Thursday, December 24, 2009

Christmas Memories

It's Christmas Eve and our house is filled with the magic of Christmas and the emptiness in our hearts all at the same time. This is actually the first BIG year that Noah is experiencing the magic of Christmas. All day he has been anticipating Santa's arrival. We made some special cookies just for Santa. It is so awesome to see Noah get in the spirit and Nate and I have been trying our hardest to make special memories with him. Throughout the day I kept thinking that I should have both of my boys bouncing off the walls from all the excitement. It just isn't right that Evan is not here with us and the pain just lingers within.

While Noah is loving every bit of Christmas, Evan is never far from his little mind. Last night Noah crawled into the front window and looked out. He said to me, "Mommy do you know what my wish is?" I asked him to elaborate. He looked up into the sky and said, "Mommy, my wish is for Evan to come down from Heaven." He then asked me, "Do you think Santa Clause can bring him for me?" My heart just melted. It is times like these when I feel so bad for Noah not having his big brother by his side. There will forever be a void in our hearts. This is when I remind myself that Evan is spending Christmas in Heaven and there is no better place!

Have a wonderful Christmas and remember to focus on Jesus Christ for he is the true meaning of Christmas. Give your little ones lots of hugs and kisses! Children are the greatest gift and be thankful for each moment you have with them!

Our first Christmas with Evan!





Our last Christmas with Evan...

We love you sweetheart!

Thursday, December 10, 2009

Feeling Beat Down

I am beginning to feel completely and totally beat down. The past 18 months have been such a challenge and it seems like everything goes wrong. I am currently 35 weeks pregnant. Yesterday Nate and I went for an ultrasound to measure the baby. The doctor came in and told us that his little arms and legs were measuring smaller. What does this mean? My doctor said that it means that there is a slight possibility that our baby has Down Syndrome. The tech also saw a "fuzzy" spot on the baby's spine. My doctor then sent us to a perinatologist for another ultrasound and a better view of the baby. They viewed the spine and said that it was normal. HUGE blessing! They then confirmed the first measurements of the arms and legs, but also stated that this was the only marker they saw. There were no other indicators of Downs. The chance are very slim, but nonetheless there is still a chance. We had the choice to have an amnio done, but opted out of it due to the risk of early delivery and having a premature baby.

Of course this sent us into a whirlwind of emotions....again. It is starting to seem that we have this dark cloud hanging over us. I am trying so hard to stay positive and think the best! The genetic counselor we met with stated the there is also a good chance he just may be short. The fact that everyone in my family and Nate's family is very short gives me a great deal of hope.

I AM DESPARATLEY ASKING FOR PRAYERS!!! Please just pray that our baby is a normal, healthy baby and that God gives us the strength to handle whatever comes our way!

Wednesday, December 2, 2009

Happy Holidays? Not Really...


Well, this post is probably going to be somewhat depressing to read due to my own self-pity! I have to admit that as much as I am trying to be positive about the holidays, they are becoming more and more difficult by the day. Nathan and I have been working on preparing for the holidays for quite some time. This past weekend was pure torture as we tried to put up Christmas decorations around the house. Since I am eight months pregnant, I thought I would get away with putting up a little tree and just a few decorations. Noah had bigger plans! He wanted a big Christmas tree and a house full of decor! So Nate and I thought it was only appropriate to indulge his desires. We decided to go all out, or at least on the inside of the house.

Saturday was the day we decided to do this. We discovered that we no longer had a big Christmas tree. We had forgotten that it had to be thrown away two years ago due to bad lights. So off we went to find a tree. Stores were busy, people were pushy, and this very pregnant mommy was trying to waddle around in all of it! We finally found a tree but they were sold out of lights. That was another adventure! After three hours and about 10 temper tantrums and many meltdowns later, we finally came home with a tree and lights! When I say temper tantrums and meltdowns, I must mention that Noah was great through all of this, so you can imagine who was having a hard time. Yes, me! I managed to cry over just about everything!

How are we going to have Christmas without Evan? This is just not fair! Last year we took off to Mexico, so we dodged Christmas and most of the festivities. This year is proving to be much harder. Pulling all of Evan's little Christmas things out of containers was absolute torture. His little ornaments are hanging on the tree and his little stocking is hanging on the mantle. Looking around my house one would think he is still here. It is just so sad. By Sunday, all I could do was sit in Evan's room and cry! I just want the holidays to be over.

The worst part of the weekend was having to decorate his little headstone for Christmas. While I wanted to make it look great, this is something that parent should never have to do. I also called the cemetery to order a grave blanket. The lady on the other end of the phone asked me who it was for. When I told her she replied, "So you need a child size?" This was another huge reality check. I actually had to order my child a grave blanket! This just sent me into a frenzy of tears! I don't get to buy all the fun toys that Evan would have wanted. I don't get to hear his special little Christmas wishes and watch the magic of Christmas unfold through his eyes. Instead I get to sit in my own sorrow and wonder what would have been. This seems to be my life story these days!


