2012 REFLECTION....

Wow! I cannot believe that it is January again. Can you believe how fast time flies? I remember crying last year begging time to slow down. I was told that you know something is wrong when asking to stop time.  I wanted Hayden to stay a baby forever. I had HOPE that it would mean less medical equipment as long as he didn’t grow older. Unfortunately, time flew in 2012. Luckily, we continued to stay very busy making every moment count. I am so proud of the attitude Brent and I kept through the ups and downs of 2012. We were able to press through the tough days and make memories that will last a lifetime. I am so THANKFUL that we chose this path!

A Reflection of 2012:

January: We were able to celebrate his 7 month birthday with Brent’s family for Christmas. He was so cute in his lime green corduroy Santa/football outfit. He enjoyed all of his new goodies. We were looking forward to seeing miracles in 2012. Unfortunately, on January 15 (Brent’s Birthday), we had a scary experience. I will never forget his lifelessness in the back seat of the car as we rushed to DRMC. I will never forget screaming just breathe. Thankfully, all of the prayers that I shouted out to the Lord paid off. He was placed on oxygen and transported to B. Batson via ambulance. I called a neighbor to go check on my house. The door was wide open, the oven door open, the stove on high, and Brent’s truck door was running. You see this was a “WAKE UP CALL” This was a reminder that you will drop everything to do for your child. We arrived at Blair Batson to receive visitors such as Captain Catfish. Hayden loved visitors while in the hospital. After fighting a rough viral infection, we were home. We were so thankful for all of the welcome home goodies. The meals helped us catch up on rest.

We never left his precious side while in the hospital. We were a team.

 His Nana had a special touched that made him look through her soul.

Batson always has visitors.

February: Hayden was starting to get spring fever. He was ready for the beach. We decided that we would make the most out of February. We stayed inside. We went to birthday parties. We celebrated his 8^th months of life by an outdoor photo shoot with Marley. He even wore his cupcake birthday outfit. We were so thankful to have almost made it through pneumonia and RSV season. WOO! Our God was definitely giving us monthly miracles. We participated in the Batson Radiothon. We were able to go visit all of our awesome Doctors, Nurses, and friends without a hospital say. We loved being at our second home in a “healthy” state. Hayden’s story was inspiring to many people across the state. Our little missionary was working miracles in families across the world. Yes, we were very proud parents. We started to promote Rare disease day around our community. The response was HUGE! “Jeans for Genes”

Everyday was a blessing to our precious family.

 He participated in Jeans for Genes day.

 Everybody loved showing their support.

 He was so thankful for all his prayer warriors.

 We were ready to spread rare disease awareness in our community.

 We always celebrated each month.

 He had such a loving support team.

 He loved Marley.

Pre- Birthday celebration for Month 9.

 We give all of our thanks to each person who helped us believe in HOPE and MIRACLES. We LOVE BATSON!

March: Hayden was so excited that the sun was warming up. We decided it was time for a family beach trip. It rained the whole time. This was a great opportunity for us to enjoy time together as a family of three. At the end of March, Hayden went BACK to the beach with his mommy, Nana, and Mawmaw. He was so excited!! Unfortunately, he had over 50 seizures on the way to the beach. Mommy was beginning to get very discouraged. I was trying to avoid the obvious. Hayden was taking 8 medications a day at this point. I had to mix formula, cereal, bananas, and all the medications together. It was TERRIBLE. He would choke and cough as I fought back tears to medicate him. REALITY was setting in….. A feeding tube was in the near future. Thankfully, my friend Katy Vaughan reminded and encouraged me that a feeding tube would be a blessing in disguise. Yet, she told me to not give up HOPE. Let’s do a swallow test and see if he can pass it first. We might not need to do a feeding tube at this point. HOPE, HOPE, HOPE. All our friends and family around us gave us HOPE

 Unconditional love.....

April: We celebrated Hayden’s 10 month birthday party with a scavenger hunt, egg hunt, the Easter bunny, and lots of food. He had tons of his little prayer warriors and family members come. We were so blessed that God was allowing us the opportunity to have Easter with Hayden! Thank you Lord for such an amazing blessing with our Earth Angel. We then prepared for the hospital. It was a KNOWN thing to pack a bag. Usually, we ALWAYS had to spend a few days at Batson. I believe Hayden just loved all the nurses so much. We did not pass the swallow test. We were going to have to get a feeding tube. Mommy was devastated. Reality just hit me in the face again. Everyone that I talked to encouraged me. We were in the hospital for two weeks. In this two week stay, we had visits with Ted Dibiase, Eli Manning, the Governor, and Jasmine Murray. Hayden was becoming quite a celebrity. He went through the surgery fine. Thankfully, the feeding tube was the best decision EVER. I am a firm believer in the feeding tube. I kept it nice and clean. I was so proud of it. Are you thinking why would you be proud of a feeding tube??? Well you see, it was a blessing in disguise! It helped make Hayden more comfortable. Hayden gained a TON OF WEIGHT while on the tube. We LOVED our Chunky Monkey. In April, we were also slapped with the idea of Hospice. I was reminded to not give up HOPE. We loved our Hospice team. They kept us motivated and encouraged. God really blessed our family.

