Skip to main content

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. 

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 mothe...

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. 

Here we go again!

Yesterday, our family got to take another trip to the ER. Just a little after 7am, after I had fed Ethan breakfast and gave him his morning medications, he and I came into the living room to play before we had to get ready to leave for school. Ethan had 5 seizures, each lasting 10 to 15 seconds, back to back. Jeff had not yet left for work so I had him get the Diazepam, Ethan's rescue medication, and we gave it to him. The Diazepam is supposed to stop the cluster seizures, but it didn't. The seizures continued and didn't show any signs of stopping so the three of us packed up and headed off to the ER. By the time we arrived at the ER the drowsiness that is a side effect of the Diazepam was very evident, and although Ethan wasn't sleeping, he was definitely out of it. He had another small seizure shortly after we got to the hospital while we were being checked in. Once again his vitals were monitored and blood taken. The doctor spoke on the phone with our neurologist...