Another difficult aspect of life with extraordinary needs children is the judgement of well-meaning yet ignorant folks who think they know all about our life. Yes, my priorities are skewed...my #1 focus is our chronically ill and challenged child. Everything else will come second or third or maybe even fourth on my list. That's it. You don't know about our lives or what it takes for our child to get through every day. Please don't think that your negative commentary is helpful. What our family needs is people who raise us up, who lighten our load, not folks who think they know what is best. What is best is what we are aiming for: prayerfully, intentionally, making our way a day at a time, the best way we can, with the help of each other and the people who truly are our family and our friends. God willing, we take it a step at a time; with love, with patience, with kindness we will make it.
