Holidays, Holidays, Holidays! What more do I need to say? Time change, time change, time change! What more do I need to say? I need a little more sunshine on these long sad nights. Well Brent and I have struggled tremendously since Halloween. The things that happened on Halloween were unbearable. We were prepared to be sad but not to hurt so much. Anyways, I have learned so much through Hayden’s process. I have said it once and I will say it again; our close group friends have been our backbone. Even strangers have given us more strength than imaginable.

Tonight, I spoke to a girl I knew from Washington School. She was a few classes older than me. We do not know each other that well. She informed me that she has always loved looking at pictures of Hayden. We briefly began to talk about the holidays. She said, “I’m sure it’s hard. I can’t imagine how hard it is, but I’m sure the holidays in Heaven are so much better than anything he could experience here. Can you imagine how big the Thanksgiving table will be where he is and the millions of Christmas lights and decorations he’ll get to see? He’ll get to be with Jesus on his birthday!” I cried happy tears after receiving this message. I cry happy tears again as I type it. I hope it gives each person that is reading my blog that has lost a child or family member this year a sense of HOPE and a sense of UNDERSTANDING that HEAVEN is so much better than EARTH during the HOLIDAYS.

It makes me feel selfish. Why do I want him here so bad? Why do I want him to come back to Earth where he dealt with 50 plus seizures daily and was completely dependent on me? Why would I want him to leave Heaven where he is at peace, pain free, and 4 days shy of 3 months seizure free? I guess it is because I am so eager to see my chunky monkey again. I am so eager for the day I can hear him say “Mommy” for the first time.

Hayden went 11 weeks seizure free last fall. He broke this seizure free moment on Thanksgiving. He seized all day and this only got worse during the Christmas Holidays. I was devastated. I was crushed. My friends tried so hard to buy him toys for Christmas. I bought him so many myself. I pretended that he was using them. I am not sure if this is called NIAVE or HOPEFUL. Last Thanksgiving, I had to mix 3 ounces milk, 2 tablespoons cereal, and a half jar of banana’s to make him eat. I was naive against needing the feeding tube. I was determined to feed him. So ALL in ALL even though we had a great Holiday season last year, Hayden was tired and hurting.

This year, Hayden will eat mashed potatoes and pecan pie. He will celebrate with the biggest cake of all time. He will sing Happy Birthday JESUS. He will walk around and actually have the ability to play with toys. Even though, I selfishly want him here. I truly understand that Hayden is the lucky one. He is the one that gets to sing Happy Birthday, eat cake, and play with an abundance of toys.  We might not have a room full of toys in our home this holiday season but we will shop for Hayden’s friends at Batson.

God Bless Each Family that Has to Experience the Holiday’s with their children this year.

Lastly, thank you to each person who has already sent gifts for the Batson Toy Drive in memory of Hayden and Ava Grace.

“Lord, please…. From the depths of my heart I cry out to you.  I’m trying to find my way. The road is rough. Despair is lurking nearby. Will I stand or fall? Break down or be strong? Will this pain ever cease?” Jill KellyJ

Ava Grace/Hayden Christmas Project for their Earth Angel Friends at Batson

Well it is Christmas Open House Weekend in many of our small Delta towns. Many people are preparing for the Holiday season. For Amy, Bryan, Brent, and myself it will be a struggle. It will be a struggle for Amy and Bryan to continue to keep smiling faces for their angels during the Christmas season. While we will be at an empty and boring house on Christmas. Halloween gave us the feeling of being invisible and broken. So I am really scared that I need to disappear to an island for Christmas. Luckily, instead of disappearing, we are anxious to help children that are battling diseases gain a smile this Holiday season. The palliative care team and child life teams were truly a blessing to Ava Grace and Hayden. They truly gave us love, HOPE, and SUPPORT. We are looking forward to giving back to them. Many people have asked what they can do to help in memory of Ava Grace and Hayden. Here is a list of needs for the Palliative Care floor at Batson. They will share these items with other floors also.

The following letter is a list of needs for the Batson hospital floor of Palliative Care:

·         A slight reminder:  children actually LIVE on this floor in the hospital.

