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Friday, May 3, 2013


I am so blessed that my blog has come in contact with so many people. Since January, we have 98,742 views from countries across the world. Yesterday, I was contacted by UMMC on an upcoming article about blogs. I must admit it warms my heart that my blog has touched 100’s of thousands across the world. What I do know is that my blog is not being seen because people know me. I am nothing more than a small town girl that has lived a wild and crazy life. I am asking again to become in contact with others suffering from ASLD. I understand that there is no cure. I understand it is one of the rarest diseases in the world. As I look at my statistics, I notice just this month alone 27 different people have viewed my blog from Germany. This makes me feel as if another family is seeking answers. I might not have the answers but would love to communicate. I would love to share how we made each day count in Hayden’s life instead of focusing on the statistics. Also, we have received multiple views from China, Canada, Turkey, France, Ukraine, Belarus, United Kingdom, and Malaysia. If you are from another country and reading this blog, I would love to know what brought you to our website. I would love to offer you encouragement as Jolene from Canada did for us. I have come in contact with a sweet family from Australia. We live across the world, yet we still communicate on Facebook. I remember starting my blog because nothing would pull up on ASLD. I remember thinking is there really on 50 cases worldwide since 1980? There might be more cases in the world that we just do not know about.  My email address is lauren122885@hotmail.com and I HOPE to hear from you.

All in all life is going really good. We have been swamped with different activities in the past month. We are looking forward to going to Hayden’s happy place this summer. We have many milestones to face in the next few weeks. I know Mother’s Day and Hayden’s birthday will be very difficult. I do know that our close family and amazing friends will help us celebrate the happy moments. We will not mourn June 1st. Instead, we will celebrate. Hayden will be eating birthday cake with Jesus. We will do all the things that Hayden loved on his birthday weekend. We will do this with huge smiles on our faces.  We will not mourn Mother’s Day. Instead, we will be thankful that we had the opportunity to dedicate him into our church last Mother’s Day. We will continue to give thanks to God for trusting us with an Angel. We will always feel the presence of angels on both good and bad days.

I would like to fast forward to my devotion for JUNE 1st:
I am involved in each moment of your life. I have carefully mapped out every inch of your journey through this day, even though much of it may feel haphazard. Because the world is in a fallen condition, things always seem to be unraveling around the edges. Expect to find trouble in this day. At the same time, trust that MY WAY IS PERFECT EVEN IN THE MIDST OF such messy imperfection.
Stay conscious of ME as you go through this day, remembering that I never leave your side. Let the Holy Spirit guide you step by step, protecting you from unnecessary trials and equipping you to get through whatever must be endured. As you trudge through the sludge of this fallen world, keep your mind in heavenly places with Me. Thus the Light of My Presence shines on you, giving you Peace and Joy that circumstances cannot touch.

As for God, his way is perfect; the word of the LORD is flawless. He is a shield for all who take refuge in him. PSALM 18:30
“For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear, I will help you.” ISAIAH 41:13

I firmly believe that this devotion is written directly for Brent and I. It is “ADMITTING” that life is not always perfect. It is also reminding us that the decisions in which the LORD makes are flawless and perfect. We must trust God’s decision in picking us to be the parents to an angel. We must understand that with patience good things will come our way.
I have HOPE that each Mother will do “arts and crafts” with their children this Mother’s Day. It will be something that will forever touch your heart!
Below is the most fitting photograph from Christian Beach in Australia. My sweet friend Abby has been on a waiting list since Hayden passed away. Carlie Marie is a photographer who is inspired to help parents heal as she lost a son too. She just recently did her 17,000th photograph of babies that have passed away. I cannot think of a more fitting picture.


Monday, March 25, 2013

Delta Angels run for Batson's Palliative Care

Believing in Miracles......
Brent and I are overwhelmed with joy and excitement as we reflect on this past weekend. Hayden was one of many DELTA ANGELS that was represented in the Color Me Rad 5k. My husband and I have a huge part of our heart in Jackson, MS. I firmly believe that every Children’s Hospital is truly amazing. I believe Hayden lived a longer and amazing quality of life because of the people at Batson. Many people never expected him to live a year. We on the other hand kept HOPE for longer. We received a long and wonderful 14.5 months because of the people at Batson. I am so thankful for the HOPE that 2c nurses and Palliative Care gave us.

