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

Goodbye Summer of 2012

This was a great summer!  We traveled to see friends, Nana and Pop-pop and went to Disney World and the beach!  What lucky kids and even luckier parents to have the luxury to spend such quality time with our kids.  Walt Disney World was alot of fun, although it was very crowded and hot!  We will never again go to the Most Magical Place on Earth at the start of summer vacation!  The kids had a difficult time with the crowds, especially Aliza and weather kept her from
enjoying herself.  We did however find out that we have three daredevils on our hands who love rollercoasters!  Trevor was the most timid of all when it came to the big roller coasters but with his sisters encouragement, especially, Ella, he pushed himself and loved them!

The start of this school year has brought about many changes for our family!  Most importantly, we have three kids in elementary school!  Aliza is in 5th Grade, Trevor is in 3rd Grade and Ella is in full day Kindergarten.   For years, I have anticipated day that I could drop my children off at one place and pick them all up at the same place.  And that day has come!  There is no more dropping one off elementary school, the other off at prekindergarten and the other off at preschool.  I dont have plan my day around a half day preschool program that is only 2 hours and takes me 20 minutes to get there and back... Oh my goodness, I can finally spend some time in my house, taking care of the daily tasks, making dinners and doing laundry without interruption!  Of course there is one small 2 year old who needs my attention, but now she too can benefit from this new schedule... a real nap and a one on one time with Mommy!... It is only three days into our new schedule and I am loving it!

Add caption

Another BIG change this school year-- Tom is teaching in a new school!  He got a position in our local school district at a middle school teaching 6/7th grade Social Studies.  Gone is the 20 minute commute and different calendar.  He will have the same calendar at the kids and is teaching at the same school they will attend for middle school!  How cool is that!  Of course, we may be eating our words when Aliza Grace decides to turn on her sassyness because she thinks she can because her Daddy works there!

The beginning of the school year always marks a new year for Trevor.  He is 8 years old today!  Over the summer he completed his first 5K and is ready to train for more! He is turning into quite a young man.  I noticed today how influential his father is on him.  I heard the garbage trucks and knew that because of the hectic week that we have had, that our trash was not on the curb.  I started running to get the cans and my second in charge ran to get the recycling and brought it to me at the curb.  Then as I was heading back to pick up more recycling he pick up the recycling tub and brought it back into the garage without being asked... a little thing, I know, but an important step in growing up.  He could have just walked past the bin and gone back in the house, but he did the right thing and followed through with the task and didnt leave it for someone else... just like his dad would have done.  Now I'm not suggesting that he would feed the dog or take out the trash without being requested to do so, but I believe he is starting to realize that he is responsible to helping to maintain our home too.  That's a BIG step, especially when you live in a family with 6 people. It give me hope that maybe we are doing some things right and although there are many frustrating and chaotic moments, our values are getting through!

Our Superstar!

If there is a microphone, you can bet Aliza Grace will soon be belting out her latest and favorite tune.  Our local state park has an outdoor summer concert series.  We really enjoy going to the concerts and the kids enjoy dancing and playing with friends.  The other day we were headed to a picnic at the park for a concert.  We told Aliza that we were going to listen to a band and she said that she was going to sing too. We explained that the band was the singers, not her, but she still said that she was going to sing.

While listening to the band, Jimmy and the Parrots, somehow Aliza caught the attention of Jimmy and he came down off stage and danced with her and let her strum his guitar.   He gave her his guitar pic and Aliza was officially a "groupie".  She didn't stop dancing for the entire first set.  She found her passion.  She was in her element!  The band took an intermission and Aliza took the opportunity to tell Jimmy that she could sing a Zac Brown song too, Toes in the Water.  Jimmy told her that she could come sing with them if she wanted to... Heck yeah, she said.  And we had spent half an hour before the concert telling her that she was not going to sing, but just listen to the band.  SO here it goes... the band played two additional songs and then Jimmy shouts into the audience, "Aliza, come up here!" and up she goes.  Completely fearless, she starts belting out Toes in the Water.  Initially Jimmy was sharing his microphone with her, but by the end of song she has completely taken over and hip checked Jimmy out of the way.  I was so amazed at how she was totally unfazed by the audience...this was a really crowded event, maybe 1500 people, and she showed absolutely no fear.  She did lose her place in the song a few times, but recovered just fine.  We owe a huge thank you to Jimmy and the Parrots for allowing her to sing with them.  She talks about it often and it will be something she will always remember!

http://youtu.be/6yU7dAPj7ao

TEN YEARS OLD!!!!!!

