Our ASLD Angel

Monday, June 3, 2013

Birthday Celebration for Our Angel in Heaven

I can only smile and cry as I reflect on this past weekend. Is this a dream? When am I going to wake up from this dreaded dream? Why would this be happening to us? Unfortunately, we are not in a dream. Selfishly, I should be ashamed of myself for ever thinking that we were not worthy of having something so bad happen to our family. The truth is our life was perfect. Our life with Hayden was not bad. Instead, it was magical. I almost feel ashamed for wishing the thought of wanting a healthy child. Just because Hayden was unhealthy, he was perfect. We will always WISH he was healthy because we want to have our little boy. We were blessed with an angel. We were given the opportunity to be parents to a missionary. We learned so much from Hayden. We were a strong team! Brent and I are still a pretty good team. Hayden leads all of our decisions in life. We had a hard yet great weekend. The reason for this was our amazing group of supporters. I cannot begin to tell you how many messages that we received this weekend. You are the reason for our HOPE!

We started our birthday weekend out by going to the dance recital. The theme was sunshine and beaches. All the dances were uplifting and sweet. Our hearts were overflowing with joy and happiness. The kids danced to “YOU ARE MY SUNSHINE.” We were surprised with tons of flowers at the end. These special moments made us grateful for all of our amazing friends in the community of Greenville. We have been given more love than we could ever deserve.

Following the dance recital, we had family/friends over to our house to release 12 lanterns and eat pizza. Well Hayden decided to make his presence through raindrops and a LIGHTENING SHOW that was much brighter than the lanterns! All we could do was laugh.

Yesterday, we had a birthday celebration. We did all of Hayden’s favorite things. We painted a canvas with our personal artist, Whitney. The guys even painted! She is going to do some final touches before framing it for the hospital. Hayden’s creativity will be forever placed into his second home. The kids had a blast! We ate a delicious cake by our friends at The Sweetery! The kids loved the sunflowers floating in the ocean on the cake. We swam and even let yellow lanterns go over the lake. It was a perfect day with family and friends. All in all without our family/friends, we would have not made it through this weekend. We are blessed. We are thankful. We are loved!

The sweet dance recital suprise warmed our heart........

the dozens of flowers and balloons made us smile......

the yummy cake made by our friends was perfect......

the cake explains his peace in Heaven......

we started from scratch......

we had a memory book of all his favorite days with his loved ones from 12 to 14.5 months....

we smiled and watched these talented girls dance to upbeat music.....

we ate cake as we imagined Hayden eating cake for the first time in Heaven......

we painted with HOPE for the kids in Mississippi's Children's Hospital......

we laughed and giggled.......

we shared memories of Hayden's crafts......

his best little girl friends painted the flower........

we thought about the good times at the lake house.....

Nona and Nana worked hard......

even the guys helped paint.....

they were neater than the girls......

it was coming together perfectly......

Hayden's friend cut the cake.....

the children did arts and crafts.....

we finished our first coat of the painting.....

We hope the painting makes the kids smile......

a great group of men......

our family is missing our angel in Heaven.....

Yellow Lanterns for our amazing son...

they were beautiful.....

true friends are there for each other on the good and the bad days.....

fly high to the Heaven above....

a few crashed......silly Hayden likes to make us laugh.....

a perfect happy from a sweet friend.....

nightime lanterns shined bright in the sky......

HOPE and PEACE and PROMISES to never give up.......

Thank you so much to all of our blog followers. Your prayers are felt each and every day. We still hurt 10 months later. We will forever remember Hayden. He will forever be our first born child. He will always keep us motivated to help others. It is so hard to blog now. It use to be so easy. You all know the story from start to finish. We will keep the blog open for families that need motivation and courage. We will continue to use this blog to share fundraisers and exciting Hayden moments with you. We love our journey with Hayden. Please send anyone that needs to talk our email address, lauren122885@hotmail.com. We have met many new friends that are going through the same thing. God has placed us on Earth to help others. We enjoy hearing other stories. We have so MUCH HOPE for the suffering. We will continue to pray for cures and miracles. May God Bless Each of You. Look for another blog in the later part of June.

With Love, Lauren and Brent Casavechia

Friday, May 3, 2013

I am so blessed that my blog has come in contact with so many people. Since January, we have 98,742 views from countries across the world. Yesterday, I was contacted by UMMC on an upcoming article about blogs. I must admit it warms my heart that my blog has touched 100’s of thousands across the world. What I do know is that my blog is not being seen because people know me. I am nothing more than a small town girl that has lived a wild and crazy life. I am asking again to become in contact with others suffering from ASLD. I understand that there is no cure. I understand it is one of the rarest diseases in the world. As I look at my statistics, I notice just this month alone 27 different people have viewed my blog from Germany. This makes me feel as if another family is seeking answers. I might not have the answers but would love to communicate. I would love to share how we made each day count in Hayden’s life instead of focusing on the statistics. Also, we have received multiple views from China, Canada, Turkey, France, Ukraine, Belarus, United Kingdom, and Malaysia. If you are from another country and reading this blog, I would love to know what brought you to our website. I would love to offer you encouragement as Jolene from Canada did for us. I have come in contact with a sweet family from Australia. We live across the world, yet we still communicate on Facebook. I remember starting my blog because nothing would pull up on ASLD. I remember thinking is there really on 50 cases worldwide since 1980? There might be more cases in the world that we just do not know about. My email address is lauren122885@hotmail.com and I HOPE to hear from you.