 Hayden loves the bunny.

thankful for antoher month.... 

 an unconditional love....

 OH NO! Looks like I will be having another hospital stay. BUMMER....

 Team from start to finish!

 Best dressed baby award even in the hospital....

 Hayden meets the Governor....

 Nana feeding Hayden....

 He loved going home for two days to meet the Easter Bunny....

 Great friends are there from Good Times and Bad Times. Luckily, I had a great team of friends that stuck with us through this journey. I firmly believe each person that chose to walk by our side during this difficult journey loved being apart of it. Hayden was a true blessing to our friends.

 Hayden met Emmy. She brought mommy a devotional and Shelton's favorite book.

 Eli Manning visits Batson. (Look at Hayden's Outfit) Looks like mommy figured out the visitor in time to make sure we were dressed in style!

 Hayden loves pretty girls.

 Happy Mother's Day!

May: Hayden had two girlfriends named Chloe and Ann Marie. He was blessed with two beach trips with them in May. He was able to relax and enjoy time with his family and friends. The beach was Hayden’s happy place. We were able to start preparing for his one year birthday. Oh MY! Hayden was surpassing all expectations. I was so excited to be able to plan my little angels first birthday! Hayden was dedicated to the Lord at First Baptist Church on Mother’s Day. I will always remember this special day.

 Baby Dedication at the Church....

 Happy Mother's Day!

 His favorite place.... The BEACH!

or maybe Crab Island... 

 He loved vactioning with his "girlfriends." 4 beach trips together is pretty impressive!

June: Happy Birthday to Hayden. It was truly one of the best days in my life. The Sweetery made Hayden a Dream Cake. A dream cake is an understatement. It was the most amazing cake in the world for our little sunshine. People enjoyed loving on him that day. I saw many children praying for him. While, I saw a few adults crying as they looked at Hayden.  I can never begin to tell you how amazing it felt to know Hayden was still with us after a year. We were then able to celebrate our 3 year wedding anniversary with our angel. Thank you Lord for the blessings! Hayden was able to celebrate Father’s Day with his awesome dad.

Happy 1st Birthday!

Birthday Beach Trip.

 He loved his Aunt Lauren and Uncle Todd.

We wished for another year. 

Our little sunshine was an angel on Earth.  

 Even the girls at Brown's Pharmacy had a birthday for him.

 He ate at Sherman's for his first birthday dinner.

 We were so BLESSED!

 He received gifts for St. Louis Cardinals Pitcher.

 The coolest cake ever!

 A smile!

July: It marked the one year anniversary of Hayden’s first seizure. He was able to celebrate his Uncle Jacob and Nana’s birthday. He was doing GREAT! We celebrated his 13 month birthday at the Lake. He loved going to the pool and riding on the boat. He was doing great! We went to the beach with his Nona, Aunt Meg, and cousin. Brent and I decided to stay for a few extra days in paradise. He looked like an angel on our last time on the sand. He was looking into the sky so peacefully. I guess he was preparing for his journey to end. He was visualizing his future. Pain free, seizure free, and in PARADISE.

Last trip to the beach, he looked so peaceful and healthy.

 He was so thankful for his parents.

TEAMWORK!   

Happy Birthday!  

 Say Cheese!

 He was perfect!

 He loved making arts and crafts.

