Well 14 months is here! We are so thrilled about his “rainbow and sunshine” party. Hayden has monthly celebrations. Sometimes the celebrations are just family. Sometimes it is just friends. Every so often it is a group of close friends and family. This month was perfect. Hayden had a devastating doctor’s appointment in July. So what better than a rainbow party to make a wish for our angel?  Of course, The Sweetery Bake Shop would make the most perfect and delicious cake. The friends and family would love sneaking sleeping baby kisses from Hayden. All in all it was a wonderful and exciting night to celebrate the life of an earth angel.

We started planning for his get together the week before. Hayden wanted to make a special Happy for all of his buddies that attended his party. He decided to make them a thank you card for attending. He used his ink bad to stamp his feet onto cardstock. We decorated the cards to match the theme of the party. We then decided that we would place his picture on the card. I am sure these are hanging on many refrigerators around town. We wrote, “Thank You for 14 months of faithful and hopeful prayers.” Love Hayden

We had a large turnout. Friends and family filled each room throughout mom and dad’s house. We ate great food and talked about next month. Hayden has impacted so many lives in his precious 14 months. I can promise you this much. He has touched more lives in 14 months than I have in 26 years. He is a true Earth Angel. I know he has changed mine and Brent’s attitude about life. I will now consider each day a blessing thanks to him. He is such a reminder of true joys and blessings.

My mom, mother in law, and grandmother helped prepare all of the yummy foods. We had food left over for days. This was great though because it meant that we did not have to cook for awhile. Hayden shared his cake with all of the neighborhood friends. It was delicious. If you need a perfect cake, Contact The Sweetery. They are amazing people!

Family, Family, Family! Hayden definitely has a lot of love and support. This is only a small portion of the family members that attended. Hayden  is loved by each and every one of them. The one thing about our family is that they love to check on Hayden. They all call each day. They will do my grocery shopping. They will do our cooking. They will do our runs to the pharmacy. Anything that helps make our day easier! Family has been a huge part of support. Brent and I are faced with this daily. We can not just “pretend” that Hayden is “okay”. Family has been there to talk with us about our future. We are thankful for the MANY listening ears.

KIDS! KIDS! KIDS! The children love Hayden. Hayden has taught many of his buddies about love. Hayden has taught the Oakes girls how to pray. They are always encouraging their parents to pray for Hayden and Ava Grace. It is awesome that 3 and 2 year olds are reminding their parents to pray for Hayden. I mean WOW! Usually it is the other way around. These children love Hayden. The bond is amazing. They know that Hayden is mighty special. See, that’s why these children are here to help him! They helped us sing Happy Birthday to their sweet little buddy. I am so thankful for all of the kids that love Hayden so much. My nephew is always asking for Hay Hay and recently started saying My Hayden. He relates all babies to Hayden. He knows to be soft and gentle with him. He loves his HayHay. The Warrington girls have made Hayden welcome home cards, sent him cards from camp, and gone over and beyond. They rock! Hunter and Hayden are good buddies. The "plan" was that these neighbors would play on a dirt pile together. Instead, they are totally different types of kids. Thankfully, we still allow them to love each other. They still have a good time together. We can not wait for Hunter's One YEar old Birthday bash!

Kids from all over the state of Mississippi love Hayden. I taught with the sweetest lady in the world. She moved to Columbus two years ago. I am so thankful that Dana and I have kept in touch. Her little boys made Hayden a Pinterest activity using their own baseball. We now have it hanging in Hayden's room.

Our Earth Angel! Hayden has made us grow up into people that I never imagined. I loved hanging out with my friends. I loved doing for myself. Now I care about NOTHING or NOBODY unless Hayden is involved. I understand that this is very dangerous to my well being. Unfortunately, for the moment I am still focusing on giving Hayden my all. My friends that truly care about us don’t mind hanging out with Hayden on the weekends. In fact, they LOVE having him around. Our friends understand why Hayden is always with us. In fact, they would not want any other way. Brent and I LOVE taking Hayden everywhere. We are not the least bit embarrassed or ashamed. We are probably the proudest parents in Washington / Bolivar County. We LOVE our Earth ANGEL. We LOVE every SECOND that we get to spend as a family!

P.S. Hayden slept peacefully through his whole birthday party. I guess this was our sign that it was going to be a pretty "darn" good month!Sleeping Peaceful Equals warm Hearts for Mommy and Daddy!

Thank You God for this special night of memories that are etched into our hearts forever.