Oh my, it seems almost unreal that ten years ago today I gave birth to our first child, Aliza Grace.  I still remember the day as vivid as yesterday. On the day before, I was admitted to the hospital because my water had broke 5.3 weeks early.  Instead of inducing me immediately (it was only 11am), they decided to wait until 4am the next day... the reason, because this was my first pregnancy, they were anticipating it being a long labor and they did not want me to deliver in the middle of the night when the necessary neonatology and pediatric cardiology staff were not immediately available.  They wanted to be prepared. 

Looking back now, how was I not a nervous mess!!! Seriously, my life was getting ready to change forever, did I not realize this!!! Not only was I going to become a parent for the first time, but I was also going to be giving birth to a child that the medical staff did not know whether she was going to live or die.  We knew she would be born with Down syndrome and  a heart defect and would require open heart surgery, but she was almost 6 weeks premature.  The cardiologist had told us that she most likely would not survive if born before 34 weeks gestation. At 4am they began medications to induce my labor.  Three hours later I was ready to start pushing to the surprise of the doctors.  Once I started pushing her heart rate dropped and delivery became an emergency. They atmosphere in the room quickly went from calm to very intense.  At 7:28 am our beautiful daughter was born and so our journey began.  So much for planning and being prepared.  I remember holding her for the first time and being almost afraid to become attached to her.  She was so blue and swollen. She did not look like any other baby that I had ever seen.  My heart broke.  It was at that moment, while holding my first born, that for the first time I questioned our decision to continue my pregnancy.  The reality had set in that our child was different. 

 Ten years later, I am so thankful that my child is "different".  She has taught me so much and I know I have a lot more to learn from her.  There are so many things that I wish for her in her life, but most importantly I want her to know how much she is loved.  She gives and shows love unconditionally and with such sincerity.  It is sometimes difficult for others to see past her differences and negative behaviors to see this love and to show her their love.

Aliza's Heart

Often as parents of a child with a heart defect we find ourselves waiting for the shoe to drop. We are always wondering if Aliza's heart defect is the cause for this problem or that. When she was 3 weeks old she had her heart defect repaired, however the surgery left her with a valve that does not function properly and may one day need to be repaired. She is on a daily heart medication to lower her blood pressure so that her heart does not pump as forcefully so that the malfunctioning valve does not pump blood as forcefully back into her lungs, causing lung problems and eventually heart failure.

We have always known that one day we will be looking at another heart surgery and we pray that this is years away. As Aliza is getting older, she is almost 9, she is getting smaller...No, she is not shrinking, but she is not growing. She is losing weight, but she still looks very healthy and is very active. Her siblings sure are gaining on her. Aliza is 47 inches tall, and has been for over 1 year, Trevor is 50 inches tall and sprouting fast, and Ella is 46 inches tall (she is a tall 4 year old) So you can understand our concerns that maybe Aliza's heart is not able to keep up with her hence the lack of growth. So yesterday was our visit to our wonderful, amazing, kind, I cant say enough good things about him, Cardiologist Dr. Michael McCulloch at Nemours Cardiac Center. We have checked in with him every 6 months for the past few years. We discussed our concerns with him...He is a dad of two young kids and I really feel he gets it! He does not think we are crazy or paranoid parents, how could you be when you have a child with a HEART defect... We are not talking about a broken limb, we are talking about her heart. There are many things in life we can live without... Aliza can not live without her heart and I can not live without her. And this love I have for her may cause me to worry and make a bigger deal out of some things that may seem trivial to others. I owe a huge thank you to Dr. McCulloch for understanding our love for Aliza and validating our concerns while at the same time easing our fears. According to the "Great Doctor" Aliza looks great! While she has lost weight and not gained height, we have can rest assured that her little ticker is ticking away. We charted her on a Down syndrome growth chart and she is on the same curve she has always been. She has dropped within her curve, but not dramatically. As her peers are shooting up around her she this makes her petite stature so much more evident, but who cares about what is essentially a cosmetic concern. And now we breathe, at least until the next issue...

What a Day!

