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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 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 1st. 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 1st:
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.

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