Girlie is medically fragile. The widely used definition for medically fragile is “children whose complex medical conditions require monitoring and supervision on a 24-hour basis to prevent life-threatening complications, prevent deterioration of health status, and/or maintain health status.” The journey occasionally becomes extra hard when the stability we normally keep with girlie becomes compromised, and the downward… Continue reading 5 reasons I will not tell you when things are hard(er)
Today I sat in a waiting area while my daughter had speech therapy with one of her very good friends. Girlie does not like for me to be in therapy any more, so I wait in the waiting area for her. I sat, and I listened. I didn’t intend to eves drop, but well some… Continue reading the ability to learn
Sometimes my perspective gets all messed up. You know what I mean? I can’t see straight. I can’t see anything, can’t see at all. Everything looks dark, isolated, alone. I feel like I have lost my faith in people, in the network built around me. I get so focused on my trapped feelings, trapped at… Continue reading in the cleft of the rock
Last week girlie and I had a quick pediatrician visit to get a process documented and started for a new communication device (medicaid rules are sometimes always hoops we must jump through). These are the same doctors who have seen girlie since birth, same ones who continue to request we vaccinate her even though the vaccines… Continue reading “I just need a break …”
In the early days, after girlie first received her new communication device, we learned this important concept. “Presume competence” all the time, especially when girlie is talking with her device. Presume – suppose that something is true, assume with confidence Competence – having abilities and qualities With girlie, we need to assume with confidence that… Continue reading presume competence
Over the years, I have come to realize that I am of a family who values places. Places have memories, places are markers to the past, and places represent roots for our family. The house we lived in previously, for almost 10 years, was a place of great importance to me. My sweet husband bought… Continue reading place people
So many phrases are given to people with special needs children. Lots of them involve the word “STRONG”: “What doesn’t kill you makes you stronger!” “You don’t know how strong you are until strong is your only choice” “Keep your head up and keep your heart strong” “Get stronger each day” “Just think how strong… Continue reading Stronger?