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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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A Family of 3 Once Again....

Jason Johnson is a writer of a blog and several books about fostering and adoption. One of his recent posts "Foster Care, Adoption, and Saying Yes to the Unknown" is a powerful and insightful look into the life of a foster parent. I'll be the first one to admit that when we said "YES" to two little girls who needed a family that we never thought that I'd be writing about the girls return to their biological parents. However, a little over a week ago our two foster daughters moved back in with their mom and dad.

"Saying Goodbye To The Foster Care Child I Fell In Love With," isn't exactly like our story, but there are a lot of similarities, and gives you a bit of a look into what we have experienced and are now experiencing. We are heartbroken and grieving. We miss them so very much, be we also know that they are loved and that they are happy. This summer as we prepared for this we spoke openly and often about the fact that you can be both happy…

Back to School Time!

It's that time again to head back to school! Ethan loves school, which is great. We know that we are extremely blessed to have a great team of professionals who work with him daily. When we first received the PBD-ZSD diagnosis I couldn't even imagine that Ethan would live long enough to go to preschool, let alone make it to elementary school. Even as I write this I can't help but think of all of my friends who aren't able to share first day of school pictures. "Dear Kindergarten Teacher: My son will be absent on the first day of school" is a beautiful tribute to bereaved parents everywhere. 
As school starts this year we are also thinking about and praying for our former foster daughters who are now back home with their biological parents. Driving by the bus stop, instead of walking down there with three children in tow, like I did the previous two school years, on the first day was a bit emotional. Since we don't live in the same town, that means the gi…