Skip to main content

Sunday, May 1st - Great day!

Today we were able to get up and around early enough to get to Bible Study as well as Worship service at church. It was a great morning. During Bible Study we watched a video by Louie Giglio called "Fruitcake & Ice cream" (watch a portion of the video on YouTube.com) it was an amazing illustration of God's grace and love that He extends to each and everyone of us, we just have to be willing to open our hearts and lives to Him. The Worship service was also great. Our minister, Pastor Tracy, has a friend who is working as a missionary in Japan. She spoke to us live via Skype. Pastor Tracy then spoke to us about the importance of not losing the excitement we had last week as we celebrated the Resurrection.

Ethan was very good in the nursery today. He seems to be getting used to being in the nursery on Sunday mornings and Wednesday nights, and I am getting more comfortable with leaving him. We have wonderful nursery workers, and our friend Tammy takes extra special care of our little man. We feel very blessed to know that we can enjoy Bible Study and Worship knowing that Ethan is safe and loved.

When we got home it was time to play and for me to get some pictures of the little man in his "church clothes."



I just love this smile!


Comments

Popular posts from this blog

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mother

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders. Here are just a few of the faces of PBD. 

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened. So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Perox