This spring has been rough, especially when it comes to Ethan's seizures, but I'll be writing more about that in another post. On Friday I had the rare opportunity to spend several hours with another PBD-ZSD mom and I am so thankful for the time we had together, but my heart was also heavy because there are so many other women who I wish could have been with us. Tonight our family enjoyed the beautiful weather at a local park with friends from our small group. One particular conversation from Friday and the events of this evening have me reflecting on perpetual grief and the fact that not a day goes by that I am not mourning in one way or another. I know that I'm not the only one who has these feelings. Numerous blogs and books have been written about the mourning and grief that accompanies having a child with special needs and/or medical complexities; " How to Cope with Recurring Grief ," " The Unique Grief of Special Needs Parents ," and " The P...
Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey.