Saturday, July 21, 2012

Hey Friends, I have changed the settings so that you can comment under my blogs without being a google user. I have had many of moms friends mention not being able to respond. I am going to blog tomorrow with new pictures. I promise it will make you smile as he is getting SOOOO big. I just wanted to give a quick and brief update tonight. I have HOPE for Hayden. I have had a week of HOPE. This week was spent in Florida on Monday and Tuesday. As you know this is heaven on Earth. On Wednesday, I had great friends bring us an awesome quilt that was made with all of Hayden's clothes from year one. Thursday was filled with lots of good moments. I made myself, mom, and Mrs. Angie a frame with his photo, handprint, and footprint. I love memories. I took him shopping. He received a happy. Hayden received an outfit from a secret friend. I sure wish I could thank you. It brings tears to my eyes that some people can be so kind. That night my sweet friend and neighbor brought us a yummy dinner. Little to say, our friends have been here to pick us up and keep us going. Friday, we had a birthday lunch for my mom at Scoops. They even gave him a T-shirt. Do you sense the Kindness? I got home to some awesome cards in the mail. Followed by our friends that invited us over for homeade sphagetti. We had the BEST week. We had SOME GREAT moments. We also met our home nurses. I LOVE them. I believe they LOVE Hayden too. Lastly, Dr. Davis, our neurologist called yesterday. He just called to check on us. WOW, he is awesome. He is not ready to just give up on Hayden. He wants Hayden to have more good days. He is going to talk to us about adding steroids next week. It is not a cure but could possibly make him more comfortable. I am all about giving Hayden the best quality of life possible. With steroids, he will gain weight. My back is already hurting from carrying him everywhere. I can get a new back another day. For the moment, I say let him gain and I will keep carrying :) I love my buddy. Today, I received a gift from a high school friend that now lives in Auburn. How perfect. A sign that says Do you know how much you are loved? Hayden is loved by people all over the world. I am proud that his tiny feet have changed so many people. After the experience in CO, I am reminded that tomorrow is not promised for myself. Just because Hayden is hooked up to a stat monitor means nothing. Only God knows his time and yours and mine. So I hope everyone will wake up and hit reality. Love your friends and family. Throw away the silliness and drama. Enjoy the moment. Appreciate every smile. Love every second. I am so thankful for each and every moment with my Hayden. God is good all the time no matter what. Guess what? I have HOPE for HAYDEN. I will continue to SMILE for Hayden. Sorry ASLD, we are still fighting. We ARE NOT GIVING UP! Thank you to the strangers and close friends that are the reason for this attitude. Your prayers are the reason for our ATTITUDE. Our church, First Baptist mentioned Hayden in the children's message last weekend. I know every prayer that was said this week was answered. Luckily, Brent and I are out of the hole. We are back to FIGHTING AND SMILING. Please please pray for good days with less seizures. Pray that ASLD slows down. Please pray that these teeth do not cause him any extra pain. Thank you for your faithfulness.

Wednesday, July 18, 2012

Home and Reality

Well guess what? We are back home. It is definitely bittersweet. I love my family, friends, and my dog Marley. The beach is our happy place. Hayden is like a different child at the beach. His eyes focus. He smiles. His monitor stays steady throughout the night. Yes, this is why we have been to the beach 10 times in his precious 13 months. Trust me, if you have never experienced it you will never understand our happiness. If you have experienced a beach trip with us you understand. I cried today as we left the beach. You see summer is drawing to an end. Brent is really busy with work in winter. I know that our beach trips are fixing to start slowing down until spring. We are planning on one last trip with some Best Friends. As far as I know, that will be our last trip for the Winter. Most of you are probably thinking enough is enough. Once again the joy our family has in Florida is something that I can not describe. I cry just thinking about it. I told mom today that Dad will never be able to sell or replace our condo because the memories are SOOO SOOO precious. I can not wait to share some pictures from the trip tomorrow. I will update my blog with some pictures so you can experience our joy. I left in tears today because I know Haydens prognosis is so poor. I fear everytime might be the last time. This trip was extremely emotional. Hayden and I spent a little extra time in the bath tub last night. I do not want it to be the last time. Unfortunately, tomorrow is not promised for Hayden nor myself. Only God knows when our time will be. I do know that our worries disappeared while at the beach. Unfortunately, as we left they are back. We are home. We are back to reality. Worse part is Hayden has had more seizures today then all week combined. Really???? What in the world causes Hayden to do so much better in Florida. Hayden's seizures are on a rise. So please pray that he feels a little sense of Florida in Mississippi. I need my little buddy to have more good days. He is my little side kick. I LOVE good days. I am EMOTIONALLY tired of sad days. I do not HATE anyone but I HATE seizures. They are consuming our life. I am going to start counting down the days until our next Florida trip. Maybe this will help us get through the exhausting days. On the positive side, I have the best mom and grandmom in the world. They came to my home and cleaned for us today. They even hung photos and redecorated. Yes, they are by far the coolest people in the world. They always put Hayden, Brent, and myself first. Thank God for these two adult Earth Angels. Please pray for some peaceful days in Mississippi that have a little touch of Florida. We had the best vacation with awesome moments. Ahh.... I love my precious family. Go away seizures, stop bullying our precious child. We would love to have some awesome weeks. We are still fighting this ASLD battle. We refuse to GIVE up. We are still holding onto HOPE and claiming our MIRACLE. Each day is going to continue to be a special precious memory.

Tuesday, July 10, 2012

Pray for HOPE

Well it looks like I am running into one problem after another with blogging on my IPAD. If anybody knows how to upload a photo please let me know. It will not let me select a file. Brent and I felt much better yesterday after being completely honest with each of you about Hayden's condition. We would like to thank each of you for your encouraging calls and text messages yesterday and today. So many people believe that I am strong. That I am continuing to hold onto HOPE. I think a lot of people think that we are "alright." I would like for you to pray that Brent and I can regain our sense of HOPE. We can void the conversation in which the Doctors had with us on Friday out of our memory. It is hard to place a smile on your face and continue to move forward when you know the outcome is so so so poor. Yes, we are exhausted physically and mentally. We can not go ten minutes without thinking about it. I am not sure about Brent but I feel like worries are consuming my life. PLEASE PLEASE pray that we can get our encouragement back soon. Please wear your Hope For Hayden bracelet and pray that NOBODY loses HOPE for Hayden. Please pray that God touches Hayden with a great big miracle. As for today, Hayden has had a pretty good day. We have had minimal seizures that we have physically seen. Haydens officially in a 24 hour seizure. Luckily, we are not seeing seizures 24 hours a day. I would say that I have only seen 3 or 4 today. Praise God. Hayden did a good bit of resting today. Thank you Jesus for allowing his precious bones to rest. Yes, we place a smile on face. Yes, we are alright. What are we suppose to do? We can not just give up. That is why I am begging that you pray that we can void Friday's appointment out of our memory before it consumes our life. It is not only consuming mine and Brents life but all of our close family that check on Hayden often. All of our friends that love Hayden like a son. I am so thankful for Megan, Whitney, Lisa, Lauren, Holly, Leathe and Kelli for being the best aunts in the world. I am so thankful for these girls have truly treated Hayden like a son. I know each of you will be awesome mothers one day. I can not wait to treat your kids like my own. As for your significant others, I am so thankful that they are not scared of Hayden. I am so thankful that they LOVE our angel with all of their hearts. I am so thankful that yall have spent a year including Hayden in weekend activities instead of just forgetting about us. A simple thank you will never repay this. These friends need prayers to as they are worried about us and Hayden. For Mrs. Dana, for a year of faithful scriptures and letters. They have often arrived on the best days. For all of my mothers friends that have cooked us fabulous meals, I am going to blame yall for my weight gain. HEHE not really, thank you all. For Mrs. Nita, for knowing what it is like and always saying the perfect things. These are just a few of the people that have really stepped up to the plate to help us get through this rolllercoaster. The rollercoaster is far from over because we are not giving up HOPE. We are going to pray to regain it! For our parents, grandparents, Jacob, Andrew, Robby, and Megan.... Each of them are trying to hold it together for Brent and I. It is not easy because they are watching us hurt along with loving sweet Hayden. Please pray that each of them can feel a sense of Hope instead of helplessness. I have said a dozen times before that it sucks to get a diagnosis with no cure because we can not fight. Cancer comes with a fight. ASLD comes with a timeline. NOT FAIR but you know what life is NOT FAIR.The one thing that I do know is Life is a Gift. Life does go on. I know that Hayden is the cutest kid on Earth. I know that he will always be my child. I often deal with the fact of loving the fact of being a mom. The fact of being a mom to a heaven angel but not on Earth is like taking a hammer to my heart. Luckily, I know that Hayden will be waiting on us one day with open arms. Guess what the best part of this is? He will be holding his head up and running free without SEIZURES. Praise God I HATE seizures. With all this being said, I just want you to know that even if we "look" happy we still need prayer for HOPE and ENCOURAGEMENT. Please contiue to pray that this disease slows down so we can have a rainbow and sunshine birthday next June. Thank you for your faithfulness.