I know that I have to pull myself out of this awful state of sadness that I am in, at least for Noah's sake. I am probably doomed with pregnancy hormones vs. grief and loss. I keep telling myself that it has to get better. Is it always going to be this difficult?

By Sunday evening, I just sat a prayed for God to keep us strong...

Wednesday, November 18, 2009

The Struggle To Understand

With losing a child, some people have certain expectations as to how we should act or certain decisions we should or shouldn't make. Evan's death left us devastated and hurt not knowing what each day would bring. Each day brings a different struggle as well as a new challenge. I never know what the next day will be like or how I will feel.

It has been 17 1/2 months since Evan left us. People assume that the more time that goes by or once you hit the year mark, things will get better. That is is merely an assumption. I get so tired of people saying that we should "learn" to do certain things or that we are "going to have to move on." No one has the right to say anything to us unless they have walked in our shoes for a day.

Each day I live with the fact that I walked into Evan's room and found him dead in his bed. For the first eight months, I relived this moment every hour of every day, almost as if I could change it in my mind. I would have panic attacks 10-15 times a day. I later found out this was considered PTSD. I live with the fact that Evan had to be taken away for an autopsy. Nathan and I had to sit in a funeral home and pick out a casket for our precious 6-year old little boy. The word casket should never be used in the same sentence as a child's name. We had to stand next to our child in a casket for 8 hours while everyone paid their respects. We had to walk behind six men carrying our little boy in his little white casket to be taken away forever. I never thought a cemetery would become such a big part of our life. I never thought I would have to pick out a headstone for my little boy.

Our search for answers has led us to make decisions we never even imagined. We had to send Evan's blood and tissue all over the country in hopes of someone helping us. Then after many long months and little answers, I had to open a package containing the last of Evan's blood and store it in a freezer in our basement.

I get to spend the rest of my life without Evan. I also get to watch all the other kids close to his age grow up and do the things that Evan should be doing right along with them. Each morning I wake up and this nightmare has not gone away. Every picture I see of Evan reminds me of what we don't have and how unfair this is. I cry every day! This is my own self-pity. The thoughts that I have on a daily basis are enough to make anyone crazy. I was driving home the other night in the cold rain. I passed the cemetery where Evan is buried and all I could think was there was my precious little boy in the dark, cold, rain, all by himself. I don't like this new life we are living!

Through all of this, Nathan and I have learned what it means to show respect and understanding towards each other. I may not always understand why he does certain things and he may not always understand what I do, but we always respect the other's decisions. People have different ways of dealing with certain situations. Some people seem to have their own opinions as to how we should do certain things.

I am incredibly saddened by how selfish some people can truly be because we don't do what they want us to. Until you have gone through what we have and walked a day in our shoes, I don't think anyone has the right to judge us or our decisions!

Saturday, November 14, 2009

A Reason To Shop At Kohls!

Okay, so if you ever need a reason to shop at Kohls, I will give you a good one. Back in August or maybe even September, one of the girls on "Team Evan" went into the Edwardsville Kohls soliciting a donation for the benefit. They were very receptive to helping! The manager stated that she had to contact the cooperate office to see what their store could do. Kohls ended up donating $500 to SUDC in honor of Evan! That is just awesome!! I expected a small donation of maybe $50 or so, but $500 just made our day! I am so excited! That brings our grand total up to $13, 500 raised and sent to SUDC on behalf of Evan! In addition to their donation, Kohls offered to send a few employees to help at the benefit. We graciously told them that we had enough people to help. Kohls then sent a group of employees to play trivia. So, when your doing your holiday shopping, remember to shop at Kohls. When they say "Kohls Care For Kids", they really mean that!!!

Saturday, October 31, 2009

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...


Tuesday, October 27, 2009

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!

Tuesday, October 13, 2009

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."

Sunday, September 13, 2009

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!



Sunday, September 6, 2009

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".

Saturday, August 22, 2009

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

Saturday, July 25, 2009

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...

Thursday, July 9, 2009

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.

