About Our Family:
Here is a glimpse in a minute of our day — This just happened. I walk out of the room for a few minutes, literally like 3 minutes, I walk back in to find Mauda~kae seizing and not breathing. After several heart stopping seconds for me, I get her back and have to remind her to BREATH! Sternum rubs and talking in her face and praying. THIS is the reality of Lennox Gastro Syndrome, a rare and dangerous form of epilepsy. THIS is the reality of what can happen when a fetus is prenatally exposed to alcohol. THIS is the reality my precious little girl lives with everyday because of someone’s life choices. The opioid crisis is all we hear about lately. What about this crisis? What about a billion dollars for helping children exposed to alcohol before birth.
Our faith. No matter what we face, we do it prayerfully. Together! My Mauda Kae is such a prayer warrior. I tell everyone who works with her “Jesus is her BFF, she talks to Him many times throughout the day and has real conversations with Him. He is always her “go to Guy” when she’s upset or needs help. I LOVE THAT!
Our health challenges. She has so many physical as well as mental challenges, that all trace back to the in utero alcohol exposure. Alcohol didn’t cause her epilepsy or CP or lung disease, but it weakened her body so that she wasn’t healthy to begin with. I have some health challenges myself, so there are days I can barely function physically. When we don’t have nursing coverage, we’re lucky to just meet the minimal of care needs for her. It gets very overwhelming for us both.
That FASD was given the same attention and media coverage that other health challenges are. People need to realize that it’s just as debilitating as other diseases, yet it’s 100% PREVENTABLE, and 0% CURABLE! We know it’s not a pleasant topic of conversation. Neither is cancer, or autism or addiction.
Remember it’s a BRAIN INJURY and be willing to LEARN new ways to communicate with your loved one with FASD instead of expecting them to learn and adjust to your way of thinking. Stop blaming them for their disability and love them. Be their safe place-ALWAYS! No, it’s not always easy and certainly not always pretty, but it IS ALWAYS WORTH IT!
TAKE A STAND AND JOIN US!
Red Shoe Rock Virtual International Relay is now in it's 4th year. We are excited to share all that we are learning and have learned about nuerodiversity with you.
IF YOU ARE A PERSON WITH FASD, A FRIEND, FAMILY MEMBER or PROFESSIONAL consider joining us for a day of RUNNING around the world with Mackie and Furry.