No need for medications in Heaven

I would like to start this blog by saying that if you have a child with ASLD please send me an email at lauren122885@hotmail.com. I noticed on a blog a few weeks ago that somebody just had a child diagnosed with it but I could not figure out how to email you from the response.  My husband and I would love to talk, give advice, help, or do anything for children like Hayden.

It has been nearly three weeks. Hayden would have turned 15 months on Saturday. It was a bittersweet day full of emotions. We went to the cemetery to see gifts galore. He received cards, a bird house, sunflowers, hope stone, a guardian angel, a Peter’s angel, a jar of sand and sunshine, wind chimes, a hope Pandora charm, a wooden moose, and a vase of fresh flowers. I have to tell you my husband and I just said WOW! Sweet Hayden has more visitors at the grave than I could have ever imagined. A sweet soul that could say zero words yet impact thousands of lives. I must admit that we are proud to call him our son.

Hayden is 19 days seizure free. It has been nearly a year since I have been able to say this. Brent and I are taking it a day at a time. Some days are better than others. Luckily, we have each other. We just simply giggle as we talk about the past 15 months. You see, Brent and I have a bond like nobody else. Nobody will ever understand exactly what we have been through. Only a few of the 1000’s of people that “think” they understand truly do. We are riding the craziest, most insane, yet the most rewarding rollercoaster in the world. Well, to celebrate Hayden being seizure free I decided to throw away all of his medication. Hayden received medicine three times daily. All of these were part of our life and routine. I still wake up and catch myself trying to go fix meds. Fixing medicines was a process and routine. I did not mind. I did not complain. I would do anything to fix the medication just one more time. Unfortunately, the picture below is just a reminder of how sick Hayden was. Hayden was a perfect, sweet, and innocent Earth Angel. Hayden deserved only the best. It makes me smile to know that he no longer needs all of these medications to feel good. He can walk, crawl, giggle, and talk. He is WELL and HEALED. Hayden is SEIZURE FREE without the help of medicines. Yes, these are the only reminders that are getting us through the bad days.

“Do not let your hearts be troubled. Trust in God; trust also in me. In my Father’s house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.” John 14:1-3

“There’s no greater gift than to have loved and be loved unconditionally. And there’s no greater pain than to let go of the one who was loved so completely. What is love without pain? Is there such a thing?”

2 weeks

Well, yes I know that it has been awhile since I blogged. How are we?  I know that this is the main question each of you are asking in your mind. Well let me figure out the easiest way to answer this. In the past 14 months, we learned to grow up a tremendous amount. Well, in the past 2 weeks, we have learned to grow up a substantial amount. Would we trade this journey with anyone? Absolutely not. We loved each and every moment of our walk with an Earth Angel!

The past two weeks have been like a rollercoaster. We have had good moments followed by bad moments. We have tried living a normal life. We have been surrounding ourselves around caring friends. Our friends that truly care are still walking this journey with us. We have been surrounded by a substantial amount of love and support.

Today marks two weeks seizure free. Yes, this is bittersweet. We are so thankful for the love Hayden brought into our family. We might not have a baby sitting in the backseat of our Acadia anymore but in our hearts he will always be there! We are so thankful that Hayden is pain free. I feel like every Wednesday and Thursday will be difficult. You see we have to think about the last journey to Batson! Yes, Hayden passed into the Heavens peacefully. No, it was not a joy to turn our little boy loose. I do understand that God is Hayden’s number one. The hardest part is letting go.

I can not begin to imagine this journey without our family and friends. I called each and every day of Hayden’s life to our family members first thing in the morning. I would let them know how Hayden was doing. I would send videos. Yes, this was part of our Hayden journey. I am so thankful that my mommy has continued this journey. She calls each of us every morning. She checks on us. She is making sure we are busy. Hayden was always her top priority and now we are. You see this is awesome because it shows the family love. Our friends have shared stories about Hayden. One friend even dreamed about being on the beach talking to him only hours before Hayden’s passing. You see, so many people are caring about us as we travel through the grieving process. I have learned to only worry about the ones that care. I have learned to continue to carry on Hayden’s legacy. I cannot begin to tell you the amount of strangers that send messages daily of encouragement! I mean we are so BLESSED! WE are so THANKFUL!

