Brent and I have had many slideshow and Hayden song request after people heard it at the service. I am not very computer savvy so it will take awhile. Mornings are always tough because I should be doing meds, feeding, bathing, and suctioning. Luckily after the few hours of morning, we begin to have a good day until dark. A lot of this has to do with Him sleeping with his body touching mine every day for 14. 5 months except 4 times that he stayed with grandparents. Hayden’s service was beautiful. The yellow and bright flowers made us feel his presence. The fact that my sister in law spoke without a tear in her eye. The fact Brent and I developed the courage to kiss him one last time, close the casket, place the flowers on it, and walk away in front of 500 plus people was his presence. We had so many signs throughout the week. Our song was Blessings. “What if Blessings come through rain drops”: We definitely experienced this with a steady rain at the cemetery. All that was done and said was genuinely from the heart.

                Grace Community Hospice donated a tree to us in memory of Hayden. We have found surrounding ourselves with family and friends are vital. We decided to invite them all over to plant Hayden’s tree. Yes, we did read the directions. No, I am very bad with keeping plants alive. Luckily, Hayden’s three buddies watered it enough to make it float. I have always heard, “You can never water it enough at the beginning.” Well, they definitely took care of this for us. The day was beautiful. The sun was shining down on us.

                Chloe, Anne Marie, and VIncenzo will always be close to our hearts. The reason is because they would tell anyone that their best friend was HayHay. They all are worried. They are all missing him. Chi Chi has been so quiet and calm. Until he sees something that belongs to Hayden. He will then run around looking for him. We LOVE this. We NEVER want these three children to forget about their buddy in Heaven. They have the most amazing guardian angel of all. Lisa took the girls to the cemetery to pick flowers. They miss Hayden. They are so glad he is now well. Some children have to learn too much at a young age. These children are definitely going to be mine and Brent’s second kids. I might not be able to spoil Hayden but I am going to be spoiling them rotten. Sweet Mallie is questioning her buddy too. She is so glad he is not sick. She is just very concerned that I might not have given Jesus all the proper feeding and medicine instructions. She does not want him hungry. Chloe says Yes momma, I am glad he is well but he didn’t have to go. I could have made him well for the angels.  Sweet Suzi Paige was heartbroken. She brought a cross to his tree last night. Some just have to learn so much at such an early age.

                Below are pictures from our tree planting ceremony. We are so proud that all of the friends and family that have stuck by our side were able to be a part of this special moment. I wish I would have had time to invite the whole Hayden clan of supporters. Unfortunately, my house would not have held a tenth of them. Enjoy the pictures. Pray that Brent and I keep our tree aliveJ

Our wonderful family minus Jacob who had to go back to college:)

 Chi Chi says UHHHHHHH

 Great Friends

Hey HayHay thanks for making your presence in this photo

 I miss HayHay. When you miss him come see his tree, Can I kiss his tree? A huge hug and kiss to the tree was given.

 Might as well have a little fun in the dirt.

 Let the watering begin

 The guys

 The girls

 My Green Thumb Husband:)

I love my nephew.

 Our tree.

More water

 More mulch

 Near Flood Zone

 Thank you Keri! We love the cross!

Suzi added a cross to his tree. A pleasant suprise when we go home last night.

not much to say

Wow, I promised to continue to blog. I promised to Hayden that I would continue his legacy. I want a cure for rare diseases, more support for the hospital, more positive attitudes, and to help families of tragedies. I have so much to do that my mind is spinning. I have so much to share that I don’t know where to start. I am trying to remember breathing for the moment.  Do I go back to school to be a nurse? A counselor? Do I write a book about coping with death? What about a children’s book? Do I begin a fundraiser for the hospital? What do I do?

Hayden was our angel. Not many people understand what we encountered on a daily basis. Most “new” moms get to complain about no free time, no sleep, ahhh no time to their selves. Well Hayden had to be suctioned 10- 20 times an hour, fed via tube every 3 hours; monitor went off throughout the night. If we went anywhere I would have to take 02, suction, and many more supplies. Only our close friends experienced the challenges Hayden had. The “face book” friends and followers just don’t have a clue. I am dealing with anger. Why? I do not know. Hayden is so much better. Hayden is pain free. Hayden needs no more needles. OMGOODNESS! He is walking!  I cannot get over the friends that betrayed us. I cannot get over the people that leave when times are tough but come back when times are at the worse. Why is this? I do not know. Why is it hurting my soul so bad? I mean the people that stuck by our side are the most amazing people ever. Why am I dealing with anger of the people that chose the better end of the deal? The people that chose to expect me to come to them vs. coming to us. I am guessing this is the devil trying to put us down. No it is not going to happen. I refuse. We have the BEST Friends in the world. I do not care about anybody in the world except for the friends and family that stuck by us for the entire 14. 5 months.

