Very superstitious..

Today, during a session with our wonderful school team, something was pointed out to me:  "Boy, Sydney sure is a kid that is really into routine, isn't she?  Is Madi that way too?"
Hmm.. yep.  They both are.  And you know what?  I did a bit of thinking this evening and have come to the conclusion that they get it from me.  And I, despite my very best intentions at just being an "on-demand' kind of mom, have become a Scheduler.  Even worse, I am a Superstitious Scheduler.
Before my children got sick, I did schedule things here and there, but for the most part I kind of just let them determine what they needed and when.  Then I got thrown headlong into the cardiac unit of Children's Minneapolis and skidded across the first of many visits there.  When I was able to pick myself up and dust myself off, I latched onto the first coping mechanism that came my way: something in my brain just clicked somewhere and decided "You. Must. Write. Everything. Down."  So I did.
I find it oddly comforting, writing.  It doesn't really matter too much what it is either.  It started with medication lists then progressed to vital signs, liquid input/output, calorie counting, and the like.  I have to say that it has come in handy more than once-being able to quickly spout off the days "stats" faster than any nurse can read them off of  a computer screen.  Now that we are past the transplant days-that seemed so long ago and now are quite a blur-I can look back to my oversized calendar pages and see exactly where Madi was at on any given day.  I think it makes me appreciate how very far she has come that much more.
Being a mom of kids with medical needs has changed me in a lot of ways.  I never would have anticipated, though, the level of superstition that has come over me.  It's like I slip into my "rituals" without even realizing that I am doing them anymore.  For instance: if we have to go to the Mayo Clinic, I have to have my house totally clean before we leave.  Just in case, for some strange and unexpected reason, we would have to be admitted.  When Madi first got sick, my mom stopped by my house for something and had to clean up waffle batter that had been sitting out since the ambulance came and took Madi to the hospital a few days before.  I hear it wasn't pretty.  Also, the night before we go to Mayo, I have to take out everyone's clothes and lay them out-in certain places-and then reorganize my diaper bag and medicine bag for the twentieth time.  Following that, I always write a Post-It note with things that couldn't be packed ahead of time on it.  Like meds that are in the fridge.  Cause, you know, I might forget my kids' heart meds.  Pssh.  I also absolutely refuse to make solid plans that are for after the date of a Mayo Clinic appointment.  Again just in case we were to get unexpectedly admitted.  Go ahead, shake your head.  I am too.
But cut me a little slack here.  It's these small (if not slightly obsessive) "rituals" that get me through what can sometimes be brain-deteriorating feelings of helplessness.  Don't judge this Superstitious Scheduler.  It's not like I have a voodoo doll.
Yet.

Dear Donor Family: A Christmas letter

Dear Donor Family:

There will never be a Christmas gift that will ever touch what you have given us.
I cannot imagine the strength and unselfishness that it took to make such a brave decision in the face of losing your child.  A child that was ten months old, taken from you so senselessly.  But you looked past your pain somehow.  Maybe it was God that helped you to make this decision.  Maybe it was something you always believed in.  Either way, you decided to give another person's child (or children) the chance to live.  To be a child.  To carry on.
Today, my daughter is in school.  She learns and grows.  She is pink and aglow with life.  You made this happen.  You took my baby from the brink of death, and made her into who she is today.
I know that there are no words or gestures that will take away the pain you must be feeling.  The ache of losing a child is something that never leaves a parent, and while I do not know how you are feeling, I can respect it.  The enormity of it.  The finality of it.  The longing.  I wish that this never happened to you.  To any parent, for that matter. 
I so hope someday to meet you.  To put my arms around you and hug you with every fiber of my being.  To hear about your child and see photos.  To place your ear to Madi's chest so that you can hear this beautiful, strong heart that saved her life.  To let you know that your child lives on in our child, and that we will do everything in our power to treasure, to safeguard, and to honor this precious heart and the meaning behind how it came to be Madi's.
Our family will never need an angel atop our Christmas tree.  We have a guardian angel watching over Madi whose heart beats strong and sure in her chest.  There can be no greater gift than that.

Oh, Christmas Tree!

Some people's Christmas trees look like they could be in an issue of Martha Stewart Living magazine.  They are beautifully coordinated, with bows and bells and globes that all go with a certain color scheme.  The ornaments are placed just so, with the perfect amount of greenery peeking out between each one. 

Not my tree!  I have to say, even though others' trees are absolutely gorgeous, I like mine and my mom's the best.  Why?  Because they are full of memories.  Each ornament has a story to tell, and it adds to the experience of the tree-decking to be able to recall all the details behind each decoration.  My husband likes to give me a hard time because of a few "infamous" ornaments made by yours truly.  Two of them are miscellaneous scraps of wood slapped together with glue and doused in glitter.  These I made in preschool.  The one that tends to bring the biggest amount of laughs, though, is my Virgin Mary ornament.  I made that beauty in Sunday school when I was very young.  It's a simple paper cutout of Mary with a hole punched at the top, strung with some old yarn.  The image of Mary was one that we colored with our crayons.  For some odd reason, I chose to color her eyes red.  Hmm.. Either Mary had a serious case of pink eye or she was possessed.  At least that's what my hubby says.  I just laugh with all of the rest of them, because I am thankful.  To some, these little scraps may not be worth saving, but to my mom they were bits of undeniable treasure.  I am so glad that she had the love and warmth to savor them, and the foresight to hold onto them so that I could fully appreciate them once I had my own tree.
Our Christmas tree is chock full of ornaments.  But still, we continue to get them.  They commemorate so many things.. there are the two clay pregnant ladies for the two Christmases that I spent with babies in my belly.  The one that is in honor of our very first home.  One from the first year Noel & I were together, and one for the year that we got married.  Our cat, Sheena, has several ornaments on the tree-many featuring her picture-and Noel's dog Harley, who is gone now, has a special star of his own.  Each year we get Madi & Sydney each a new ornament to add to their collection. Madi & Sydney help us to decorate the tree, of course, which often results in clusters of ornaments in weird places-piled on top of branches, flung into the center of the tree, laying underneath it, or sometimes they turn up in a toybox a few days later.  My "Baby's First Christmas" ornament, shaped like a little pillow, takes its place of pride near the top of the tree every year, so that the cat doesn't mistake it for a toy. 
Then we sit back and enjoy it.  No popcorn or cranberry garlands drape my tree.  I don't have matching sets of colored balls, nor do I have a plethora of beautiful sparkling bows.  But my tree?  Every year it has many a story to tell.  It's one of the best parts of the holiday season, and one that I cherish every year.

Welcome To Holland, Part 2

 If you are a special needs parent, like me, you have probably heard of the beautiful essay entitled "Welcome To Holland".  If you haven't, you can read it here.

 Anyway, this morning a friend on Facebook, Kristi Pena-read her son CJ's miraculous story in this previous post from my blog-posted this follow-up to that much-beloved "Welcome To Holland."  Like its predecessor, it's beautiful, well-written, and resonates so much with what my life is like.  Though I haven't been "in Holland" for over a decade like this writer, it's been awhile now since my first foray into this world, and I would like to think that through the stress, the fear, the anger, I have grown.  I hope you enjoy this as much as I do.

Welcome to Holland (Part 2)" by Anonymous
I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.
I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.

Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land.

I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.
I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift.

I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.
I have come to love Holland and call it Home.
I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Why I cannot "think pink:" anymore..