 I would not trade our life with the world. We are so thankful that God chose us to travel this journey. Hayden is flying high looking over us. We will visit the cemetery daily. We love all the gifts that have been placed out there. We love that our friends have sent in donations to Batson. We are thankful for the calls, messages, and encouragement. Some days are goods. Some days are terrible. We are thankful for the friends that choose to sit by our side on the good and bad days with complete understanding.

I have a special Hayden reminder on my wrist 24-7. You see have you ever heard me talk about Blair Batson? Yes, I know the answer is YES! They ROCK our world. You see so many people at Batson have hearts of Gold. Does this mean just Doctors? NO! All the staff of Batson. I formed a special relationship with a Child Life coordinator named Amanda. She has a heart overflowing with Gold. She has a child named Hayden. On many occasions, we would swap Hayden stories. The day of Hayden’s funeral was another day for Amanda encouragement. She showed up with her awesome, loving, positive, and caring attitude. She handed me her Hayden bracelet off of her wrist. She informed me that she wanted me to have it. I generously took it. Every time, I look at my “Hayden” bracelet, I think about my Earth Angel, the loving staff of Batson, and the sick kids all over the world. I am so thankful for people like Amanda in our life. They are the ones that loved Hayden for who he was. She loved Hayden for his achievements. She loved us for our decisions. She is another reason why Blair Batson rocks!

We are nowhere near the end of the grieving process. Each day is hurting more and more. We are sad. We are hurting. We are continuing to thank God for the 14 months with Hayden. We are grieving as month 15 approaches. We lived life with no regrets. WE lived life making each moment special. I am so thankful for the path we chose. I know that the rollercoaster will continue. Thank you for your faithful words of love and encouragement as we are at the beginning of a long recovery process.

HOPE FOR HAYDEN is now complete as he is walking, dancing, and hitting home runs out of the park! Thank you GOD for COMPLETE HEALING!

The last of the service notes:

Today we celebrate the life of Hayden Brent Casavechia.  Hayden was born June 1, 2011 and went home to the Lord on August 16, 2012.

Hayden is survived by his parents Brent & Lauren Casevechia.  Grandparents Paul & Donna Steinle, Bobby & Angie Casavechia.  Great Grandparents: Wendell & Patricia Mitchell

Great Grandmother:  Lela Myrtle Watkins and husband Jack

Uncles: Jacob and Andrew Steinle

Aunt and Uncle: Robby and Megan Casavechia and their son Vincenzo  And a host of extended family.

A Life of HOPE

Not too long ago I got this blue bracelet.  I am so glad I did.  If you are wearing a bracelet or have one, please raise your hand.  Like many of you here today I knew this family, heard about the disease, followed updates on the internet.

Now, we are all part of Team Hayden, each one here.  But personally, when I got this bracelet I was reminded so often of being on Team Hayden. Being part of Team Hayden is important, because we all had a role.  We all played a role by sending a message, giving a call, telling his story, stopping by to make a visit, praying consistently. 

Somewhere along the way something unique took place. Hayden's story became part of our story!  Our story as a community, our story as a church, our story of HOPE.

We'd see this bracelet each morning and say a prayer.  We'd log on to check Facebook and see this bracelet.  I wore this bracelet to the SBC in New Orleans and shared the story with my friends there.  I wore this bracelet to El Salvador on a mission trip and remembered to pray for Hayden there.  Many of you have a similar experience.  You've worn your bracelet to many places, shared it with many people, remembered to pray at specific times.  You and I joined in this story of Hope; Hope for Hayden.  

Hope is a definitive characteristic of this life.  When we cannot grasp the circumstances of we face, we can cling to hope.  

 

So today, as Hayden is sitting in the lap of Jesus, we have all been impacted by his life of Hope.  He taught us to hope for another day, hope for another week, hope for another month, hope for a year of life.  We can celebrate the life of Hayden Brent Cassevechia because his story became our story and through this we learned more about what hope really means.

Today, I am proud to be a part of Team Hayden along with each one of you here.  I am also proud to celebrate his life with you today.  Because through Hayden we all understand more about Hope.

