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...

The Veil

As we get farther away from the day Evan became and angel, the more we are enjoying the things that we once did. Now that Summer is here, we are doing lots of fun summer activities with Noah.

We attended a 4th of July party over the weekend. Noah loved the fireworks! This is a good example of how we really try and have a good time with family and friends. We are getting to the point of actually starting to enjoy life again. While driving home, Nate and I discussed how we walk around with veils on our heads covering the pain and sadness in our hearts. We put on our happy faces and go out into the world. This only lasts so long before we hit a breaking point. We can only wear the veil for so long and then the time comes to take it off. For me, this usually means days of meltdowns. While the sadness and emptiness is always with us, we are learning to focus on the positive aspects of life. We still have so many blessings to be thankful for.

After a day distraction and fun the immense guilt creeps in. We don't get to do anything with Evan ever again. As time goes by it does seem like we wear our veils less and less, but they are still there. Our child died so how do we learn to live again? Slowly, we are learning to create a "new" normal for our life. While we will never stop missing Evan and the pain will always be there. I hope that someday the veils will disappear.

Fly Away

I have been lazy about blogging lately. I am attributing this to lack of motivation and morning sickness! That is my excuse and I'm sticking to it! Anyway, I think the blogs about Evan's passing took everything in me. I needed to recover. Sometimes I wonder how anyone could read my blog because it is really depressing.

I am truly grateful to have the first year over with! While the pain is still so raw I know that most of the first happenings without Evan are over. Everyone has told us the first year would be the hardest. I think that it will always be hard no matter where we are in life. This summer has really been difficult. Now that the weather is warm, we have been taking Noah to do lots of fun things. I can't help be to think that Evan is missing out. Or, I should say that we are missing out on taking Evan to do fun things and miss seeing the smile on his face! Then I remind myself that Evan is experiencing true happiness that only happens in Heaven. He is completely free of pain and heartache.

This brings me to a discussion that Nate and I just recently had. All along, we have both said that it should have been one of us that died and not Evan. Evan should have gotten the chance to live a full life. But here is what I said to Nate. If God would have come down and asked us who gets to go to Heaven first, you or your precious son, what would we have said? I then ask myself, how could I have taken the opportunity to experience heaven and leave Evan behind in a world of sadness and pain? Would I have had the right to take Heaven away from my child? This thought has really changed my way of thinking. I certainly would have been very selfish to go before my child, even though that is not the way it should happen. Don't get me wrong. The pain of losing Evan will never go away, but at least it makes me feel better. My child was certainly chosen for a reason.

Okay, onto more important things. Two years ago this month we bought Evan his dirt bike. It all started when my dad's buddy brought his little boy's bike over. Evan was so thrilled! I only agreed to let him get close to it because I thought the loud noise would scare him. I was terribly mistaken. He begged to get on and Nate and I agreed. What was I thinking??? He hopped on this little dirt bike and took off! I could not believe that my almost 5-year old was riding a dirt bike! When I saw the look of confidence and amazement in Evan's eyes, I knew that he needed one of his own. In June of 2007, we bought Evan his very own dirt bike. Nate spent weeks searching for the perfect bike. We made a trip to Nashville, IL and brought back the bike. I will never forget that day. It was so special and Evan was so excited!! His bike was truly his passion, along with Spiderman of course. He was so proud of it. While I still sometimes wonder how on earth I ever agreed to get him one, I can truly say it was one of the best things we ever did with Evan.

As mother's, we tend to want to wrap our children in bubble wrap and keep them tucked away from the world. Evan always managed to talk me into almost anything. He used to say to me, "I can do it mom, just let me try!" While we want to protect our children, I think we also need to let them spread their wings and fly. Little did I know that Evan would one day become an angel and fly away. He only had 6 short years on this earth. I am so grateful that we let him live to the fullest and experience the things he wanted to. Evan was also such a grateful child and doing things with him was so wonderful!

