Big Day of Truth

Monday, April 30, 2012 marks the day that my beautiful daughter Claire will go into Vanderbilt and have open heart surgery to repair her AVSD. I have known this day was coming from the moment I found out Claire had the heart defect. It's finally here, after waiting all this time... It almost doesn't seem real.

To get up to speed on every thing, Claire was discharged from Vanderbilt on February 3,2012. We left the hospital on a feeding tube, oxygen and a monitor that attaches to her foot that gives her heart rate and Oxygen level; when either of them fluctuate, all you hear is BEEP BEEP BEEP. Brad and I even hear it beeping when it's not going off. I expect Claire's first word to be BEEP BEEP. The good news is she is expected to leave the hospital after surgery with nothing but her cute self. Praise the Lord and pass the ammunition because I think I could probably shoot that monitor! :o) Brad and I keep saying not much longer!!

After I wrote the blog "The Upside to Our Downs," I really started thinking about how we got to were we are today. Not physically but emotionally and mentally. I have read my blog over and over trying to think of what I missed, then suddenly realizing, I missed a large part of the truth. I meant every word in that blog but I left out quite a bit. Things that I am certainly not proud of but things that people should know. I want other moms or dads to know that when faced with challenges with your children it's okay to have worries and so many other emotions. Here is what i left out...

sweet baby Claire's hand-- saying hey!

Brad and I were ecstatic to be pregnant with Claire;  The day we went in to find out the sex of the baby, the ultra sound tech took forever. After the first hour went by I finally asked, "what is wrong with my baby? You have looked at her head and her heart over and over." The tech's response was "it's a girl!" She finally finished and the doctor came in and said she was going to send us to a high risk maternity doctor in Nashville. The doctor did not give us any specifics of what she thought might be the problem just that "she didn't want to take any chances." At the beginning my husband Brad just kept saying we are not going to worry until we have something to worry about.

24 weeks pregnant!

We went to the high risk doctor in Nashville and they said to come back in two weeks because baby Claire was still to small at 20 weeks to determine the issue. The doctor finally asked "do you even know why you are here?" We had no clue! He then said "You were refereed to us because the baby may have an irregular heart beat." We went back in two weeks and they did an ultra sound that took almost two hours and then the doctor walked in and said, "Well it looks like we have a heart defect! AVSD which is Atro-Ventricular Sceptical Defect; meaning Claire has a large hole in the center of her heart, where instead of having two ventricles she only has one." After going into great depth of explaining her heart defect he also mentions 98% of the time a baby has this defect they normally have down syndrome." He said that I needed to do an amino immediately to get results. As soon as the doctor said the word down syndrome my heart drop-- My face got hot and I thought I was going to be sick (literally, I remember Brad and my mom fanning me in the chair.) I didn't hear anything else he said. He continued to talk and explain to Brad and my mother all the possibilities... They might have to do surgery while Claire was still in utero, Claire might be born as a stillborn and there were so many more possible issues.  Still to this day I don't remember a word he said and I was sitting right in front of him. There are no words for the feelings that just rushed all over me. I wanted to punch him in the face, I just kept thinking how could you come in here and tell me this. I just thought "I have a perfect little family and I am not having you come in here and screw things but by telling me this."  It was instinct, it was the horrible cold truth that I immediately felt. Now when I look at Claire I wonder how could I ever have such terrible thoughts. I know these feelings are completely normal and I want other mothers and fathers to know that "IT'S OKAY!!" I was a zombie for 2 months.  "I thought we are not going to be a perfect family any more" Wrong. "we will never go on vacation again." Wrong. " I don't want to take away from Canon, He's going to hate me." Wrong. "Brad's going to leave me because this is all my fault." Wrong. "we will no longer have a life and be able to go any where." Wrong. "what if I can't take care of this baby?" Wrong. "Maybe this just isn't real... Maybe I am not having this baby? Should I see if we can abort? WRONG WRONG WRONG!!! I was so lost... I was in a state of impairment. I couldn't move, I didn't even feel like I could breathe.

30 weeks pregnant!

