011

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
*Baby toads, and the wonder they inspire in my kids
*Sleep Number beds
*Good chocolate

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?

Wednesday, April 6, 2011

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.