August: Hayden was doing great! The Sweetery once again made the most perfect Rainbow cake. We wished for a miracle. Hayden was beginning to be very tired on his birthday. He slept through the entire party. He was having fewer seizures and even smiled. God was truly blessing our family. Sunday, he had a birthday party for his Aunt Kelli. This was God’s way of allowing all of our friends the opportunity to see Hayden one last time. He never got to watch Uncle Andrew play football his senior year, but he did get to go to the Meet the Generals. He decided to watch the game from the best seat in the house. We were asked by Vowell Photography for a photosession. This was one week prior to his entrance into Heaven. Jennifer Rutledge was at the hospital a few hours prior to his passing to take photos of us one last time. Photographers have a rewarding job!  We were preparing for another Beach trip with his Aunt Lauren and Uncle Todd. Hayden had different plans for this trip. He chose to go to the Beach for a stay that would never end. By the time we were in Indianola, we were screaming just breathe. My prayer for Hayden never changed during his journey. It was always for God to allow him to have a peaceful life without a suffering death. Me, Oh, My! Thank you Lord for fulfilling this prayer.  Hayden passed away peacefully on August 16. It was the most peaceful last breath. Hayden was at home. Hayden was seizure free. Our little angel was in the arms of Jesus. I will never be able to thank the Doctors and Nurses that walked our journey enough. I placed all of my trust and faith in each of them. They did all they could to help our family through this challenging journey. God Blesses People in the most miraculous ways. Hayden’s celebration of life was remarkable. With over 500 people in the sanctuary, we listened to the most amazing testimony. It was Hayden’s testimony. #TeamHaydenwillneverloosehopeJ

Family time for month 14!

 Happy Birthday Aunt Kelli!

 Love Aunt Leathe!

 Last trip to the lake was perfect!

The Generals Number One Fan! The season was dedicated to him.

 Photosession that was so perfect.

 Thanks to our family and friends who helped us on the Good and Bad Days. Thank You will never be enough!



September- December: These were the most difficult moments of our life. I have cried an ocean of tears. I have faked a many of smiles. I have vented to my mother daily. I have scream out loud and questioned why us? I have had strangers become best friends. I have learned who truly cares. It is amazing at how many people cared about our journey. Hayden’s journey is just beginning. I have HOPE that in my lifetime, I will see a cure for ASLD. I have hope that we will smile more in 2013. I have HOPE that I will not question why. I have HOPE that God will continue to bless families through his story. Miracles happen to those who believe in them. Brent and I definitely believe in miracles. We Love to talk about Hayden so please don’t shut his name out of our conversations. We are PROUD that God chose US to be the parents of an angel. We are proud that God chose us to share the story of a missionary. Hayden and I sang the song Blessings by Laura Story every day. We even sang the song at the funeral. “What if blessings come through raindrops” Hayden has brought rain on his funeral, thanksgiving, Christmas, my birthday and New Year’s. That is an example of God working in mysterious ways.

We look forward to sharing Hayden’s story with many new people in 2013. We are so PROUD OF OUR ANGEL IN HEAVEN.

Counting Down

Only ONE more week! The sun is shining bright. The weather is that of a fall day. I can hardly believe it is only one week from Christmas. I must admit that we have experienced every emotion possible throughout the past two years. The holidays are becoming our greatest challenge. Thank God for a mommy that encourages me, cries with me, and checks on me every morning. I am so thankful for the opportunity to be able to cry and vent to her. Lord knows she is probably worn out by the end of each day.

Last year, we enjoyed buying toys, dressing in smocked outfits, and praising God. I had a “clue” that I would only celebrate one Christmas with Hayden. Unfortunately, I did not believe it. I guess “reality” is just now setting in. Brent and I get to place “smiles” on our faces and keep on going. I have always been a “party planner.” I have always enjoyed “gatherings.” Unfortunately, this year it’s a dreadful count down.

We will be using all of our HOPE, FAITH, and LOVE to make it through the holiday season. The holiday season is so much for our family: Christmas, my birthday, New Years, followed by Brent’s Birthday…..

We will continue to fight the fight and “just breathe.”

Hayden is with us each and every day. He is so close to us that all I can do is giggle. I have seen more sunflowers this year than ever before. I have seen more sunny days in the winter than ever. I have seen car tags that say HOPE. We have found an abundance amount of dimes. We were given the ability to share his story with a few hundred people at the University. We were able to donate gifts in his honor for the second year in a row. We are able to celebrate each month still. Instead of celebrating life on Earth, we are celebrating Heavenly months. We are able to smile at the thought of life without seizures.

As I reflect on Hayden’s life, I can only smile. He was a missionary. The stories that I have been told from people across the world are inspirational. The way Hayden encouraged people was amazing. His coo and smile lit up the world. I can only imagine his chatter box in Heaven. I can only HOPE that he is smiling down on Brent and I as we carry his legacy on. I can only pray that he is proud of our actions. We will live our life to please him.

merry christmas from our family to yours.