Sunday, July 8, 2012

We Need Your Prayers! Slow down AsLd!

1st off I would like to apologize for the format of this blog. My lap top is dead and I'm typing on an iPad. Not easy! I will be purchasing the key pad today. I hate to share information on my blog unless it's exciting and upbeat. After all we have spend 13 months fitting in a lifetime. We have had family help us make memories. We've had some awesome friends that have never left our side. They've encouraged us, hugged us, cooked for us! Wow our friends are now considered family. I have best friends that I have never met. Christine, Jolene, tracy, and Courtney, y'all have been the first to know every detail of Hayden's progress. Why? Because y'all have been here for us daily. Not only when it's convenient for you. You have checked your emails daily! Thank you for being my new best friends. I would like to start by saying thank you for your faithful prayers. We are more appreciative than you will ever know. Thank you for your encouraging cards. Thank you for your donations to Hayden and his honor. Now onto specific prayer request and discouragement: 2 weeks ago Hayden had an EEG. The results were worse than the EEG in April. We added a medicine. The medicine has been unsuccessful. We went back Friday for another EEG. Dr Davis said he would call next week with the results. Unfortunately, we had a seizure that scared the whole EEG team. The results shocked them. They placed Hayden on oxygen. They called Dr. Davis into talk to us. The results showed significant progression in the past 2 weeks. SLOW DOWN ASLD! Please pray!!! We have known Since last July that Hayden's prognosis is early infancy. Unfortunately, I can not freeze Time. I have recently heard of a 9, 5, and 3 year old with asld. I HOPE Hayden receives this amount of time on Earth. Sadly, tomorrow is not promised. Not only for Hayden but all of us. The doctors can't tell us anything other than his disease is progressing. We need you to pray for this. Hayden is our angel. I'm not ready to give him up. The thought of him holding his head up makes me smile. The thought of him playing with toys brings a tear to my eye. The thought of him running around with all of his angel friends gives me HOpE. The problem is myself, brent, and the people that have shown Hayden love. We have so many more memories to make. So many more smiles to smile. So many more kisses to give. Please pray for peace and understanding. Please pray for our entire family. We are remembering God is good all the time no matter what. We are so thankful that God chose us to be the parents of his EArth angel.

Sunday, July 1, 2012



Wow! We are thirteen months! I am so excited about this birthday weekend! Hayden has enjoyed a weekend at the lake. You know how I am always talking about Florida being like Heaven on Earth? Well if I can’t be in Florida, I’ll settle for my second happiest place on Earth, the lake house! Today, we will celebrate with a sunshine cake. (The topper from his 12 month cake). Each month is a miracle. Each month is blessing. I am extremely proud of the Blessing of the 13 month birthday. Why? Because June was not a very good month at all L we had increased seizure activity. Our seizures have changed. His new seizures are very scary. We had one seizure where he instantly turned blue. Yup this is discouraging. The EEG results showed lots of negative results which I’d rather not discuss.  We have been very discouraged. Sometimes, I just do not know how much one person can handle. UGHHH Luckily, we have such an awesome group of friends and loved ones that are helping us remember to take it one day at a time.

