Halloween

Today has certainly been a challenging day as well as trick or treating last night. It is just another example of continuing to live without Evan and all the life experiences we will miss with him. Evan absolutely loved Halloween. He loved to dress up! I used to say that everyday was Halloween in our house because the boys always played dress up, mostly in Superhero costumes.

Times like these are emotionally draining. Last night, the tears came when I was getting Noah ready to go trick or treating. I should have been getting two little boys ready to go. I kept wondering what costume Evan would have chosen. What Superhero would he be into now? His favorite costumes were his Spiderman costumes! He loved the red and the black. As much as I didn't want to let it go, we tucked his red one in his little casket and buried it with him. We thought he needed it more than we did. I will never again get to see Evan dressed up and ready for Halloween.

While these times can be filled with emptiness and pain, Nate and I are just so grateful to still have Noah to do these things with! While Evan is no longer here on earth with us, we still owe it to Noah to give him everything we have and to make his experiences wonderful. However, it breaks my heart for Noah not to have Evan by his side. I live with this thought everyday.

Halloween used to be such a great holiday for our family. We would begin thinking about costumes in August! The month of October was filled with lots of fun activities and trips to the "BOO at the Zoo" or Eckerts Fall Festival. Now, some of the things associated with Halloween such skeletons or headstones bring nothing but pain. This is the first of the big holidays we have to get through this year.

Here are some Halloween pictures of the previous years. In Evan's case, these pictures are all I have to hold on to...

Evan's 1st Halloween

This Halloween was my favorite! Evan wanted to be a pirate and was so insistent upon Noah being a parrot! He told me that "a pirate has to have a parrot!" So I spent hours cutting, stitching, and gluing felt into wings. Evan always came up with the cute ideas!

This was our last Halloween with Evan...

Final Total!!

We officially have a final total for A Night For Evan! After all the hard work everyone put in to making this event happen, we are able to send $13,000.00 in honor of Evan to SUDC! (Sudden Unexplained Death In Childhood) This money will help parents like us who have little or no answers as to the cause of their child's death. The SUDC Program has helped us in so many ways, and for that, we are truly grateful. We are so happy to do something that Evan would be proud of! Thanks to everyone who made this possible!!! We could not have made this happen without all of the support!

A Night For Evan!

All I can say is WOW! Our trivia night to raise money for SUDC (Sudden Unexplained Death in Childhood) was extremely successful! Nathan and I were completely taken by the amount of support we had and how many people came to honor Evan. We had around 400 people, not counting the workers from "Team Evan". For the past three months, "Team Evan", which consisted of about 20 of our closest friends, worked their tales off to make this event happen. We solicited over 300 businesses and spent countless hours working on letters, flyer's, baskets, food, and various other arrangements. We could not be more grateful! God has certainly blessed us with an amazing amount of support in our time of need.

Our Trivia Night was a night that revolved around Evan. He loved Superheros so we thought that would be a great theme! Most people came dressed in some type of Superhero attire. Many even wore costumes! We also had a contest for the table with the neatest table decorations! The two winning tables consisted of a superhero table with everyone dressed in costumes and a handmade Spiderman decoration. Evan would have been so proud!

We also had about 75 items up for auction, all of which were donated from surrounding businesses. Then we had about 20 items for table raffle and about 40 items for silent raffle. We had items ranging from $10 to $900. During the big intermission, we had a live auction consisting of St. Louis Cardinals memorabilia. It was amazing! A BIG THANKS to all who donated to our event! We are so grateful!

People keep asking us what how much money we raised. We are waiting until Friday to announce the big total! Here are a few pictures from "A Night For Evan."

Final Sentence...Life Without Evan

Here is a picture of Noah on the beach...



It has been 151/2 months since we lost Evan. I think about him every hour of every day. Not a moment goes by that I don't wonder what he would be doing right now. Each school bus brings tears, seeing other little ones his same age is grueling, yet we have the need to live vicariously through each one. While it is getting easier to be around children his same age, the sadness lingers constantly. I see pictures of kids and their accomplishments and my heart just breaks again and again. Evan should be doing those things also. In an attempt to dodge traffic one day, we took a detour and ended up passing the T-ball field where Evan played ball. Nate and I saw all the little boys in their little ball uniforms running on the field. We both lost it! Is it always going to be this way! I find myself avoiding certain situations because of fear.