Believing in Miracles is one of the main things that I have learned to do in the past 2 years. I have learned to develop expectations that are far larger than realistic. I have learned to BELIEVE and HOPE like that of a Fairy Tell. I am sure many of you have thought, “Wow Lauren, let’s be Realistic.” Luckily, our “unrealistic” goals for Hayden allowed us to learn so much about the value of life. We will never be able to express our love to the friends that have sent cards throughout the past 4 months. The simple text messages of love and support. We LOVE Hayden! We LOVE his legacy. We LOVE talking about him. These are the only parts of life that are going to get us through the next few months. Your love and kind hearts are felt each and every day. We appreciate each person that has continued to recognize Hayden. We appreciate each person that chooses to still talk about him. We have good days. We have bad days. We have strong moments. We have weak moments. I believe all of these moments are normal??? After all losing a child is a little more difficult than putting a dent in your car.

We are going to lean on the memories of last year to make it through this year. We are going to also lean on the friends that have kept us moving for the past few months to keep talking about sweet Hayden and all his sweet moments.

As each of you already know we counted each blessing with Hayden. We counted each day, smile, each seizure free moment, each hand that was lifted in the air. We counted the simple moments in life. We were blessed with an Earth Angel. We were proud of each accomplishment he made. We celebrated monthly. We enjoyed singing Happy Monthly Birthday to Him! Here are some pictures from his Batson Toy Drive for his 6 month Birthday!

What a blessing each person that participated was to children of the hospital. We are looking forward to taking toys to Batson again in a few weeks for Hayden and Ava Grace!

MERRY CHRISTMAS FROM OUR FAMILIY TO YOURS!

Hay-Hay loved monthly gifts!

 and sweets for his friends!

 ... he loved parties celebrating his life

 .... he loved his birthday hat, his elf, and his half 2 tiered cake

... he loved the gift of giving to others, he loved giving to the kids of Batson

 .... he loved his mommy and daddy

 ... he loved sharing the word of HOPE and FAITH

... he loved his mommy

 
 ... he loved supporting the hospital that gave him alot more days with mommy and daddy
.... he loves pretending to be Santa

 .... He loves being rudolph

 ..... he loved visiting the warm, furry santa

 .... he loved being dressed in his reindeer shoes

.... he loved his Santa hat

 .... he loved his sweet friends

 .... he loved sitting under the lights of the Christmas tree with Marley

 ... CELEBRATE the simple life blessings

 .... he loved that Santa came to visit

..... he said "thank you Elfs for all my Gifts"

.... he sometimes was sleepy from all the Christmas parties

 .... Merry Christmas from our Family to Yours. Count your blessings, hug your loved ones, Believe in Miracles, believe in HOPE, understand the REAL meaning behind Christmas. Enjoy each day to the fullest because tomorrow is not promised. Always continue legacies of the ones you love. Always smile as you look at pictures of the PAST and smile because you know it is Ten times better in Heaven. God's not done with you Yet, my precious precious angel in Heaven!

" Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful." Colossians 3:15

Holidays, Holidays, Holidays! What more do I need to say? Time change, time change, time change! What more do I need to say? I need a little more sunshine on these long sad nights. Well Brent and I have struggled tremendously since Halloween. The things that happened on Halloween were unbearable. We were prepared to be sad but not to hurt so much. Anyways, I have learned so much through Hayden’s process. I have said it once and I will say it again; our close group friends have been our backbone. Even strangers have given us more strength than imaginable.

Tonight, I spoke to a girl I knew from Washington School. She was a few classes older than me. We do not know each other that well. She informed me that she has always loved looking at pictures of Hayden. We briefly began to talk about the holidays. She said, “I’m sure it’s hard. I can’t imagine how hard it is, but I’m sure the holidays in Heaven are so much better than anything he could experience here. Can you imagine how big the Thanksgiving table will be where he is and the millions of Christmas lights and decorations he’ll get to see? He’ll get to be with Jesus on his birthday!” I cried happy tears after receiving this message. I cry happy tears again as I type it. I hope it gives each person that is reading my blog that has lost a child or family member this year a sense of HOPE and a sense of UNDERSTANDING that HEAVEN is so much better than EARTH during the HOLIDAYS.

It makes me feel selfish. Why do I want him here so bad? Why do I want him to come back to Earth where he dealt with 50 plus seizures daily and was completely dependent on me? Why would I want him to leave Heaven where he is at peace, pain free, and 4 days shy of 3 months seizure free? I guess it is because I am so eager to see my chunky monkey again. I am so eager for the day I can hear him say “Mommy” for the first time.