I am sure what I am about to write will offend some people.  In fact, it will outright piss people off.  But I have something to say, and if I can't say it on my own blog, where can I say it, right?
So here goes nothing:
If I see another "pink for breast cancer" piece of merchandise, I may just puke.  Ahh, that feels so much better to get off my chest.  For those of you that are already up in arms about my above statement, allow me to explain.
I do not think that breast cancer doesn't deserve awareness.  You will never hear me say that it's not a deadly, scary and tragic disease that sickens and claims the lives of way too many people.  It's not that I do not think that the people afflicted by it deserve all the best access to treatment and research available.
But the cold hard facts here are this:  according to the American Cancer Society, survival rates in breast cancer patients that are now 5 years out from diagnosis are around 89%.  That's pretty dang incredible.  Advancements in medicine have made it so that there is much more hope for breast cancer patients, and though the treatment is often long, invasive and gruesome, it's gotten more and more effective.
This, sadly, is not the case for children with Congenital Heart Defects.  Did you know that for every single dollar raised by the American Heart Association, only about one penny goes to pediatric research?  This totally blows my mind.  One in every one hundred children have a CHD.  They are the number one birth defect, and the number one cause of death in children.  Sorry to say, America, but a lot of our adult cases of heart disease have more to do with eating habits, smoking, and lack of exercise than something you were born with. 
The majority of research dollars that do get allocated to CHDs come from families that have been afflicted with one.  People struggling to pay their own medical bills, people that have lost a child to the awful CHD monster.  How can we possibly sit back and let this continue to happen?
It bothers me to my very core that breast cancer awareness is so commercialized.  Why can't childhood illnesses-like CHDs or leukemia, say, get the attention that breast cancer gets?  How much money from that pink broom you purchased actually goes to breast cancer research?  If you are that passionate about breast cancer research, don't go buy a broom.  Donate what you would've paid for that pink broom to a cause that supports breast cancer research.  Don't fuel the consumerism that has overtaken us all.
As for me, I don't need a pink can opener.  I would love to have a blue & red one, though.  Those are the colors of CHD awareness.  Bet you didn't even know that.  Or how about an orange line of pens & pencils, benefiting leukemia research?
It's time we recognized the diseases that are killing our children.  Causing them pain and awful surgeries, procedures, and treatments.  Forcing them to practically live in a hospital, missing out on what a normal child should be experiencing.  Our children deserve to have hope for a future, too.
So save the boobies, by all means! 
But while you're saving boobies, save a child too.

WAR

I am a worrier.  Always have been, probably always will be.  Motherhood was bound to make it worse.  Throw in a coupla kids with heart problems, and I am lucky to be among the still sane of the world.
You see, cardiomyopathy is a thief.  It robs families of so much.  Things that you normally would take for granted, like sports, eating correctly, sleep habits, diet, school routine and more.  Everything changes.  Everything. 
Cardiomyopathy has made me second-guess every little thing I do.  I even find myself looking through my recollections of both girls' babyhoods and trying to figure out if I "should have" known something or should have done something different.  I know that I should not try to look back on what's already gone.  I really do.  But sometimes it cannot be helped.  For instance, when you get shown the xray of your daughter's enlarged heart.  Should she have had an echocardiogram six months ago?  Would it have made a difference?  It's not enough that it knocks you off your feet to get a diagnosis like this not once but twice.  No, the cruelty of being a worrier is that certain thoughts and ideas lodge in  your brain and don't let go no matter how hard logic and hope tries to make them leave your thoughts. 
Cardiomyopathy is the devil on my shoulder.  It pesters me, day in and day out.  It points out all the things it has done-taken appetites, restricted growth and development, enlarged hearts, caused scars and pain.  It's proud, this devil, of the havoc it has wreaked upon my life.  It's even more proud that it has attacked BOTH of my children.   It sits there in its smug existence, trying its very hardest to sap every ounce of mental and physical strength I have.  Some days it takes its toll more than others.  Today being one of those days.  I wonder sometimes how I am going to be able to do this.  To raise two children with complex needs and not lose myself along the way.  Fighting for every calorie, every inch in growth, every teeny percentage of improved heart function.  Watching my children get poked, prodded, scanned, cut and invaded.  Dosing them with medications every single day.  Having to tell them no to things that other kids are able to do.  Being the bad guy.  I want to scream sometimes.  To cry out to this awful disease to stop taking and taking and taking.  It's time for me to do some taking of my own.
I am taking charge.  I am slogging through the muck and mire and saying this:
You can make me worry.
You can make me cry.
You can make me exhausted, self-pitying, and sad.
But you cannot make me stop fighting.
If I have to drag myself through the mud on my face to get to something my kids need, so be it.  One of these days, Cardiomyopathy, I am gonna drop-kick that devil off my shoulder. 
And laugh with my children about what we have accomplished.
Consider yourself warned, you ugly rotten devil of a disease.  This is war.

Lemons

Life hands you a lemon.  You think, "When life hands you lemons make lemonade."  Good advice, you think, and you make yourself a glass.  And onward life goes.
But what happens when you get a whole crateful of lemons dumped unceremoniously into your lap?  What do you do then?
You lean on a friend.  It doesn't take a rocket scientist to tell you that the very best friends in life are there for the good times, but even more so for the bad ones.  These special people think of us when we are happy, sad, angry, depressed, excited, crabby, anxious, and everything in between.  Some of them even have an uncanny sense for when you need someone the most, and offer up some means of escape.
I spent the later hours of the evening-and into the hours that end in a.m.-at a friend's house last night.  We didn't do anything fancy.  No wine-sipping or truffle tasting.  (Though there was some fabulous cheese-eating.)  No outings to a bar, concert, restaurant, or nightclub.  We sat at her kitchen table in comfy clothes and slippers and played board games.  Yep, we're talkin Scattegories and dice games here.  Ate some deliciously greasy, cheesy pizza with Diet Coke.  Followed by various sweets.  We talked-a lot.  We told lots of stories-some that we have all heard a million times but are still great to hear.  Mostly?  We laughed.  Till we cried, in some instances.  It was fantastic.
Did we talk about the fact that recently I had somehow acquired a whole crate of lemons?  Yes, for a bit.  But then we moved on.  Those lemons are just a part of this life of mine.  It was refreshing to forget about them for awhile, and just be me.  Fully enjoying the company of M and her mom, and reveling in the fact that there are people out there that know the whole me.  That appreciate me for every part of my life, good and bad, and have helped me to cope. 
Last night, I was able to start putting those lemons back in that crate.  They aren't gone, and they never really will be, but they are a bit more contained.  I am feeling a bit more contained too-and really refreshed.
That, blog readers, is the sweetest gift at all.

The "Right" Way to Parent

This morning, I was reading through some comments left on a friend's Facebook thread.  There was something said there that made me think, and, quite frankly, offended me as well.
This mom was talking about her decision to circumsize her son.  In her post she defended her decision (good for her!) and then went on to say she did "everything else right, such as co-sleeping, extended nursing, and not vaccinating."  This brings me to a few things:
#1-If she didn't view circumcision as "right", why did she do it?
and, probably more importantly, #2- who is she to say that co-sleeping, extended nursing, and no vaccines is the "right" way to be a parent?
I did not co-sleep for either of my kids.  I have heard too many horror stories of parents rolling over onto their kids in the middle of the night and suffocating them.  I myself would probably never ever sleep knowing there was a newborn in my bed, just for fear that I would hurt them somehow.  Motherhood is a sleep-deprived experience in and of itself, so why make it worse?
On to the circumcision discussion.  I am going to make that one short, sweet, and to the point.  It's not up to me to tell another parent whether or not to do it.  And it's not up to others to tell me what to do.  You are more than welcome to have your own opinion on matters, but don't use it as a stepping-stone to being judgmental and mean to people whose opinion doesn't match yours.
Extended nursing?  Yeah, tried that.  Apparently I just wasn't made to be a nursing mom.  I tried with both my children, and my body just decided that it didn't feel like making milk.  I gave it my best shot, and tried just about every idea thrown at me to make my body up its milk production.  It didn't work.  In fact, it just got progressively worse.  So rather than let my kids starve because I was determined to do it the "right" way, I went and bought formula.  And you know what?  It was fine.
That leads me to the last of the topics I have weighing on my heart today: vaccination.  There are so many out there against it, and it breaks my heart.  Smallpox was completely eradicated where there were vaccines given for it.  You cannot get autism from vaccines.  All those medical journals that had studies in them about the autism-vaccine connection have now been pulled from said journals.  The doctor that originally published these "studies" is now under investigation, and has totally recanted his "findings."  On our journey with Madi, we have learned a lot about the immune system.  As Madi's is not normal, and never will be, we cannot give her certain vaccines.  Live vaccines in a person with a weakened immune system can do much more harm than good.  So we rely on "herd immunity" to keep her safe.  The theory surrounding herd immunity is that if all the other members of the population are protected, they will not catch the disease, thereby protecting the person with the weakened immune system by getting rid of chances of exposure.  Without herd immunity, Madi could get very sick.  She could die.
So in the end, who are we to say what's right and what's wrong with an individual's parenting?  According to the mom that made that comment, I did everything wrong.  I take major offense to that.  Let's be real, here.  Every mom (and dad, for that matter) makes mistakes.  There's no such thing as a perfect parent.  Just because my friend uses cloth diapers and nursed her kids till they were one and a half doesn't make her any better than me.
The only "right" way to parent is to love your child.  To do the very best by them that you can.  To teach them to handle what life throws at them, and to let them know that they are miraculous, fantastic beings that are treasured. 
It's that simple.