Here are some pictures of Evan's pride and joy. They didn't have a riding suit in the store to fit him so I had to order it online. I totally regret not having any pictures of him in his cute little suit.:(

God's Promise

Part III

The following days after Evan passed were incredibly difficult. We were living a nightmare. We found ourselves doing what most parents cannot even comprehend, nor should they have to. We had to make funeral arrangements for our little boy. Our hopes and dreams for Evan were about to be buried in a cemetery. We spent those days picking out a casket, flowers, music, and planning the service. At the funeral home, they told us that we had to go and get clothes for Evan. I asked what for? They replied, "to bury him in". I HAD TO PICK OUT CLOTHES FOR MY LITTLE BOY TO BE BURIED IN!!! At the time, I was not capable of understanding that. I remember driving through town and everyone was so happy and cheerful. Summer was almost here and the weather was beautiful. Everyone was going on about their lives and our world had just come to a screeching halt. We were so incredibly blessed with people who helped. Everyone just seemed to come together and do everything for us. We were completely surrounded by an immense amount of people bringing food, gifts, flowers, and whatever else they could think of. Complete strangers were sending things for us. We called them fairies.

The following Monday was suppose to be Evan's last day of school. He was suppose to graduate Kindergarten. We chose to go in Evan's honor and receive his little kindergarten diploma. This would be the only certificate he ever received. I really wanted him to have it. His school was so incredibly supportive. After the ceremony, everyone went down to the playground and released balloons for Evan. What was suppose to be such a happy event was riddled with sadness for the loss of our little kindergartner.

The next day was the wake. Attending a wake is hard enough, but attending your own child's is grueling. Having to stand next to your child in a casket for hours is just about as bad as finding him in his bed. Nate and I got to be the first to see Evan. We stood outside the funeral home and prayed for God to give us strength to see Evan. We were completely terrified to say the least. When we walked in and looked at his little body laying there, we almost felt guilty for not losing it. They did a wonderful job with Evan, but is was so obvious that it wasn't him any longer. God had taken his soul home. We also wanted Noah to get to say goodbye. We held him up and let Noah say what he wanted to. He told Evan goodbye and that he loved him in the sweetest little voice. No child should ever have to do this! Noah's big bother would not be able to play superhero's ever again in this lifetime. The wake lasted about 7 hours. All I wanted to do was be close to Evan. I kept touching him because I knew that I would never again get to feel him. The amount of people that came to support us and say goodbye to Evan was so humbling.

The next day was Evan's funeral. Nathan and I stood in my parents bathroom talking about how we could not believe we had to get ready for our son's funeral. Does it get any worse than this? The funeral itself was beautiful, if you can call it that. Everyone did such a wonderful job with the pictures, music, and everything else. This is where I need to mention the most incredible aspect of those days surrounding Evan's death. That would be God. I truly believe that God literally walked right by our side during the darkest days of our life, and continues to do so today. When we walked in the church, it was completely sunny outside. During the service the pastor read a letter from Evan's teacher. She mentioned that when she hears thunder, she will think of Evan knocking his blocks down. The song "Word of God Speak" played, and in the song, it talks about pouring down rain to wipe the tears away. It began to thunder, followed by pouring rain! I remember sitting there praying for it to clear up so we could go have the graveside service. By the time the church service was over it was sunny and clear, as if it never rained! We got one more chance to see him before they closed the casket. After everyone left the auditorium, we walked up to Evan to say goodbye. Nate and I held each other and Noah. We told Evan how much we loved him and that we would see him again someday. They closed the casket with my precious little boy and his Spiderman costume beside him.

After the church service was over, we headed for the cemetery. Watching six men pick up my child's casket was also another one of those unthinkable, heartbreaking moments. They were taking my child away forever!!I remember being supported by people while walking behind. My child was then being loaded into a hearse and taken away. We went to bury our little boy. At the cemetery, we released six balloons in honor of the six wonderful years we had with Evan. We let them go and shouted, "To infinity and beyond!" Then we left my little boy in the cemetery all by himself. That thought was horrible.

This is another amazing God moment. When we returned to the church we noticed a beautiful rainbow above the church! It was truly remarkable. It was actually an upside down rainbow. We were told they are called halo's and that is suppose to mean an angel is watching over you. It was such a wonderful sign from God! We knew that Evan would be okay, but we really felt like God was telling us that we're going to be okay. Somehow, we were going to have to make it! This was God's promise to us. He was then, and still is our strength through all of this. I look back to that Friday night before he passed, and also at things that happened months before Evan died and saw God's hands in our life.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves received from God. 2 Corinthians 1:3-4