Brad and my mother stayed very strong through out the whole visit with the doctor. We came back a couple of weeks later and got the results. Once again I was a zombie. The doctor broke the news and said this baby has Down Syndrome... Do you want a pamphlet?? (my thought was seriously??? WTH Terrible I know.) The doctor asked if we had any questions and I responded "No, I just want to leave this place."
I remember just sitting there thinking to myself; "Do not cry, Do not cry, You will be okay, Stay strong, Do not cry." Over and over in my head I just kept saying that. We walked out of the doctors office outside into the parking lot and I lost it. I remember my face hurting so bad from crying. I remember just standing there on the side of the road with Brad and my mom and all three of us just holding each other. No words, just tears. We finally made it to the car and my mom drove separately and gave me a kiss and said you are a wonderful mother and we will love Claire no matter what. (she was right; she's always right. lol) *** I want everyone to know that God has blessed me with an amazing husband, he is my beginning and end. He will always be the one to make things seem brighter. I love him.***Brad and I got in the car and I looked at him and he was fiddling with his phone and hooked it up to the car and played the song "His eye is on the Sparrow." We literally just sat in silence and cried. Brad was trying so hard to be strong and there just comes a point when you have to say to your self "it's ok to not be strong and to just be human."  A week went by and Brad and I went to the Down Syndrome Support group in Clarksville; they are amazing. Every person in that room had a different story, the difference was we notice we were by far the youngest in the group. A man came over to Brad and shook his hand and said "remember this, you are a man and it is in our genetic code to feel like we have to fix things... The man looked at me and looked at my big ole belly and said this my friend does not need to be fixed; she is already perfect."  This man could not be more right; It was almost as if he had been sent to us to remind Brad and I that it's going to be okay, Claire is going to be ok. We had a few rough days but the real moment was when she was born... She was perfect (a little purple) BUT PERFECT. I cried and cried when I held her thinking "I was so worried about you and now you are nothing short of God's perfect creations."

Claire Daly- One day old!

Now every thing is going according to plan, we will have surgery coming soon and we have nothing but optimism. Now, when I look back on the way I felt its kind of silly. Claire is remarkable! If everyone could be like Canon our 3 year old and see things the way he does, some times I think the world would be a happier place. Canon looks at Claire and doesn't see anything except Claire. No down syndrome, no heart defect, just a little sister that he loves to pieces. On the rare occasion if Brad and I go out to eat, we get a lot of stares. (Claire is hooked up to an oxygen tank and there is the feeding tube that runs from her nose, along with the monitor we carry that has a cord attached to her foot.) I don't think people are staring to be rude, I think its more of curiosity. I know it wont happen but instead of the stares I would much rather some one come over and just ask "What is wrong? Or why do you have all this stuff for a baby?" Strangely enough I would just feel better for them to know the truth than just them making things up in their head of what they think is wrong with her. Instead of what's right with her.  
 Here is my advice; not just for the people in our situation but for anyone. At the end of your day, if you think you are having a bad day I can promise you it could be worse. Instead of looking for reasons of why things happen to you look for reason of why not? Don't be scared to cry and show emotion; we were given emotion to be able to show the inner love and feelings we have, that's why we are human. God chose Brad and I for a reason to have Claire and Canon. ( like my blog says) I know there will be struggles a head and I know every day won't be perfect but what I do know is that every day will be faced with an open and optimistic mind set that each day we are given is a new chance for success and an opportunity at a greater life.

The Up-Side to Our Downs...

It's been a little bit since I have been able to get on and write something. For those of you who don't know our little Claire has been in the hospital. Today will mark the 22nd day we have been here; Clarie got admitted on the 8th of January and it has been a bumpy ride; hopefully we are going forward into a clear path soon.

To fully understand why we are here, I guess it is time to explain why it takes so long for a three month old baby to get over as to what started out as a common cold. Sweet Claire-Bear Wise is such an amazing little fighter and has been since the moment I felt that first little kick in my stomach. At 22 weeks of pregnancy Brad and I found out that Claire has a heart disease called AVSD: Atrioventricular septal defect; which is a defect that involves the whole area of the upper and lower chambers of the heart; where the atria joins the ventricles. There is a large hole between the lower portion of the atria and the upper portion of the ventricles and this is associated with a abnormality of the valves separating the atria from the ventricles. The severity of the defect depends largely on the supporting attachments of the valve to the ventricles. There is an increased flow of blood to the lungs through both the ventricular and atrial components of the defect. In addition, the abnormal atrio-ventricular valve leaks,(our little leaky heart girl) so that when the ventricles contract, blood flows not only forwards to the body and the lungs, but also backwards into the atria. The back-pressure effect on the atria causes congestion of blood in the left atrium in particular, and this in turn causes congestion in the veins draining the lungs. It is found in approximately one-third of babies who have Down syndrome.