Our friends have already been visiting Hayden. They have been over hours each day. They are amazing. We are blessed. I have learned so much through this past weekend. I hope that I can continue to help the sick. I hope that I will never betray friends in tough times. I hope that I can be as awesome as our amazing friends. I am so sorry viewers but our group of friends is the best. No questions asked.

How are we doing? Well do you want me to be honest or lie? Well I am going to be honest. I smiled as I threw away his medicines and feeding tubes. I smiled as I mailed off a shipment of supplies, diapers, wipes, and a prayer cross to another Leukodystophy family. So yes I have smiled. Our friends have been by our side. We have been enjoying some good afternoons. We have had fun. Until they leave. I love my husband but it is not the same. We are a team with Hayden. We are missing our main player. I am devastated. My heart is crushed. I  feel like going on a shopping spree. I feel I deserve it. Yet, I don’t want anything for myself. I want my baby back. I want him in my arms. I want that one last artwork. I want that one last kiss. Just Breathe Mommy Breathe. Life is back to normal for all around us. Brent and I well were just chilling. We are in shock. We are devastated. No life is not good. No I have not talked to many people. No I am not okay. I lost my world last week. I want my world back.

I will begin a blogging series on HOPE, FAITH, COURAGE, & LOVE. I will continue to share moments from the funeral and tree planting ceremony. We are going to get through this. I believe in MIRACLES AND HOPE. I believe Hayden received both. He is talking, smiling, running, jumping, and playing. I bet that blonde Hair looks like silver silk. Thank You Lord for allowing us to be the parents to the most amazing Earth Angel in the world.

The words of encouragement, the donations to Batson, the food, the love, and the friendship are amazing. We could not have done any of this without you. I am asking you pray that I get over the negative worries of the betrayed. I ask you pray that we forget worrying about that, my heart is aching. Pray that we only worry about the friends and family that cared. I pray that you ask God to lead us in the correct direction. Whether it is to go sky diving, jump off a mountain, go back to school, or just to continue being Hayden’s missionary. I beg that you pray for strength. I just want to hug and hold my little baby one more time. I just want to Breathe without tears. At this moment it is not happening. Thank you to our friends that have not taken off their hope bracelets. Hayden received so much hope. I love you baby boy. The Mississippi Delta has truly shown their support throughout the past five days. Ya’ll rock!

Coming soon….. The beginning of our new journey with the planting of Hayden’s tree…..

Sleep well, hug your loved ones, smile, enjoy, and remember to live each day as your last. I woke up last Wednesday with no clue it would be Hayden’s last. Please remember life can change quickly.

Peacefully in Heaven

Wow! I started this blog awhile back. I started it to allow each of you to follow our journey. I have loved blogging as it has helped clear my mind. If any of this is misspelled or doesn’t make sense please understand. I knew when I began blogging that one day would be the hardest blog of all. This is going to be by far the blog that I have dreaded. Before I start, On Tuesday, I blogged about to Earth Angels. I blogged about praying for them to receive a miracle in surgery. They did well and we are so blessed that they are continuing to do well. I barely mentioned Hayden in that blog. I was considering us so blessed. Hayden was cooing, smiling, and doing great. We were heading to Destin at two on Wednesday. Life was great!

Our awesome hospice nurses came to check him Wednesday morning. He had an increased heart rate. We decided to go to Gillespie’s office for a quick x-ray before leaving for vacation. No fever, No green secretion just our healthy little earth angel. We received the x-ray results to find that Hayden had a small amount of pneumonia. We said well let’s get him to Blair Batson. They can fix it! They are our heroes. We started by car to Batson. He began DE stating into the 40’s. We pulled into Indianola. They are simply amazing. The doctors and nurses were awesome. They swiftly got the helicopter from UMC. In the meantime, Hayden was down to 2 -4 breaths a minute. We were screaming just breathe Hayden breathe. He would breathe. Wow our fighter loves us! The helicopter got their only one parent could ride. I had a feeling that Brent would not see him alive again at this point. I just felt positive he would die on the ride. I called my friends Lisa and Amy Oakes to meet me at the helipad. I figured I would need consoling as it would happen. Well, the helicopter ride was beautiful. He was breathing 14 breaths a minute. We got to Batson. The x-ray looked better. We began to treat pneumonia. All of our family was there to love Hayden. Jennifer Rutledge (a photographer) happened to be on the hall snapping photos of another family. She snapped some of us. I told her I would call her again when he was well.