Wednesday, June 24, 2009

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.:(


Sunday, June 7, 2009

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

Friday, May 29, 2009

The Day Evan Earned His Wings

Part II

The next morning, Noah came into our room and woke us up. Being the fact that Evan was up coughing, I wanted to let him sleep. We all went downstairs to eat breakfast. 8:00 came and Evan was still not up. I was sitting on the couch with a very unsettled feeling. I grabbed Noah and we started up the stairs to Evan's room. We walked into his room calling Evan's name. Evan was sleeping on the top of his bunk bed facing the wall. I said to him, "Evan! It's time to get up!" I knew instantly that something was wrong! I pushed on his little back and felt the coldness through his shirt. I then stepped up on the side of the bed in a panic and saw my precious little boy just laying there. I touched his arm and he was so cold and stiff. His color was very yellow with purple spots all over his face. I began screaming hysterically. I kept telling Evan to wake up and that he had a ballgame to get ready for! In my mind, I thought that Nate would be able to wake him and that this wasn't really happening. Nate came running up the stairs and rushed into Evan's room. I remember pacing back and forth screaming what happened? Nate was yelling over and over "oh God not my son!" Our precious little boy was gone and there was nothing anyone could do to save him. Our lives were shattered!

Nate told me to call 911. I remember making the call, but I have no idea what I told them. The next thing we knew, our house was flooded with cops, pastors, family, friends, and worst of all, the coroner. This was and still is every parents worst nightmare. How could our child just have died in his bed where he is suppose to be the safest? How could this have been our Evan? Experiencing true "shock" is such a terrible feeling. The police officers and coroners were questioning us about fevers, medicine, and whatever else they could think of. We were treated with nothing but respect and compassion the entire time.

I kept thinking that someone was truly going to wake me up from this dreadful nightmare. How could this have happened?? The coroner bent down to me asking about medication and what I gave Evan. Cough medicine and motrin were the only two. I remember asking him who he was. He replied, "honey, I am the coroner." Reality set in! This was very much real and happening to my family. My emotional state turned from shock to complete hysteria. I don't remember much after that, but I remember hyperventilating and seeing everyone's shoes because I couldn't get up off the floor. I also remember screaming at the coroner that Evan needed to eat breakfast before they took him. In times of sheer tragedy, I don't think the mind is capable of working right. And also, Evan was suppose to have a T-ball game, not an autopsy. The mere thought is absolutely horrific! I know that it had to be done, but the thought of that was enough to make anyone crazy.

Usually the scene of the "event" is suppose to be preserved. They were incredibly gracious to us and let our family go back up to his room and say goodbye before taking him. I crawled in his bed and looked at his innocent little face. Tearful and shaking horribly, I told him that I loved him very much and I was so sorry I couldn't save him. I kissed his cold little cheek. Nate talked to him also, but I don't' remember much of what he said. Everyone stood in a circle and prayed. My little boy was being taken away, never to come back and sleep in his own room.

The following days were such a whirlwind! It was like walking through a tornado and everyone was spinning around us. I couldn't even comprehend anything anyone said. We were suppose to be heading to Disney World, and there we were, sitting in a funeral home picking out Evan's casket! Tragedy struck our perfect little family. How were we going to plan a funeral for our 6-year old? More importantly, how do we live the rest of our lives without Evan???

Thursday, May 28, 2009

When Our World Changed Forever

Part 1

Many have already asked me if I was planning on writing about Evan's death. Well, knowing what a difficult endeavor this could be, I figured at least I would start before the 1st anniversary.
I think it is certainly important to talk about the Friday evening before he passed away.

I got him off the bus at 4:00 as usual and took him to a friends house to play. Nate picked him up after he got off work. My mother stopped by with her sister who was in town from Oregon. Evan of course begged my mom to go with her to spend the night. In six years, my mother never told Evan "no" about anything. On this evening she said no and that Evan could go spend the night on Sunday or later that week.

We had dinner as usual. Evan ate pork tenderloin and asparagus, his favorite vegetable. Weird,I know. At dinner, we were discussing the fact that Evan had a T-ball game the next morning. He was really happy about that. After dinner, I gave the boys their baths. We then settled down to watch the Cardinals game on TV. Out of nowhere, Evan began crying. This was not wining or moaning, this was full blown crying. Those who knew Evan would tell you that he never cried about anything. He was usually a content child that never got upset at little things. Evan was hysterical about T-ball. Nate and I looked at each other with amazement. Earlier, he was excited about his game in the morning, and all of a sudden he didn't want to play anymore. He was running a low grade fever and had a cough, so I attributed this to him not feeling well. He continued crying, saying how he was not any good at t-ball and that he didn't want to play anymore. He was also rambling other things that really didn't make sense. We went ahead and put Noah to bed. I sat on the couch and Evan layed across my lap. Nate sat by us and we both spent about an hour telling him how proud of him we were and how much we loved him. I specifically remember Nate saying, "Buddy, we don't care if you're any good at t-ball, we just want to see you have fun." We spent so much time telling him we loved him. I sat there and hugged him tight and wiped away his little tears. I looked down at him and said, "Let's go to bed a pray for Jesus to give you courage to play t-ball." So, we got up and Evan gave Nate a kiss and a hug. We then headed upstairs. Evan even asked if I would carry him up the stairs. This was the first time in a long time that I carried him anywhere! We got to his room and he climbed in bed. I tucked him in and we prayed together. I said to Evan, "Goodnight sweetheart, I love you". He said "I love you too mom." This was the last time I ever heard his little voice. Little did we know that we would never again hold him or talk to him.