Please continue to pray for our 13 month Earth angel as we are going back to Batson this week. They were very discouraged with his EEG results 2 weeks ago. We added a new medicine. Well guess what? The new medicine is not helping. Hopefully we will see improvement in the EEG Friday. We will also get his feeding tube changed out. (This is a simple procedure every 3 months). We will be exhausted so prayers are appreciated. The positive part of this week is getting to see Amy and Ava Grace. Please continue to keep sweet Ava Grace in your prayers as she is still fighting for her life.

My goal from this past month is to remember that you never know which day will be your last day. I spent many days in tears and saddness. I had to quickly remind myself to smile and get out of the gutter. Make memories! Enjoy the moment!  Hayden and I had a fun month of arts and craftsJ


Hayden makes so many people happy. He did flower pots with his precious toes!
 It is 104 degrees in Mississippi. Hayden ate ice cream. He LOVED it!
 Hayden went with his Nona and Papa to the Mississippi River. He enjoyed the nice breeze in his face:)

 Nona bought him a Life is Good shirt. He loves it. P.S. do you know the story behind "Life is Good"
http://www.lifeisgood.com/about/affiliates/. They are all about helping kids overcome special challenges. HMMM this is a great reason to buy a shirt?
 Hayden made birthday cards for his friends. From the bottom of my heart to the tip of my toes... I love you! Hayden has to use his feet because his hands are always balled into a tight fist.
 Hayden did his one year old handprint pottery. He even made 12 Christmas presents!
 Hayden styled in all of his new cute clothes! He is quickly growing out of his 18 month clothes. Hmm.... Growing BIG boy!
 Hayden says Life is Good when water is involved!


Everything Belongs to God

The earth belongs to the Lord, and everything in it. The world and all its people. Psalm 24:1


You belong to God, and everything that is made or ever will be made belongs to Him. He is sovereign over all He has created to honor Him and be a blessing to those who love you and care for you. He wants you to know that He loves you and will love you forever with an affection that nothing and no one can take away. You are God's special gift.

He saves us from His namesake and for His glory.

Tuesday, June 26, 2012

Life with Our Angel!

Well it has been a busy few weeks. Our angel turned one on June 1. Since then, we have been BUSY, BUSY, BUSY. Living life to its fullest! Hayden will have his 13 month birthday celebration soon! Praise God! We are loving every moment with him! I must admit that I am the proudest mommy in the world!

Hayden went to Jackson last week. We have had increased seizure activity! UGH can we ever catch a break! Its like the good days are always followed by the bad! We are not giving up though. After many long and exhausting nights, we are finally climbing up the positive day hill again. Praise God!

Hayden's EGG results were slightly discouraging. SIGH.... some encouragement would be extra nice! We added an extra medication. We will be going for a follow up EEG next week. We are trying to remain positive with great attitudes. Hayden is a blessing. Hayden is a joy. We are so thankful for every moment with him! We will continue to stay strong in our Faith as we walk through such an exhausting and discouraging journey. The Good Days outway the BAD Days!

Wednesday, June 13, 2012

Birthday Party Complete

Wow! I am pretty sad to be finishing my last birthday blog. I have enjoyed telling each of you about Hayden's birthday celebration. If this is your first blog to read in awhile, you can go back and read from the beginning four blogs ago.

We enjoyed Hayden's birthday week! Hayden started the week out in Florida. He concluded the week with a birthday party at Black Bayou Hunting Club. We had many loved ones travel from across the United States to see Hayden turn one! We are blessed with so many people that care. More importantly blessed with so many people that express their caring hearts to us directly. Brent and I would not have strength to continue with our lives if it was not for the positive thoughts and words from friends and family. We have gained so many friends through this difficult time in our lives. Thank you for treating our child equally. Thank you to such an awesome group of supporters that love Hayden like their own!!

