Thoughts and Reflections about Tommy.

August 20,2009
Today marks the one year anniversary of Tommy’s passing. I thought I would write a post about my thoughts and reflections of Tommy’s life.

Here is a video that Rene aka Tommys Mommy made about Tommy’s life.



When I first started talking to Rene I was captivated by Tommy. He was so adorable and so strong. I learned about Tommy’s health problems and I learned about Congenital Heart Defects. I didn’t even know it existed until I started talking to Rene. I instantly fell in love with Tommy. His smile was one of those that could make your heart melt. I felt a bond with Rene and Tommy from day one. It could have been that Tommy was only a couple weeks younger than Noah but I think it was something more. I honestly think that Tommy was put on this Earth to inspire and educate. He touched so many lives and now through his story and spirit will touch many more. Tommy’s memory will live on forever.

Tommy was special not because he was medically fragile but because he had a purpose and was so determined to survive. I think that people spend their whole lives doing the good things that Tommy did in his 23 months on this Earth. Tommy was a happy little boy and loved to flirt with the nurses. He was a celebrity to them. He had such bright eyes and a radiant smile. I carefully followed every moment of Tommy’s life from the time that he was 10 months old. I laughed at the silly videos that Rene posted. I smiled when he would do something sweet or anytime I saw his little face. I would cry tears of joy when he made progress. I cried those tears of joy when I saw the video of him saying Mama, when he got his trach out and when he attempted to eat the blue water.

Rene was and still is great about answering my questions about Tommy and the health issues he had. She taught me so much. Sometimes I felt like I was asking her a really stupid question. She would always answer and explain everything to me. I am by no means a doctor.

One day when Tommy was in the hospital I got an idea to make him a Get Well poster. I wanted something big and bold that he could study and enjoy looking at. I made him a Thomas the train. Still to this day, I have no clue how I was able to do that. See, since I am left handed I am naturally a horrible cutter. I did it free handed. I didn’t use any stencils or trace anything. I was really proud of it. It turned out really awesome. A Thomas for a Thomas Rene said to me shortly after I sent it to her. I would have done anything for him. Just to see him smile.
Tommy’s life was full of ups and downs. There were Good days and bad days. I know that Rene would never trade them away and that she keeps them all close to her in her heart.

I remember a year ago when I found out Tommy was gone. I remember that I was sitting on my bed on the computer and there was an urgent update on his Care page. I was just washed with worry. She hardly ever updated marked urgent. As soon as I saw the email I logged in to his care page and read the news. I just sat there for a moment reading the words. It took a minute to process and then I just felt a flood of tears. I was bawling so hard. I hadn’t cried that hard in a long time. I didn’t think I was ever going to stop. I think I cried until I had no more tears. I woke up all kinds of people. I went in to Noah’s room just to love on him. I needed my little boy. I also woke up my mom and told her what happened. Then I texted a friend of mine that knows Rene and Tommy and she called me and I told her about what happened. I am not sure how she understood anything I said because I was crying so hard. That was a very sad very painful next few days.

It felt like some horrible nightmare that I couldn’t wake up from. You know when you are dreaming and you aren’t sure if you are. Then something out of place happens that you know couldn’t possibly happen? I was waiting for that moment. I wanted to wake up. I wanted to hear that Tommy was ok. But sadly it was not a dream and he was gone. I spent those few days looking back at Rene’s blog reading thru the posts of his short life. She documented almost everything. I couldn’t look in to his eyes without crying. I was wishing that it wasn’t true. I really miss Tommy. He was a great little boy.

When I went to visit Rene as I mentioned before we went to Tommy’s grave. It was so emotional and real to me. I hadn’t been so it hit me like a ton of bricks. I just stared at the place where he is buried. I know that the part of Tommy that we all love isn’t in the ground. That part of Tommy is in Heaven. He is dancing and singing and laughing with a perfect heart and no scars or signs of a trach.

I am raising awareness for Congenital Heart Defects any way I can. I am helping Rene get Tommy’s story out there. I am helping educate people about CHD. I created a memorial page on Facebook for Tommy. Today is Bubbles for Tommy and I will be out there with my son blowing bubbles for him. Anytime I see bubbles I think of Tommy. I believe that the bubbles are floating to Heaven for him to play with.
I will have a wonderfully exciting post coming up soon so stay tuned.

You are all invited to Bubbles For Tommy.