We had a pretty severe storm that evening. After putting Evan to bed, we sat in the sun room and watched the sky filled with reds, purples, and blues. I remember telling Nate just how beautiful the sky looked. Shortly after, the power went out. I remember it getting hot in the house and Evan's coughing had gotten worse. I gave him cough medicine around midnight. He sat up, took the medicine, and went right back down. That was the last time I saw his little face while he was alive.

After losing Evan, I look back at this night in amazement. What a gift from God! The evening was just so out of the ordinary. It wasn't normal for Evan to be so emotional. I now realize that we were given the chance to say goodbye to Evan and we didn't even know it. Our last moments were filled with hugs, kisses,and prayers.

Monday, May 25, 2009

Happy 7th Birthday Evan!

On May 24, 2002, God blessed us with the most beautiful little boy I had ever seen! Little did I know that I would only have six short years with Evan. Here are some pictures from his parties last year. Yes, he had two parties, one family and the other was with friends from school. Evan was really into Scooby Doo, so that was the theme. These were that last pictures of him ever taken.



May has probably been the hardest since Evan died. With Mother's Day, his birthday, the day he passed away, and not to mention, many of his little friends turned seven this month, it has been a struggle. I kept thinking of all the parties that I didn't get to take him to. The thought of celebrating Evan's birthday this year was tormenting. How do we celebrate without Evan here with us? The entire week leading up to his birthday was awful. Evan should be turning seven years old. We should have spent all week preparing for his birthday party! That just wasn't meant to be. Instead, we went to the cemetery to release balloons in his honor. We released seven red balloons with spider webs on them in honor of his seventh birthday. We then released lots of other balloons of various colors for people to write messages on. It was so sweet to watch them soar up to Heaven!



Throughout our journey, we have been so incredibly blessed with love and support. Thank you to everyone who helped make this day so special!!

And most of all, thank you God for such an awesome little boy!
Happy Birthday Evan! We love you and miss you very much!!!

Sunday, May 10, 2009

Mother's Day

I have truly been dreading Mother's Day for quite sometime. I think just the anticipation of my first Mother's Day without Evan was enough to cause anxiety. Last week Nathan asked me what I wanted to do on Mother's Day. Just that question alone was enough to start the tears flowing. After the dedication at Evan's school, I decided that I wanted to plant a tree in our yard for Evan. So, that is what we did. We planted a flowering cherry tree in our front yard. On this day I did not want to be honored, but instead honor Evan. So after bringing this extremely heavy tree home, we dug the hole, and planted our tree. We also wanted to make this special for Noah by involving him. So after digging the hole, Noah jumped in! That was his part in planting the tree!!

I also planted flowers. You may now be asking why this is relevant. Well, last year at this time I planted my burm full of petunia's, as I do every year. Evan walked up to me last year and asked if he could help. I graciously accepted his offer. At the time, I was wondering why he choose to help me instead of riding his bike or playing with friends. Anyway, Evan and I spent 2-3 hours planting flowers. He would dig a hole and ask, "is it deep enough yet mom?". He always wanted everything to be just right. He stayed by my side faithfully until all of the flowers were planted.

Evan was suppose to graduate Kindergarten on Monday, June 2nd of last year. He passed away just two days before. Nate and I attended the little ceremony that was held. During the ceremony, the Kindergartners were asked to read what they wanted to do that summer. Evan said that he wanted to plant flowers! This is something that I will hold in my heart forever. We were getting ready to go to Disney World in June and of all the things he wanted to do, was plant flowers. How awesome is that! I still cannot believe such a simple thing made such an impression to a 6-year old. Sometimes in life we take the small things for granted. It doesn't take much to reach the heart of a small child. Planting flowers with me was very special to Evan and I will hold that dear to me forever.

So, today I planted flowers. Yes, it was extremely bittersweet. I did not have Evan by my side this time. Although I have been anxious about this day coming, I actually had a sense of peace. I planted my flowers thinking of Evan every step of they way. I know that no matter what I do or where I go, Evan is always with me.

On this day, I also focused on how incredibly blessed I am to be a mommy! Noah just kept me going all day. He is just so full of energy and giggles that one cannot help but to smile. Thank you God for my precious children!

"Mothers hold their children's hands for a short while, but their hearts forever."

Wednesday, May 6, 2009

In Memory of Evan

On Monday, Evan's school conducted a Memorial Dedication in his honor. It was so sweet and so special. Back in September, the school had a small fundraiser to raise money for a bench, a plaque, and a maple tree. The bench was red and below it the plaque depicted Spiderman and my favorite quote. Everything was set up just across from the playground where he played. I am certain that Evan would be proud, being the fact that he LOVED recess! We also sent bubbles up to Heaven!

