Happy Thanksgiving and Happy Birthday

    So we put up the Christmas Tree, celebrated Kylie's Birthday, and had a great Thanksgiving all in one week.  To say we were busy would be like saying OSU had a rocky season, I still think we should give Fickle one more season ( but that is another blog all together).  I read through our last blog and I realized the last real blog was that we were going home!  Time flies when you are having fun and I always had the intention of updating the blog when I had a day off and, more times than not, I would lay down in bed and smack my head and realize I forgot.  I am going to hit on the highlights and make a, soon to be, new years resolution to do better.
     First off, we have had no new hospitilizations since the pacemaker.  Kylie is doing great and is looking good.  We still have no idea what caused the fluid and whether or not it will come back.  I liked how one of the doctors put it.  He said that the fluid was an "idocratic" disease, meaning the doctors are idiots and can't figure it out :-).  I get little unnerved because, if the fluid does come back, all the reasons that is there is not good.  So, I think I am going to enjoy this and leave it in God's hands.
     Second, the pacemaker is another miricale.  We had an appointment with the pacemaker doctor and he was estatic!  Our appointment was at 9:00am and he came in smiles and saying we should all go out for a beer.  While, I do enjoy a good beer, 9am is a tad too early.  What was the cause for his slightly alcholic excitment?  Kylie had come out of heartblock.  After all the time we had spent in heartblock, the chances of her coming out was between slim and none and leaning towards the none.  Basically, there was a 99.9% chance of her never coming out of heartblock, but out she came.  Kylie has always been interesting.  She now uses the pacemaker .1% or less of the time.  She will need it more and more as her heart wears out, but that is a discussion that will be years down the road. 
     We celebrated Thanksgiving, a birthday, and put up the Christmas Tree all in one week.  Kylie loved the food for Thanksgivng, she has gained 3 lbs total since last weigh in.  She is in love with the Christmas tree, the first night we turned it off she lost it.  Complete and total melt down, it was like I ripped the head off of her of her favorite doll right in front of her.  I think she is getting in the Christmas spirit, don't you?  I am just worried about what's going to happen when we take it down!
     Kylie's 3rd birthday was yesterday, as well.  It is so hard to believe that my little one is three years old.  She is completely wonderful, full of smiles and laughs.  She is a walking miricale and she absoultetly loves all the attention. I am so thankful for the little girl she is becoming and I just pray that I am a man worthy of being her father.
    I have one other quick little note that I would like to add.  Kylie is definetly in love with the attention but she is going to have to learn how to share some of it.  If you haven't already heard, Aubrey is Pregnant!!!  Everything looks great, the heart has four beautiful chambers and everything looks great.  We may actually have a completely healthy little baby girl, yep it is going to be a little girl.  It is wierd that I am slightly freaked out by the notion of a healthy baby.  I am still getting used to the fact that we will take this one home right away, Lord willing.  I have spent three years, constantly, waiting for the other shoe to drop, with Kylie, it is almost seems normal to me.  Well, it seems, God has blessed us with a new healthy little girl.  On March 5, 2012, be ready world becasue Mackenzie Rose Stowers is scheduled to make an appearence.  :-)

Allright I think that catches you up on the main parts...I will keep you up on the new news :-)  Take care and God Bless.
  

The Blame Game: Cause and Effect

This is the 2nd chapter of Kylie the half hearted hero...tell me what you think.  I promise to write a real update soon :-)

Surprisingly, it was not on a stormy day that such and evil and unimaginable thing happen.  I was around ten years old and was out to dinner with my family.  On the surface, nothing to be scared about, nothing to hint at the frightening nightmare simmering and waiting underneath, a nightmare that would make a man three times my young age tremble and weep.  We sat down at the restaurant and I did what almost any kid would do when he is able to choose what he wanted for dinner, I ordered breakfast, of course.  I was set to enjoy my eggs over-easy, my toast with jam, and the piece de resistance, the pancakes with loads of butter and syrup.  I take my food very seriously, if you hadn’t noticed.

            Pancakes are one of my favorite breakfast foods in the world.  If breakfast was a mountain, pancakes would be the pinnacle.  If they were a building, pancakes would be the corner stone.   I was going to take my time and savior, the moment.  First, I ate the toast, straight forward enough, like a coed being in a seemingly empty house, blissfully unaware of the homicidal maniac in a hockey mask lurking in the closet.  Second, came the eggs, very tasty, but one began to notice an odd smell, not terribly wrong but a precursor of something terrible, like the floorboards creaking, alerting the victim to the possibility of someone in the house, but unfortunately dismissed for the household pet.  Finally, came the moment that I had waited for with egger anticipation, THE PANCAKES.  They were sitting on the plate, in its three glorious stack of glory, with that little slab of golden butter melting, beautifully, on the top.  I could almost hear the heavenly angel choir sing their Hallelujahs as the heavenly light came down.  I picked up the little pitcher of syrup and poured it over the pancakes, ignorant to the terror to come. 

