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...

My favorite sermon on disability and parenting is by Greg Lucas. His son has profound autism. We share a similar theology and world view. And so, I connect deeply to Greg's raw honesty and one line in particular has played intermittently in my mind over the years. There is nothing comfortable about disability. The truth of that simple statement resonates in my heart frequently as we bump against Trevor's particular color of uncomfortable. I'm speaking primary about his intellectual disability, though his medical needs also add complex and messy layers to life. There is nothing comfortable about Trevor's disability and education. There is nothing comfortable about Trevor's disability and attempting to maintain a social life. There is nothing comfortable about Trevor's disability and trying to help him build friendships. There is nothing comfortable about Trevor's disability and parenting his siblings or building our marriage.  There is n...

Some things you should know before reading the linked article: There is a part of my heart that does not want to post this. It is too intimate. Too raw. To share it myself feels somehow cheap. Yet not to share feels feels like a breach of courage. More than once I asked the reporter to find another family. Trevor's relapse has brought us to our knees and I'm so very weary. I'm weary of fighting. I'm weary of sharing our story for naught. Over the weekend Trevor had a seizure in the pool, which would last three minutes. When I close my eyes I still see his face plunging beneath the water as I tried to get to him. I still feel the panic of trying to lift his convulsing non-responsive body out of the water. I am soul weary with this battle. This battle which includes more than seizures, as if that alone were not enough. I just want to live and love my son in peace. I know it's easier to look the other way and pretend these things don't exist. Yet, everywhe...

Peaceful morning swinging often lures the philosophical from Trevor. Earlier this week he was laying back, arms behind his head, while I gently pushed and chatted with him. Somehow as were talking the number 18 was mentioned. He sighed, "I'm just thinking about me at 18." "Oh? And what are you thinking?" "Drive a car." He craned his head to make eye contact and observed my facial expression, which was probably a mix of sad surprise. He turned back around and continued, "Yeah, I'd love to drive a car when I'm 18." At that precise moment we heard a rumble in the sky above. After a pause he said, "Or an airplane." What am I going to do with this boy? First a car? Now planes! It's the sweetest thing that he's grown very aware of his "special needs". In fact, if he likes a person, the first thing he wants to share with them is "my special needs". When we meet random strangers in...

My heart has been an avalanche this year as Trevor's seizures have re-emerged. While I share my heart fairly openly, there are many layers of which I speak nary a word; some pain is meant to be private. One source of shareable pain and frustration is the perpetual bumping up against those who cannot seem to grasp the staggering, impetuous nature that is chronic, catastrophic epilepsy. I tend to be good with the words, yet try as I might to apply the most bold, expressive language possible when describing Trevor's seizure disorder and how it impacts our lives every day, every moment, still, there are those who minimize or remain blind to our struggle. Some, even as they bear witness to his seizure disorder with their very own eyes. Jonathan feels we own a bit of the blame for this. We live quietly and strive for peace "in spite of". In short, we do a damn good job of "holding it together" which allows room for misinterpretation by the undiscernin...