**So in English** Claire has Down Syndrome and a heart disease which instead of two ventricles, she has one that makes a large hole in the center of the four chambers of her heart. With the hole that Claire has, it leaks blood into her lungs which makes it extremely hard to get over a respiratory infection. Claire has been diagnosed with a viral pneumonia which is particularly made up of three virus' that she has; they are RSV, Rhino virus, and Inner virus. Claire has finally tested negative now for the RSV which is a small step closer to home. With all the virus' Claire has been trying to fight off she has needed some help breathing and eating. She has now been on a feeding tube which goes straight from her nose into her little belly and she is on oxygen. The doctors have not given us a "go home date" Claire has always marched to her own little beat and only she can tell us when that day will be. All we can do for her is keep her comfortable, help her with feeding and oxygen, give her all the love we can, and PRAY. She is a fighting diva and in that 3 month old 7lbs 8oz little body she has more fight in her than in anyone I have ever met. Claire's heart is suppose to be repaired by open heart surgery when she hits the lucky 10 pounds and when she is in the best health she can be in.

As a parent the last thing you ever want to experience is to see your child struggle; there is no worse feeling than to feel completely helpless and know there is nothing you can do to make that sweet child better. We put it in the hands of God and just have faith. The number one thing that Brad and I have done and will continue to do is see Claire for Claire. We will not compare her to an average baby, a down syndrome baby or to our son Canon. We will fight for her and show her she is her own person and to not hold back in the person she wants to be and the person she will be. There will be no labels on our child; like everyone else she is a child of God. Every day Brad and I push Canon to strive to be the best person he can be, there will be no difference in what we do with Claire. I know there will be struggles a head and I know every day won't be perfect but what I do know is that every day will be faced with an open and optimistic mind set that each day we are given is a new chance for success and an opportunity at a greater life.

I will try and do better on getting on here and giving an update on sweet little Claire Bear and to keep the blogs coming on my journey to becoming a "Super-Mom." Thank you for all the prayers and comments people have sent us on Facebook, they are much appreciated.

Being There...

Being there...

This weekend Brad and I brought in the new year with a much needed movie night!! The  movie we watched was "The Help." 
 Amazing movie and with so many great meanings behind it. As a mom, this movie in some ways touch my heart and really put prespective in the meaning  "being there" for your spouse or your child. Being there for someone can come in many different ways, whether it be emotionally, physically, or mentally. All three are extremely important for any relationship. Let me explain...

The movie "The Help" was by far one of the best movies I have ever watched! In the movie Abbaline was the help and May Mobley was the little girl she looked after. Every morning Abbaline woke up May Mobley and told her this phrase, "You is kind, you is smart, you is important." I want to scream this to the top of my lungs and say WOW!!! What a wonderful way of making a child feel the way everyone should feel about themselves. I would bet money that if every day you said positive things to your child you would see a difference in behavior and a difference in learning. When a child has positive feed back coming from some one else they are sure to do they best they can. For example; When Canon is putting together a puzzle I will say as he is doing it "Oh wow Canon it's lookin good!" or "This is going to be beautiful!! Keep Going!" Canon's response when he finishes is normally something like this " I made dis for you mommy" or "Look mom, Look what I MADEEE!!!" That little munchkin is so proud of himself he can barely stand it! Putting confidence in children will change the way they do things, they will strive for the best because that's what confidence does. Confidence puts the child in the right mind set to make things happen or to help them get a positive out come. Encourage children, help give them the right knowledge they want and need. I feel at the end of the day is all Canon wants, is to see approval and love. I know many adults to include myself that still find themselves seeking approval from their parents; I don't believe that feeling ever completely goes away. Everyone wants to make people proud of them especially the ones they care most for.  I know every day I try and be a good wife and mother to our children that brad can be proud to call me his own. I know every day I try and be the woman my parents taught me to be. 
To encourage or give confidence every day in someone is like turning on a light bulb in their head that says "hey, you can do it" or like the movie "you is kind, you is smart, you is important."

Being there for someone is not just a physical motion in life to stand and watch over someone; being there is like the phrase in the movie Juno--

In my opinion the best thing you can do is find a person who loves you for exactly what you are. Good mood, bad mood, ugly, pretty, handsome, what have you, the right person will still think the sun shines out of your ass. That’s the kind of person that’s worth sticking with. 

I would say that phrase can go with any relationship; family, friends, you name it.  I KNOW my husband is the true love of my life and we have been up and down to figure that out. I have four best friends that I KNOW if I picked up the phone they'd come running Hell or high water. I KNOW that my family puts the fun in dysfunctional family but they all are there in the good and bad times together. Being there is not just a statement; it's an action. That's what it's all about people!!!