The family left around 9:30. By 10:30 we were calling family to turn around. We needed them here with us. Our amazing nurse Jodie came back to the hospital to be with us. Hayden’s oxygen began dropping. Man oh Man he was sleeping peacefully. His hands were wide open. At this moment, it was time to make the decision of an external ventilator (CPAP). We chose it. I could not let him go. I could not stop fighting. I started regretting that decision as I knew Hayden would never walk nor talk. He would continue seizing here on Earth. We told Hayden to go home. Enjoy walking and dancing. Play ball, jump high, and encourage us to keep fighting for kids just like him. I held him as he took the most peaceful last breath. Brent held him as his peaceful heart stopped.

Hayden’s soul went to heaven. He is partying like an angel. I am pretty sure God looked at him and said Well-done son, I am proud of you. Hayden was a missionary that could not walk nor talk. He allowed us to talk for him. We were so blessed to be the parents to a missionary that impacted families in over 20 countries around the world. Life is a blessing. Each day is a memory. Love your family. Cut out the drama. Cut out the hatefulness. You never know what moment will be your last. Trust me it can happen in the blink of an eye. Healthy and Beach bound with his awesome Uncle Todd and Aunt Lauren at noon and within 13 short hours he receive his wings.

Fly high baby boy. Mommy and Daddy are hurting and are now having to remind ourselves to breathe. We are so thankful that you celebrated Aunt Kelli’s birthday a week early. We are so sad that we are going to be celebrating your homecoming on her birthday. It kills my soul. Promise me, you will look after each of us tomorrow. Promise me, you will show us constant signs of your love. I am going to miss being your mommy on Earth. I can promise you, I will always be your mommy and you will always be my number one. You will always be Daddy’s little boy. We Love you to the mom and back and man oh man; we have fun days ahead when we get to heaven!

Funeral Arrangements:

First Baptist Church

Greenville, MS 38701

Visitation 930-11

Funeral 11

Graveside immediately following

Donations in Memory of Hayden:

Blair Batson Palliative Care

C/O Amanda Alliston

2500 N. State Street

Jackson, MS 39216

Want to smile? As Brent and I past Oakes Toyota today, we watched a blue balloon fly off of a car into the skies. Mary Elizabeth Oakes (Ava Grace’s Aunt) and Hayden are now buddies in Heaven. They were letting Ava Grace know that they love her, care for her and are fighting for her miracle.

Wow! It has been a long day. I am sure many people have a lot of things that they would LOVE to complain about. Yes, I am guilty of the same thing. I have found myself complaining a lot over the past 48 hours. Hayden has had some rough moments. He has been “snoring” really loud. His breathing has been rough. He has been crying a lot at night. We have had him hooked up to the monitor all day. Luckily, his oxygen and heart rate are staying normal. We had a blue spell yesterday. Thankfully, Hayden’s awesome nurse was sitting here with me. Thankfully, WE ARE HOME! WE ARE HOME! We are able to go and do as we please with him.  We are NOT IN THE HOSPITAL like so many families across the world. Some people are not as fortunate as us at this very moment. If you had time to pull up my blog, I hope you have time to join me in pray for Hayden and two special babies. Often, we find so much time to complain and fuss. We sometimes forget how fortunate our lives truly are.

First, please keep the Oakes family in your prayers as Ava Grace is going to undergo another surgery. She is the prettiest little Earth Angel. I held her last week! I must admit it was the best feeling in the entire world. She has fought so hard for her precious life. Her family has never left her side. She will be undergoing surgery tomorrow. She is having a VP shunt placement from her ventricles in the brain to the abdominal cavity. She has enlarged ventricles. Hopefully, this will stop the swelling. I have full faith that the Drs. at Blair Batson will take awesome care of her. I know that she will recover quickly. The problem is mommy and daddy. Surgery is such a fearful thing for parents. Please pray for sweet Ava Grace and her awesome family. Please continue to pray for her so that she can continue to grow, get stronger, and come home in the future. She is beating odds that nobody ever expected. HAYDEN IS PRAYING FOR YOU! STAY STRONG.