Floundering

Maybe some of you already know about the crap-tastic news we got last Friday.  For those that don't, we found out that Sydney also has the heart disease that led Madi to heart transplant.  (Sydney's CaringBridge site)

I am feeling many emotions right now.  Sad?  Very.  Scared?  Like you would not believe.  But the overwhelming thing coming through me at the moment is anger.  Deep, dark, anger threatening to boil over and consume everything in its path.  I know it's not healthy to feel this way, but I also know that it's normal. 
I have several reasons for the anger.  One is that after this diagnosis, I got a lot of comments like "Oh well at least you are a veteran at this."  Unfortunately, a lot of said comments came from members of my own family.  It's almost like they are brushing it off as no big deal.  And that's just what I hear from the family members that are kind of in touch.  I have many other family members, that, for whatever reason, have cut me totally out of their lives.  I KNOW they know about Sydney.  Yet I have not heard a single word from any of them.  This, my friends, is where the "boiling" anger comes in.  I was taught from a very young age (from my mom) that family is family, and family is first.  That means that even if you are not speaking to someone, or if you don't agree with them on something, if there's a crisis or something important going on in life, you swallow your pride.  You BE THERE for them.  Even if just to offer a shoulder to cry on, you still reach out and show that you are supportive and you believe that the family is stronger than any adversity that comes about.
I guess I don't merit that support from them.  And I know that it shouldn't bother me as much as it does.  That I have much better-and much more important-things to worry & think about.  But I can't help it.  It hurts to the very core of my being.  This is a hard enough battle to fight without thinking that you have been abandoned.  I lost a lot of friends when Madi got sick.  Now, with Sydney sick as well, it seems like they continue to drop like flies.  Even my children have noticed the difference.  Sadly, they no longer recognize photos of some family members.  That's saying a lot because Madi has a memory like a steel trap.  She even remembers things from before her transplant.
So for now, I am floundering like someone lost at sea.  I can see people in a boat up ahead, but they have their backs to me.  They don't hear my calls.  And if they do hear me, they pretend like they don't. 
Thankfully, there are a few friends out there that are truly "life preservers"-ready, willing and able to reach out their hands and pull me back onboard.  They are like beacons guiding me to shore, where I hope to find healing and peace once more. 
But for them, I do not know where I would be.

Discipline? What's that?

Yes, it's been a month since the last time I blogged.  That doesn't mean that I haven't had anything to say.  It just means that I haven't said what I wanted to say.
Today, my friends, I am done being quiet.
My daughter Madi is beautiful.  She is generous with hugs and smiles, and funny to the very core.  She is imaginative, a dreamer, and a miracle.  She is also a child with some very difficult behavior.
Of late, I have been at my wits' end just about every single day by the time the afternoon strikes.  Madi is moving into a stage in life where she is not listening to me, and where discipline is very ineffective.  She prefers bullying her sister and the cat to her toys, and likes to destroy things regardless of the owner.  It's beyond your average sibling rivalry, though.
See, here's where it gets hard.  Madi had a stroke in 2008.  Actually, it was a series of small strokes.  From the neurological standpoint, she has a few areas of brain damage in the areas of the brain that control cognition and impulse control.  All members of Madi's medical/therapeutic team are very optimistic that over time, since she is so young, the brain will rewire/heal itself.  In the meantime, though, there are some very real roadblocks to her development that we have to get around.
How exactly do you correct inappropriate behavior with a child that doesn't understand the concept of discipline and really could care less if she gets punished?  I am still trying to figure it out.  Got any good ideas?  (We have done all the traditional punishments, to no avail.)
One thing I do not need, however, is criticism.  I can't take it anymore.  Believe me, I beat myself up day in and day out that I am failing somehow at motherhood.  When I get notes home from the teacher saying that Madi's new behavior is throwing herself on the floor when she doesn't feel like doing something, it's frustrating.  I feel as though somehow it's my fault.  It doesn't help me to hear that I am not doing things the "right" way.
I cannot stress enough to people in my life that Madi IS different.  I don't care if you have raised one child or twenty; if none of them had any kind of significant medical history and/or developmental issues, then you cannot compare your parenting experience to mine.   Yes, Madi has made some HUGE gains over the past two years since her transplant.  She has a fantastic team of people that are in our lives solely to make Madi's life that much better, and I am so grateful for them and their hard work.  But she is still not the same as the "average" 5-year old.  There are many challenges that come with behavior when you have a child whose brain is damaged in the very area that controls how and if she comprehends and processes something.  It's kind of like a sieve, I think.  A very ineffective sieve at that.  Things you would never ever think she would comprehend, she does.  And things that "should" be basic knowledge may as well be Sanskrit to her.  Every day is an adventure in learning here in our household.  What worked yesterday, or even five minutes ago, probably won't work at this moment.  So I continue to improvise and stretch my creative muscles to the limit.
It's my hope that someday Madi will look back on her childhood and remember that I was always here for her, fighting for her (and with her, to be honest!) about how she can live the best life possible.
All I want for her is to live her life and be a happy, honest and kind person.  I really don't think that's so much to ask.
If that means that I have to yell at her and put her in timeout 30 times a day for bothering the cat yet again, I guess that's what I have to do.  (Sidenote: I don't see why timeouts are so awful for most kids.  Doesn't a break from it all for a few minutes, totally undisturbed, sound fantastic?  I want a timeout!)
But please, don't tell me I am doing it wrong.  If I was, she wouldn't be the kid she is today.  And the kid she is today is pretty damn terrific, if I do say so myself.

Overindulgence-The American Way?

I feel like I might just barf.
I heard on the radio today that Kim Kardashian is getting married this weekend.  Whoop-dee-friggin-do. Get this: her wedding is setting them back $20 MILLION!  Yes, you read that right.  Twenty. Million. Dollars.  For a wedding.
I do not give a crap who you are, or what your claim to fame may be (What IS Kim's claim to fame, anyway?  Having a huge butt?  Big deal, so do I!)-that's a bit much.
There are so many people who are hungry, hurt, and in need.  Here in the United States as well as around the world.  There's famine in Africa.. people are walking for weeks to try to find food for their children, and many of them do not make it.  Or what about the orphans?  I have a wonderful friend who is in the process of bringing their beautiful boy, Ethan, home from Eastern Europe.  (See earlier blog posts for more on this awesome journey!)  Where Ethan is from, orphans are treated worse than cattle.  These children are literally tied to their beds!  Their bodies are atrophied and twisted.  They have never known the warmth of a soft bed, being forced instead to sleep in Soviet-era metal cribs with thin, hard mattresses.  They have no toys.  Most of them do not get out of bed.  Ever.  They are in desperate need of a loving home.  A family.  Hugs and kisses.  Medical care.  School.  Toys.  Basic human needs.  One of the posts on a friend's site mentions an eleven year old girl who weighs 10 pounds!!!  Only ten.  And another little girl's arm measures three inches in diameter.  Take out a measuring tape.  Check out how very small that is.  And these are not extreme cases.  Well, they are, but not in the sense that they can be considered abnormal.  Where these kiddos are, this IS the norm.  Some of the photos of the children that are in these Eastern European orphanages remind me of photos from concentration camps.  It's sickening.  Heart-breaking.  Utterly and terribly wrong.
So, if Kim Kardashian were listening right now (or any of the other countless "celebrities" who flaunt their money like no one's business) I would tell her this:  Shame on you.  Spending that kind of money on a one day event when there are children dying everywhere.  Kids who need love and support.
While you feast on your wedding day, there is a child taking their last breath while tied to a metal crib no better than a cage.  They don't have to die.  Imagine how many people that twenty million could help. 
What's the real crime against humanity here?

Where did I put my straight jacket?