I am beginning to understand that losing a child is a life sentence. LIFE WITHOUT EVAN! This means every holiday we don't get to by him presents or a new church outfit, every birthday we don't get to watch him blow out his candles, every wedding or graduation we get to wonder what would Evan be doing or would have done. All of these occasions in which people are generally happy and celebrating means we get to sit in a cemetery and cry! On the first day of school I sat and cried because I didn't get to put Evan on the bus and send him off to 2nd grade. I can't imagine this ever getting better. Our whole lives from now on will be "what would have been". All I can do is sit and reflect on memories and pictures from past holidays and events.

Sometimes waking in up in the morning is torture because I truly know that this is not a dream and I am not going to wake up. This won't go away. While in the middle of one of my meltdowns, I asked Nate, will this ever go away? Will we ever be truly happy again? I think back to our old life and how wonderful it was. We were living life to its fullest and enjoying each day with our wonderful boys. We had everything that most people only dream of. Now I walk past our family photo in our living room and see the smiles on our faces wishing that was us today. I see the happiness we once had and wonder if it is possible to ever feel that way again. Don't get me wrong, we still count our blessings every day and we are so thankful to have Noah.

We just recently took a vacation to Gulf Shores. We traveled with friends so Noah would have other kids to play with. The first day was very hard with the realization that all the kids were there except Evan. He should have been there with us! I kept thinking that we had to take a "family" vacation without one of our children. How can that be? We got to go swim in the ocean and play on the beach, but Evan didn't! How incredibly unfair!! This is when I remind myself that Evan is experiencing all the wonderful glories of Heaven and how awesome that is. I sat on the balcony and prayed for God to help us have a good time. I also asked God to send me a sign that he is with us. Two days later we had a small rain storm. After the rain we saw a beautiful rainbow over the ocean. It was so amazing! God was truly there with us and reassuring us that Evan is okay! Everywhere we go we get a rainbow! This is when I usually kick myself in the rear and remind myself to continue to be faithful!

What Is Normal?

Another mom in our SUDC online support group posted this. It is so true in the lives of all of us who have lost our precious children...

What is normal now?

NORMAL is trying to decide what to take to the cemetery for Christmas, birthdays, Valentine's day and Easter.

NORMAL is feeling like you know how to act and are more comfortable with a funeral than a wedding or a birthday party. Yet, feeling a stab of pain in your heart when you smell the flowers, see the casket, and all the crying people.

NORMAL is feeling like you can't sit through another minute without screaming because you just don't like to sit through church anymore. And yet at the same time feeling like you have more faith in God than you ever had before.

NORMAL is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family’s life.

NORMAL is not sleeping because a thousand "what ifs" go through your head constantly.

NORMAL is having the TV on the minute you walk into the house to have some "noise" because the silence is deafening.

NORMAL is telling the story of your child's death as if it were an everyday common event and then gasping in horror at how awful it sounds. And yet realizing it has become part of normal conversation.

NORMAL is each year coming up with the difficult task of how to honour your child's memory and their birthday and surviving those days. And trying to find a balloon or flag that fits the occasion, "Happy Birthday"? Not really!

NORMAL is a new friendship with another bereaved parent and meeting over coffee and talking and crying together over your children and worrying together over the surviving children.

NORMAL is being too tired to care if you paid your bills, cleaned your house, did the laundry or if there is food in the house.

NORMAL is wondering this time whether you are going to say you have 4 or 5 children because you will never see this person again, and is it worth explaining that one of them has passed away. And yet, when you say 4 children to avoid the problem you feel horrible as if you have betrayed your child.

NORMAL is hiding all the things that have become "normal" for you to feel, so that everyone around you will think you are "NORMAL".

