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.