The truth is that none of us know how long we will be here. We aren't supposed to know. How could we grow and learn if we were constantly checking our watch for "our time"? This would sway our decisions, possibly put ourselves in reckless situations, or cause us not to live to our potential … Continue reading Make Memories for a Lifetime
Cousins are Forever Friends
There is nothing better than having friends who are also family. When you are differently-able, having what would be considered traditional friendships can be very difficult. Pheonix relied on his parents and care takers for all of his mobility and health needs. Other than walking in an adapted walker, he could not be somewhere without … Continue reading Cousins are Forever Friends
Fishing, Hiking, ADVENTURE!
We learned early on that Pheonix was happiest when we allowed him to live like he didn't have physical limitations. He didn't want to be handled like he was medically fragile. His mind was sharp and his spirit was the same as any little boy. He craved excitement and thrived on chaos. If he could … Continue reading Fishing, Hiking, ADVENTURE!
Take Me Out to The Ballgame!
It is not unusual for loved ones to honor those who have passed before us by building memorials or creating funds to help others in their name. We are no different, but our goal is not only to honor Pheonix for his extraordinary spirit, but to raise awareness for other children with limited physical abilities … Continue reading Take Me Out to The Ballgame!
Lightning Bugs and Butterflies
I started this blog to hopefully inspire others through stories and uplifting revelations brought on from the life of our son. I sometimes have tears in my eyes as I write, but I always read the final blog and it helps me center myself and focus on the good. I hope that others read it … Continue reading Lightning Bugs and Butterflies
Traditions are pretty common in families. You get together at the same place for holidays or you look to the same people for guidance and support. What happens when one of the members of the unit is no longer here in physical form? Do traditions stop? Do you stop looking to them for strength? Do … Continue reading Continue Traditions
NO Snow Days Please!
By far the most unusual thing Pheonix ever did was get upset when school would be cancelled for snow or cold. Most kids are thrilled if they get the day off from school. Pheonix would just have this look of serious disappointment that he wasn't getting to go that day. Why did he have this … Continue reading NO Snow Days Please!
Unique is Beautiful
Have you ever thought to yourself "I want to be just like them"? I bet at some point in everyone's life they wished they were more like someone or something they admired. All my life I have been fascinated by four leaf clovers. Not because I am trying to claim my very distant, thinned out … Continue reading Unique is Beautiful
Learning From Others
There were a great many things that we were told Pheonix would likely never be able to do. We felt like as long as we gave him the opportunity to try, he at least had a chance. He attended a daycare just like every other kid who had parents who had to work … Continue reading Learning From Others
Life Beyond a Diagnosis
We are starting this page to share the strength of our son Pheonix Matthew and hopefully inspire others by seeing the world through the eyes of a child born with a rare brain disorder. This post will be the only mention of what Pheonix "had" because he never lived his condition. Pheonix was born with … Continue reading Life Beyond a Diagnosis