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Diagnosis Day --- Six Years Later

Six years ago today (August 20, 2010) our lives were forever changed. On that day that our beautiful precious 28 day old son was diagnosed with PBD-ZSD (Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder). It was the day that we learned of a disease that we wish to this day that we never had to find out about.

I know I'm not the person --- the individual, the wife, the mother, the daughter, or the friend that I would have been if Ethan had been healthy. Most days I'm pretty sure I'm not a better person but rather a more bitter person because of the pain and suffering that comes along with a diagnosis like PBD-ZSD.

I have read more about pain and suffering, the will of God, God's sovereignty, the brokenness of the world due to sin, and the trials of life than I think I ever would have otherwise. I do not doubt that God is ultimately in control, but I still hate the saying, "everything happens for a reason," and other cliches, many which are not Biblical at all, like "God won't give you more than you can handle." I fully believe there is a difference between being able to have joy and hope and being happy. I still struggle with discontentment and resentment every single day, because I'm a mom who deep in my heart still wants a miracle for my little boy to be "normal" and "healthy" and I know without a shadow of a doubt that the Lord has the power and ability to heal Ethan, however I have to be "okay" with the fact that Ethan's healing may not occur on Earth. Sometimes I still can't help but wonder and question not only "why Ethan," but "why any child or any family" has to endure so much.

Yet, through it all, there are things I'm thankful for --- I have a husband who has stood by us when so many others don't. I know that we are blessed to have him in our lives. I know that Ethan is loved by his family and many others. There are people who have chosen to love our family and "do live with us" and actively try to "understand" the messiness and hardships that come with this life changing diagnosis. I have met some of the most amazing, bravest, strongest people in this world, although honestly I wish we had never had a reason to meet. I have the honor of serving other families like ours through the Global Foundation for Peroxisomal Disorders and because of the GFPD we have met many of the world's top PBD-ZSD specialists, who know Ethan by name! Over the last six years we have been very fortunate to have amazing doctors, therapists, nurses, teachers, and others who have helped us help Ethan. I have not let PBD-ZSD rob me of my faith, although there are times even now of great struggle and when God feels so far away. I believe in all my heart that God has not abandoned us and that He loves Ethan even more than I can imagine. While I may always have questions about "why" this side of Heaven, I have faith that someday my son will be healed forever and that because of what Jesus did on the cross that I can find peace, rest, and assurance in His promises.

Today, six years after receiving the most devastating news in my life and what I'm pretty sure will be the worst day of my life except once that has yet to occur I pray:

  • I pray for the day in which a family who receives a PBD-ZSD diagnosis is told that there are effective treatment options and/or a cure.
  • I pray that life changing treatment options will be discovered in time to help Ethan.
  • I pray for the doctors and scientists who have dedicated themselves to understanding this disease and are searching for ways to improve the quality of life for individuals with PBD-ZSD.
  • I pray that families impacted by PBD-ZSD who have yet to connect with other parents who "get it" will find the GFPD.
  • I pray for the leadership of the GFPD and every family that is part of the GFPD.
  • I pray for the amazing therapists and teachers who dedicated themselves to working with and helping kids like Ethan.
  • I pray for Jeff and I to have the strength/energy, wisdom, and peace needed to continue being the parents we need to be for Ethan.
  • I pray for Ethan, his health and his development. I pray that he would be happy and most of all know that he is loved.
  • I pray for the two little girls who currently share our home and have already stolen a piece of our hearts, whose stories are yet to unfold. Their presence in our family is obviously bittersweet in so many ways as it is undeniably intertwined with grief (both theirs and ours) but we are so happy that they are here.
  • I pray for the church as a whole to do a better job at recognizing the needs of families who foster and/or adopt and those who are impacted by disability and be the hands and feet of Jesus to these families. 
  • I pray that if there is anyone who reads this that does not yet have a personal relationship with Jesus, that they would come to know Him and the type of peace and hope that only He can provide. 


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