Next, a few days ago I saw a Facebook prayer request. I saw another request yesterday. Both of them were for the same family. I immediately found their page and began talking to the mother. I felt that I must share our story. She feels that her life is over. That she will never be the same. No, her life is not over. Yes, her life has changed because she is now the mother to an awesome, strong, and adorable Earth angel. This adorable Earth Angel will also be having surgery in the morning. The family from Tupelo is undergoing surgery at LeBonheur. I so enjoyed talking to Gunnar’s mom. I have full strength that their family will find a strength given by God that they never expected. I reminded them that when Hayden had his diagnosis, I hit the bathroom ground screaming HELP, HELP, MY LIFE is OVER. I screamed WHY? WHY? WHY? Not US. Not Hayden. I quickly reminded her that I quickly was able to realize that I am so BLESSED to be Hayden’s mom. He has made us realize how precious life is. I HOPE that if you are reading this you will pray for Megan and her husband. Please pray that they gain the strength to fight for Gunnar. Please PRAY THAT GUNNAR shocks all the Doctors tomorrow! Please pray that it is simply a scare. Let’s pray that the Cystic Fibrosis is the only issue that they will have to deal with. Please Lord; do not add anymore cyst, tubes, IV’s etc. to this baby’s life.  Please pray for this awesome family to stay strong as the Doctor’s take extra good care of their baby.

The Following Post is from Megan (as you read it you will shed a tear, you will be reminded how precious life is, and Hayden and I HOPE that you join this family in FAITHFUL PRAYERS):

From Megan......I have sat in the family room here at LeBonheur on the 8th floor where we are staying with our sweet baby crying tears I have never cried. Today has officially been the hardest day yet. I apologize for the long wait between updates, but I simply had to come to terms with everything on my own first before I could even begin to think about being strong, much less wrapping my head around it all. We are taking it one step at a time. We need our prayer warriors now more than ever. I've never felt so broken, so helpless, so tired, and so desperate for prayer in all my life. The only thing I can do to help take away some of the pain is to write, so here I am.

This morning the doctors came in and Gunnar was lying on his back and he was breathing as he has been for the past couple of weeks…loud and scary. His oxygen was fine, but we learned today that doesn’t mean that he is getting everything he needs. Dr. Schoumacher listened to his lungs and said, “It is definitely coming from his upper airways. His lungs sound perfect today. ” We were so happy to hear at the time that at least his lungs sounded clear today. Then he flipped him over and the loud breathing slowed down immensely. Dr. S looked at us and said, “Hmmm…this is a clue.” You could tell a million light bulbs were turning on inside his head, and you could most definitely tell that this threw in a whole different shaped puzzle piece into the mix. He quickly ran through everything that would be coming up test-wise throughout the week on Gunnar and left the room after answering a few of our questions. He looked as though he was on a mission.

Not long after my mom had planned to come with me so that I could go to the bank downtown leaving Gunnar with his PopPop, BB, and his daddy for a little while. As we were walking out the door we saw Dr. S and his assistant physician down the hall on the computer. I assumed they were working on someone else’s case, so Mom and I proceeded to the closest elevator. Both doctors stood up and held their hands up to walk back to our room. We walked back, and this is when we received the news.

Dr. S and Dr. H called in several other ENT doctors with them to revisit the DVD that was created during Gunnar’s bronchoscopy last week to see if there was anything that would cause him to be breathing better on his tummy. It was then that they discovered a tiny shadow on his windpipe. They said the shadow should have been much darker than what it is showing if the airway was clear. The ENT doctors agreed and they are now speculating and feel most confident that Gunnar has an extremely rare subglottic cyst blocking over 50% of his airway. On Wednesday, he will be put to sleep, and the ENT doctors will be doing what they called a rigid bronchoscopy to confirm there is a cyst. If there is indeed a cyst, Gunnar will be given a tracheostomy. The trach will stay in for weeks until it is healed. Once healed, he will go into surgery to begin the first step in removing the cyst. They told us he will be put to sleep around three different times at different times to remove the cyst laparoscopically over a certain period of time. The trach will stay in at least the first year of his life if not longer because they do not want Gunnar eating or anything through his mouth to stay clear of where the cyst was to allow it to heal. He will have a G-tube put in his tummy throughout this time for us to feed him.