Hayden began his pre birthday dinner with a meal at Shermans. He was so excited that his Uncle Andrew could celebrate with him. Andrew had to go out of town for Hayden's birthday. He was devastated. We surely missed Uncle Drew. I am so thankful for the bond that each of my brothers have developed with Hayden. As young men, I must admit that yall are truly going to be awesome father's one day! The meal was amazing. He even ate a bite of lemon ice boxed pie. He then got lots of kisses from his Aunt Meg and Aunt Kelli. Kelli snuck alot of birthday loving as Hayden was in an amazing mood!

The following are pictures from the family and friends that attended the Sherman's Pre- Birthday Celebration! THANK YOU for helping kick Hayden's Birthday party off right!!!!!


 Thank You God for the Perfect Birthday week!
 He is so thankful for his Aunt Meg and Aunt Kelli! He loves both of them dearly!
 Aunt Kelli and Uncle C! Wow where would I start? Helpers, Encouragers, and friends through THICK and THIN! Thank you for your love for our child. We can not wait to return the favor one day!
 Miles and Miles to come celebrate a birthday party! Thank you Linda and Paige for driving 14 hours to celebrate this special day!
 Nona and PawPaw Love!
 Nana and PaPa Love!


Hayden had his birthday lunch with his Nona and Papa at the Yacht Club. He was pretty excited about turning one! He decided to sleep through lunch to prepare for his birthday celebration.
Hayden then went to visit his Nana, Cousin Linda, and Paige. He stayed with them while Mommy and Daddy rain to the grocery store. He loved getting some Nana love!



Hayden then had a birthday party at Brown's Pharmacy. The girls wanted to give him a birthday gift! They love Hayden. We LOVE them too!


Hayden hurried home to get ready for his birthday dinner at the Cowpen. He was able to meet his cousin Cash for the first time. I am pretty sure they could become best buddies! We enjoyed seeing Mindy, Missy, Matt, and Micheal! I sure wish I could see our family more often! We are so fortunate to have some awesome family! Dinner was great! Hayden received another piece of pie!


Cheesecake for the Birthday BOY!
 Cousins were worn out after a late night dinner!

We hurried home to sleep and rest up for our big celebration on Saturday. He was greeted at the birthday party by many loved ones and friends. My grandmother's family all came down. We were only missing our sweet Aunt Jerry and Uncle Lee. Mrs. Angie's family was all able to make it! Hayden's great grandma Mrs. Mrytle even made it! We were so excited that she felt well enough to arrive! WOW! So many family members were there to encourage, love, and show our family support! Remember support is what gives Brent and I strength!
FAMILY!
 MORE FAMILY!
 FAMILY LOVE AGAIN:)
 AGAIN:)
 LOTS OF LOVE:)


AUNT MEG LOVE
 
FAMILY LOVE

COUSIN LOVE
 MILES AND MILES OF FAMILY

MINUS DREW:(

They love each other! Uncle B was able to get a large smile out of  His Chi!
We are so thankful for Aunt Patricia. She does not care what time of night we call her. She always seems to make us feel better. A nurse in the family is a plus! Especially a caring nurse!
My Daddy is awesome! He has an awesome family! So glad they made the drive for Hayden's day! Cash is an amazing cousin!


Friends! Wow! What would we do without each of you? Thanks to each of you for caring so much. The friends section is nothing more than a simple thank you. With over 100 people at his birthday party, I'd never be able to place a picture of everyone. I just selected a few random pics:) Our friends seem to understand us so perfectly. They are such encouragers. They pull us out of the hole when we fall deep. They invite us over when we need a smile. They bring us supper when we have a bad day. They send simple messages when we are down. Thank you to each of you for being apart of our life.

