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Monday, January 28, 2013

Blessings In Disguise



In December, God blessed us with an incredible opportunity to share Hayden’s story in front of Doctor’s, Medical students, and health care providers. Four times a year, the University Medical Center does a Schwartz round. Due to Hayden’s story and another three sweet miracle children, the story in December was based on HOPE. We had the best time sharing Hayden’s story. I held back tears as I heard one of Hayden’s Doctors say, “There have been many times when I have seen a recovery much beyond expectations,” Boyte said. “That was the case with these children. Even with the child who eventually passed away, he lived longer than expected.” I remember looking at Brent as he said this to find tears in his eyes. You see Brent and I put all our faith and hope in the Doctors at Batson to help us give Hayden the best quality of life possible.  They would often make comments like this but it was OKAY because we had HOPE for HAYDEN. I questioned Brent this weekend about this comment. He said Lauren; I knew last September that it was bad, real bad, a lot worse than we told the public. I guess this is called na├»ve. He said just by the looks on the Doctor’s faces, I knew it was something they had never seen before. We discussed with our amazing doctors from the beginning that we wanted to focus on quality of life instead of the length of life. This is one of the hardest decisions that we have ever made. I often question this decision. We slightly altered this decision in Hayden’s last few minutes of life as we chose a CPAP which is an external ventilator. We were against the ventilator until it was our last HOPE. Luckily, Hayden was ready to go to Heaven. We never had to make any decisions because he passed away peacefully while on an external ventilator. This usually does not happen unless the patient is truly ready to see the Golden Gates of Heaven. We prayed for no regrets and no pain. God blessed us with these two things during his last moments. In the Schwartz round, I listened to the first two stories. Both of which were living miracles. I thank GOD that these children are miracle children. I must admit though it made me nervous to share Hayden’s story. I knew that it was going to shock the audience. The reason was the word HOPE was not going to be because our child was still living but because our child is at peace in Heaven. I briefly discussed Hayden’s disease. The rareness of his disease was three cases in the USA and less than 50 Worldwide. I would have never been able to share his story without Hayden on our side. I am so proud of Hayden for giving us the strength and courage to succeed in this opportunity. Facing reality is often hard to deal with. This weekend was filled with many emotions. I spent some time cleaning Hayden’s room. He has the sweetest little room. He has hundreds of beautiful smocked and appliqued outfits in every drawer in his room. I just cannot make myself put them away. I did gather items together that I would love to place in a scrap book. I also placed his most special items in a new chest. I will not lie. I was shedding many tears while doing this. I also found myself smiling at Brent. I am so thankful to look into his chest. Hayden has a few items that any high school boy would dream of having. You see he was a mighty special little boy. He touched so many lives. More importantly, he changed his mommy and daddy’s life.
Last night, Brent and I watched the Huckabee show. The guest speaker was Jim and Jill Kelly. We have tried holding onto their words of wisdom, advice, and books. They spoke about losing their son Hunter. It was unreal. Everything that they said matched what we say. We are living a different life. We are living a life that only people that have lost a child would understand. As Jill Kelly said, “I learned to let people judge me and talk about me, the truth is we are the ones that are LIVING the LOSS of a CHILD.” People that judge our good or bad days have no clue. They also said that the only way you can get through the loss of a child is through your Faith in Christ. Jim said, “Without your spouse, family, and friends backing you with a Christian relationship your marriage will not last.” The emotions of losing a child are unbearable. We must always put into consideration that our anger, bad days, and tears are understandable. I thank God each day for placing these people into the lives of parents like us. Reality is tough. Reality is heartbreaking. We WILL live a life like Jim and Jill Kelly. We WILL continue to pray about Hayden. We WILL continue to ask God to help us with the Good and Bad Days. We WILL lean on God to get us through this emotional rollercoaster. We WILL always continue to talk about Hayden. We WILL continue to have HOPE for other families. We WILL continue to be around positive people only. We WILL do all of these things for our sweet Hayden. One of the best things that Brent and I did after Hayden passed away was stick to the positive. Many people do not want to hear us vent or cry. We would have never made it through our journey without our friends that kept us busy. I am so THANKFUL that they still want to do things in his honor.   We will survive this rollercoaster because of our LOVE for Christ and a Positive Support Team.

Hayden has opened an abundance amount of doors for our family. We have been given the ability to help other families. We have been given the ability to share his story. We have given the word HOPE a new meaning. We are going to hold onto HOPE for the rest of our lives. I have full FAITH that God is going to bless Brent and me beyond unexplainable measures. He is going to give us a life worth living because of our love for him. I use to question, “Why would God do this to us?”  I am so ashamed that I would have ever said this. What made me think that we were better than anyone else? The truth is God changed our lives by blessing us with an angel. We will continue to be thankful for this blessing. As I reflect back on the past 5 months, I realize that we have been very lonely and bored. We have free time. I HATE free time. I loved being a busy mommy to an amazing baby boy. Selfishly, I often wish that I would have had other children first so I would have something to hold onto and be thankful for. Instead, I have to worry about if I will ever be a mom to an Earth Child again.  This has probably been my biggest emotion. We must leave these questions in God’s hands. I do believe whether Brent and I become Earth Parents again or not, God will bless us with huge things in our future. Infact, he blessed us with Miracles in our PAST.  We are moving forward. We BOTH see Hayden signs daily: Sun, rain, rainbows, color yellow, flowers, beach, 11:11, and dimes. We believe in miracles. We are living each day like it is our last. We are at peace because we will see Hayden again. We will spend eternity with him. I am so thankful God placed Brent in my life. Without Brent, I would have never had Hayden. Without Hayden, Brent and I would have not changed for the better. We would not understand the true meaning of being thankful. We are so thankful for each person that has given us a hug, a card, a text, and a smile during the last five months. Thank you for not forgetting us in your prayers. I hope you truly realize how appreciative we are for each of you. We would not have made it without the love and encouragement.
We were/are a TEAM!
 He worked so hard to SMILE.
 He was so at PEACE while at the Beach.
 He was a fighter that did not deserve such pain. I wish I could have taken it for him. Luckily, he is pain free without seizures in Heaven!

Wednesday, January 2, 2013

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 8th 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.