The dedication was certainly moving, yet hard all at the same time. Some of Evan's classmates from last year also attended. Seeing how much they have all grown in a year was hard. They have all changed so much. Of course this made me wonder what Evan would be like today. I know that it has not been long since Evan died, but I will never again get to see how he changes. He will always be 6 years old to us.

One little boy was wearing his T-ball shirt from last year, which had #4 on the sleeve. Evan's T-ball number was 4. It was so great to see him wearing his shirt in honor of Evan. After Evan passed away, all the little boys had his number put on their sleeve. While I was thinking of T-ball, I figured I would share this picture. I absolutely love his sweet little smile in this picture. And of course, that is daddy in the background with the video camera!

Getting to see Evan's teacher and principle was also wonderful! Evan loved his teacher very much. I can only pray that Noah will be lucky enough to have her when he gets to Kindergarten. It will also be so special for Noah to play on the playground where there is a Memorial dedicated to his big brother. Notice I said when! I am really trying hard to think positive about our future.

Nathan and I were so moved by this dedication! It is truly amazing how many people came together to honor our son. There are so many people that we cannot even begin to thank. This is yet again, another blessing in the midst of tragedy...


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Wednesday, April 29, 2009

My Little Superhero

Sometimes I get so caught up in my emotions revolving around losing Evan, that I sometimes forget to focus on who he really was. Evan was such a loving, sensitive child who had a passion for life. He graciously welcomed the opportunity for new challenges. Whatever it was, riding his dirt bike or flying around in a superhero costume, the thrill on his face was priceless. Spiderman was certainly his main passion. He used to put on his costume and tell me "Don't worry mom, I will get the bad guys for you!" What I wouldn't give to hear those words again. Sometimes I just sit and hold his Spiderman costume just to be close to him.

Evan was also the best big brother any child could ask for. From the moment we had Noah, he began teaching him the values of being a boy. I used to just sit and watch the both of them fly around in their little capes pretending to save the world. Evan took his role as "big brother" very seriously. He thought that it was his job to teach him everything, including how to shave!

This was just one little moment in which I adored watching them bond into the world of dirt, bugs, and superhero's. Evan absolutely LOVED kindergarten. He was blessed with such a wonderful teacher who will always have a special place in my heart! He had such a great year full of friends and new experiences!

In the past months I have been so consumed with grief, that I forget to focus on Evan and the virtues of his ever-blossoming personality. He was a very easy going child and usually "went with the flow" of life, whatever that would be. We could do almost anything with him and he was very grateful!

As each day passes I miss him more and more. I know the pain will never go away and we will always carry that void in our hearts. We have all been so cheated not to have him here on earth. For now, I am really trying hard to focus on all the wonderful memories that we have of Evan.

"It is better to have loved, than to have never loved at all!"

Monday, April 20, 2009

Life To Treasure...

It has been almost 11 months since Evan became and angel. While I feel like we are beginning to slowly move forward, many of my days are still filled with sorrow and tears. My nights are filled with fear as I lay awake and watch Noah sleep. Nathan and I have certainly had our share of shaking each other, Noah, or even the dogs! How sad is that? Nate and I just need the security of knowing that everyone in our household is alive and well. Typically, you get your children ready for bed at night with baths and stories. You then you tuck them nicely into bed, maybe say a prayer or two, and they are off to dreamland. Then you get that time to relax. For us, this time at night begins the hours of fear, at least for me. Nate is a pretty sound sleeper. I never fall into a deep sleep and usually check on Noah 20 times in a night. I panic if his breathing is slow or if he is laying in an awkward position. Sometimes I just lay there and listen to him breathe. When morning comes, it is a huge relief when Noah wakes up. I get another day with him!

We ALL need to be living every day like it is our last! This was the topic of our church sermon this week. Since Evan died, we truly DO live each and every day to the fullest. There is no doing the dishes first, and then playing with Noah. There is no waiting to do something fun with him. We do it then, within reason. We also don't say "when" Noah grows up, we say "if"....Many would argue that this is pessimistic, but in our world, that is another reality. Maybe someday I will be able to say "when" and have the security in knowing that he will grow up. Nate and I could have never imagined that when we put Evan down to sleep that night we would never again hold him, or get to play ball with him, or hear his little voice say "I love you too". His little life was gone and no time to "re-do" anything. We are just very grateful that we were able to have 6 WONDERFUL years with Evan! That little boy taught me more about life than I could have ever taught him.

We are all so guilty of living each day packed with unnecessary priorities and failing to truly treasure the important values in life. While we have always put our children first, we were caught up in all the "have to do's", project after project, night after night. We quickly learned how life can change in an instant. We try to live each and every day like it is our last and continue to count the many blessings that God gives us!