The Land of the Unknown!

Tomorrow will be my fist day back to work after having Claire on October 28th. Right now it seems a little bitter-sweet; I'm extremely pumped to return back to work and get back into a regular routine. Although I am positive that when I have to leave my Claire bear for the first day I am sure to cry majority of the car ride there.  Thats good for me... I cried the whole day at work when I had to leave Canon for the first time. 
As a person male or female, you form attachments. For most woman you bond with your child the whole pregnancy; when I got pregnant with Canon some one told me "Channing, you became a mother the moment you found out you were pregnant; Brad will become a father the moment he holds the baby for the first time." My attachment to Canon was like no other; I felt that there was no one that could love and take care of him the  way I could. I was terrified to even leave Canon for an hour with Brad so my mom could take me to get a pedicure (more like made me get a pedicure. I was little crazy) 
Being a mom is what I like to call walking into an unknown land... Anything can happen. Bringing home your baby for the first time is terrifying & exciting all in one! With Canon i felt that it was necessary that I sit in the back seat with him to make sure he was okay and had a safe journey home (WTH) with Claire I drove home! HA!! I  had completely different pregnancies with both. Canon was FABULOUS!!!! No morning sickness, I felt like I was glowing the whole time. My water broke at noon (titans kickoff!!) and pushed for 10mins maybe a little less and BAM! Four o'clock my gorgeous Canon was in my arms. Claire's another story... Terrible morning sickness, a bumpy road the whole time; let's just say from august to October I had 28 doctors appointments. We got some scary news but it wasn't anything a little love and prayer from friends and family didn't get us through. Claire has been a rock star from day one; I have faith she will continue to be one. 
Being a parent, it's as if someone whispered in your ear and said good luck now its your turn to worry. My mom has always told me; you will understand why I worry so much when you have kids of your own. Well... she was right,(Dang!!) I am what you call a scholar in the worry wart department. If Claire so much as breathes funny at night I'm awake. If Canon coughs at night... I'm awake! If Canon pee's in the bed I think maybe its  psychological for him and what if he feels he's not getting enough attention.(poor Brad... He thinks I'm a nut bag with some of these theories) 
These munchkins are my life and it doesn't matter how many books you read or apps you might have on your phone or what advice your family and friends have given you; none of it matters. No book can tell you who your child is, your child is not made from pages in a book, your child is made from you. Learn from your children they will teach you much more than any book. 
Canon has taught me that every one should live life by waking up with a smile on their face. He is three and it feels like he already has the concept of self-fulfilling prophecy -- such as if you wake up in a good mood and you tell yourself this is going to be a great day, more than likely you are going to do everything to make it a great day. Now if you wake up saying this is going to be an awful day , guess what?? Your day will probably be pretty poopy! Now why can't some adults live life like my three year old and be happy all the time. It's a proven fact that it takes more muscles to frown than it does to smile. 
My darling Claire has taught me not to give up,to have faith, and to not just walk aimlessly through this life of the unknown as parent but to walk with a purpose. I might not always know where I'm going or what I'm doing half the time but what i do know is that I'm not the only one in this land of the unknown and I am going to do the best that I can. 
The Land of the unknown has been around for ages; there's no perfect path. You create the path and hopefully give good direction to where your children should continue their own path into their future. Mistakes will be made but the important thing is that's the best way of learning. 

Bringing in the New Year with some good ole fashion LOVE!

There's a book called Love by Leo Buscaglia; I would recommend this book to anyone whether you are married, single, dating, or whatever your status may be.In this fabulous book Buscaglia talks about how people do not fall into love but grow into love. What a puzzling statement for some people; mainly for women who have believed in true love and   their prince charming who they will find and fall madly in love with. Well after reading that statement I really thought about it...I decided i didn't want to fall in love, I wanted to slowly sink into it. (sounds romantic huh?) 
Brad and I are truly the new age American family. Dated six months, We moved in together and BOOM nine months later sweet baby Canon! We didn't get married until canon was almost two. The way I looked at it was I didn't want him to marry me or feel obligated because I was having his child. I wanted him to marry me for the real deal holy field. I wanted that man to wake up every morning and look over next to him to see his wife that he couldnt or didn't want to live without. I wanted to be his partner in crime,  his emergency contact, his better half (haha!) and his best friend. He knew we were going to work because "I am just as crazy as he is" as someone once said. 
The importance of this topic today is one that I share with each one of my friends or family before they get married. Raising children is a walk in the park compared to making and keeping a successful marriage. For your children, when they are born it's as if there is no limit of love you have for this little human being.  An unconditional fountain of love that flows freely. As for your spouse, this love grows to be unconditional as you grow as a pair. Even after being married, you continue to grow and strive as a pair. You learn your funny quirks about one another; some of them you love and some you hate but those little quirks are what makes the person of whom you love who they are. There  is no such thing as a perfect marriage; A marriage is not going to survive only on love, you have to have the "ates"
 1.) you have to communicate- highly important.
2.) you have to fornicate ---Yes I just wrote that!! :o) I'm writing the truth...
3.) and lastly, you have to appreciate!! Appreciate one another, whether it's when you wake up and say "thanks for being you babe;" big or small things. Just let them know you are aware of what they do for your and/or others. 