Trach + CF = exposure to germs and infections that is even that much scarier to think about right now. The thought of possibly not hearing my baby’s coos and cries the first year of his life is devastating. What is even more devastating is that this has nothing to do with everything else going on. Dr. S said, “Unfortunately, this baby has one of many different problems going on right now…on top of having a chronic illness with Cystic Fibrosis.” This cyst is a completely new finding. While having the rigid bronch on Wednesday, we still have to address his lungs and heart. His left lung as mentioned before is being compressed by something pulsating (around the heart) against it making it that much harder to breathe normally. Well, today we found out that when they reviewed the DVD that Gunnar’s left lung is not just compressed 80% but more like 90%.

In addition, we have to continue treating the staph found in one of his lung cultures with antibiotics.

Also, we are still trying to determine whether Gunnar is aspirating his feeds which will be done in a long, more in depth swallow study which will possibly be tomorrow. We first heard this morning he would have this done at 2:00 today, but that was rescheduled once the possible cyst was found. Instead we were taken down to radiology to have a esophagram completed as the doctor’s wanted to rule out a vascular ring which we found out he does not have; however, they did detect something was pushing against his esophagus (“large indention”) which they think is either a large mass or an enlarged heart which will have to be fixed with surgery. This is what is also causing his lung to be compressed as well whatever it is. This is totally separate from the cyst and upper airways issue. Watching his tiny body being strapped down tightly to a board with his tiny arms being placed above his strapped down forehead…yeah, let’s just say it was not an experience we ever wish to relive. He cried, I cried...just plain tough.

All of this was told to us in that one little doctor room visit when we got pulled back to the room. Talk about a lot to take in for one day. This mommy and daddy are exhausted. Our request today is that you simply DON’T STOP PRAYING. We are not going to accept that this cyst is present until it is confirmed on Wednesday. They said if it is not a cyst it could be a number of things, but they feel most confident it is. Please pray this is not a cyst and our baby will not need a trach or a G-tube inserted in his tummy. I am crying out for help…and the only thing I know to ask for is prayer! After all, it is the most powerful thing you can give us right now. Please, I am begging you. PRAY. Prayer changes thing and miracles happen every day. Even the ENT doctor said we may be proven completely wrong when we go in there and to pray nonstop. Man, does it feel good to know that our doctors are believers! No one is touching my child that doesn’t believe. I am asking that each of you get on your knees and pray for my child. The doctors are praying for Gunnar, the nurses are praying for Gunnar…Gunnar will be healed!

Speaking of nurses, we have been so blessed. A special soul entered into our life when stepped foot into this hospital this morning. Her name is Lindsey. Lindsey has been through a lot including a car accident when her family was told she wouldn’t live. Even more…Lindsey had a trach. God placed Lindsey in our lives today for a reason, and I just know that reason was to help comfort me in knowing doctors do not know everything.

GOD IS OUR PHYSICIAN, OUR FATHER, OUR EVERYTHING. Only God knows His plan for Gunnar’s life. It takes one tiny minute, maybe less to share my post to your timeline. I want everyone that knows you, knows me, and knows Gunnar to PRAY. Spread his name all over this country. We need prayer and this family BELIEVES! Don’t spend a single second praying for me…pray for my child. Josh and I will be okay…we will get through this. Is it tough? Yes, it is a nightmare. I feel like this time in our life to enjoy our newborn baby is being taken away from us. BUT…you know what? We can’t think like that. Gunnar is a blessing! He was given to us for a reason, and we must celebrate! Celebrate that God is doing BIG things in our lives and give him all the glory for everything He doing for my baby.

In prayer and In His Grip Always,

Gunnar’s Mommy -Megan G. Herndon

Lastly, thank you for checking Hayden’s blog tonight. Please continue to pray for our precious son Hayden. Please add sweet Ava Grace and sweet Gunnar to your prayers. Together, we can see miracles occur in all three of their lives. We must believe in miracles to receive them! Lastly, Facebook friends follow their progress on “The Gift of Gunnar” facebook page. Let’s show this family the love and support that they deserve. I am so thankful that God chose these awesome parents to take care of his awesome Earth Angels. I must say I watch Hayden seize daily. I get frustrated and angry. I cry and lose strength. When I see families undergoing surgeries, I am reminded life could be much worse. Take one day at a time. If it is a bad day, take only a half of a day at a time. If work or school makes you angry, remember life is a blessing. Tomorrow is not promised. Enjoy each moment. Make each day a special memory. Thank you for 14.5 months of faithful prayers and love for our family.