"Why, you do not even know what will happen tomorrow. What is your life? You are a midst that appears for a little while and then, vanishes." James 4:14

Sunday, April 12, 2009

Easter At Grandma Vicki's

Easter 2008

Easter 2007


As for today, another holiday without Evan and another day filled with tears and pain...


Monday, April 6, 2009

Evan's Story

I have had several people ask me to write something up so they can pass the information along. Here is what I have already posted on many websites. Feel free to copy and paste it or give the link. There is also a picture of Evan to use. The more people who know about this, the better! Thanks...

Evan's Story (Cough Medicine & Sudden Death)

"I just wanted to share our story about our 6-year old son, Evan. On May 31, 2008 our precious little boy passed away. I went into his room to wake him, and he was already with the angels. There was nothing anyone could do. Our lives were shattered!

The evening before he passed, Evan had a low grade fever (99.4) and a "croup-like cough". Nothing to really be concerned about. I gave him cough medicine and Motrin. After all, children get these little bugs all the time.

The autopsy report showed he had a viral infection in his lungs, but they were unsure as to the specific cause of death. Evan has been classified as SUDC (Sudden Unexplained Death in Childhood). My husband and I decided to have further genetic testing done on Evan. There has to be a reason why my 6-year old just died in his bed.

In the first week of January, we got a call from Indiana University, which conducted some of the testing. The doctor stated to us that one of Evan's liver enzymes, "2D6", was found to be inactive or essentially dead, non-functioning. When the enzymes in the liver do not work properly, the liver is not capable of breaking down certain medications. Therefore, the cough medicine containing "dextromethorphan" contributed to his death. This chemical is a cough suppressant. Read the back of the labels and you will find this in most all cough medicines. The doctors told us that 7-10% of all children have these missing or inactive enzymes. In medical terms, this is referred to as Cytochrome P450/2D6.

http://en.wikipedia.org/wiki/CYP2D6

How could something that suppose to help your child take his life??? There is much debate over the use of cough and cold medicine for children. What they don't tell you is the risk of sudden death, Evan now being one of them. My mission now is to save the lives of children everywhere. If someone had informed me of this, I would have NEVER given this medicine to Evan. Now, I get to spend the rest of my life without my precious little boy...


Saturday, April 4, 2009

Tragedy & Pain

As I have stated before, losing a child is something that a parent should never experience. For 10 months we have struggled each day, slowly learning how to live again without Evan. Last Saturday, I sat and cried with a mother who had just lost her 7-year old daughter. Being 10 months into our journey, I myself had few words for her. I personally know that there is NOTHING that would be comforting to a grieving parent. I looked into her eyes only to see the intense fear and pain left from such a devastating loss. This is the same pain that Nate and I have carried since we lost Evan. It breaks my heart to know that someone I know has to go through this awful journey. Nate and I wanted so badly just to tell both of them that everything will be alright, but the reality is that it will never be the same. Just like us, they will have to take baby steps and trust that God will lead the way.

Going through the wake and funeral was like Evan's all over again. She even had the same little white casket with gold angels on the ends. Nate and I did a pretty good job of holding it together as much as we possibly could. It was really God giving us strength! All through our ordeal, we have been enormously blessed with loving and supportive people. Now it is our turn to help someone else. All I can do is pray for God to guide them through the next difficult days, months, and, years without their daughter.

At the end of the funeral they played the song "Praise You In This Storm", by Casting Crowns. Since Evan died, I have kept this song in my heart because it reminds me to continue to be faithful to God, even in our darkest hours. I truly admire the parents for playing that song at their daughter's funeral. While tragedy and pain are my reality, I still count the many blessings in our life each and every day.

Friday, March 27, 2009

Eve's Blog

I just wanted to take time to mention my friend Eve. She graciously let me post Evan's story on her page. She got over a thousand views!! How awesome is that?!?! That is so many more mothers being warned about the danger of cough medicine, not to mention all of the feedback she has recieved.

In my lifetime, God has truly blessed me with great friends, like Eve. She has been such a blessing in my life. There have been times when I needed her and she dropped everything to come and cry with me. She and her husband have a little boy named Sam, and desperately want another child. Currently, they are struggling to get pregnant, so please keep them in your prayers.

Eve,
Thank you so much for all you have done!!! I love you!!
http://infertilityrocks.wordpress.com/

A Big Thanks For The Layout

I just want to say a big thanks to Tycie from Scrappin' Blogs for making this beautiful layout. My blog looks so wonderful! Check out her website and see all of her cute layouts!!!

http://scrappinblogs.blogspot.com/

Thanks Tycie!!!