I got an idea a while back. My great idea is on August 20, 2009 I would hold an event called Bubbles for Tommy. Tommy is my friend Rene's son who passed away on August 20, 2008 from Congenital Heart Defects. You can read about Tommy on a previous post.
Bubbles for Tommy is where we all who loved Tommy or anyone who just wants to help us remember Tommy by blowing bubbles on August 20, 2009. Tommy loved bubbles so much. I thought it would be awesome to fill the sky with bubbles for him to play with in Heaven. Since everyone is all over the US and the World that loved Tommy I thought because we can't possibly get together in one spot. We could symbolically be united together through the bubbles. The sky is huge so it will take a lot of bubbles to fill it.
If you want to participate please blow bubbles on August 20, 2009 at
7 pm Eastern time
6 pm Central Time
5 pm Mountain Time
4 pm Pacific Time
Help us celebrate Tommy's life. We miss and love Tommy so much. He was a strong fighter and an adorable charming little boy.

Tommy

This is an important post that everyone should read. Feel free to pass along the link to my blog.
I am going to be using my blog to raise awareness about Congenital Heart Defects.
I am sure some of you are thinking what on Earth is a Congenital Heart Defect? This disease was unknown to me until I met a wonderful woman named Rene and her son Tommy. A congenital heart defect or CHD is a birth defect. That is caused by an incomplete or an abnormal development in the fetus's heart. It occurs in the early weeks of a pregnancy. Some of the defects are known to have been linked to other genetic disorders such as Down's Syndrome but MOST of Congenital Heart Defects causes are unknown. Sometimes there are other medical problems that are accompanied with CHD. I know what you are thinking this would never happen to my child. Hopefully it never will but here are some very alarming statistics.

400,000 babies in the World are born with Congenital Heart Defects a year. Each day 10,830 babies are born in the US out of those 411 will have a birth defect. 87 of those babies will have a congenital heart defect. Please remember that is EVERY DAY! 365 days a year! According to the March of Dimes CHD is the #1 birth defect.In the US more than 25,000 babies are born with CHD each year. It doesn't discriminate by gender race or origin. There doesn't have to be a history of CHD in the family. The parents don't do anything wrong. The mothers are seldom using drugs or alcohol during the pregnancy. If you are Pregnant, or know someone who is or are planning on getting pregnant please request that you or they get a Level 2 ultrasound to check the heart. After the baby is born please request that they take your child's blood pressure on ALL FOUR limbs. You should be sure that you request your newborn have a pulse oximeter test done before he or she leaves the hospital. It is not invasive and is one of the quickest ways to measure the oxygen levels in your baby's blood.
Let me introduce you to Tommy. Tommy was born 7 weeks premature with a combination
of heart defects and a poor swallow. His heart diagnosis is as follows: Double Inlet Left Ventricle with Transposition of the Great Arteries, Pulmonary Stenosis, Ventricle Septal Defect, and Patent Ductus Ateriosis. This is also known as "single ventricle" or "univentricle". It basically means the blood containing oxygen and the blood without oxygen meet in one place in his heart, mix together, and recirculate. This gives him low oxygen saturation levels in his blood. His poor swallow, also know as "dysphagia" is caused by Cricopharyngeal Dysfunction. The muscle at the top of his esophagus works sporadically. It causes Tommy to aspirate his saliva into his lungs. For this reason, Tommy is fed exclusively by a feeding pump. Tommy had open heart surgery at 4 weeks old, and because of his poor swallow,he could not make it off of the ventilator for 5 weeks. He required a procedure called a Tracheotomy to breathe on his own. Because of the breathing tube,he now has a condition called severe subglottic stenosis. This is scar tissue below the vocal cords. He cannot breathe without his trach. The aspirations caused another condition with the generic term "lung disease". His bronchial tissues are inflamed causing Pulmonary Hypertension. He takes a combination of medicines and requires oxygen 24 hours a day.

Could you imagine having open heart surgery at FOUR weeks old? Most people are at home with their newborn not waiting in a hospital while your child has a major surgery just to survive. Tommy had his first real breath of air without his trach at 23 months. Sadly Tommy passed away August 20th 2008. His heart went into lethal arrhythmia from undiagnosed bronchopneumonia. That was about 5 weeks before his second birthday. Tommy was a bright child with big beautiful blue eyes. His smile would make you smile. He was full of charm and life. He was medically fragile but he was definitely a WARRIOR. He had such a strong will. He brought joy and hope to so many people. Tommy loved to play with bubbles and watch Finding Nemo. His favorite song was The Itsy Bitsy Spider. He is loved and missed by everyone who was blessed to know him. Now Tommy is in Heaven and he is singing and playing. I know Tommy is looking down on those who love him. He will always have a Nemo shaped spot in my heart.
Please remember this information, pass it along. Help me raise awareness for CHD. In Memory of Tommy who is Forever ONE!