04/30/2019
I am the President of ZBSN, Pamela Swartzenberg-Freeth. I am introducing myself because this post will show as from a moderator. I haven’t posted for myself in a very long time. I’ve actually been working on this post for a long time. Facebook keeps reminding me that my group needs to hear from me. I respond to other posts often and I’m quick to reply to messages but this post has been hard to finish. We have changed to be more of a support group to Global Foundation of Peroxisomal Disorders, they do a wonderful job of communicating with families, researching for anything that can help our kids and planning meetings that bring the families together. I can find it hard to talk about my experience, it can be healing but also straining. I have to agree to “go there”, that place that has both destroyed and blessed me.
My daughter Olivia would be 15 this July. She only lived 4 1/2 months. A few of us ZS parents found each other in January 2005 and created ZBSN. There was an email list to connect you to other families prior to that. Many of those members are with ZBSN and GFPD to this day. Most of the families from the email list had children with milder forms. I met a couple of people that had Classic ZS like Olivia but it seemed the more severe forms come to find hope but when their child passed away it seemed to get quieter. The group was very helpful nonetheless but we did feel the need to have a place for people that had a more severe form.
For me, finding the email group, was such a blessing. I was desperate for answers, well to be honest, I was desperate for someone to tell me the doctors were wrong. I wanted a miracle. Some children did end up having a much better life expectancy than they were originally told. I wanted that. I wanted more time. I held onto hope that Olivia would survive. She was so severe that the Doctors said she would probably live only a few weeks at most. I guess I did get more than that. I got her for 4 1/2 months.
I feel her loss everyday. She also blessed me and I think I see it more today than ever before. For awhile, after she passed, I felt ruined. I was a ruined soul who had to pull it together for my living family. Now, I realize I’m just changed. You don’t go through this without being changed. Like I said talking about her can be both cathartic and painful. You have to, “agree to go there”, to talk about what you went through when your life was turned upside down.
Zellweger Syndrome steals your joy and your hope and changes your future. But your child will give you a gift and it may be different for each one of you but your child will bless you.
I had a cleaning business for 15 years. I did it for the freedom and the ability to put my son on the bus and be there when he got off the bus. My daughter didn’t have to be in daycare 10 hours. She could go for 6 hours or even come with me. When I became pregnant with Olivia we were not ready for a third child. We were going through so much in our family. We realized if we had another child we would have to move to a better neighborhood and bigger home. We struggled and worked hard picking up extra work so that we could move into a nice house in a nice neighborhood. The house was owned by one of my cleaning customers sons. He rented it to us for a very good price.
Because we moved here I met one of my new neighbors and she later hired me to work in the Affordable Low Income Housing Tax Credit Development business. The people who do this work have masters degrees. I was brought in with a high school diploma and learned on the job. My boss supported my work with ZBSN. I didn’t understand what I was agreeing to when I took the job. I just needed a change. It became a mission for me, along side my ZBSN mission.
Now, almost 15 years later I work with one of the top State Housing Agencies in the Country. I still pinch myself at how I am even here. I know how I’m here... I’m here because of Olivia.
I’ve told her many times, “I’d choose you over this life!!! But thank you for this path you put me on.” It’s hard to be mad when I look at my life now. It was unfair but I was still blessed.
We all wonder, why us? We all have different stories and journeys... but have hope that you will be blessed...even if you can’t feel it right now.
Olivia Danielle Freeth
7/29/04-12/20/04