Thank  you to each of you for being such great friends. Lauren: We've been friends for awhile! Thanks for becoming even a closer friend when we are at our worse. Thank you for understanding our heartache. Thank you for loving Hayden like your own! Lacey: Thank you so much for being such a supporter to Hayden. Your prayers are heard. Your meals have been wonderful! The love your child gives Hayden is memories in my heart for a lifetime.
  Lisa: Thank you so much for all of your tears, screams, and yells with me. Thank you for all of your hospital visits. Thank you for allowing your children the opportunity to understand that Hayden is just as wonderful as a healthy one year old. Thank you for allowing us to love your kids like our own. Thank you for loving Hayden like your own.
 Hmm... Where do you begin? Thank yall! Thank yall! Thank yall! The love that yall give our child is something that brings tears to my eyes. The way Hayden looks at yall is amazing. We would not be the people we are today without all of yalls advice. Lauren, I know your not very strong. I know you love to cry. I know you have left my house crying a ton of times. I do thank you for not giving up and staying strong for Hayden and myself. Hayden loves each of you like family.
 Hmm. Where do you begin! A HUGE THANK YOU TO BOTH OF YOU AND YOUR FAMILIES. FROM GREENVILLE TO INVERNESS, WE LOVE THE DILLS AND GRECO'S! We are so glad to call yall friends! Thank you for all of your sweet morning messages! Hayden loves each of u!
 We are so thankful for all our friends that came to Hayden's party. Thank you for stopping your busy schedules to be apart of Hayden's special days! Thank you for your prayers. Thank you for your motivation! Hayden can not wait for you to move back home Miss Carrie!
 We are so blessed with so many new friends that have hearts of gold. We are so blessed with awesome supporters and friends! Thank you Leah for all of your help with the fundraiser and more importantly your kind messages and genuine prayers.
 Neighbors? Hmm! Thank You! Thank You! Thank You! We had dreams of our boys playing on a dirt pile. We had dreams of running around chasing our boys. Our dreams have been slightly altered. Thank you for still loving us! Thank you for not giving up on our dreams. I can not wait to watch the boys run around together one day! Oh what a glorious day!
 Okay, I am getting slightly emotional as I think of how blessed we are. Thank you friends from new to old. Thank you Holly for being there for us. Thank you for explaining how you dealt with your brother. Thank you for sharing your amazing mommy with me.  Thank you to my high school bestie for treating Hayden like your own. Thank you for the kisses to the outfits to the feedings etc as the list could go on. Thank you for being the first person that I called to scream at. Thank you for driving to Jackson to hear the doctors say our little boy would never walk and talk. Thank you for not leaving my side as my dreams were crushed. Thank you for reminding me of how lucky I am!

Thank you to all of the other friends that are not picture. Everybody is amazing. Hayden's birthday party was amazing. I am slightly upset as I do not want to end this blog. I am ending this blog with a large amount of emotions and questions in my mind. What does the next year hold? Thank you God for answering my prayers. Thank you God for allowing me to see his first birthday. I am slightly selfish as I want to start planning his second birthday. My prayers have changed. I hope that I can write this blog again next year. I pray that this is only the beginning and not the end. I am going to do my best to remember that tomorrow is not promised for Hayden or anyone in pictures above. I am thankful for the 376 days that you have given me with Hayden. I hope that you give me more.

Well I guess it is that time. Time to end this blog. I hope that I am blessed with the opportunity to write a blog this exciting again in my lifetime. I never thought I would see Hayden's first birthday. God answered this huge prayer for us. We are so thankful! I am going to pray that I receive the opportunity to plan a rainbow and sunshine party next year.  Brent and I rarely saw each other until the end of the party. We took all of the balloons outside together as a family of 3. We had a moment together to make a wish and a simple prayer. We released the balloons into the sky. We wished for a good year of zero suffering. We sent the balloons to heaven to Thank God for allowing us to celebrate with Hayden on Earth.




As the balloons floated into sky, we simply smiled a happy smile. A smile of joy, a smile of hope, and a smile of receiving a miracle. Hayden Brent is the Sunshine in our life. Without Hayden, we would not have such a large ray of sunshine! Thank You God for the best year of our life!