Well, I must admit I am so thankful that a friend took the pictures of the balloon releasing at Hayden’s burial. We had half for my family, half for his family, and 14 balloons (representing the 14 months) plus one that was only half blown up with the words Hayden written on it. It was raining. Remembering, what if Blessings come through rain drops? One of Hayden’s many signs that he was extra close to us during this celebration of his life. The balloons were not too successful until I look at the following pictures. The only one that shot directly into the heavens was the one that had Hayden’s name on it. I believe this is another sign of his presence. As Brent and I released our balloons, we giggled as the “Hayden” balloon flew high into the sky. Whereas, the other 14 went straight into the tree above his grave. See this is another Hayden sign, I believe he was watching over us for the first few visits to the cemetery. HMMM… I LOVE MY LITTLE BOY!  

Oh and I do not think that I have ever mentioned how thankful I am for the conversations with new friends I have made. The friends that are mothers of angels with wings. They are the only type of people that truly understand. I am so thankful for the ability to have somebody truly understand what it is like. Life goes on for everyone else. Mothers and Fathers of angels have a bond that nobody can imagine. We actually know how it feels to grieve from being a parent with a kid in the car seat etc to being a “newlywed” again. I am so thankful for each of you awesome FRIENDS! Your words have kept us going!

Funeral Notes for the People that have asked:)

Well, I have been trying to decide in what ways that I would continue our blog. I have decided to continue it in the most powerful and positive ways possible. I know many mothers of Leukodystrophy families follow our blog daily. I hope that when God calls other children home, our blog will give the strength and courage to not be angry with God. I hope it will give them the ability to realize how blessed we are! After all, how many people are blessed with an Earth Angel? I had many friends remind me that last week was the first time I’ve let negativity bother me. I am proud to say that this is part of the grieving process. I am also proud to say that I will no longer allow the devil to get in the way of my HOPE for Hayden. The blessed loving group of friends and family care so much are all that matter. God is giving us so many signs of Hayden. I cannot wait to begin sharing our new journey with each of you!

I have had so many text messages from friends and family that were not able to attend Hayden’s service. We had a song wrote for Hayden. I will try to figure out how to upload it plus the slideshow soon. For today, I am going to share our preacher’s notes from the funeral. Hayden’s funeral was spoke truly from the heart. Brother James Nichols and Guy Burke made it the best and most beautiful ceremony ever. I have heard this over and over.

We began the service with Blessings by Laura Story. Bailey sang it so beautifully. I promise she actually sounded like Laura Story herself.

Hayden’s Aunt Meg, my sister in law spoke a poem without tears about our love for Hayden.

Opening Poem:

You never said you’re leaving

You never said goodbye

You were gone before I knew it

And only God knows why.

A million times I needed you

A million times I cried

If love alone could have saved you

You never would have died

In life I loved you dearly

In death I love you still

In my heart you hold a place

That nobody could ever fill.

It broke my heart to lose you

But you didn’t go alone

For part of me went with you

The day God took you home.

Message:

Today is filled with a hundred questions. Some of these questions have obvious answers. Others are mysteries beyond our understanding. Questions like:

-Why do bad things happen to good people?

-Why did God allow Hayden to be born sick?

-Why did God take him to heaven so young?

-Did I do enough to help him while he was alive?

-Did his life impact others as much as it impacted mine?

I may not know the answers to all of these questions, but I can answer the questions regarding Hayden’s impact on others. Lauren, his mother, shared with me that although Hayden never spoke or walked, that he touched lives all over the world. He received words of courage and encouragement from: All 50 states, Canada, United Kingdom, New Zealand, Japan, Russia, Australia, Germany, France, The Philippines, India, Italy, and Zimbabwe

And in addition to these, Hayden had over 75, 000 viewers of his blog. That’s what I call impact! It was this kind of impact that made Hayden a missionary of sorts, whose reach went far beyond his home in Greenville and far beyond the family that loved him so dearly.

And while he could do very little for himself, Hayden actually “did more” in 14 months, than some people do in their whole lifetimes. Did you know that Hayden… was dedicated to the Lord her in FBC. He met celebrities. He received a letter from Laura Story, song writer of the song Blessings which Bailey sang in the service. He experienced over 10 trips to the beach. The beach had a calming effect on him. With his mommy’s help, he did countless arts and crafts. He had a mama and daddy that loved him more than they love their own life.