Everyone has their ups and downs and much like the good saying if you only have high mountains without the little valleys in between what makes getting to the top of that mountain feel so good without a little challenge.  

Love and trust yourself if you can do that then you can love and trust another.  Here's a secret... Brad and I have done a lot of things backwards but our love is going to continue to take us forward.

Freaking Fantastic!!

On a regular bases my husband Brad often says channing, you need a hobby (like scrap booking or crafting of some sort.) although what he does not know is that every day I work very hard at my hobby! Being a freaking fantastic mom is my hobby! Or as my friend Erin would say being the next June Cleaver except I am more modernized. I do have a full time job that I absolutely love which when I am working and not on maternity leave a lot of my time is spent on my next "work goal." I try an set a goal to achieve such as a promotion or take on an extra task at work. Much like my work goals I set Super-Mom goals. 

I am a firm believer that you are either at good mom or a freaking fantastic mom. I do not believe in a bad mom; I believe in a biological baking oven that does not give someone the right to be called mom. In my book, a freaking fantastic mom goes that one extra mile (or maybe a couple of miles). Someone who bakes cookies or cupcakes with their child for their birthday or school party rather than going to the grocery and buying them. Your child isn't going to care if they don't taste as good as wal mart or kroger's cupcakes, it's the simple fact that they made them (helped you)! You are making memories people not buying them!!! "Oh yeah, do you remember that one time we went to Kroger and you bought me cupcakes for my class?" WTH who is going to remember that! Making cupcakes and cookies or anything at matter is going to be great no matter how bad or good they taste or look. The most important thing anyone can ever give someone else or their child is their time. Time is one thing we all have in common; we don't have much of it but it is one of the greatest gifts you can give another. 

Just a reminder, these are all MY opinions. All my statements start with I believe or I think and ect. These are not proven facts; these are just some thoughts. I don't want to offend anyone. :o) 

Dedication

I would first like to dedicate this blog to my sweet little Wise Family that gives me my inspiration and wonderful memories. I would also like to dedicate this to my best friend Whitney; to you my great friend here is my Wise-dom (HA!) and mistakes. For my first official blog I will give a little introduction about myself and my amazing Wise family. My husband Brad is the man that stole my heart with his sarcasm, hilarious-asshole personality, he is my serious sportsman, and at the end of the day the man who is there for me and our children with love. Canon is our three year old little Brad made over but with more love in his whole body then most people have in their pinkie finger. Claire Bear is our two month old miracle baby and every day we grow to love her more as she shows us the little person she is growing into. Enough about the family and on to the first topic. Don't go cheap! (Whit here's your first item to remember on your way to becoming the future Mrs. Kogut.) I certainly don't mean spend all your money on ONLY name brand. Don't get me wrong I love the next deal I can get but there are certain things on my list that people should never go cheap on. Top Five Items: 1.) Toilet Paper-- Why on earth would anyone ever want to wipe their butt with sandpaper or cardboard just to save a few pennies is beyond on me. I protest SAVE THE TUSHIE!!! 2.) Water Hose-- This is for you B-rad!! If you buy a cheap water hose is all I have to say is you get what you pay for... a leaky mess!! 3.) Trash Bags-- There is nothing more frustrating than pulling up on those plastic strings then to have all that trash fall out of the bottom of the bag... Oh you were just saving it for floor; Once again, you get what you paid for. 4.) Tin Foil-- Thin and easy to rip.... enough said. 5.) Campbell's Soup ( example: Cream of Chicken, Cream of Mushroo'm, and ect.)-- I know if saves you a few pennies on the great value but people if you have ever really tired the difference by setting them side by side and do the real finger taste test youl too will then know... DON'T GO CHEAP!!!