Monday, March 23, 2009

Noah

Nathan and I have been waiting for the "perfect" time to take Noah to the cemetery. For months we have been trying to figure out what we were going to tell him. We finally decided that we weren't going to try and give him some elaborate explanation, that he may or may not understand. We just took him to Evan's grave and showed him the headstone. We did not tell Noah that Evan was buried there.

He was pretty much aw-struck. He liked the picture of Evan on the stone. He knelt down and touched it. Then he ran around like a little fool. It is truly amazing how children are spared the pain. Noah was really just impressed with the toys he could play with. While Noah did just fine, my heart was breaking inside. We actually had to take our 3-year old to see his brother's grave. How sad is that?

Today, Noah and I returned again. The rain has left residual dirt on the stone, so we went to clean it off. Noah and I then went up to the pond to see the ducks. He loved that. This was another moment in which I realized that this is our life now. Going to the cemetery to see Evan is part of our life now. There are no more birthdays with Evan, or holidays taking pictures of both of my boys in their little matching outfits. On every holiday or special occasion, going to the cemetery to see Evan will also be a priority. That is what we have now. And Noah, what about him? He doesn't have Evan to run around playing superhero's with. He doesn't have Evan to ask questions or tell him what to do. Lately the weather has been nice, so all Noah wants to do is play outside. It is so sad to see him playing by himself, knowing that Evan should be right by his side. It breaks my heart that Noah has to grow up without Evan. Evan should be there right by his side through everything, but the reality is that he is gone, forever.

After returning home, I sat crying in my own self-pity wondering why? This is one of those days when I just want to scream at everything and everyone who comes my way. MY CHILD IS GONE AND IT IS NOT FAIR!! Our lives are shattered and there is nothing anyone can do to fix it. We just have to somehow learn to live with it.

Wednesday, March 18, 2009

Reality

As I very well know, life can drastically change in a single moment. I found this out the hard way 91/2 months ago when I found Evan dead in his bed. The members of First Baptist found this out just recently. Watching the events of that day unfold moment by moment was a harsh reminder of pure evil. What is this world coming to? These things are suppose to happen in big cities trashed with street crime. Right? The shooting of Pastor Winters happened where my child attends preschool. How can that happen? This is when I get really angry at the world. It's just not fair!!!

I just cannot get his wife and girls out of my mind. While my loss is different, the long, hard journey of pain is the same. I hate that someone else has to endure this awful torture of trying to pick up the pieces of life and try to live again. I still have not figured this out and I am not sure I want to.


Speaking of Pastor Winters, Nate and I visited Evan yesterday. To my surprise Pastor Winters was buried just a few feet behind Evan. This brought such a sense of comfort to me and that doesn't come easily these days. Still we found ourselves asking why? Do we really have to go to a cemetery to visit our child? Will I ever wake up?


On a lighter note, one of my dearest friends turned 40 this year. She wanted to go on a cruise, so we all went. Nine girls total!!! It was such a needed break from reality. I spent weeks promising myself I was going to have a good time and not ruin anyone else's trip. The trip was awesome and so were the drinks!! It felt so good to laugh again. It actually gave me a little hope that maybe I truly am capable of being happy again. But, how can one truly be "happy" after losing a child? Someone please tell me! But with the fun of going on a cruise comes the overwhelming amount of guilt. This is something that Nate and I have struggled with since the beginning of this journey. Each time we find ourselves smiling or having a good time, the sense of guilt creeps in. My child died so how can I smile or laugh about anything? This is when I remind myself that we still have Noah! He brings the smiles and laughs that we so desperately need. A huge blessing!

Another thing...Tonight as I sit here writing this, it is raining outside. And of course I am thinking about my precious little boy out in the dark, cold, rain! Just another horrific thought running through my head. It happens alot!

Monday, March 2, 2009


This is definitely one of the posts I have been dreading, but need to do. Just when I think we are doing somewhat better, something happens sending us in a backward spiral. Last Tuesday Evan's headstone was put in the cemetery. I cannot begin to say how incredibly surreal and painful it is to walk through a cemetery and see your child's name on it. It was another huge slap of reality. I know that Evan has been gone for nine months, but somehow seeing it engraved on a headstone made it that much more permanent. I know he is gone and not coming back in this lifetime. The monument itself is very beautiful, but at the same time, I should NOT have to see it. This is something a parent should NEVER experience!

While many people have already gone to visit Evan and see his headstone, we still have not taken Noah out there. Nate and I are trying to prepare him and hope to take him soon. In his innocent little mind, Noah believes that Evan is up in heaven with Jesus. While this is true, taking Noah to the cemetery and telling him that Evan is there also will drastically confuse him.