Hayden was a very lucky and blessed little boy. And today, his blessings continue because today he is not bound by sickness. Today he can hold his head straight. He can walk the streets of gold. He can talk to the Lord. He can laugh and smile.

About that place called Heaven, here’s what the Bible has to say about it:

“And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away (Revelations 21:4)

So you see, Hayden is alright. In fact, he is better than alright. It’s not he that hurts and suffers and grieves. Those are feelings of a fallen world. A world filled with sickness and pain. A world filled with disappoints, crushed dreams, and dashed hopes.

This is our world. Lauren, Brent, family, this is your world. It’s your life right now.

You guys have spent the past 14 months centering you life around Hayden--- His wants, his needs, his everything. And now that Hayden is gone, what do you do?

After Nathan had gone home, the LORD struck the child that Uriah’s wife had borne to David, and he became ill. David pleaded with God for the child. He fasted and went into his house and spent the nights lying on the ground. The elders of his household stood beside him to get him up from the ground, but he refused, and he would not eat any food with them. ON the seventh day the child died. David’s servants were afraid to tell him that the child was dead, for they thought, “While the child was still living, we spoke to David but he would not listen to us. How can we tell him the child is dead? He may do something desperate. David noticed that his servants were whispering among themselves and he realized the child was dead. “Is the child dead?” he asked. “Yes,” they replied. Then David got up from the ground. After he had washed, put on lotions, and changed his clothes, he went into the house of the Lord and worshipped. Then he went to his own house, and at his request they served him food, and he ate. His servants asked him. Why are you acting this way? While the child was alive, you fasted and wept, but now that the child is dead, you get up and eat! He answered “While the child was alive, I fasted and wept. I thought who knows? The LORD may be gracious to me and let the child live. But now that he is dead, why should I fast? Can I bring him back again? I will go to him, but he will not return to me.”

There are three things this passage teaches us:

1.       When our children are sick, we are to do everything we can for them: Lauren and Brent, you guys did everything possible for Hayden. You gave him more of a life than any of us could have imagined possible. You sought out the best medical care for him. Don’t ever question whether you guys did enough for Hayden. You guys did all you could, and then some, for him!

2.       In the midst of hardship and sorrow, run to the Lord and rest in the Lord: King David fasted and prayed for his child. These are both biblical terms that tell us David was running to the Lord for help and trusting in the Lords plan. I know for a fact that you guys prayed for Hayden. And as you have poured out your hearts to the Lord, he has heard you. I know that these past 14 months have been a time of personal spiritual growth as you’ve run to the Lord for help, comfort, wisdom, strength, and peace. Don’t let this be the end of that growth. Over the next many months, your relationship and trust in the Lord are going to be vitally important. So run the Lord in your sorrow and anger and disappointment.

3.       As horrible and as painful as losing a child is, you have to keep on living: Notice that David didn’t crawl in a hole and hid from the world. Now that Hayden is with the Lord, You guys have to go on living. I’m not saying you have to forget him, because you won’t. You will never forget him. But your life shouldn’t stop because Hayden is gone. Hayden would not want that. And the Lord doesn’t want that. So in the weeks ahead, after the dust has settled and the pain has softened some, it will be time to begin the routine of life again. It will feel strange at first and you’ll even feel a little guilty. But that last thing Hayden would want is for his death to derail your life. Blessings don’t derail our life. Blessings make them better. And Hayden was a blessing to us all. So keep on living… for his sake.

To our friends and family:

We cannot thank each of you enough. You have not just “forgotten” about us in the past 14 months. You have been a part of each of Hayden’s blessings and memories. We are thankful that so many people cared and loved our Earth Angel. We know he has changed our entire group of friends. Hayden loves each of you. The memories are everlasting in our hearts.