Cups, McDonalds, Backyard Burger, Subway, Chick-fil-A, and Wendy’s gift cards  (20 dollar Maximum)

New Release movies (Baby Einstein up to Teen)
DS games
iTunes cards
Hobby Lobby, Wal-Mart, Target cards
Rattles and teethers
Infant/Toddler toys with lights and music
Karaoke CDs
CD players (small ones) and popular CDs
Xbox 360 and Kinect Games

Prepaid Visa cards (20 dollar maximum)
Word search and crossword books
Art canvases of all sizes
Bedside arts and craft projects (Color Wonder, scratch art, sand art, etc)

Cribside Mobiles (Fisher Price aquarium types)

Journals
Crayola Markers
Social Games (Catch Phrase, etc)
Look and Find/I Spy books
Party Blowers, whistles, kazoos etc
Small photo albums
Disposable cameras
Photo paper
Scrapbook materials
Hand and footprint kits (can be found in craft sections at Hobby Lobby/Wal-Mart)

We will be taking these gifts to Batson sometime in the first few weeks of December. If you are interested in donating gift cards or anything else to Batson in memory of Hayden and Ava Grace, thank you! GIFT CARDS ARE A HUGE HELP AND NEED TO THE HOSPITAL. MAXIMUM OF 20 DOLLARS PER GIFT CARD.  MANY FAMILIES SPEND DAYS, WEEKS, AND MONTHS IN THE HOSPITAL. THESE ITEMS HELP FAMILIES financially. SECOND, I ASKED ABOUT CANVAS’, THE CHILDREN THAT LIVE THERE LOVE PRETTY DECORATED CANVAS’ SO IF YOU LIKE TO PAINT GO FOR ITJ ALSO BLANK CANVAS’ ARE NEEDED AS THEY LIKE TO PAINT THEMSELVES. GIFTS/TOYS/GIFT CARDS cannot be wrapped!

Lastly, teachers: PICU and NICU cannot receive items. We were thinking of allowing children to do Christmas cards/ pictures to pass out to these families. Merry Christmas is allowed on these cards. So if you and your class are interested in making Christmas cards, GO FOR IT J

You can mail to either of us if interested in participating. I know you will place a smile on each of these children’s faces. Thank you for your faithful prayers and loving hearts.

Holidays without Hayden

Well from the beginning, I have promised one thing in my blog. The one promise is honesty. SO TODAY MANY OF YOU ARE WONDERING HOW WE ARE DOING?

I would like to start by saying with 70,000 viewers, my blog is not just for my community. It is to help  many families suffering from deaths of babies just like us. In fact, my main focus is to help people that are like “us” now. I do not plan on discontinuing my blog anytime soon. The reason being is it is helping people as far as Australia cope with rare diseases similar to Hayden’s. My blog is reaching out to many families of children that have passed into Heaven.

How did Brent and I do with our first holiday?  Well many people can answer this question because you called, texted, emailed, and even sent cards to us. We did not expect for Halloween to be very difficult. Unfortunately, it was devastating. Halloween is supposed to be a day with family. Instead it was us with friends. We miss Hayden. We miss keeping him involved. Every time, we talked today sadness would fill our hearts.  We were filled with grief and sadness throughout the day. I know Hayden was pretty sad in Heaven. He never wanted his mommy and daddy to be sad. He watches down on us each day. He hopes that we will smile, stay positive, and continue his legacy. Unfortunately, today was a day where sadness over flowed throughout our hearts. We were filled with hurt, anger, grief, and so much more.

The one thing that I would like to say is thank you to each person that constantly checks on us. Hayden wants us to be strong. Your courage, quotes, pictures, and calls have reminded us that Hayden has inspired many.

As we begin to cope with the holiday season, I hope you are ready. Amy, Bryan, Brent and myself have some big exciting news of how we are going to continue the legacy of Ava Grace and Hayden throughout the Holiday Season. We have many friends that will be very excited to help. We will be blogging about it together in the next few weeks. We love helping others. We look forward to getting each of you involved. I would much rather disappear until January. I would much rather hibernate so I could stay strong and positive. Unfortunately, we have work to do. We have children just like Hayden and Ava Grace that deserve a smile this Christmas season. We look forward to sharing more with each of you in the upcoming weeks. I know Hayden and Ava Grace will work in each of your hearts to participate.

God is GOOD all the TIME no MATTER WHAT! 

“Who can live like this? Life seems so empty and meaningless. I feel hollow and lost. Where can I find life and hope? Everywhere I look I am reminded of what used to be. Not a day goes by that I don’t ponder this life and love of yesterday.” Jill Kelly

The truth is Brent and I miss Hayden. We miss every small thing about his precious body.  We often wonder are we going to be okay. The truth is life will never be the same. I mean we were given the ability to be the parents to an Earth Angel. We are going to continue to have good days and bad days. The days are not stopping for us as we grieve. We still have to go on with work and daily routines whether it is a good or bad day. This is definitely a bittersweet thing. My heart will never be the same. We will never “get over it.” We will always be missing our number one.