It's been a rough week in my household.
For starters, I am pretty sure that I have a cyst on one ovary, which is making everyday life quite a bit more painful than anyone would like.
You know how animals can sense when you aren't feeling well, and they seem to go out of their way to try to comfort you?  I think my kids sense it, too.  Only they are doing their best, it seems, to put me in a mental ward before the week is out.  In fact, the thought seems pretty nice right about now.  Soft padded rooms, nice sleepytime meds..ahem.  Sorry.  Back to what I was saying.
Besides filling my days with the normal wife/mommy stuff, the kids have been into all sorts of mischief.  Mostly Madi, though.  I am not sure why all of a sudden she has decided to act in this manner.  I know, I know, ALL kids have bratty streaks.  I get it. Doesn't mean I have to like it.
Here's just an example.  Yesterday Madi decided to take the poop out of her diaper and smear it all over the place in her room.  All in the amount of time it took me to go to the bathroom myself.  She made sure to get it ground into the carpeting really nicely, too.  After cleaning that mess up (and let me tell you, Resolve carpet cleaner mixed with feces makes for a vomit-inducing scent) Madi decided that she was going to beat on her sister and the cat for the rest of the afternoon.  She was in time out at least 5 more times.  And this was all between 4 and 6 in the evening.  She pulls hair, she slaps, she kicks, she pushes, and she takes stuff away.  No disciplinary method has worked thus far.  I know that the part of her brain that controls decision making and impulse control was damaged with her strokes, but I know she knows right from wrong.  Not to mention that none of her team thinks that the amount of damage done is permanent.  I am at my wits end with her.  I love her SO much, and it makes me so angry, sad and frustrated that she acts this way.  What am I doing wrong?  If this goes on much longer, I may need one of those "special"  jackets.. you know, the ones where you hug yourself?
I feel like a parent failure a lot these days.
I am so afraid for what school will bring.. I don't want to be the parent of "THAT kid"; you know, the one no one wants to play with or be around?  But yet I fear that's what will happen.
Tomorrow we will be heading for the Mayo Clinic for yet another checkup.  I will be happy for the reprieve, as Sydney will be at a relative's house and the cat will be at home of course.  Madi will be happily strapped into her carseat, where she cannot be mean to anyone or destroy anything. 
Ninety-five miles there, ninety-five miles home.  Seems like a perfect time to restore my inner peace.
And thank the Good Lord above for in-car DVD players.

Two Years

Two years.  Maybe two years doesn't seem like such a long time.  But two years=730 days=17,531 hours or so.  Now it seems like quite a bit, doesn't it?
Why am I obsessing about two years?  Well, two years ago today, we loaded Madi up into a LifeLink ambulance that took her to the Mayo Clinic.  We were "supposed" to be going down there to wean Madi off of her heart meds, while completing her transplant evaluation.  It was our hope that she would be able to be extubated within the week or so.  We missed her voice, her smile, her eyes.  It had been so long at that point since Madi had been herself.
Little did we know that 18 hours after her status was bumped up to 1A on the transplant list, Madi would get her new heart.  At the time we were so turned around with everything going on in our lives.  It was literally like someone ripped the rug out from underneath us.  I could not even think straight, and I was full of doubts about whether we had made the right decisions regarding her care.  I think if your child is battling something that is exceedingly difficult, a parent cannot help but have doubts, guilt and questions on top of the usual fear.
Thankfully, we did make the right decisions.  And in the two years' time since that ambulance ride, I have learned a lot.  Most importantly I have learned that it's about the little things in life.
This afternoon, my kids and I laid on the living room floor.  We read books and sang songs.  We played with the shape sorter and Madi "made" Sydney and I some pasta with her dishes.  (She also made cat food, she said, but that obviously was not for us.)  Then both of my girls flung themselves at me and bounced on me.  It was like they had coordinated that moment to wrestle with their mom.
As the nosepieces on my glasses slammed into my eyeballs (Madi tried to sit on my head), I found myself thinking "Two years ago, I would've given anything for this."
Another family looked past their grief and through their tears to give my daughter a second chance.  So when I think of those moments two years ago, I think of our donor family too.  They gave so much to my family.  On every one of those 730 days over the past two years, I think of them. 
And hope they know how much I love them.

Let's help bring Ethan home!

Yesterday's post was on friends.  Today I am going to post about a specific friend who is embarking on the adventure of a lifetime!
We met the Lindquist family when Madi was in the PICU in July of 2009, right before her transplant.  Even though their daughter, Sophina, was struggling with her own issues post-surgery, they were always there for us when we needed them.  Connie would stop by at least once a day with a hug for me, and they would lift my spirits SO much.  It was my first experience with a fellow heart parent.  The first time I really remember saying "Oh, she gets it.  I mean really really gets it."  What a blessing!
As if Connie wasn't busy enough with her girls at home-Elizabeth, Alexandra, Catherine, Victoria and Sophina-she and her husband Scott (currently working a whole state away to help his family!) have heard the Lord's call to help the orphans of the world.  Their son, Ethan, will be joining their family from Eastern Europe as soon as his adoption is finalized.  Click here to meet Ethan! 
First of all: how handsome is this young man?  I am so happy for Ethan, and for the Lindquists.  The conditions in Eastern Europe are dismal at best for kids with disabilities like Ethan's.  It would seriously make you sick to hear about how these beautiful, bright, sweet children are treated.    Here's where it gets even harder to stomach: it is unfathomably expensive to bring these children home.  Connie and her family are willing to drain their savings account and exhaust every last dime they can to bring Ethan to them.  (All the Lindquist girls are more excited than you could possibly imagine as well, in case you were wondering!)  So why do they want to do this?  Well, read this post from Connie on her blog, Obeying God's Call to hear it directly from her.  And if you aren't moved by this family, you can't be moved by anything.
The Lindquists are currently fundraising in a very very special way.  They are going to take their familys' old clothes, cut them up, and sew them into a quilt for Ethan.  Here's where it gets really good: for every $20 donated, they will sew YOUR NAME onto this quilt!  That way Ethan will know how many people came together to bring his family together. (Ethan's Quilt Fundraiser)
Can you spare $20 to save an orphan's life?  I know you can.  If you can spare more, that's awesome of course, too!  Please visit the Lindquist family's blog to read about this very special family and their quest to obey God's call.  Let's get their adoption grant to skyrocket, and bring Ethan home!

"How wonderful it is that nobody need wait a single moment before starting to improve the world."- Anne Frank
 

My Friends..

You know what?  I have some AWESOME friends.
They may not be the friends I had before I had kids.  They may not even be the same friends that were around a lot before Madi got sick.  But I have to say, they are all in my life for a reason.  And the ones that aren't anymore?  Also for a reason.
Some of them I do not even know in "real" life, but only through the world of Facebook.  And that's ok.  Because honestly, these people are there for me by the dozens, and I do not know where I would be without their support.  I love receiving text messages from my heart mamas, asking how Madi's eating is today, or how my kids' therapy sessions went.  I love to get pics of their kiddos, just enjoying life.  I am thrilled to share in their families' successes, and I cry with them when life gets them down.  They are there for me whenever I need-even if it's three in the morning.  And I am more than willing to return that favor.
Then there are the ones that I know in person, that are still fully present in my life through thick and thin.  It means so much to me to have people that are on my side.  To get "happy mail" from them, collaborate on CHD projects, share recipes, and meet up for lunch or the aquarium or what have you.  Having someone around that understands is priceless.  What is even more priceless to me, though, is the people that are willing to jump into this crazy life of mine knowing full well what it entails.  The friends who care enough to want to learn about the CHD world even if they are not in it.  The ones who rally for support and awareness for things that mean a lot to me.  The ones who are willing to share a plate of cheesy fries or a margarita and molten lava cake at a restaurant at 10 at night, since that's the only time I can get away.  The ones who take their own talents and use them to make things that further CHD Awareness and education.
If you are reading this right now, chances are you are one of those friends.  I hope you know how much you mean to me.  Your love, support, prayers, and laughter are immeasurably valuable to me. 
In other words, I LOVE YOU GUYS!