All in all life is going really good. We have been swamped with different activities in the past month. We are looking forward to going to Hayden’s happy place this summer. We have many milestones to face in the next few weeks. I know Mother’s Day and Hayden’s birthday will be very difficult. I do know that our close family and amazing friends will help us celebrate the happy moments. We will not mourn June 1^st. Instead, we will celebrate. Hayden will be eating birthday cake with Jesus. We will do all the things that Hayden loved on his birthday weekend. We will do this with huge smiles on our faces. We will not mourn Mother’s Day. Instead, we will be thankful that we had the opportunity to dedicate him into our church last Mother’s Day. We will continue to give thanks to God for trusting us with an Angel. We will always feel the presence of angels on both good and bad days.

I would like to fast forward to my devotion for JUNE 1^st:

I am involved in each moment of your life. I have carefully mapped out every inch of your journey through this day, even though much of it may feel haphazard. Because the world is in a fallen condition, things always seem to be unraveling around the edges. Expect to find trouble in this day. At the same time, trust that MY WAY IS PERFECT EVEN IN THE MIDST OF such messy imperfection.

Stay conscious of ME as you go through this day, remembering that I never leave your side. Let the Holy Spirit guide you step by step, protecting you from unnecessary trials and equipping you to get through whatever must be endured. As you trudge through the sludge of this fallen world, keep your mind in heavenly places with Me. Thus the Light of My Presence shines on you, giving you Peace and Joy that circumstances cannot touch.

As for God, his way is perfect; the word of the LORD is flawless. He is a shield for all who take refuge in him. PSALM 18:30

“For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear, I will help you.” ISAIAH 41:13

I firmly believe that this devotion is written directly for Brent and I. It is “ADMITTING” that life is not always perfect. It is also reminding us that the decisions in which the LORD makes are flawless and perfect. We must trust God’s decision in picking us to be the parents to an angel. We must understand that with patience good things will come our way.

I have HOPE that each Mother will do “arts and crafts” with their children this Mother’s Day. It will be something that will forever touch your heart!

Below is the most fitting photograph from Christian Beach in Australia. My sweet friend Abby has been on a waiting list since Hayden passed away. Carlie Marie is a photographer who is inspired to help parents heal as she lost a son too. She just recently did her 17,000th photograph of babies that have passed away. I cannot think of a more fitting picture.

Monday, March 25, 2013

Delta Angels run for Batson's Palliative Care

Believing in Miracles......

Brent and I are overwhelmed with joy and excitement as we reflect on this past weekend. Hayden was one of many DELTA ANGELS that was represented in the Color Me Rad 5k. My husband and I have a huge part of our heart in Jackson, MS. I firmly believe that every Children’s Hospital is truly amazing. I believe Hayden lived a longer and amazing quality of life because of the people at Batson. Many people never expected him to live a year. We on the other hand kept HOPE for longer. We received a long and wonderful 14.5 months because of the people at Batson. I am so thankful for the HOPE that 2c nurses and Palliative Care gave us.

My sweet friend Jordan James contacted me in October about the race. We had HOPE that a few people would join us in supporting the Palliative Care team. The team exploded with many angels in heaven and on Earth having huge support groups. We were in tears of excitement as the team grew into 3 different time brackets. We were amazed at the support the Delta was giving. The race gave us the opportunity to have fun with family and friends. Our team eventually sold out and became one of the largest Color Me Rad teams ever!

Palliative Care is the reason for our love, strength, and encouragement. This group of individuals gave us the opportunity to stay positive. We love the fact that the Delta Angels T-shirts along with the WS Drill Team and a Church donation allowed us to receive over 5,300 dollars to donate to this great group of individuals. The palliative care team is vital to families like ours. We firmly believe in loving, encouraging, and supporting them as they grow to be a huge team for Mississippi. If you are reading this and have not voted for them to win a 10,000 dollar grant, I would love you to do so by following the directions on the picture below. They deserve this more than anybody I know.

www.vote.livestrong.org click on Mississippi region then Advanced Certification for Batson Palliative Care.

From the bottom of our hearts, we cannot thank each of you enough for your love and participation in this past weekend. I truly felt as if it was the first time since Hayden’s death that we had fun and laughed all happy smiles without tears while doing something in his memory. We had the best time with our prayer warriors, family, and friends. We cannot wait to continue this tradition of getting COLOR BOMBED FOR MANY YEARS AHEAD. The Delta Angels will be BACK in 2014 with only one small change. Our team captain will be getting married so our password will be changing to TROTTER. I am so thankful for the dedication of a friend that worked many hours to make this possible. Thank you so much Jordan, Charla and your family and friends from Belzoni. You are truly amazing people. I hope you enjoy the pictures below!

Even the guys had a blast.......