Brief Update

Well, I am so excited that this should be my last blog update from my IPAD. My lap top should be up and running this weekend. Guess what this means? Lots of pictures in my upcoming blogs. Also , proper formats. The IPAD does not allow me to do paragraphs or skip lines. So my blogs should be easier to read in the near future. Well Guess What? It is August! I am SOOOOO excited that we just celebrated his 14 month birthday. We are so pleased. Mommy is just a tad bit down lately. I am sitting at home more because he is too heavy to take everywhere. I am use to working and being busy. The walls are closing in on me. I am so excited about Fall but I  am also terrified about the season change. I am sure you are asking why? Well, Fall means HOLIDAYS. I LOVE to dress Hayden in styling seasonal clothes for Halloween, Thanksgiving, and Christmas. I am TERRIFIED beyond measures to buy clothes for these holidays until the month of. I just can not imagine the holidays without Hayden. I can not imagine how we will go on. That is why I am asking you to help us pray our way to our next miracle. I usually pray for one more day. I usually just ask to make it to the next month. I am wanting to pray for a leap of many more days. I am wanting to have Hayden here for the Holidays. He is looking so good. He is cooing so well. He is our litltle Earth Angel. I spend 24 hours a day suctioning him, monitoring him, medicating, bathing, doing vitals etc. It is a tough job that I am not ready to give up. I LOVE my JOB. The reason I am mainly terrified about the holiday season is the cold air. I am going to do my best to keep Hayden well. Pneuomonia would be very dangerous to Hayden's precious lungs. Fall also means Football and a new school year. This is my little brothers senior year. He is such an awesome young man. He deserves an awesome senior year without the heartache and worries of his first and only nephew. We have lots of adventures and lots of memories to make. I am holding onto HOPE that Hayden will keep fighting this journey. I have cried more tears lately. I feel exhausted and overwhelmed. I am so thankful for my friends that have called, texted, and come to visit us weekly. It is unbelievable! Just a simple text message can warm our heart if we are having a bad moment. I can honestly say I have learned that we have some true and genuine friends both young and old.  I can honestly say that we have the best group of friends. I can not begin to thank all of my mothers friends, my grandmother, and my friends for the fabulous meals. This has allowed us the opportunity to spend more time with Hayden. Thank you notes are coming. Hayden will be writing them so they are taking a little bit of time ;) Be patient because you will LOVE them. Praying for less tears and more happy moments to get us through the Fall Season;) Also, THANK YOU to everyone who wears their HOPE bracelets 24/7 I notice them in Facebook pictures, WalMart or even in public. It warms my heart that so many of you have not tucked them away in your dresser. I have HOPE that everytime you wear your bracelet, you say a precious prayer for our angel. I still have a few ppl that Im not forgetting about. I just have to make my way to town. I WILL get them to you SOON:) Your faithfulness is appreciated.

I so feel prayers being answered in our life. Hayden is so so so sick. Yet he is still developing bonds, memories, and enjoying each moment. We had a few days after our last terribe Doctor's appointment that I just wanted to hybernate. Thanks to each of your prayers, we are back to more smiles and less tears. Thank you friends for your faithful love for our family. Pictures above are from our recent beach trip. As you can tell Hayden loves his home away from home. We hope to make one more trip before we conclude our summer vacations. Well back to Hayden. Hayden is still having seizures. UGH REALLY. NO WE CAN NOT CATCH A BREAK. I refuse to give up on a believing that one day we will have a seizure free day on Earth. I have faith that God is going to grant us this simple miracle in his difficult life. We added a new medication last Monday. We have seen a seizure decrease. We are probably around 10 a day vs. 25 plus. This is a huge difference. We are potentially adding another medication this week. Yes, my brain is full of times, dosages, and adminstering meds. We had many friends bring us meals this week. Thanks to each of you for a huge help. Hayden is getting more difficult to load up and take to town. We are beginning to stay home a little more. He is just so heavy. My back hurts if I do something without Brent's help. Plus, Hayden is not handling the Mississippi Delta heat very well. Each day, I wake up and smile. God is giving me another day. Thank you God for allowing me more moments with Hayden. THe problem is I am always going to want just one more day. I wish I could just stop time. I love my life. I love everyone in it. I have such awesome friends and family. We only surround ourselves around caring, loving, and nice people. It is awesome to have SOOO many loving friends that are helping us with Hayden. The cards, random suprise gifts, the meals, the calls, the emails, the messages are so appreciated. The Mississippi Delta really knows how to care for people that are hurting. We are so blessed to call Greenville our home. The friends, family, and strangers that care for our angel make it worth it! We continue moving forward with a smile on our face thanks to each of your caring words and attitudes.

Happy Birthday Nana

Last year, We were discharged from the hospital on my mom and best friends birthday. Were we excited? No. We were devastated. We could not celebrate. We were crushed into a million pieces. Our dream child was sick. He would never walk or talk. He would become our Earth Angel. We did not realize at that moment how blessed we were. Our life was over. Hayden was suppose to be our little football star not our Batson Children's hospital star. Why is this birthday so special? We had so many moments that we thought Hayden would not be here on her birthday. Nana is so special to Hayden. Nobody can come close to their bond. (not even Brent or myself) Hayden has a special bond with her. My mother has bent over backwards for 14 months. She has done more than any mother would ever even think about doing. She has been my rock. She is my backbone. She encourages me to take a break. She makes me smile. She volunteers to give Brent and I breaks so we can continue to breathe. She will insist until we take her up on it. She cleans my cluttered house. She calls me every morning. She sacrifices all her fun plans to spend time indoors with Hayden. Hayden can not do the normal things that I wish he could. It is so so so so hard to watch everyone do these fun summer things. Hayden and I just sit back and watch, wish and dream. Nana is to the rescue. She takes us shopping. We all snuggle in her bed and watch tv. She is not only the best grandmom but an awesome mother. I never thought that she would put her entire life on hold to help me through the most difficult time of my life. Many of you have told me that I am strong. Well it is only because my mother has helped me and encouraged me. She has cried with me. She does not pretend like everything is okay. She tells me how worried she is about my future. She is open. Her open heart is why Hayden and I love every moment with her. Hayden looks straight into her soul. He is encouraging her to stay strong for his mommy and daddy. He knows he can always count on his NaNa to do anything he wants. He fought so hard to spend the day with her on this beautiful July day. I thank God for the moments that my child is getting to spend with my mother and father. I thank God that they are there to only treat Hayden as a normal child. I thank God that Hayden is their favorite kid in the world. The love our family has is amazing. Thank you God for allowing Hayden to sing Happy Birthday NaNa. We are praying and looking forward to next year.

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.

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.

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.