God is not done with Hayden yet. Hayden is just sitting in Jesus’ lap watching Brent and I complete each of his duties. So, I have to remember most children lie and disrespect. Hayden was so PERFECT.  He never lied nor disrespected us. WE ARE BLESSED. Hayden always went along with the flow. WE ARE LUCKY. Hayden was an EARTH ANGEL.  WE WERE TRUSTED BY GOD WITH HIS DELICATE SON. WE ARE PROUD. Now, Hayden is gone. We cry each day. Are we supposed to move forward? Are we supposed to forget of him? NOOOO because God is not done using Hayden.

Brent and I will continue to help families of special needs children. I look forward to getting involved in the Special Olympics. If you know a family with a special needs child, please do not be afraid. They deserve love too! Help these precious families out. These children go through more in a day than many people do in a month. They definitely deserve love and respect. I have heard so many times that people don’t know what to say. Well if you know one of these type people, remind them that a simple text, card, or hello can make the days to families like us. We are normal human beings too. Families with sick/handicap children deserve to feel the love, prayers, and support of others. If you would normally turn your back, take a moment and think of someone to help.  I promise you we all know someone with a handicap family member, illness, autistic child, etc. HELP THEM OUT! Trust me, if you were in these families’ shoes you would understand. They deserve it! Brent and I will continue to raise awareness and money for Palliative Care and Blair Batson. Without each of these wonderful organizations, we would definitely be grey headed. If you need help feeling blessed go visit the hospital. Hunter’s Hope is a foundation for Leukodystrophy’s similar to Hayden. Brent and I cannot wait to help them bring awareness to these horrific diseases. March of Dimes: AWARENESS, AWARENESS, AWARENESS! Little to say these are just a few of the ways Brent and I are continuing Hayden’s legacy. We will continue to believe and have HOPE for Hayden and all the kids in the world.  I am slightly over whelmed with all of the responsibilities that we are taking on but it is all about helping children and families of children like Hayden. Hayden will remind us to “just breathe.” He will remind us by sending signs of dimes and butterfly’s to say well done mommy/daddy. If any of you are interested in getting in on raising awareness or helping kids like Hayden, we look forward to you helping us. We will be doing GIFT CARDS for restaurants near the hospital for Batson for Christmas. We LOVE the families that are so similar to us.

Brent and I are clinging to each other, hope, and faith. God picked us for a reason. We will continue to use this journey as a positive blessing. We will continue to believe in Miracles. After all, Hayden received one. He is pain and seizure free. Hayden’s chubby cheeks and blonde curls are skipping over rocks in Heaven.  Thank you for your faithful prayers.

Holiday Time

Do you ever wonder what life would be like if things were different? Do you ever wish you could have something that you cannot have? Well here it is… the holidays are approaching. This weekend has been terrible. I loved Holidays with Hayden. He had seven smocked Halloween/harvest outfits. He also had 3 Halloween costumes. The moral of the story today is grieving during the holidays is terrible. You WISH you could have one more Halloween with him. Unfortunately, in reality I do understand that you would always want just one more. The holidays are going to be different. Everybody gets so excited about trick or treating, class parties, Halloween movies and the list goes on. What am I suppose to do without Hayden for Halloween? Well we are going to plant flowers at the cemetery. He will have the prettiest grave in Greenville. He was our sunshine. He was everything in our eyes. It has been two months but it seems like an eternity. We cry. We hurt. We have days where we struggle to breathe.

Then I question, what if God would have allowed Hayden one more set of Holidays? What would it be like? He was getting so big. Would he be in a wheelchair? Would he be on continuous O2? Would he need to be deep suctioned even more? Would he be having 100 plus seizures a day? Bless our poor angel’s heart. He was so strong. He endured so much pain each day. Yet, he still smiled and cooed. We are going to remember to that Hayden is walking, giggling, and talking. He is learning all of the “in’s and out’s” of heaven so he can teach us one day. We will be able to spend eternity with our precious pumpkin.

I walk through Wal-Mart to see people complaining about having to buy costumes, candy, etc for their kids. Well, I just wish everyone realized to count each day as a special blessing. Nobody is promised tomorrow. I would do anything to buy one more bag of candy, and one more costume. Be THANKFUL that you are given the opportunity to spend a holiday with your precious family. Take photos, paint pumpkins, and enjoy each moment. Life can change in a year. Life can change in a way that makes breathing difficult. So make each moment count. Love your family unconditionally. I am so thankful for a son that taught me real life morals. I am so thankful for a son that allowed us the ability to realize what is important in life. I am so thankful for a husband that is going to be my backbone as we struggle to breathe throughout the holiday season. All will be good in the end because we will spend eternity with our child in Heaven one day.

“Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9B

arts/crafts

Special moments are so much more important than winning a lottery. Special moments with your children are things that will last a lifetime. I must admit sadness is far from leaving our hearts. We are devastated. The rainy cool fall days are so depressing. It makes us miss our little angel just that much more. The one thing that I can say is memories will get us through the weak moments. No, you do not have to be creative to have fun with art. I will treasure my Hayden art work on the good days but importantly the bad days.