We survived another fun filled weekend! Hayden enjoyed Friday night with his Nana, Papa, Jacob, Andrew, and of course Brent and I. We took him to Lost Dog for some yummy pizza. We then went to the lake with friends on Saturday. It was 85 degrees. We definitely enjoyed ourselves! Sunday, Hayden was kind of “scaring” us. He was breathing at an odd pattern. He slept most of the day. His Aunt Whitney came to the rescue to watch him while I went to Wal- Mart. WOOO Thank You Lord for helpful friends.

We had a party to plan! Hayden is so blessed to have so many awesome friends in his life. I can tell you that he is loved by so many. The bond that some of our friends have with Hayden is amazing. I can promise you one thing; you know you have genuine, caring, and kind-hearted friends when they don’t leave your side during difficult times. In fact, they get that much closer to your side! Hayden woke up so excited about the PARTY. I believe he thought it was for him. I kindly explained to him that he has 2.5 weeks left until he is 15 months. He promised me that he would be patient. We cooked and waited on Hayden’s “Aunt” Kelli to get here. She had NO CLUE that a lot of her friends and family would be waiting here on her. We had a grand time. Hayden and Cash were swapped from person to person as everybody enjoyed baby time. We laughed, ate, and enjoyed each other’s company.

My nephew never wore this outfit so Hayden glady borrowed his outfit. So precious on him! I love the high button outfits. He was excited and looking forward to party time!

"Aunt" Leathe came two hours early so she could sneak a lot of loving.

 He was so excited to see his friends! Hayden loved all of the love that Brianne had to share!

 Happy Birthday Kelli! We are so thankful to have friends that loves our child like you and Clayton do. Thank you for being a shoulder to cry on, a friend to laugh with, and a loving person to our child.

 I LOVE that all our friends are still wearing their hope bracelets! All the guys are still proudly wearing them. We must admit it warms our heart:)

Even 31 year olds can eat cake and blow out candles. Hayden was still slightly confused as to why we were singing to her vs him. He thinks ALL parties are for him! He did get a bit of the ice cream though:)

 Sweet Jordan has texted many days to check on Hayden. Her encouraging words have been very helpful on bad days. I am so thankful that she was able to meet Hayden! I know he loved her!

 Hayden was thinking really hard about what to give Aunt Kelli for her birthday.

We thought about gift certificates. We thought about clothes. HMMM? What should Hayden get her? We finally decided that the best gift of all would be his feet on a stepping stone. Yes it made his Aunt Kelli cry big crocodile tears.  She loves Hayden so much. I got some pretty ugly looks from his Aunt Whit and Aunt Lauren. I believe they were jealous! Looks like we will be making more stepping stones for Christmas gifts this week! I am so blessed to have such caring friends. Hayden is so blessed!

I found the following quote on somebody’s Facebook this morning. It truly reminds me of my life. I have learned who cares. I have learned who loves. I have learned that most of our friends are closer to us now because of their love for Hayden. I feared at the beginning of his diagnosis that we would lose friends young and old because they wouldn’t know what to say or do. I feared they would just run away.  Luckily, almost all of our friends have become more like family because of their bond with Hayden. Our friend’s text daily to encourage Hayden to have a good day. Each friend is a blessing to our life. Each friend has become more like family. They have all encouraged us more than we could have ever imagined.  They have cared for us on the good days but more importantly the bad days. I am so thankful for each weekday and weeknight that our child gets to share with our awesome friends. YALL ROCK! THAT’S EXACTLY WHY HAYDEN LOVES EACH OF YOU SO MUCH! LOOKS LIKE WE WILL BE ORDERING MORE STEPPING STONE KITS TODAYJ EACH OF YOU DESERVE ONE!

Hayden has seemed pretty peaceful in the past few days. His hands have been opened more often. He has even been smiling. We are still seizing. Fortunately, only around 6 times a day. Yesterday, he was seizure free until 6:00p.m. We almost had another 24 hour day! This is a huge little miracle. Hayden has been using the restroom on his own. This is huge too! Normally he gets constipated before going to the restroom. All in all he has been feeling good. He is officially 30 lbs. Can you believe it? He is one growing little Earth Angel!

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.