Making choices

Amy Winehouse passed away yesterday at the young age of 27.  It is assumed that she died of an overdose.  When the news got out I posted that it was a shame, but I was not shocked.
Who would have ever thought it would start so much controversy?
It has come to light that in making the statement that I was not surprised that she died, apparently I am being judgmental and disrespectful to the dead and her family and friends.  That was not my intent at all.  It was mentioned that as someone who has been in the CHD world, I should know better, and I should not say things like that.
It's not the same.  Not at all.  My daughter, and the countless others who have battled a heart defect, did not choose this.  They did not ask for their vital organs to give out on them.  They did nothing that would bring on such an awful rollercoaster of medications, doctors' visits, operations, and the like.
People who drink and do drugs have a choice.  For whatever reason, they pick up the bottle/needle/pipe/pills and subject their body to poison.  Maybe it's heartless of me to say so, but I really have a hard time feeling bad for addicts.  I pray for them.  I hope they find healing.  I have cried as my own friend was laid to rest at 16 years old after a night of horrible decisions.  But I don't feel bad, per se.  I don't care what the excuse is.  What you are running from, who pressured you to do it.  There really is no reason on Earth to even start.  There are plenty of people in this world who have faced horrible, awful, dysfunctional, dangerous lives and didn't turn to substances to try to fill the void.  My husband's early childhood was terrible.  Some of the things that happened to him would make you sick to your stomach.  But he simply chose to use that as a foundation to be better than that.
Amy Winehouse was someone's daughter.  She was someone's love, someone's friend.  A phenomenally talented artist gone way too soon.  We don't know what demons she lived with, and where her mind was or was not.  But at the end of the day, she was an addict.  Just like my friend who died 11 years ago.  The hurt he left behind for so many will never go away. 
I pray that Amy is at peace now with the Lord.  That she has found solace and comfort, and is free from whatever haunted her during her short life on Earth.
But please, don't ever tell me that it's like what CHD families go through when they lose a child.  Alcoholism and drug addiction is not something you are born with.  It's something terrible.  It's sad.  It takes too many lives way too soon.  And maybe the reason why it does is so that God can relieve them of their pain in the only way that He knows will truly work.  I don't know, I am but one person and cannot delve into the reasoning of the world.  But one thing I do know for sure: when you live the drug and alcohol lifestyle to the fullest, you really can't be surprised when it comes back around on you and those you love with brutal and unforgiving force.  The saddest part is that when drugs and alcohol take over, the mind becomes too clouded to realize it. 

Save the drama for your mama! ...Oh, wait, I AM your mama...

When a woman is pregnant, many thoughts go through her mind about the little life that is developing inside her.  We imagine what the baby will look like, how big he or she will be, and what their personalities will be like.  Often times, we are way off base.  In the case of my pregnancy "premonitions" about Sydney, though, I always knew she was going to be a bit of a firecracker.  Boy was I right.
Throughout my pregnancy, Sydney was always in motion.  I don't think she slept a wink while she was in utero..and I didn't sleep much either.  Just when I would think she had settled down for the evening, she would start her gymnastics. 
Since then, she has proven over and over that she is the go-getter.  Now that she is two years old, I am starting to see a bit more personality coming out as time goes on.  My little Sydney has turned into quite the drama queen. She is also very daring and rambunctious.  She reminds me of my little brother, Derek, now 20, who to this day is the poster child for bumps, bruises, and crazy conundrums.  Case in point: over the weekend, Sydney figured out how much fun it is to climb up and down on the couch.  Today she was on the couch and "looking" over the arm of the couch.  I told her to sit down, and she did, so I went into the kitchen to start making lunch.  Then, WHAM!  Sydney is on the floor-in the kitchen.  She stood up on the couch and pretty much vaulted over the side of the couch, bounced once on the carpet in the living room, and ended up in the kitchen.  Of course she got lots of kisses, reassurance and comfort.  After she is feeling better, what does she do?  Yep, climbs up on the couch and starts hanging over the side again.  I told her to sit down or she was going to fall again.  Oh, the drama.  Sydney let loose.  Funny thing is, she would look to make sure I was watching her before she would start wailing again. 
I am still struggling with trying to balance my time between both kids equally.  More and more these days I find that a hard goal to meet.  Madi doesn't like to share.  Not her toys, and especially not "her" Mama.  Which makes Sydney cry.  And cry.  And cry.  Sometimes, hair-pulling (Sydney pulling Madi's) and bodyslamming (Madi on Sydney) will ensue.  I become a referee. 
I cringe to think what adolescence will bring. 

Hopes & Dreams

As I write this, we are currently battling an as-yet-unknown "bug" in Madi's digestive system.  We are not sure whether it's some kind of infection or her body saying it doesn't like her new immunosuppressant medication.  Then again, it could be something else entirely-diarrhea "just because."  In any case, trying to figure out what's plaguing this poor kiddo's stomach has turned me into a pseudo poop scientist/lab tech.  Yes, that means exactly what you think it means... scooping "samples" from diapers, putting them in various cups and tubes, and then refrigerating or freezing them per doc's orders till the following day when they get dropped off at the lab.  I bet you are SO jealous of me right now.
But as any good parent knows, you will do anything for your child to make their owies better.  So I gag my way through, and try to think of things other than what I am doing.
One of the main things I have been thinking about lately is dreams.  As in, dreams for my children.  When Madi was born I had plenty of thoughts of all the big things she could do in life.  Then when things went down the crapper (pardon the poop talk, it's hard to get off the brain) my only dream was for her to survive.  And look at her now!  She runs, jumps, colors, and does most of the things that "normal, healthy" children do.  I know that her life will never be like others' her age, but that's really okay with me.  My dreams for Madi are a bit different now-that she can overcome her developmental disabilities and continue to learn and grow every day.  That she goes on to make lots of friends in life who respect, understand, support and appreciate her.  That she is a respectful, kind and helpful member of society.  I hope that she understands that it's okay to have a "pity party" for yourself every now and then, but also realizes that life is good, and you have to appreciate what you do have instead of lamenting what you do not.  I also hope that she uses her experience with heart disease, stroke, transplant, and developmental issues to be a source of comfort and education for others.  I certainly do not expect her to be a CHD/organ donor crusader like me, but I would honestly be thrilled to death if she chose to do so. 
Life after transplant presents a whole new Pandora's box of issues, no-no's and what ifs.  In the journey we have taken in the world of organ transplants, I have come across many instances of teens refusing to take medications, of post-surgical depression, of feeling left out because of the restrictions transplant meds make on your life.  I dream that someday medical science will acheive the goal of medications that protect from rejection without the added restrictions.  I hope that as Madi gets older she understands the importance of taking her medications and not giving in to societal pressures to drink and do drugs.  Hopefully since she has been taking medications for as long as she can probably remember, it will help in the future since it will be just a way of life for her. 
I know that I am getting ahead of myself.  That her adolescence is far away still (Thank the Lord!) and that these things should not be on my mind.  And usually they aren't.  The little bothersome anxieties and paranoias only come around every now and then, and usually only when a new situation (such as collecting poo samples) arises.  I can't help that it gets me to thinking about how different life is now.  About how so many people I know-sadly, a lot of the people I am referring to are family members-are so very ignorant about transplantation.  They seem to think that life is hunky-dorey now, and that I am being overprotective, paranoid, etc about all the things Madi can and cannot do.  To them I say that ignorance is curable.  If they only took the time to educate themselves, they would see that I am giving Madi the very best of life, in any way I can.  Because no matter how many poopy diapers I change, or how many times I get vomited on, no matter how frustrated I get with feeding issues and developmental delays, I have Madi.  Here and now, in this moment, my daughter is a bright-eyed, pink-skinned, loving, curious, sassy, sweet girl.
That, my friends, is the best dream of all.

Eyelashes? Seriously?

I got a new laptop!  Wa-hoo!  Best Buy decided that since my laptop has been in three  times, per their Geek Squad Black Tie Protection, they had to "junk out" my computer and get me into a new one.  Yay for accidental damage coverage! 
So as I am sitting on my laptop, checking my Facebook for the bazillionth time today (it's an addiction, I know), I saw a commercial on TV for some drug that promotes eyelash growth.  I have to say, it really ticked me off!
Why on Earth is there such a big hullaballoo about eyelashes?  I mean, honestly, if the biggest issue in your life is the fact that your eyelashes aren't long enough for your taste, you are probably doing pretty well.  I am sure there are some medical conditions and medications that do things to your hair and there's a lot of weight on people's looks.  But seriously?  With things like CHDs, Cancer, AIDS, MS, and many many other debilitating disorders out there, I can only pray that this drug was originally going to be used for something serious and the eyelash part was discovered by accident.  If not, that would make me very sad.
Ok that's it, my rant is done and over.. for now.