Evan's Benefit

“A Night for Evan” is a trivia night to honor our son, Evan David Allen
and to benefit the Sudden Unexplained Death in Childhood Program (SUDC),
a program of the CJ Foundation for SIDS.


Date: Friday, October 9th, 2009
Time: 6pm – 10:30pm
Place: Edwardsville Moose Lodge
7371 Marine Road
Edwardsville, IL 62025

Admission: $25.00 per person or $160 for a table of 8
Includes: Beer, Soda, Desserts,
and Ten Rounds of Trivia
(Bring your own snacks)
7pm – 10pm, Trivia


Decorate your table with your favorite superhero theme!
Prizes given for the most spectacular tables!

Raffles and Silent Auctions

For reservations or to make a donation, please call or email
Daven Allen at 618-655-1141 or allen8500@sbcglobal.net
Kristen Hill at 618-410-7856 or kristen121382@yahoo.com

All table reservations fully paid by September 18, 2009 will receive 10 free mulligan’s.

Please send cash or check to:
The Evan Allen Foundation (make checks payable to the Evan Allen Foundation)
P.O. Box 310, Edwardsville, IL 62025

All proceeds from the night will benefit the SUDC Program
For more information, please visit
www.sudc.org

The Long Search For Answers

Caution: Contents may be disturbing to readers...

For the past 14 months, we have been on a desperate search to find answers as to the cause of Evan's death. We have been told many different things and led down many paths. It has been an incredibly gut-wrenching and horrific ordeal in trying to found out what happened to our precious little boy.

When the autopsy report came back and they told us that Evan had a virus in his lungs that "may" have caused his death, we knew then that there had to be something more. Evan's case then became part of the SUDC (Sudden Unexplained Death in Childhood) program. They have helped us make several connections as well as reviewing his case and conducting more testing. Our first goal was to make sure that Evan didn't have a fatal genetic mutation or disease that could take Noah's life as well. This journey has led us to make calls and requests that parents should never have to do. I had to make the decision to send half of Evan's brain, along with other tissue and organs to San Diego, and the half to the CDC in Atlanta. Not to mention his blood being sent to five different doctor's in various cities. Doctor's and geneticists all over the country have helped us. I had to learn to read his autopsy report! Who wants to read about their child's body being cut apart like a science experiment? These are all things I had to become numb to in order to get them done. Nathan and I desperately wanted more answers!

During our long journey in finding out what happened to Evan, we have come up with many negative answers, as well as differing opinions. We have just recently been told by the CDC (Center For Disease Control) that Evan may have suffocated due to having croup as well. I didn't even know this was possible. According to my own pediatrician, intense coughing and inflammation to the airways can slowly cut of oxygen to the brain. We were told that Evan's brain more than likely shut down first before he even knew what was going on. This would explain why when we found him, he looked peacefully asleep. How does a parent accept this? Again, this starts another whole roller coaster of emotions. First it was the cough medicine and now suffocation? We have been beating ourselves up about this! Why didn't we take him to the ER? Could we have saved his life? Evan didn't really start coughing until he went to bed and had a 99.4 fever. How could something that seems so harmless be so fatal?

Nathan and I have come to the conclusion that we may never know exactly how or why Evan died. I think we just need to work on accepting that this happened, although the constant fear of Noah dying in his sleep plagues our every thought. At least if we had a concrete answer, we could breathe again. I guess this is where I have to really trust in God!

Back in April, we had the rest of Evan's blood sent to PGX Health in Connecticut for a genetic test to detect Long QT Syndrome, a fatal heart disorder. That was also negative. They called a few weeks ago and stated that they had some of his blood left over and that they were sending it to us. WHAT? I have to store my child's blood??? Being that this was the last of Evan's blood left, we had no choice. So, we ordered a medical freezer online. Yesterday that dreaded package came in the mail! It wasn't the cute maternity shirts I ordered from Old Navy, or something special for Noah. It was a frozen package containing Evan's blood leftover from the autopsy! As one could imagine, this sent our emotions into another spiral of sadness, anger, hurt, and whatever else you could think of! This blood is all we have left of our special little boy that used to light up a room with his charm and his smile...