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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 Peroxisomal Disorders (GFPD)

We love our son, but hate the disease that has and continues to steal so much from our son and our family. We are thankful for those who have come alongside our family and who continue to pray for us.

Additionally, for almost two years we have been foster parents to two children who we have come to love as our own, who are in the process of being reunified with their birth parents. 

Due to confidentiality we aren't able to share much about them and the ups and downs of our family of five since they came to live with us in the summer of 2016. However, I will say that Ethan also loves the sisters very much, in his own way, and that we are all going to be devastated when we no longer live together. We really believed that we would be a forever family and although at times I still want to pray for that, I find myself praying more and more for the girls' future, their safety, that they would one day come to know Jesus as their Lord and Savior, that we would still be able to have a relationship with them after they return home and perhaps most importantly for the salvation of their parents. Daily we pray for their family of origin to be radically transformed by the grace, forgiveness, and love of God.

How can you pray for us?
  • Pray for Ethan's health and for better control of his epilepsy and that he would continue to grow and make progress in his communication and mobility.
  • Pray for the discovery of effective treatments and ultimately a cure for peroxisomal disorders and for all of the medical professionals and scientists who are dedicated to finding ways to improve the quality of life of our kids.
  • Pray for other families like ours -- families impacted by rare disorders, disability, those in the trenches of fostering and/or adopting, families loving children from hard places, families who are grieving (for any number of reasons).
  • Pray for the children who are in foster care and for their birth families. Pray that children would not be stuck in the system one day longer than truly necessary, that children would find permanency in either loving adoptive homes or back with birth families in situations that have been radically transformed and are now healthy and safe for them. 
  • Pray for Jeff and I. Pray that we will seek God's will for our lives and our family and be the parents that all three of our current children need us to be, each day that they are with us. Pray that we would understand and see what God's plan is as we continue to desire to add to our family, even if ultimately that doesn't mean we get to adopt "our girls." 


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#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

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.