            Other than the smell, the first thing to catch my attention was the syrup was pouring too freely.  There should have been a thick downpour of sweet maple syrupy goodness, caressing the three hotcakes but, in its place, a thin and sickly downpour of a dark ugly liquid.  Also, the smell that had slightly tickled my nostrils before had become a strong odor that really started to grab my young nose hairs.  Concerned, I looked to my loving family, my sister and my parents, the ones who are supposed to protect me from harm and all bad things, for guidance.  They were all wrapped up in their own worlds and happily enjoying each other’s company and their own untainted food, ignorant of my own conflict that was raging inside of me and my nose.  Well, if they hadn’t noticed anything maybe it was just me….I was so gullible at that young and impressionable age.  I grabbed my fork and cut into the thick, fluffy, and deliciously looking buttermilk delights and brought it to my young lips.  To my horror, instead, of the warm sugary goodness that was supposed to envelope my taste buds, they were met with a sledgehammer of disgustingness, like suddenly breathing a sigh of secure relief and turning around to see the killer stand right behind you with the butcher knife raised/  In an instant, I did what any rational, well mannered, 10 year old would do, I spit out the half chewed, offensive piece of food, which of course got the attention of everyone at the table ( yeah, now they noticed).  Suddenly, it had hit me what was wrong…what I had eaten was not syrup but VINEGAR.  Instead of the delicious, maple syrupy goodness, I had thin, cold disgustingly brown vinegar.  My pancakes were ruined!  OH, the humanity.

            I tell you this story to, hopefully, humorously, broach the topics of expectations.  We, as a people, like things to make sense and to be explainable.  When things don’t work out the way they are supposed we get nervous, aggravated, irritated, and upset.  We hate uncertainty and unpredictability.  We like knowing and being able to count on the fact that the sun will rise and that it will set.  We feel comfortable with the security of a steady job and a regular paycheck.  We EXPECT to get SYRUP with our pancakes.  When the vinegars in our life happen and when our security gets tossed on its ear, we become unsettled, nervous, and scarred.  When we are left scrambling to pick up the pieces we have this need to blame something or to find some reason for the chaos to make sense.  We just want it all to make sense in some way shape and form.  We blame God, politicians, Wall Street, money, our job, the weatherman, the universe, the inept waiter, or even ourselves because surely something tangible must have the problem.  We desperately need something to make sense.

            I remember the weeks after we had found out that Kylie was going to be born with a severe congenital heart defect.  Just trying to figure out why.  What had happened?  What had caused this?  Could we have done something different to prevent this?  We thought about medications that Aubrey had taken before finding out we were pregnant.  We thought about stressors that had happened on or around the time that Kylie’s heart was being developed.  We were, desperately, trying to make sense of what happened.  I remember walking through the parking lot of our apartment complex, sometimes in tearful crying, sometimes in angry yelling and sometimes in peaceful acceptance, but always wondering why and how could have this happened.  We like things to make sense and things to fit, nicely, in a box of reason.  Is this something that you can relate to?

            Now, I am not a doctor, nor do I play one on T.V., though, after three years of living this life and being surrounded by hospitals, appointments, therapies, and medical personalities we have probably picked up enough vocabulary and logged enough hospital hours that I might be able to rival some medical resident.   Also, I like to think that I look pretty good in a lab coat.  Any ways, as I was saying, I do not understand all the ins and outs and the intricacies of the heart and body, but what I have come to understand is that sometimes there is no REAL explanation to why the heart or body decides to form in a not so normal way.  That sometimes these things JUST happen.  Unless you have  a history of drugs and alcohol (which you DO have control over), most of these defects are not your fault, you did nothing wrong to cause it.  YOU ARE NOT BEING PUNISHED IN ANYWAY SHAPE OR FORM.

Let me be clear, God is not angry with you or at you and He is not taking it out on your child.  I put this in here because I was worried that I had done something wrong and that God was punishing me.  I have grown up in church learning about a God who is slow to anger, abounding in loving kindness, and is quick to forgive.  Logically, then, I believe that a loving God would not have punished Kylie for any of my sins.  I knew that, in my head, no matter what my mistakes, my daughter wasn’t meant to pay that price.  Sometimes though your brain and your heart do not match and there is a part of me that wonders what would have been my thoughts if Kylie hadn’t made it.  Thankfully, I believe in a God who is big enough to understand where those thoughts come from and does not hold those against me.  Now, I am not sure if you believe in God, it is not a need for reading this book, but I would not be surprised if you are experiencing or have experienced some of these same thoughts and feelings, in your journey with this.   Let me repeat it, in case you need to hear it again.  You have done nothing wrong to deserve this, you are not being punished and I am giving you permission, as some who has been there to FORGIVE your self.