Clayful Impressions and Red Leaf Pottery helped us receive many lasting impressions. I wear my jewelry from Clayful Impressions daily so I can feel his precious thumbprint. I am so glad she is coming to Greenville twice this month. Everyone that has appointments will treasure her work more than a diamond necklace. My kitchen is full of Red Leaf. I love my “Art frame.” We trade his work out weekly. I am so thankful to have made art for all of the upcoming holidays.

Enjoy moments with washable paint! Arts and crafts with sweet angels is just another way to treasure each moment as they growJ I must admit Hayden was a hard working artist!

“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. –Psalm 139:14”

We will continue to hold onto all of the memories made to keep us “breathing.” I must say I am so THANKFUL God gave us the ability to use pinterest and creativity to enjoy many bonding moments with our angel.

Believing in the power of prayer to restore our strength.

Well it is almost Hayden’s 16 month birthday. So I know many of you are beginning to wonder how Brent and I are doing. Well, the truth is we are transitioning. Unfortunately, it is not too good. I have always spoken the truth in our blog. I will continue to speak the truth in our blog. I was SOOO busy as soon as Hayden passed that we never really had a moment to stop breathing. We just kept on being strong for Hayden. We kept on looking at signs from Hayden. We are continuing to look at Hayden signs. Hayden comes in the signs of dimes and butterflies. I LOVE my sweet man.

                The company is slowing down. The calls and messages are back to normal.  The mail is back to normal. The flowers are dead. The house is clean again. The grass is beginning to grow over the grave. I have gone back to work. Okay, so life should be normal again???? Well, I wish it was that easy. Unfortunately, we are missing the most important thing in life, our little boy.

                Yes, I know people are trying to move on. Look at your children. Look at the love you have for them. Imagine life without them. It is a thought that most people cannot even fathom. I would not wish our pain on anyone. I wish that Hayden was lying on my chest right now. I LOVE our sweet angel.

                The one thing that is keeping us from shutting down is our faith in Christ and each other. I love my husband more than anything. He is the only reason that God ever blessed me with sweet Hayden. We have memories that nobody can compare too. We are continuing to hold on to the power of prayer. We are continuing to visualize our next day with Hayden. It will be the most glorious day in the world. I cannot wait to see him again one day. Someone wrote today saying that Hayden had the prettiest curls in heaven. His hair was that of silk. I can only smile as I visualize this.

                Brent and I went to the beach. We saw hundreds of butterflies. They were flying on the beach. We saw wild sunflowers growing in the sand. We saw a dove in the sunset. All of these things are signs from Hayden. Hayden has been coming in the way of dimes for awhile now with my mother. In the past week, I am finding mysterious dimes in random places. WOW, that is my HAYHAY! Brent is seeing sunflowers throughout the camp as he works from daylight to sunset. It is just all so magical. God is the most amazing person in the world. Heaven is the most spectacular place. I am so thankful to know that our child is no longer suffering. I am so thankful to know that he can walk, talk, run, and is seizure free. We never got to experience the normal. Thankfully, I know that Hayden is now experiencing the normal. This is something that makes me smile.

                Hayden has saved marriages. Hayden has made people get baptized. Hayden has made my husband and me strong believers in the word of Jesus. He was truly a missionary. I am truly proud of his job on Earth. Sadly, as times slow down the weakness begins to occur. The strength seems to disappear. What is next in our lives? What are we supposed to do now? So many questions, so many worries.  I have not slept in weeks. Our bodies are exhausted. Our brains are hurting. We are continuing to remember to JUST BREATHE. Please keep Brent and I in your prayers as each of you begin to celebrate all of the upcoming holidays with friends and family. Hayden was the KING of holidays. I know he will be the KING of Holidays in HEAVEN.

                Lastly, thank you to everyone that has used their own money to make donations in Hayden’s memory. You are saving the lives’ of children from across the State. Batson, St. Jude, and Arkansas Children’s are just a few of the many places where donations have been made for Hayden. YOU are saving the lives’ of many children with this simple gift. We will never be able to thank each of you enough. Our journey is just beginning. We have hundreds of RARE diseases in this world without a cure. For the ones of you that know me and Brent, Hayden gave us his strength. We will continue to support and have HOPE for all the parents fighting similar battles. We are going to FIGHT for the lives of hundreds of kids in the hospitals around the world. We BELIEVE in PRAYER. WE BELIEVE in MIRACLES. WE still have HOPE for HAYDEN. I firmly believe whether home, heaven, or a hospital, God is going to take care of each of his angels. I will forever give my thanks to him for allowing us to be the parents of an angel.