Food wars part two: Battle of the Stuffed Crust

If you follow my blog, you know by now about Madi and her struggles.  The main one now post-transplant is food.  (See previous post)
Tonight I decided that I was going to order a pizza from Pizza Hut, as they were doing a deal where a large stuffed crust was only $10-score!  I thought for sure it would be a win-win situation.  In the past, when I have gotten Madi to eat pizza, it was always a little personal pan pizza from the little mini Pizza Hut inside our local Target.  She also really likes cheesy bread so I thought if nothing else the stuffed crust would win her over.
WRONG.
She took one look at her plate, yelled, and tried to push herself away from the table.  At this point, Sydney had a piece of pizza in her mouth but upon seeing Madi's temper tantrum decided that she would much rather have her milk.  Massive whining from both children ensued.  All they wanted was their milk, right now!  (I am gonna come clean here and admit that all I wanted right then was a shot of booze.. ha ha) 
I begged-"Just try one bite!" I yelled- "Eat now or you go to your room!"  I bribed- "Once you start eating your dinner you can have your milk."  I upped the ante-"If you eat your dinner we can have ice cream afterward."  Nothing worked.  So I ignored.  I sat and ate my own two (delicious!) pieces of pizza, wishing that there was a way I could transfer my (too strong) love of food to my two food snobs.  (Sydney usually eats much better than this, but lately has been on some kind of odd food strike.)
All of a sudden, Madi says "It's perfect!"  I sneaked a glance out of the corner of my eye and lo and behold, she was taking pieces of pizza, dunking them in ranch, and eating them-without spitting them out!  She finally realized that if she loves ranch dressing, then maybe if she dunked pizza in it, it would be delicious!  (Duh!  I could've told her that.  In fact, I did.  Many times.)
I wish I could say that she ate the whole piece of pizza, and that Sydney ate hers too.  It was not to be..Sydney would not touch any of her pizza no matter what tactic was taken.  Madi, however, ate about half of hers.  I am chalking this one up to a victory.
Take that, food!  One day, one step at a time, I WILL win this war!  Determined mommies (and daddies) always do.

Food: The Enemy

At five this morning, I shot out of bed to the sounds of Madi getting sick in her bedroom.  As I sponged her off, stripped her bed, wiped her mattress and got everything re-situated in her room, the thought hit me: 'Well, there go some more much-needed calories.'  Probably not something most parents think of while throwing sick-y sheets in the washing machine, but it's a common thought for me.
Madi has never really been what you would call a fantastic eater.  But since she got sick it just all went downhill from there.  I used to think that it was because her sick old heart worked so hard just to keep her alive, her body didn't have the extra energy to expend to be hungry, or to digest the food she did eat.  And that was a lot of the problem.  Now, post-transplant, we are in the same boat still.  You would think with a good heart, this problem would've resolved itself.  I am finding that this is not the case at all.  Since Madi is still not at the point where she can communicate in detail how she is feeling, it's up to me to guess: is it because her medicines make things taste weird, or because they kill her appetite?  Or maybe it's that she just doesn't understand what a hunger pain is and mistakes it for a stomachache?  Maybe a combo of all of the above?  I just don't know, and that makes it all the more frustrating.
We do supplement with Carnation Instant Breakfast and PediaSure when she will accept them.  But she gets sick of these things, and who could blame her?  I feel as though I am forever stressing about the next mealtime.  It's usually a battle of wills.. me begging her to eat-just one bite, maybe two-and her out and out refusing to even try.  I am getting better at trying to just let her be and discover foods on her own, but there are plenty of days when I seriously want to put myself in time-out, because that way I can sit in the corner and have a cry all by myself.
In the days post-transplant, a feeding tube was discussed, but from the very start I was against it.  Of course, if she was steadily losing weight and never getting any sustenance, I would have gone for it.  But she doesn't necessarily lose weight, she just doesn't gain it either.  For all the benefits a feeding tube would have there are significant downsides to it as well.  I know of plenty of kids who will not eat anything by mouth anymore due to the fact that they aren't used to having to eat because the tube is there.  I have struggled with my decision, and many a day I have questioned it, but in the end I feel that it would cause more food issues for her.  With her heading to school in the fall, it would just be another big step backward.  The other main consideration is that a feeding tube presents a constant infection risk, and for transplant patients of course, that risk is always much more dangerous.
So onward we go..trying to figure out ways to slip calories in the foods that Madi does eat.  It gets complicated, though, when basically the only things she wants to eat are cheese sandwiches.  Thankfully she likes plenty of butter.  :) I wish that I could just take some of the extra pounds I have and give them to her.  Anyone ever heard of a fat transplant?? Ha ha.
I suppose we will just chalk it all up to another way that life post-transplant will never be uneventful.  I am very grateful, of course, that she is here and mostly healthy.  That is the main thing, the most important thing.  I will do whatever it takes to be sure that she gets everything she needs, and of course some of what she wants as well.  It may be that she will get the things she wants only after she eats a meal covered in butter, but hey, moms are nothing if not ingenious.

Father's Day

The following came to me in an email this morning.. and I LOVE it!
My husband is generally pretty good about helping w/things when he can, so this really doesn't relate to him per se, but it is justification, in my eyes, for all of us stay-at-home parents who feel maybe just a tad overworked and underappreciated.  (I believe it originally came from cnn.com but don't quote me on that!)
Enjoy!

The woman started crying.

I didn't expect this, because, well, why would I?

We were two adults, standing in a preschool auditorium, waiting for the year-end musical gala to begin, talking summer plans and Twitter and junk fiction and all things mindless parents talk at mindless events. Then -- tears.

"My husband," she said, "doesn't care."

"Uh, about what?" I asked.

The floodgates now open, she told me her husband works from home. But he never drops their daughter off at preschool. He never picks their daughter up at preschool. He never wakes up with their daughter, never puts her to bed, never takes her to a movie or a carnival or a ball game; never comes up with fun daddy-daughter activities. "All he worries about is golf," the mother said. "Sometimes he'll take her to the driving range for an hour. But that's it. ..."

Two days later, by mere coincidence, a different mother cornered me. I was sitting in a pizzeria with my son, Emmett, and daughter, Casey, gnawing on a calzone. The woman, another preschool regular who always seems to be dragging around her kids with the worn look of a chain gang inmate, glanced my way and muttered, "My husband would never do that."

"Do what?" I asked.

"Be out alone with both of the kids at once," she said. "Never."

In case you are wondering, I am that dad. The one who works out of the house. The one who drives his kids to school, packs lunches and pushes swings and arranges play dates and attends teacher conferences and -- generally speaking -- frequently finds himself alone in brightly colored rooms filled with women and tykes.

Along with my wife (who, until recently, also worked from home), I wipe snot, clean poop, order time outs and say no -- Really, no! I'm being serious, no! -- to the damned ice cream man and his Satanic siren call. I know all of my kids' friends, and most of their tendencies (Ashley and Emily love dolls, Lucas only wants to talk about Derek Jeter, Tyler digs applesauce).

Hence, I have been sent here today, on behalf of the stay-at-home mothers of the world, to convey to my fellow pops a message of love and hope in this lead-up to

Father's Day: Wake the hell up.

Really, wake the hell up.

 Now. I understand that most of you have 9-to-5 jobs, that you leave tired and come home tired and just wanna chill in front of SportsCenter with a bowl of chips. But, seriously, you have no remote idea: Being a stay-at-home parent is exhausting. At the office, you can hide. You can take lunch. You can pretend you're working while scrolling the Internet for Yankees-Blue Jays and, ahem, Lindsay Lohan news. You have genuine social interactions with folks over the age of, oh, 12. People ask questions about your day -- and listen to the answers.

I envy you, but I sort of pity you. Kids grow. Age 1 turns to age 3, which turns to age 7, which turns to 15 and 18 and 21, all in the blink of an eye. If you're there, as I am, it flies. If you're not there -- if you're almost never there -- it barely exists at all. Which is why I just can't stomach those millions of dads who view their days at home as recovery from work, who'd rather rest than engage, who have no problem with passing the tykes off for more alone time with mom and who, literally, moan to their wives, "You have no idea how hard I work."

For you, I offer these 10 commandments of righteous fatherhood. Pay close attention, because, behind your back, people are pitying your wife:

 

1. No golf on weekends: Seriously, it's ludicrous. Your spouse is home with the kids all the time, and you think it's OK to take five hours on a weekend day to pursue your own pastime? Selfishness, thy name is Father.

2. Wake up: Literally, wake up. With your kids. On at least one of the two weekend days -- and perhaps both. I know: you wake up early for work. Not even remotely the same thing. Rising alongside the kiddies is hard. And crazy. And (gasp!) sorta fun, if you'd just stop moping.

3. Change diapers: If you have little kids, and you don't know how to change diapers (or, even worse, refuse to change diapers), you're pathetic. That's no exaggeration -- p-a-t-h-e-t-i-c. It's not all that hard, and though the poop sometimes winds up on the fingers, well, uh, yeah. It just does. Wash your hands.

4. Play with dolls and paint your toenails: How many fathers do I know who refuse to get girlish with their girls? Dozens. Dude, put aside the machismo, break out Barbie and slather on some pink polish. You'll make a friend for life -- and nobody else is watching.

5. Do things you don't want to do: It's easy to take the kids to the driving range -- because you want to be there. Now try spending the day having a tea party at American Girl. Or crawling through one of those wormholes at the nearby kiddie gym. Fun? Often, no. But this isn't about you.

6. Order the wife to bug off: I recently met a mother who told me her husband hadn't been alone with their 9-year-old daughter for more than two hours ... ever. Inexcusable. Let your wife do her own thing: relax, take a run, whatever. Entertain your children solo. They don't bite

(Note: CNN.com is not liable if your children do, in fact, bite).

 

7. Surprise! Just once, on a random day without meaning or purpose, show up early at your kid's school/camp/wherever, say "Get in the car!" and take him/her somewhere special. Just the two of you, alone. A movie. A park. A hike. The memory lasts -- I promise.

8. Dishes Don't Clean Themselves (Nor Do Toys): It's amazing how this one works. You pick up a dish, run it under hot water with some soap, rub it down with a towel and place it back on the shelf. Then repeat.

9. Wake up your kid: Not often. But if you want to score big points and create a killer memory moment, walk in Junior's room at, oh, midnight, wake him/her up and go outside for 10 minutes to watch the stars.

10. For God's sake, tell your kids you love them: They never see you, and they'd probably like to know.

Bud, as you read this your wife is expecting little -- and your kids are expecting even less.

Pull one out of the blue.

Make Father's Day less about you, and all about them.

The opinions expressed in this commentary are solely those of Jeff Pearlman.

Rant!

I have been slacking off on the blogging lately.  I guess I haven't really had a whole lot to say.  Ok, ok it's really because my laptop met with some Vanilla Coke and the soda won.  Laptop's off to Geek Squad for about a month getting new keys and such, and I am now relegated to hubby's computer.  In the office.  Which is horribly cluttered and claustrophobic.
Anyway, that's pretty much the excitement in my life these days.  Till today. Today was just one of "those days" when nothing seems to go right, and every little thorn in your side is felt bigger and bigger.  I know that I have a lot to be grateful for in my life, but hey, a girl gets irritated every now and then!

Here's the thing.  I have never touched a drug in my life.  (Unless you count the Vicodin I had after my wisdom teeth were dug out of my jaw.  I don't.)  I try my very hardest not to be a judgemental person.  Really, I do.  But I can't help but notice that most of the time, the people you run across that are into "recreation" in a substance form are, well, lowlifes.  Don't get me wrong, I have met many an amiable and charitable stoner that would never harm a fly.  But for the most part something seems to be seriously lacking in the responsibility part of the brain.
Case in point: when I lived in Washington State, I had a rather large group of friends.  Say maybe twenty of us all together including me.  Almost all of them dropped out of school-most not even trying to get their GED.  Ninety-nine percent of them are either off in the meth world somewhere, or have been a part of that at some point.  At least two-thirds do not have a driver's license because it got taken away for one reason or another.  Most have no jobs, and a lot of them either live at home or bounce from place to shady place as they get served with eviction notices.  The ones that have kids are generally on welfare, living in some dive somewhere that's paid for by the state.  One friend even tragically lost his life 10 years ago in a car accident that would not have happened had the occupants not been drunk and high. 
Good grief, how did I ever make it out of there sober?  I guess I have more willpower than I thought.  But these things are what irritate the living daylights out of me.  Here we are, hard working people who are responsible.  We do what we can for our kids, pay our taxes, and help others as often as we can.  So why on earth do these (able-bodied) people slip through the cracks, amassing criminal records, drug addictions and time on their couch waiting for the checks from the state to roll in, all while making no efforts whatsoever on bettering their life?  While we can't even get a boost to help us through the worst of times?  Seems a little counter-productive to me.  But hey, if I ruled the world things would be a lot different.
For starters, there would be a law in place requiring drug tests for people on welfare, and not rewarding people living lazily. 
Then again, if I ruled the world, there'd probably be a lot of free chocolate going around...

Hi, My name is "No! No! No!"

I think I should get both of my children tattooed with that sentiment.
Today has been quite the interesting day.  If any of you have been to our house, you know that the amount of toys, books, games and art supplies could easily give Toys 'R' Us a run for their money.  Well, at least that's what crosses my mind when it's 2am and I step on yet another Lego, wrenching my ankle and swearing that the kids don't need anything new.  Ever. Again.
So what have my beloved children been playing with today?  Whilst I have been on the phone most of the day trying to straighten out insurance issues & bills (I know you are jealous), my children have been busy too.  Here are the list of "playthings" we have been digging (and in some situations, I use that term literally) today:

Garbage cans & recycling bins
The dishwasher
Movie bins (dumping them out)
The bin that holds diapers, wipes, blood pressure monitor, and record book for vitals
Drawers in the kitchen that are supposedly child-locked.  So much for that idea.
Sheena, the cat.. pulling on her hair and shoving random toys in her face
Each others' heads, mainly the hair.  As in drag-you-to-the-ground hair pulling.
Movies (taking them out of cases & strewing about)
Light switches
Electrical outlets
Cupboard doors-again these have useless child-locks on them.
Closet doors.. open, shut, open, shut
Shoes
Vacuum cleaner attachments
Mommy's laptop.  Didn't you know they make great platforms on which to stand?  Me either.

I am sure there are many more items to add to the list but I haven't discovered any further proof of that.  I can't count how many times today I had to take one child or the other to time out, break up some kind of squabble, or remove them from something potentially dangerous/annoying.  All this while on hold with various companies.  I wonder if there's some tape somewhere of all my disciplinary actions that was taped while I was holding.  Guess it serves them right for making me stomach that horrible Muzak, right?
Now that all my calls on my to-do list are taken care of, I am off to put a pizza in the oven and watch Monsters, Inc with the girls.  I think I deserve it just as much as they do.
Right?

Embracing our differences

We are all so very different.  God made us how He wanted us to be made, for only He knows the plan for our lives.  We all fight battles in our lives.  Some are big, some small, but all are important to us as individuals and even as communities. 

There's a resounding question in the parenting world about what to do when your child has a hurdle they have to surmount.  Whether it's something like Madi fights every day, Down Syndrome, learning disabilities & developmental delays, cerebral palsy, spina bifida, or any number of issues we as humans can have, it doesn't matter.  In this, as parents, we all face the same gut-wrenching question of how to handle it all.  Do we push our children to be more, to do more?  Do we just let them take the reins and follow their lead?  Pretend like they are completely "normal" (whatever normal means anyway..I don't know if there is such a thing) or make them aware of the challenges they face as a result of their specific issue?