I thought I should mention one thing that has really gotten to me. When we first found out about the cough medicine being a major factor in Evan's death, I really tried hard not to blame myself. Obviously, this is easier said than done. When I was looking at the monument, all I kept thinking was the medicine that I gave him put him there. While the logical side of me knows that I had no way of knowing about his liver, the emotional side of me cannot control the thoughts running through my mind. Seeing his "permanent" monument just deepened the horror that much more. I just kept telling Evan how sorry I was. I just want to plaster the picture of his monument everywhere and say, this is what cough medicine did to my child!

Monday, February 2, 2009

Memories


The past few days have been especially emotional. I am lucky to make it an hour without crying about something relating to Evan or this awful new life we are living. Yesterday, Nate decided to convert some the last video of Evan onto DVD. Until now it has been way to difficult to watch these home movies. I thought to myself, I want so badly just to hear his little voice again.

We started watching some of the videos from when he was around two. He was just so small and so sweet. I had forgotten how cute his little voice was! We then watched video from last Christmas. I never would have imagined that it would be our last Christmas with him. Little did I know that we only have five months left. We also watched his sixth and last birthday. Evan was six years old! He had become this handsome, happy, grateful child! Then, I only had days left with him until he became an angel. This was one of the last pictures ever taken.



Watching the videos was incredibly gut-wrenching, but worth every last minute. The entire time I kept thinking of how cheated we are not to have him here on earth. We don't get another Christmas or another birthday. Our reality is pictures, videos, and memories. That is all we have left of our precious little boy. If I could write a book, it would be titled "5 Minutes". I would give anything in the world to just have 5 more minutes with Evan. I would just love to hear him, to touch him, and hold him one more time. Please God, just 5 minutes?

Friday, January 23, 2009

Genetic Testing

Well, we made our trip to Indiana and managed to make it back safely. We got the privilege of meeting Dr. Flockhart, who did Evan's genetic testing, or at least some of it. Due to the results, Dr. Flockhart wanted to test all three of us. (Huge Blessing!) We are primarily focused on Noah and to also determine which side these "gene variants" come from. It was so nice to sit down face to face with someone who has some answers as to how my child died. So, we got to spit in a cup for 30 minutes. Yes! I said spit...It is truly amazing how much you can learn from spit!

During the meeting, Dr. Flockhart elaborated on the scope of the testing. As I stated before, one side of Evan's DNA was normal and the other was faulty. They found two variations in the genetic pattern. One has been identified, and the other, they have NEVER seen before. They are now going to send the DNA off to another lab to be further analyzed. He did recommend completing the Long QT test, so I will be taking that to the coroner's office on Monday. Finally, after 8 months I feel like we are making progress. The rest of the meeting, we were just trying to make sense of all the "medical" lingo doctors oftentimes use. That in itself can be quite exhausting!

As for Noah, he was so great on our little trip. After 31/2 hours in the car, he was eager to get out and start charming the hospital staff, as you all can imagine. The spitting part was also fun for him as well as entertaining for us to watch! We then took him to a HUGE indoor water park. He was more that thrilled! He loves to swim...

Thursday, January 15, 2009

Answers

On Tuesday, we recieved a call from the University of Indiana, which tested Evan's blood for genetic abnormalities. Dr. Flockhart explained to us that Evan's liver was lacking the proper enzymes that would normally allow him to "break down" chemicals in the body. Evan was given cough medicine the night he died, therefore contributing to his death. This is genetic. The testing also revealed another genetic mutation that they were not able to identify. DNA has two components. One component was perfect and the other showed severe genetic mutations. Further testing is going to be done to determine what the other mutations are. Only one has been confirmed. Nathan and I are going to Indiana next Friday to be tested to determine what side these mutations come from. My biggest fear now is that Noah may have the same condition.

Right now I am still trying to process all of this information. I feel hugely responsible and guilty for giving him the medicine. I am really still so numb and very much overwhelmed. Everyone can say that giving medicine is what every mother does, but that is easy to say when it is not your child that died.

On another note, there has been much debate over the use of cough and cold medicines for children. What they don't tell you is the statistics of death among children, mine now being one of them.

Saturday, January 3, 2009

My Awesome Family!

This is how incredibly awesome my family is! Instead of having a traditional Christmas party, they decided to meet at Build A Bear Workshop on December 21st. They all made bears in honor of Evan. The bears were then distributed to long-term patients at Cardinal Glennon Children's Hospital. How awesome is that??? In all, 29 bears were donated. Because of Evan and my wonderful family, 29 sick children had a smile on their face! This is the best Christmas present I could have gotten this year. Nathan and I were so honored that my family wanted to spend Christmas this way. A BIG thanks from the bottom of my heart...


Another great thing about the day was getting to spend it with Evan's cousin Abbie. The two were in the same kindergarten class together last year, and spent alot of time together. Abbie was certainly a special part of Evan's little life. I love you Abbie!!
"While we try and teach our children all about life, our children teach us what life is all about."