Skip to main content

Reality - Part 2

So, I guess it was pretty obvious that Friday was a tough day. I have those from time to time, I think we all do.

Friday afternoon Ethan had his one year pictures taken and he did amazing! It seems like it has been months since he smiled for the professional pictures. He did so well it was really hard to pick which pictures NOT to get. LOL :) I can't wait for them to come in!

Today we spent the whole day together as a family. We ran errands in the afternoon - bank, the mall, Panera Bread for lunch, and then to Target before heading home. Ethan even sat in the shopping cart at Target like a "big boy." This is a very new thing for us - and while I still won't try putting him in the shopping cart if it is just him and I (if we have to run into a store just the two of us I always take the stroller) we are trying to do this when Jeff and I are together. Overall, I think Ethan enjoyes the new perspective, but since we have to make sure to put the belt around his chest instead of his waist, otherwise he'd topple forward, I'm not ready to do it when it is just me.

Being that today has been a better day, and almost "normal" day, I thought I'd write more about the "reality" I live in....

1. God is good all the time, and all the time God is good! I know and trust that Jesus loves Ethan even more than we do. That He has a plan for Ethan and for us.

2. Ethan is going to be 13 months old in a matter of days. A year ago we didn't know if we'd make it to six months. I am blessed to be able to hold and hug and kiss my little boy. While only the Lord knows the exact plans He has, as of today Ethan is overall medically stable and doing very well in light of his diagnosis. Ethan can roll like crazy and he enjoys playing with toys and interacting with people. He can sit without support and usually doesn't have to much trouble eating (pureed baby food) or taking his bottle.

3. I have an amazing husband who loves the Lord, loves me, and loves Ethan. Jeff works hard and helps at home. I am very blessed that I am able to stay home with Ethan. I can't imagine not being able to be here with him every day.

4. I have a whole new "family" that I would have never known if it wasn't for this diagnosis. My fellow PBD parents are amazing people. Some have kids in heaven already and others have little ones still fighting PBD but regardless of where along this journey someone is, this family is there for each other. I also have found a calling -- as the Family Registry and Support Group Coordinator for the GFPD --- I can help other families who are facing this diagnosis not feel so alone. Remember, PBDs are more than twice as rare as Cystic Fibrosis.

Here is my reality....

I never knew I could love anyone so much until I became a MOM!

Prayer Requests
  • Please pray for peace and comfort for all families impacted by PBDs. Pray that those who do know know Jesus as their personal Savior and Lord would open their hearts and minds to Him.
  • Pray for treatments and a cure! Pray that the doctors, researchers and therapists would be able to find new and better ways to help our children and increase their quality of life.
  • Pray for miracles! They happen! Pray that Ethan will grow and develop that he will stay healthy. Pray that he will learn to crawl, and walk, and talk. Pray that he will be healthy, strong and happy.
  • Pray that I will have more good days than tough days, and that I will be able to always seek the Lord and not ask why, but "How will you be glorified?"
  • Pray that our family and other families that are believers would be a witness to others about the hope that we have in Jesus Christ.


  1. That's an awfully cute little reality you have there! Thanks for sharing your joys and your struggles-we all have them and it makes us feel more connected when others are willing to share.


Post a Comment

Popular posts from this blog

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 Peroxiso…

#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.