Hayden went 11 weeks seizure free last fall. He broke this seizure free moment on Thanksgiving. He seized all day and this only got worse during the Christmas Holidays. I was devastated. I was crushed. My friends tried so hard to buy him toys for Christmas. I bought him so many myself. I pretended that he was using them. I am not sure if this is called NIAVE or HOPEFUL. Last Thanksgiving, I had to mix 3 ounces milk, 2 tablespoons cereal, and a half jar of banana’s to make him eat. I was naive against needing the feeding tube. I was determined to feed him. So ALL in ALL even though we had a great Holiday season last year, Hayden was tired and hurting.

This year, Hayden will eat mashed potatoes and pecan pie. He will celebrate with the biggest cake of all time. He will sing Happy Birthday JESUS. He will walk around and actually have the ability to play with toys. Even though, I selfishly want him here. I truly understand that Hayden is the lucky one. He is the one that gets to sing Happy Birthday, eat cake, and play with an abundance of toys.  We might not have a room full of toys in our home this holiday season but we will shop for Hayden’s friends at Batson.

God Bless Each Family that Has to Experience the Holiday’s with their children this year.

Lastly, thank you to each person who has already sent gifts for the Batson Toy Drive in memory of Hayden and Ava Grace.

“Lord, please…. From the depths of my heart I cry out to you.  I’m trying to find my way. The road is rough. Despair is lurking nearby. Will I stand or fall? Break down or be strong? Will this pain ever cease?” Jill KellyJ

Ava Grace/Hayden Christmas Project for their Earth Angel Friends at Batson

Well it is Christmas Open House Weekend in many of our small Delta towns. Many people are preparing for the Holiday season. For Amy, Bryan, Brent, and myself it will be a struggle. It will be a struggle for Amy and Bryan to continue to keep smiling faces for their angels during the Christmas season. While we will be at an empty and boring house on Christmas. Halloween gave us the feeling of being invisible and broken. So I am really scared that I need to disappear to an island for Christmas. Luckily, instead of disappearing, we are anxious to help children that are battling diseases gain a smile this Holiday season. The palliative care team and child life teams were truly a blessing to Ava Grace and Hayden. They truly gave us love, HOPE, and SUPPORT. We are looking forward to giving back to them. Many people have asked what they can do to help in memory of Ava Grace and Hayden. Here is a list of needs for the Palliative Care floor at Batson. They will share these items with other floors also.

The following letter is a list of needs for the Batson hospital floor of Palliative Care:

·         A slight reminder:  children actually LIVE on this floor in the hospital.

Cups, McDonalds, Backyard Burger, Subway, Chick-fil-A, and Wendy’s gift cards  (20 dollar Maximum)

New Release movies (Baby Einstein up to Teen)
DS games
iTunes cards
Hobby Lobby, Wal-Mart, Target cards
Rattles and teethers
Infant/Toddler toys with lights and music
Karaoke CDs
CD players (small ones) and popular CDs
Xbox 360 and Kinect Games

Prepaid Visa cards (20 dollar maximum)
Word search and crossword books
Art canvases of all sizes
Bedside arts and craft projects (Color Wonder, scratch art, sand art, etc)

Cribside Mobiles (Fisher Price aquarium types)

Journals
Crayola Markers
Social Games (Catch Phrase, etc)
Look and Find/I Spy books
Party Blowers, whistles, kazoos etc
Small photo albums
Disposable cameras
Photo paper
Scrapbook materials
Hand and footprint kits (can be found in craft sections at Hobby Lobby/Wal-Mart)

We will be taking these gifts to Batson sometime in the first few weeks of December. If you are interested in donating gift cards or anything else to Batson in memory of Hayden and Ava Grace, thank you! GIFT CARDS ARE A HUGE HELP AND NEED TO THE HOSPITAL. MAXIMUM OF 20 DOLLARS PER GIFT CARD.  MANY FAMILIES SPEND DAYS, WEEKS, AND MONTHS IN THE HOSPITAL. THESE ITEMS HELP FAMILIES financially. SECOND, I ASKED ABOUT CANVAS’, THE CHILDREN THAT LIVE THERE LOVE PRETTY DECORATED CANVAS’ SO IF YOU LIKE TO PAINT GO FOR ITJ ALSO BLANK CANVAS’ ARE NEEDED AS THEY LIKE TO PAINT THEMSELVES. GIFTS/TOYS/GIFT CARDS cannot be wrapped!

Lastly, teachers: PICU and NICU cannot receive items. We were thinking of allowing children to do Christmas cards/ pictures to pass out to these families. Merry Christmas is allowed on these cards. So if you and your class are interested in making Christmas cards, GO FOR IT J

You can mail to either of us if interested in participating. I know you will place a smile on each of these children’s faces. Thank you for your faithful prayers and loving hearts.