My sweet friend Jordan James contacted me in October about the race. We had HOPE that a few people would join us in supporting the Palliative Care team. The team exploded with many angels in heaven and on Earth having huge support groups. We were in tears of excitement as the team grew into 3 different time brackets. We were amazed at the support the Delta was giving. The race gave us the opportunity to have fun with family and friends.  Our team eventually sold out and became one of the largest Color Me Rad teams ever!

Palliative Care is the reason for our love, strength, and encouragement. This group of individuals gave us the opportunity to stay positive. We love the fact that the Delta Angels T-shirts along with the WS Drill Team and a Church donation allowed us to receive over 5,300 dollars to donate to this great group of individuals. The palliative care team is vital to families like ours. We firmly believe in loving, encouraging, and supporting them as they grow to be a huge team for Mississippi. If you are reading this and have not voted for them to win a 10,000 dollar grant, I would love you to do so by following the directions on the picture below. They deserve this more than anybody I know.
www.vote.livestrong.org  click on Mississippi region then Advanced Certification for Batson Palliative Care.



From the bottom of our hearts, we cannot thank each of you enough for your love and participation in this past weekend. I truly felt as if it was the first time since Hayden’s death that we had fun and laughed all happy smiles without tears while doing something in his memory. We had the best time with our prayer warriors, family, and friends. We cannot wait to continue this tradition of getting COLOR BOMBED FOR MANY YEARS AHEAD. The Delta Angels will be BACK in 2014 with only one small change. Our team captain will be getting married so our password will be changing to TROTTER. I am so thankful for the dedication of a friend that worked many hours to make this possible. Thank you so much Jordan, Charla and your family and friends from Belzoni. You are truly amazing people. I hope you enjoy the pictures below!


Even the guys had a blast.......
Thankful for supportive friends on good and bad days....
I love these like my own...
 the best daddy in the world.....(besides mine)
 so thankful to have so many people in our community that loved our son and the other Delta Angels...
 I love my family.....

                                                               family friends win most team spirit...
 my 27 break crew.....
 Delta Angels everywhere.....
 All these amazing people that believe in fighting for Mississippi's kids.....
 Love them.....
 an angel friend on Earth....
 Even Hayden's speech therapist ran with us.....
my sweet Arkansas friends......
 I give all my thanks to Jordan.....
 best friend rocking her blue for her favorite little man.....
 crazy is an understatement.....
 just good family fun....
 amazing time with an amazing family.... we miss our Hayden so much.....
 sweet RAD friend.....
 friends everywhere.....
 5k ready......
 here we go.....
 simply amazing...
 wow...
 so messy and so fun.....
 we MADE it!!!!!!!!!

More of Hayden's amazing nurses......

 BaTH tIME???
 So glad you made it!
 until next year....
 Delta Angels will prepare for 2014
 halo's, wings, and color bombs

Can not wait to GROW a BIGGER team in 2014!
See You There!!!!!!

Tuesday, March 12, 2013

Radiothon 2013

Wow! Spring is approaching. I cannot believe that our sweet Hayden would have been two years old in just a few short months. We are often asking the questions of “I wonder”…… Luckily, we are able to look at the sunshine and remember our angel in Heaven.
A few short weeks ago, Brent and I had the opportunity to speak on multiple radio stations to talk about our love for Blair Batson. This is not a surprise to any of you. I have spoken about Hayden’s story often since Hayden passed away. The truth is talking about him is my healing method. Brent on the other hand has never publicly talked about Hayden. He was extremely nervous. Brent did extremely well speaking about our Palliative Care team and Second Floor nurses/doctors. He spoke from his heart and the phones began to ring. I was so thankful to see my husband speak about the hospital we love most.
I was very nervous about going to Batson that Friday. I cried many tears on our two hour drive. I was scared. I love the hospital so much. I love the people. Unfortunately, I was going without Hayden. We started the day by going to eat lunch with the Griffin family. They have a cute daughter and son that brighten our day. Carter is so proud of his wheelchair. When I look at his blonde curls and chubby cheeks, I am reminded of Hayden. It was such a blessing hearing about all of his milestones. He is a precious reminder that miracles do happen.
We headed towards the hospital. Our interviews were late afternoon but we had plans to spend the entire day with our friends at Batson. I started crying like a baby. Brent started smiling. He reminded me that they were the reason Hayden had 14.5 months with us instead of a few months. We should be happy. They were the reason for all of our amazing memories with our son. Well, it did not help the situation. I was still a nervous wreck. I knew that we would be meeting a very special family. Kambree is a beautiful girl that reminds us to never lose HOPE for children like herself and Hayden.

We met one of our sweet nurses and her daughter outside. Grace is a gift from God. She was smiling. I was so thankful to have the opportunity to meet this beautiful Earth Angel that I have heard so much about. Karen and I spoke together at the SCHWARTZ ROUNDS in December about HOPE.
We were welcomed by Kambree and Gina at the front door. It was an amazing opportunity to meet another miracle. Tears began to flow as Kambree had a sunflower headband on her head. She was showing us her support for sweet Hayden. Hayden and Kambree never had the opportunity to meet. Yet, Kambree has Hayden signs often. The color yellow is simply amazing. She sees yellow flowers before all of her Doctor appointments. The hardest part of losing Hayden is the fact of him being a past memory. Kambree reminded me that Hayden is remembered every day. Hope for Hayden is a team of prayer warriors that will now guard Kambree through all of her doctor’s appointments. I firmly believe that Hayden is looking after this precious family. Our color run team T-shirts has the exact same Bible verse. This is an example that Kambree and Hayden are similar. She was given yellow flowers on Homecoming Court. She wore a yellow shirt in the Batson Calendar. They gave her the HOPE FOR HAYDEN blue color paint when doing the color run commercial. We all cried as we met for the first time. Gina and I then had the privilege of sharing Hayden and Kambree’s connection with a few of the radio stations. It was an amazing day. I look forward to my sweet friends meeting “Kambree’s Krew” at the color run! I firmly believe that Hayden is Kambree’s Guardian Angel.
Brent and I were able to see all of the people that we consider family. We saw some of the kids that were patients when Hayden was in the hospital. One of the sweet girls even remembered me. It warmed my heart for her to say, “Hey, it’s been awhile.” This reminded me of our love for this hospital. All in all the Radiothon raised over 400,000 dollars. We were proud to help Mississippi’s ONLY children’s hospital exceed last year’s goal. It truly changed my life to listen to all of these stories.
 Enjoyed Lunch Sweet Friends!
 Supporting our Miracle Giving Hospital
Radiothon 2013
                          
Hope for Hayden and Kambree's Krew Love Batson

Sweet Kambree that reminds us to never give up HOPE. Our story has allowed them to believe in Miracles!

 We love Scott Steele!

 Your simple donations have allowed Batson to redo the lobby!
 Proud Daddy supporting his son's hospital
 Showered with gifts from sweet Kambree, Gina and Amanda

Tuesday, February 19, 2013

HOPE is such an awesome word!



Well there is so much EXCITEMENT approaching in the next few weeks in Hayden’s memory! I am overwhelmed with joy that his precious soul had the ability to touch lives in so many different ways. I am so thankful that God chose Brent and me to be the parents to an angel! My main goal for Hayden when he passed away was for his legacy to continue. I prayed that the word HOPE would change people’s lives in more than one way. Brent and I did and always will have HOPE for Hayden.
I remember being told at his funeral do you realize how many people follow your precious child’s story. (70,000 which has now grown to 93,000) Do you realize how many people this is? It is like filling the New Orleans Saints Super Dome up. Instead of watching a football game, they are there to learn more about HOPE and LOVE because of your child Hayden. WOW! How awesome is this thought?
Hayden had the cutest curls, the sweetest coo, and the most precious smile. The most important thing about Hayden was his ability to love his mommy and daddy. He was a precious soul. He was an Earth Angel. He taught his mommy and daddy the true value of life. He taught us the ability to appreciate the simple things in life. He gave us the ability to help others and reach out to others. He was truly the most valuable blessing that Brent and I will ever receive. I would never wish the heartache of losing a child on any of my friends. I would though wish these awesome blessings, memories, and life lessons on each of my friends. They were one of a kind!
I know I do not update my blog as often anymore. I do promise that I will always continue to blog though from time to time. The reason is that we will continue to do things in memory of Hayden and all the other Earth Angels. We hope each thing that we do will continue to touch your family’s life.
In December, we were reminded that not only did Hayden touch the lives of people in Greenville but also his Doctors and Nurses. We were given the opportunity to speak on HOPE. WOW, where do you think they came up with the topic HOPE? This was just another pleasant reminder of how he changed the hospital to appreciate the word HOPE. We got the ability to share his story of HOPE with 100’s of Doctors and Nurses. I HOPE this made them have a different aspect on parents of terminally ill children. It was a true honor! I do remember one man saying to Brent, “We should do a topic on HOPE from the man’s aspect. The men are often slightly forgotten.” Well I LOVE this idea. So much that next Wednesday- Friday, I would like to ask each of you to tune into the radiothon. It is Blair E. Batson most fun and best fundraiser. I HOPE you will be touched by the stories. I can NOT wait to hear the story of SWEET KAMBREE one of Hayden’s fellow Batson friends. Hayden is her guardian angelJ Sending signs of yellow. Sweet Ava Grace’s mommy will also speak about their experience at the awesome NICCU. Tons of other parents will be speak stories of LOVE, HOPE, MIRACLES, and FAITH. I am going to ASK each of our friends to tune in at 3p.m. on Friday (I will let you know the station later) to hear a daddy’s aspect of HOPE and LOVE for BATSON. Yes, I am in Tears and all smiles as I think of my amazing husband and Hayden’s awesome daddy speaking with me on behalf of Blair Batson. Our heart is with Batson. Our trust was with Batson. They gave us longer than expected with Hayden. We give all of our love and thanks to the people of this hospital. I can only image how amazing it is going to be to hear Brent speak about his love for his son and his love for the staff of Blair Batson. We will also get to see a few very special children and friends while at Batson. I am THRILLED to say that God blessed me with a strong enough man to help share his story too. This is a blessing! I have much more excitement to share as the radiothon week unfolds! Stay TUNED……


So at this point can you tell how much we love our second home? Hayden went to be with Jesus behind the doors of this hospital. It is a very emotional experience to walk through those doors. I am actually going to SMILE as we walk into the hospital because it is the building in which Hayden had the privilege to rest in as he prepared to go to see Jesus.
                                                    
We are doing the COLOR ME RAD 5K in memory of all of the Delta Angels that have spent time at Batson. My sweet friend Jordan James simply started this group with HOPE of 25 people running for a great cause! Guess what??? We almost have 200 people signed up for our team running for a large amount of kids from Greenville, Indianola, Yazoo, Cleveland, Belzoni and Rolling Fork. We NEVER in our WILDEST DREAM IMAGINED for ALL OF THIS TO HAPPEN! We did cute shirts with angel wings for our runners to wear during the race. We are now going to ASK FOR YOUR HELP until March 1st. We are doing a TSHIRT for 15 dollars or a TANK for 17 dollars to raise MORE MONEY from the DELTA ANGELS to give to BATSON. If each person that is running could sell two shirts or as many as you would like imagine the money we could raise???? AMAZING????  Please contact me, Charla Turner, Jordan James, Nichole Smyley, Amy Oakes, Angelia Casavechia, Donna Steinle, or any of our close friends and family to order a shirt. The shirt orders have been going great but we want to sell at least 150 more in the next two weeks. Sizes Ys- Yl and Adult small to adult xxxlarge. Checks made to DELTA ANGELS. If you are interested in running/walking with your family in this race please sign up at www.colormerad.com Team name: Delta Angels Password: James Promo Code: Fondren
You will LOOK SO CUTE in this shirt! Order one Today!



WOW can you believe the excitement going on! I bet Hayden is giggling in Heaven. Lastly, Greenville residents I am going to ask for your prayers as I share Hayden’s story at the March of Dimes Saturday night at 6. It will be very emotional as Bailey will be singing Blessings just like she did at Hayden’s funeral along with Hayden’s song that was made about him. I am not very involved with the March of Dimes but I look forward to becoming involved. I believe anything that can give a child a chance at life is so worth it! The Delta Babies need our support, love, and prayers.
I also have 150 blue jean ribbons for Genes for Jeans day next week to support rare disease day. I would love for people to wear Jeans on Feb. 28 to support Rare Disease Day. I HOPE that we have as much support as we did last year! Please call me if you cannot wear jeans to work but need some ribbons.
ALL in ALL I would say that Hayden is still working in tons of ways. I am so excited for the opportunity God is allowing Brent and me to be a part of because of our angel in Heaven. I HOPE you tune into the March of Dimes, Batson Radiothon, and support us running in the COLOR ME RAD. It is so close to the hospital that the kids will probably be able to see out of the windows. Thank you for your love and faithful prayers as we continue to live our life with grief, happiness, hope, and love.