It’s sometimes hard to be honest as a special needs parent when I’m trying every day to be strong for my children and those around me. Whether you’re close to a special needs family or not, here are a few things hard for me to admit but that I’d like you to know. 1. Sometimes I feel alone. As a special needs parent, isolation is real. Sometimes when things get difficult, many “friends” disappear because the situation is “too hard to watch.” As nice as this sounds, I know I’m being “politely” avoided and removed from the lives of these so-called friends. As a special needs parent, I’m in a unique situation. I know others will not intimately know the details of our child’s diagnosis or abilities, and this can lead to feelings of isolation. This is only exaggerated by other people’s unwillingness to learn. I need true friends who are willing to stick it out when times are tough. 2. I feel left out. I appreciate hearing about your fun overnight stay or family vacatio...
Rare disease day 28Feb2018, I never thought in a million years I would write that phrase. Rare disease, those two words have profound meaning to us now. To be completely honest I never had thought those words. But Jan. 2018 that all changed. Shanna and I were told that our daughter Isabella (Bella) had and extremely rare genetic disorder called ADNP. (See previous post to learn more about ADNP) As we set the appointment to meet with her genetics team to go over these results, I couldn't wait the two weeks to meet the Dr. I set out on my own to find what I could. That's when I met Sandra Sermone, founder of www.adnpkids.com . She was/is a light in this dark tunnel. As I began to study and learn more about ADNP everything about Bella started to make sense, yet we are left many more questions. The day finally came that we would get to talk with the team of doctors that OU Children's has helped put around us. As we walked into the Children's Hospital at 08:30 that ...