I have gotten plenty of criticism for the road I have taken when it comes to Madi.  There have been whispers about the fact that we took so many pictures of her-some that are hard to look at.  I mean, physically & mentally painful to view.  But here's the way I see it:  why hide it?  Why shove it down and pretend that it's not there?  No, I won't do that.  To me it's doing my daughter a dishonor; almost taking her for granted.  The photos and memories serve many purposes.  They educate, showing others what children fighting heart diseases face each and every day.  They open doors for questions to be asked, and hopefully then for more of a push for funding and research.  Someday they will reaffirm to Madi what I have said all along-that she is a fighter, a warrior and a miracle.  That when you fall down 5 times, you get up 6 times.  That we never, ever gave up on her and never will.  But perhaps the most important thing they do for us as a family is to teach us all how very precious life is.  What a wonderful thing it is to be blessed with TWO beautiful daughters, and how thankful we are for that.  Though those times brought me to my knees many a time I picked myself up off the floor and fought the fight that my daughter could not fight alone.  I had so much fear and so many questions.  I was losing my confidence in God and faith.  But He was always there, by my side, ready to pick me up and carry me when I didn't think there was one single more footstep in this body of mine.  So I embrace those photos.  They are the proof that miracles DO exist. 

Madi's tiny chest bears physical scars from all that she has beaten.  Though most of the time we do not see them as they are covered by her clothing, they are there.  Why hide it?  Why make it seem like what she went through isn't important?  By trying to will it away, what message does that send?  To me it says "there's something wrong with you, so don't talk about it."  That's not the lesson I want her to take away from all this.  I want her to realize that it's ok to be different.  Every single person on Earth has their strengths, their weaknesses, their victories and defeats.  They are what makes us who we are. 

So yes, I will continue to tote my camera around.  I will be the mom on the sidelines when my girls score a goal, twirl in their tutus, ride their bikes, or sing at a school concert.  I will document their lives.  The good, the bad, and the ugly.  Because every little piece of their life is a piece of their soul, and in turn a piece of me.  I am proud of every silly, sweet, scared, whiny, laughing, crying, bratty, witty, smart, loving molecule of their bodies.  I love every freckle and every scar.  And it's my hope that they too will learn to love themselves in this way, and celebrate who they are.

In a nutshell:  God doesn't make junk!

Getting a leg up.. or even a toehold!

Frustration seems to be the mood of the day for me.
Nevermind the fact that today my father turned 50, and I have not spoken to him in about 6 months.  That's a whole 'nother story, for a whole 'nother day/blog entry.  Suffice it to say that we got into an argument about me wanting him in my life & my girls' lives more and he has not spoken to me since, citing his lack of time as one of many excuses.  Granted, I did tell him he was a crappy parent but that's how I have been feeling, and rather than try to resolve it with me (I have called, texted, emailed and even sent snail mail.. all ignored) he walked away.  Ugh. 
Ok, ok, back to my matter at hand.
First off let me say that I KNOW we are blessed, and I do KNOW that there are others out there who are way worse off than we are.  I KNOW this.  But knowing this does not kill the feelings of frustration that are bubbling up inside of me.
We are taxpayers.  We are responsible parents who do whatever we can for our kids.  Up till 2 years ago we had no negative marks on our credit report whatsoever.  None.  Which means, obviously, that prior to that time in our life we had always paid all our bills on time and had relatively little debt.  Fast forward past Madi's many hospitalizations, surgeries, the birth of Sydney, and many, MANY late paychecks and here we are.  So today I called my credit card company to see what kind of options they could give me-like lowering my interest rate so the minimum payments will be handleable (is that even a word?  I don't think so.. ) till things get better paycheck-wise.  You know what they said?  "You don't make enough money to qualify for one of our debt-relief programs."  What?  Did I hear that right?  You have to make a large amount of money to be put into a program to help relieve your debt?  Seems a bit counter-productive to me.  It's just making this whole situation into a vicious cycle that's gonna come back and bite me in the butt.   It's not like we are so buried in debt that we need to file bankruptcy.  We just need to get a leg up.. or even a toe.  I am going back to the drawing board to figure out some ways to cut costs and stretch our money further, so if you have any ideas, I am welcome to hear them.  Whilst I do that, I am gonna keep my eyes peeled for that ever-elusive money tree.  Or maybe my mom will win the Powerball.  Hey, a girl can hope, can't she?

Hard Decisions...

Lately there has been a lot of soul-searching going on in this heart of mine. 
It's so hard sometimes to go forward with things when you feel that you are not supported.  In the past six months, I have been pushed aside, ignored and insulted by people that I love.  It has come to pass that the things I am trying to do to further education and awareness about heart disease are being completely ignored by a lot of people in my life.  Most of them family members.  I can't tell you how much this hurts. 
It is with a very heavy heart that I have decided that our family will not be physically walking in the American Heart Association's Start! HeartWalk this year.  Team Madi still exists, and we will still be raising as much money in donations as we can.  We would be very honored if you would make a donation to Team Madi and help us "walk all over" heart disease and stroke.  Please follow the link at right to do so.  All monies raised go to fund research and education regarding heart disease and stroke.
Please do not think that this is me giving up and walking away from the causes that mean so much to me.  I simply need a break, time to regroup, and time to heal.  It pains me that people that I thought I could count on (in my family!) have absolutely no interest whatsoever in what we are doing.  It's sad, really.  But there's nothing I can do but move on.
I am choosing to set my sights on some other endeavors.  We will be collecting items for the Child Life department at Saint Mary's hospital, and as always we will still be gathering as many pop tabs for the Ronald McDonald House as we can.  We also have our 2nd blood drive in Madi's honor coming up in August, so stay tuned for further information on that!  I am very excited to be moving forward with these events, and hope that you will join us if you can.  Every little bit helps! 

Christopher's Story: Beating the Odds

When you are a member of the heart community, we often get bad news.  There are times when I fear what I am going to see on my Facebook newsfeed when I log in.  Too often, these parents lose their heart kiddos.  Sometimes they don't even know their child had a heart condition.  Sometimes they know of the heart condition, but don't know what caused it.
I have had the privelege of getting to know a great woman, Kristi Pena, through Facebook's community of heart moms.  Her son, Christopher Jr. (CJ), is an inspiration.  Not to mention quite the handsome little guy!

CJ is a miracle child who has fought through many hurdles in his young life.  It was recently discovered that CJ has something called Barth syndrome which caused his health problems.
The month of May has been set aside to promote awareness and increase knowledge of Barth syndrome. We would like to put a face to this syndrome. We want people to realize there is more to a boy or man affected with Barth syndrome than just a diagnosis. These are people with stories to share, enlighten and even inspire.
Here is CJ's story, as told by his mom Kristiana (Kristi) Pena:

Christopher is a sweet, outgoing, funny and adorable little boy who suffers from Barth syndrome.
You would not know he had BTHS just by looking at him, as he and the other boys compensate So well to have such a multitude of issues.
You would not know the endless appointments, specialists and therapies he must go through on a regular basis. You would not know that he must have injections several times a week to make his white blood cells produce sufficiently and be able to fight infections. He must take antibiotics everyday forever.
You would not know he takes 8 oral medicines a day to help his heart function properly.
He does have more difficulty in eating and because of this, Pediasure is there to help him get enough nutrition. A true Barth’s boy, he does love his butter, salt and eggs.
He has a lot of energy when you first observe him, but if you know him well, you know he does get tired more easily than others his age. Because of this, he sleeps longer than most at night.
We let Christopher guide us and he though he was slower at walking, talking and doing other normal physical things, he is very smart. Here is the story of Christopher:
Christopher Pena was born in April 2008 with non-compacted cardiomyopathy. Non-compacted cardiomyopathy is a very rare condition in which the heart muscle remains sponge-like after birth, which causes the heart to be very weak. Christopher's cardiomyopathy affects his right and left ventricles where it is very hard for his heart to pump and function correctly. They said the only fix was a heart transplant. At that time, we opted against.
Christopher was not given very long to live. Six months at most When he was 45 days old, he was admitted into hospice care where he remained for 15 months. Christopher was released from hospice when an echo cardiogram showed that his heart function had tripled! And at 18 months, his heart function was almost normal.
In February 2010, it was discovered that Barth Syndrome is the cause of Christopher's cardiomyopathy.
Barth syndrome is a rare, sex-linked genetic disorder of lipid metabolism that affects males. Typically, boys with Barth syndrome present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth. Other important features of Barth syndrome include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature. Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. It is very rare, so much that if people would hold hands from one end of the world, all of the way around, only one of those people would be a boy with Barth syndrome.
There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled.
Barth Syndrome Foundation’s Month of May awareness campaign featuring other family stories and quotes:
http://www.barthsyndrome.org/english/View.asp?x=1678&mp=1323

Read Christopher's story in greater detail here.

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...

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!