Since the weekend Aliza has not been feeling well and has been in a lot of pain  We went for a cardiac checkup today and found out that the wires that are holding her sternum together are fractured.   There is a chance that scar tissue and bone will form over them and nothing will need to be done... (You can see the protruding wire in the middle of her sternum, basically it is poking her from the inside out) We are going to give her lots of pain medicine over the next few days and hope this heals. Over the next few days will know if we are headed back into surgery on Monday or Tuesday to remove the wire. On the upside, her heart is perfect!!!  She is still going to school and is really excited about her Choral Concert this evening.  Nothing,  not even a fractured wire poking through her chest is going to hold her back!  Gotta love her persistence! Here are a few pictures from the past week, getting ready for Christmas and our big unexpected snow storm. Aliza watched from inside with the dog, while the other kids enjoyed our sledding hill in our backyard.

Thoughts

As I stepped into the shower yesterday I was blindsided by so many thoughts from a few weeks ago.

The night before the surgery I had spent the entire night awake, lying in bed with the same thoughts going through my head, over and over and over again.  I had cried silently most of the night, afraid to wake anyone up.  I knew that Tom was awake next to me, but it was understood between us that nothing more could be said to make either of us feel better.  Talking about our fears for the upcoming surgery was too hard and we didn't want to speak the unthinkable.  During this entire week and a half leading up to the surgery, at no time did we ever talk about the risks of the surgery and the possibility that Aliza might not make it through the surgery.

On this day I was taking a shower in the children's bathroom, unlike most days when I shower in our bathroom.  The last time I was in the children's shower was the morning of Alizas second open heart surgery.  As I stood there yesterday, the memories of my feelings the morning of Aliza's surgery came flooding back. Its funny how a small thing can bring back so many feelings and memories.

I remembered standing in the shower, at 5:30 in the morning, numb.  I remember time felt like it was standing still.  I was shivering and cold.  The water was cold, but it was as if I couldn't feel it.  I knew that eventually the water would warm up and I just stood there waiting.  I waited and waited, thoughts running through my head.  Thoughts of what the day ahead held for me and my family.  Our precious little girl was going to have surgery and handing her over to the surgeons could possibly be the last time I would see her.   This shower was the first step that I needed to take to get Aliza to her surgery but for some reason, the water was not warming up and I was still standing in the cold but yet couldn't do anything to make it better.  Finally, after about 10 minutes of standing in the cold shower I realized that the reason it wasn't warming was because I hadn't turned on the hot water.  I was so consumed with the  "what ifs" running through my head that I could not function.  It was almost as though the numbing cold was easier.

Eventually, I was able to get myself together and motivated to start this day.   I knew that without this surgery, Aliza's body would begin failing.  It could be a few weeks or a few months, but one thing was for sure, not having the surgery was not an option.  We had asked all the questions, done all the research and felt very confident in the skills of the surgeon and the cardiologists who would be caring for her post-surgery.  However all the preparation in the world can not prepare you for the moment you walk away from your child and leave them in the operating room.  We strengthen each other and I felt myself lean into Tom to hold me up.  Two weeks later, my emotions about this moment are still so raw.  Looking back, I had so much fear that I would not see Aliza again, or that she would be forever changed.  I know that my fears are all very normal, but in our life we have been challenged so many times.  It seems as though we are always waiting for the other shoe to drop.  I suppose this is reason I could not get beyond the fears of the complications and "what ifs."  I feel like there is always a complication or challenge that we have had to get past.  On the positive, we have always overcome these challenges.  Maybe I am just a pessimistic person, but I had thought about every possible scenario at some point leading up to the surgery.   Never did I believe that just one week after surgery Aliza would be home and two weeks after surgery, she would be back to school.

Aliza's strength is amazing.  Her recovery has been incredible and I am astonished by how well she has taken this challenge.  Her heart is functioning so much better than it ever has in her entire life.  She is still taking a medication to assist her heart, but hopefully in the next few months she will be off that medicine.  She has taken daily heart medicine for the last 6 years, it will be so nice to have her body medication free.  Today Aliza woke up and asked if it was Monday.  I told her it was Monday.  And she then said, "since today is Monday, then I am going to school, right?"  I told her that if she felt well enough to go to school, then I would let her.  Within minutes she was out of bed and dressed for her day, excited to get back to her normal routine and to see her friends.  I walked her into school because she can't carry her backpack yet, and I was overwhelmed with the true joy and excitement of the other students to have her back in school.  What a great feeling for both of us!

Our community of family, friends, co-workers, neighbors, swim team members, classmates and so many others, have all been so supportive.  These last two weeks have been so much less stressful because of the kindness and thoughtfulness of everyone around us.  I am so thankful to live in a community where

we have so much support.  It sure makes raising a child with special needs a lot easier.

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

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

Check out the video I created for the Special Olympics Delaware Project Unify presentation I will be part of at our local middle schools.
Spread the Word to End the Word
Let me know what you think,
Kristin