Friday, November 22, 2013

Roaring one day post surgery

Aliza is barely awake but wanted to make a video for her friends. You can see the video here.
http://youtu.be/2E5C4J6MHEE

Alizas Recovery


In early November we learned that our beautiful and strong 11 year old daughter would need to have her second open heart surgery. Her first surgery was when she was 3 weeks old. As her parents we again needed to do one of the hardest things in our life, hand our baby girl over to a surgeon for a 6 hour surgery. Her chest would be opened, she would be placed on heart/lung bypass and her heart would be repaired. We have done this before, but this time it was different! This time she was the big sister, a best friend, our family's jokester, a swim team member, and an inspirer to so many. She is well loved by so many in our community, she is recognized every where she goes because of her perseverance and dedication and hard work. She is my hero and a hero to so many others, and she doesn't even realize how inspiring she is to so many people. Aliza has Down syndrome and there is nothing about her that is going to keep her Down! Alizas favorite song is Roar by Katie Perry. The first day after her open heart surgery she wanted to create a video for her friends to see that she was okay. She was barely awake, but danced in her bed to Roar. 5 days following the surgery she wanted to make another video (attached) This kid is amazing.She is determined that nothing, including open heart surgery is "going to keep her down." She Roars like I have never seen someone Roar. She has taken this challenge head on and has made remarkable progress. So many physicians have commented that her recovery is like none other!
http://youtu.be/w8KKE0vsTBg
Here is her story
http://www.caringbridge.org/visit/alizapidgeon

Monday, November 11, 2013

Another Chapter

I have really not been doing a great job with keeping with this blog, but thats okay, because I have been doing a pretty good job keeping up with four kids. :)  At least I would like to think so!

Aliza recently pulled out a photo album from when she was born.

I found it really touching that on the very same day we learned that Aliza was going to need a second heart surgery, she pulled out the album from when she was born to look at the pictures from her first surgery.  Looking at those photos I recall every moment of the day and hospital stay as vividly as though it was yesterday. I remember that the four hour surgery seemed to go so fast.  I remember that I never had any fears of post operative complications or medication issues.  We had been in the hospital for almost a week before the surgery, we maybe were too comfortable.  I think about that time and wonder how we made it through the day and weeks ahead smiling and seemingly without worry.  After all, we walked out of the hospital with a healthy baby girl.

This time heading in to open heart surgery is so different.  This time I have a daughter that I can't imagine living life without. I would have said the same thing at her first surgery, but in hindsight, I don't think I really understood how deeply a parent loves their child. Since we knew about Alizas heart defect before birth, I think I reserved a lot of my emotions and attachment to her until after her heart was repaired.  I loved her from the moment we learned I was pregnant, but I knew that love could be taken away.  For the past eleven years we have given everything we have to care for our children.  Our love, our time, our support.  We have given our children our everything and in return they have given us the unconditional love that only a child can give.  Aliza is a vibrant, loving and creative 11 year old. She is spunky and intuitive.  She has opened my eyes to so much more than I ever imagined.  Once upon a time I thought that people with disabilities were defined by their disability, but now I really understand that disability is only a small part of that persons life. Our lives are what we make of them and Aliza has taken the reigns of her life and run.  At eleven years old she has achieved so much more than we could have dreamed for her.  (I find myself saying this a lot, and then she surprises us even more)

Now as we are 4 days away from her heart surgery my mind is full of so much worry and I am an emotional basket case!  I know that she is going to sail through this surgery without any complications, but what if she doesn't?  What if she has complications?  The list of possible complications is so long and overwhelming. I am trying really hard to stay positive and only think about how healthy she will be  once her heart is fixed.  And unlike her first heart surgery, we now have three other children to worry about.  They will be fine without their mom and dad around for a few days.  They will have to be.  They will be surrounded by our wonderful family and friends who will swoop in and take our place while we dedicate this time to Aliza.  But even though they are not expressing it, I know they are impacted by the elevated stress level in our home.  I am sure they understand that this is a big deal.  The other day while we were talking about the upcoming surgery, Trevor said, "Mom, since they are working on her heart, do you think they can make her less mean?"  They have a very typical sibling relationship.  I wouldn't say that they get along great, but I bet they would be the first to defend and stand up for each other.

It was so much easier to the first time around.  We didn't have time to think about the complications, the risk, the other kids, and Aliza's needs. We have also started preparing Aliza for the surgery.  We have talked about being in the hospital and that she is going to have a new scar where her old one is.  We have talked about people coming to visit her and that Mommy is going to be there with her the entire time.  I am pretty sure that she understand somewhat what is going to happen.  While talking about the surgery, I told her they needed to fix her heart and they would get to it through her chest.  She said, "I don't think that is going to work for me Mom," and then she pointed to her left side and said "my heart is over here."  She also told me that she didn't want to go to the hospital, that she wanted to stay here with her family.  That broke my heart, but then when I told her that I would be with her the entire time, she said, "Okay, we can do this!"

I have to keep going back to that. It was very simple, but so meaningful.  Yes, we can do this!

Please pray for Aliza and the doctors and nurses taking care of her.  Her surgery is scheduled for 8am Friday,  November 15, 2013.  We will update her progress and post operative recovery on the Caring Bridge page dedicated to Aliza.  You can visit the page by following this link. http://www.caringbridge.org/visit/alizapidgeon