I have been a bit caught up in parenting to think about posting on the blog. Quinn is now almost 7 months old. I am truly cherishing every moment with her. She got her first tooth the other day. I cried! It was so bitter-sweet for me. This was my last "first tooth" moment. She is growing so quickly, I just want to slow life down a bit and keep her an infant forever. She is such a good baby. She laughs and giggles and really enjoys everything that her brother and sister do.

Today was a day that I want to remember, thus the reason I created this blog, so that we would have a journal of our family journey.

This morning, after Tom left for work, Trevor said that his front tooth was loose. I looked at it and told him that I did not think it was ready to come out just yet. He disagreed and insisted that his tooth was on its way out! I told him to take a bit of an apple, which he did without the desired result. I turned around to do something and then look back to him and he is biting on a fork. Are you kidding me, a fork Trevor, I said to him. No, do not bite on a fork. He says I need to get this tooth out. Okay, so bite the apple, which he does again, without a result. Next I see him in the family room punching his mouth with his fist. He is seriously punching himself in the face. This is a child determined to go to school with one less tooth. I told him to wiggle it from side to side. He starts wiggling, biting the apple, punching, wiggling, biting, punching when all of a sudden the tooth goes flying across the room. I am not sure which movement worked, but finally the tooth was out. We all move into the kitchen to celebrate and Aliza says to me, "Mommy, that makes me cry." I looked at her and she was very pale. I kinda giggled to myself because Aliza is a very intense person. When Aliza has a boo-boo it is a big deal. The world must stop and everyone must know that Aliza has a boo-boo, no matter how big or small. She shows her feelings without restraint. Her feelings and emotions are always very close to the surface, no matter what the situation. Aliza gets upset over very small things, for example she does not want anyone to touch anything if their hands are wet, she gets upset if I reach in to the shower to adjust the water because my clothes may get wet, she needs band aids for invisible boo-boos and sometimes cant walk, talk, move when she has a boo-boo. So I guess she was really internalizing Trevors lost tooth and it was making her uncomfortable. She was so uncomfortable that she fainted. I have had many firsts with my children, but I did not think that this would be one of them. Immediately after she told me "that makes me cry" I thought she was looking kind of pale, her eyes were a bit glazed and she was very still. Her gaze drifted toward the right, then I said "Aliza, its okay." She did not have any tears and did not say anything. I was standing at the sink making a glass of warm salt water for Trevor to gargle. I looked back over to her and she lost her balance and fell into the refrigerator and then went down to the floor. I caught her before she hit the floor, it was really in slow motion. She went limp in my arms. I started shaking her and telling her to get up. On one hand I thought it was a bit funny that she was so bothered by Trevors tooth and on the other I was praying that she was okay. It took her a few minutes to really "wake up". She was really out of it for a bit. I helped her to stand up and we both took a deep breath. She sat down, I gave her something to drink, and we began our day. I called Tom, and then her Pediatrician and emailed her Cardiologist. Everyone agreed that this was likely not a seizure, but a response to something that she perceived as gross and this was how her body was dealing with it. Little did she know that I had planned to keep her home from school this morning and take her to get blood drawn for her thyroid and hemoglobin. I started wondering how she was going to handle seeing her own blood.
While we were walking into the hospital to have her test done, she looked at me and said, "Mommy, I am going to be brave. I am not going to cry!" I said "Great Aliza! Do you want to go back by yourself?" thinking of course there was no way that she was going to be able to do this without a huge battle. She said, "Yes mommy, you stay here, I can do this, I am brave!" The technician called her name, she looked at me, stood up and went back with the technician. I said, "should I come with you", she said "no, sit down." Five minutes later, Aliza came back into the waiting room. I stood up and prepared myself for the battle of trying to get her back into the lab area. Then I noticed that she had a sticker in her hand. The technician looked at me and said "she did great!" I was stunned. Aliza said, "I was brave Mommy. I did it all by myself." As I am writing this there are tears streaming down my face. I can not believe that she did it. Of all the times I have had to hold her down, legs wrapped around her little body, someone else holding her arm and someone else holding her head, Aliza screaming and terrified, and I am equally tortured at her perception of to pain that I am a part of inflicting upon her. And today she did it all by herself. No one had to hold her down, she was a big kid. I am not sure which one of us was happier... What makes this day even better is that it started out with her fainting at the idea of her brother losing his tooth, and yet she was so brave and strong when it came time for her to give blood. Next week she is having a tooth extracted... Are we pushing the limits of Braveness???