            Before I go any farther, I want to expound on something I had touched on a little earlier.  If you are struggling with drugs or alcohol and are pregnant, you are in serious need of help.  There are some very serious health issues that can affect your unborn child and yourself.  Not to sound cliché, but it really is never too late for a fresh start.  Trust me, I am in no position to judge you or where you have been in your life and what has happened.  I have been places that I am not proud of and I regret to this day, but you have a bigger priority now, your child.  I believe that you are more than just a sum of your parts. You are a mother or father of a little one who has one hell of a fight in front of them and is going to need you. I can only imagine the feelings you must be going through. I urge you, though, to take those feelings and use them as motivation to make that change, to be there not only for yourself, but for your child. I know that with help and with a support structure you can overcome this.  I believe in you.

            What I can say, though, is that after three years of surgeries, hospital stays, feeding pumps, medications, injections, sleepless nights, therapies and doctor’s visits that the only thing that I wish I could change about everything is the pain that my daughter has gone through.  Other than that, I wouldn’t change a thing.  Through all of this I can, honestly, say that I have become a stronger person. I am a stronger father, husband, and leader.  I have met some amazing people and forged some wonderful friendships.  I have been able to help others at the start of their journeys, just like I have been helped   I have also seen some honest to goodness miracles, times when the doctors sat backed scratched their heads and were amazed at what these little ones can do.

            I want to end with a story and a bit of encouragement.  With all that is going on you will have the opportunity to tell your story time and time again.  Be ready for all types of people though, some are really good and respectful, others are just brazen as all get out.  I remember a trip to the store one day, not too long after the first surgery.  Kylie was hooked up to a constant oxygen cylinder and had a feeding tube in her nose; it was very obvious that she was not a “normal” child.  (Side note: Some people may be asking “why in the world would we go out with all that equipment.  You get used to it after a while and some days you just really need to get out.  Also, F.Y.I. you usually can get to the front of any line…the sympathy vote can be useful).  It was not unsurprising to get the long sympathetic glance from passersbys, you get used to it after a while.   What took me back was when someone came up to us and said, very politely, “I don’t mean to be rude, but what is wrong with your baby?”  To be honest, I had a couple of responses and emotions that flashed in my head.  I really wished they were all nice, but then I wouldn’t be being honest.  There was the offended protective father part of me that wanted to say “There is nothing wrong with child…What is wrong with you face?!”, thankfully didn’t go with one.  Second, I have a sarcastic part of me that really likes playing around with people that wanted to act surprise and horrified “What…Why…is something wrong with her?  What’s wrong with my baby?” and watch them stammer, my wife hits me when I do things like that, so that one is a no go.  Third, and thankfully this is the one I went with I smiled and explained that Kylie was a CHD baby and that we were in between surgeries.  You can’t always choose the people you run into but you can choose how to handle them. People, while not always tactful, are usually well meaning. Also, you are not a bad person or rude, if you would rather not talk about it, this is your journey; you don’t always have to share.  You are completely free to let people that this is personal and none of their business. 

            Anyways, getting back to the encouragement, when Aubrey and I have had the opportunities to share the one phrase that we have heard in response has been some variations of “Wow, I don’t how you do it!  I could never be that strong.” That is an honest response and the one that you are probably thinking at the start of your journey, heck I was thinking it myself and sometimes I still do.  It is natural to think this is too big and that you aren’t up to the challenge.  In the last three years I have done things that I have never thought I could possibly do.  So what do you do?  Do you throw in the towel, bury your head in the sand, and give up?  I believe that God knows what He is doing and that He sees the big picture while I see a small paint stroke.  I believe that out of every other family in this world, my wife and I were given this little fighter, that is what she. All CHD children, and every other special needs child is, A FIGHTER.  From the moment they are born, from their first breath, they are fighting for everything they have, for the very ability to survive.  I believe that we, as parents of special needs children were entrusted with precious gifts.  That out everyone else, God knew that we had the skills, the passion, the determination, the mind set to give these kids what they needed.  I am by; no means, saying that parents of non-special needs children are inferior, just that we, for whatever reason, were chosen for these little ones. I believe that parents are given their children, for a specific reason, that we are better than any other to care for that little one.  I pray that you can see it that way, as well.  That you have been selected, chosen even, to receive this gift of a child because you are best equipped to handle, care and give the little one what he or she needs.  Even if you can’t see it in yourself, it is there.  Trust me, if I can do it…you can do it.  I wouldn’t trade my little one for the entire world.

            I close this out, with two things that I want you to take away from this.  The first is that you are not being punished and, more than likely, there wasn’t anything you could have done or not done to keep yourself from having a “special” little one.  Secondly, you are STRONG enough to do this.  While at the beginning of your story it may seem like a horror movie, one that you would rather not watch, I believe that, if you believe in yourself, you will amaze even yourself.  Oh… and one other thing if, by some chance you have discovered a new love for pancakes, that’s just an extra bonus.