To Blair Batson:

Our words would never be enough. To Dr. Boyte’s Palliative care team, you have hearts of gold. You always encouraged us and gave us the hope we needed to keep on going. Jodee, for allowing his death to be calming and peaceful. For leaving your family to stay with us throughout the night. All the nurses of 2c for being a friend, a fighter, a comforter, and a care taker. I respect each of you and your jobs. I know you must have the largest hearts in the world. I thank you for this. To the child life team, we loved the hugs, teddy bears, and the list goes on. To Katy and the Speech team, for helping us learn how to use different feeding methods. Thanks to you, he is in heaven a healthy chubby 30lb baby. To Dr. Davis and neurology, for never giving up hope and for always trying new medicines for our angel. When your jobs get tough, remember you are impacting lives in ways that you could never imagine. I know often parents think that it is the “nurse and doctors” faults that they are destating etc. NO NO NO! Yall are the ones doing everything possible to give our children the best quality of care in the world. I cannot thank you enough for EVERYTHING YOU DID! Miracles happen at Batson because of each of you! We will always support 2c and Palliative care!

One week of an Empty Home

Well, Well, Well it has been a week since the last time I fed Hayden and gave him his meds. 9:00 is a very important hour of bonding between us. It is a full moment of being busy with meds, feeds, tube cleaning, singing, suctioning, and the list goes on. This was also the hour of the morning phone calls to all the ones that dearly loved him. They would get worried if I did not call by 10. All these are missing voids in our life at the very moment.  

                I believe we are coping well with the fact that Hayden is giggling, smiling, running, and talking. He keeps telling me, “Just Breathe Mommy Breathe.” I went to his grave twice yesterday. Once, I wanted to go just alone. I cried out to him about my feelings. I cried out to him about how crushed I was. In the meantime, two friends pulled up and encouraged me through my mental breakdown. One friend is a friend I see weekly. The other is an example of true friends that you just don’t see that often. She called and texted all the time even though she was “not good with words” and has dealed with her on sadness. He woke me up in a dream last night. He said do not worry about your feelings mommy. Your friends need you to give them big ole’ hugs from me. He said the fortunate knew and loved me. They are more blessed than the richest man in the world. He said don’t dare worry about the least fortunate and naive. They are less blessed than a person that is homeless. He said mommy and daddy, I love you so much. I pictured him on Earth. He was crying and in pain. He was seizing. I woke up with a smile on my face. I love my little buddy in Heaven that is near one week seizure free!

                We have received over a 1,000 facebook and text messages this week. I have not responded as it is not possible to respond to this many messages. For the people, that  wrote letters and said your not good with words. This made me smile to know how much you care. For the friends that have been “babysitting” us, you’re our world. For the moms that have experienced death, yes you are the only ones that can relate. I must say Hayden was so delicate. He had so many precious years ahead of him. I have to admit he had the prettiest lips in the world.  We love our friends and family so much. Hayden had more people in his life that loved his little body than would ever love us in a lifetime.

                I cannot imagine the people that will be saved in Jesus’ name because of Hayden’s great testimony. If you are one, I would love to know. Hayden’s legacy is just beginning. We will be doing something in February for Rare Disease Day. I know it is a great excuse to get to wear jeans to workJ we will be having a huge fundraiser, dance, meal, and silent auction for Batson. Girlfriends of mine, we are going to paint a mural for the halls of Batson. It is okay, I cannot paint either. I promise you Hayden will watch and lead us through this. Washington School will be selling wristbands that say HOPE for a football game. All the proceeds will go the Hayden’s third home.

                Please pray for us today. No more feeds. No more meds. No more baths. No more kisses. It is all gone until we meet again. It is just the hardest thing to cope with in the world. I hope that nobody I know ever has to face these difficult challenges in the world. I hope that each of you have the ability to be reminded of how precious life is. I hope you continue to keep all the sick kids in your prayers. The children’s hospitals are full of sick kids. Yes, you think it’s bad because it’s a Monday which means a full week of work. You could be holding your child’s hand as they scream while nurses look for that perfect vein. This is the only thing holding me together. The fact that Hayden is no longer needing deep suctioning, oxygen, CPAP, needles, vein finders, ultrasound machine, chest compression, meds, feeding tubes, fundo and gtube surgeries, eeg, ekg,monitors, spinals and the list continues. NO MORE NO MORE! He is running and playing. I thank God each day for such a precious blessing. If you are in the less fortunate group and never had the ability to follow his story from the beginning, I encourage you to do so. You will see how awesome, blessed, beautiful, and amazing he was. If Hayden’s story doesn’t change your life for ever, I will be highly surprised.  Nothing can ever change our LOVE for our baby boy.

                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.