happy being trevy

I've heard it said that being a mom shouldn't define me.  The longer I work at this calling of motherhood, the less I agree with that opinion. While I am more than a mother, the fact that I am a mother has served to change me so truly that I am wholly altered. Mothering fills my thoughts, my moments, my days. Motherhood has changed the shape of my physical body and my soul. The deepest layers of my heart are defined by this blessed gift of motherhood.  Motherhood plays a profound role in my friendships. The closeness of my heart to the hearts of others directly hinges on their relationship with my children.  The truth of this as it relates to Trevor is especially significant. I know it makes people cringe when praise is given to those that do something kind for disabled kids (and adults). I agree that kindness should be the rule. Period. I also know that to engage with Trevor requires more work than it does to engage with myself or my other children. He...

People hold dear strong opinions about so very many things. What it takes to have a good marriage, for instance.  Date nights are a NEED.  Sleeping in the same bed is NECESSARY.  Speaking of beds, your bedroom HAS to be a child-free sanctuary.  Romantic get-aways are a MUST.    NEVER, ever forget it's your anniversary.  Just a few strong opinions we've heard over the years. None of this counsel is bad; nor is it necessary. Jonathan and I rarely have a date night. In the past six months, we've been dinner alone twice. Both times were spontaneous, stars aligning (which is to say, Grams' volunteering) moments. By the end of the day I'm usually too exhausted to go anywhere that isn't tempurpedic anyway. Also, it's hard to find qualified care-givers. Even more difficult is leaving your child behind when they are having frequent seizures, some of which involve turning blue from lack of oxygen. It's not as if we can say, "Now, Tr...

December has not been kind to Trevor's body.  About nine months ago we began implementing a modified version of  The Nemechek Protocol . While we were not terribly optimistic, the more we read, the more we felt it was worth a trial. We have been surprised to watch as Trevor's seizures slowly responded in a positive direction. Last November he had over 100 seizure events; this, his seizures tallied in the single digits.  And then came December. Now our hearts begin the difficult process of navigating the questions and pain each additional seizure brings. Was this simply another honeymoon period?  Each seizure event rends a little more of my soul. My silly soul who allowed herself to begin to hope too deeply yet again. After eleven years you'd think I'd have erected a stronger safeguard. I feel very much, at times, like a tattered, shredded cloth flapping, whipping even to the point I fear coming completely undone, in the winds of this storm that is catas...