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a different kind of muscle ā€” guardianship process

  To all the parents who have walked through the guardianship process ā€” my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward ā€” the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.
Recent posts

quiet miracles

Trevy can now complete several school tasks with complete independence (after direct instruction has taken place).  As a former missionary and a woman of faith, I've been asked frequently to share stories of miracles. Mostly, people are looking for the whiz-bang stuff. The more whiz, the more bang, the more enthused they are. Most of the miracles I've observed would be more aptly classified as mundane, than whiz-bang. I am persuaded real miracles look much more like this: Faithful, consistent, little by little, inching along ā€” often not even daring to give your "someday" hopes real form but letting them sit in your heart as a shadow ā€” then one day you look up and that shadowy hope is sitting at a desk working out math problems while you chop up veggies.

he speaks in soul, not words

Trevor's eyes have always been magic.   I watched some old videos this week and was once again captivated by the way his whole soul radiates from his eyes, even as a toddler. It's as if all the words his mouth will never have the skill to find come beaming through his eyes instead. Like his heart language is soul speak, not spoken words.   He's had a rough seizure week. Like, rescue med rough.   This suffering of ours. How much can one family take? How much can his body bear?   Last night, as we snuggled in bed together, there it was. The magic. He turned his head my way, and his soul was reaching out for mine. We lay on our pillows just staring into each other's eyes. No words. No barriers. No secrets. No bitterness. All eyes. All love. All trust. All soul.   And it was breathtaking. It was beautiful.   Spontaneous tears started welling, then dripping down my cheeks. I haven't stopped weeping since. This journey is so hard and heart-wrenching and bone wear...

The bravest things

The next time I'm asked, "What's the bravest thing you've done recently?" My answer will most definitely be, "Letting him start his own YouTube channel!"  Talk about vulnerable. But it's his dream. Who am I to crush it? Speaking of which... if you do one kind thing today, make it heading over to his channel and subscribing. Because I can't help him reach his goal of 4 million subscribers by myself, you know. 

motherhood irony and instagram

In an ironic twist of motherhood, I find that I have less time than ever to document my heart and our days. I suppose I thought my time would free up as they matured. There has certainly been a lifting of the brunt of the physical care, but what has surprised me most is how the days can so quickly slip by even though my role has shifted towards more that of a counselor. I have yet to decide which is more exhausting: the physical care of young children or the emotional/mental care as they grow. Which is not to say there isn't a physical component as well.  Trevy, for all of his gains, still requires a moderate level of physical support throughout his entire day. As I helped dress him this morning, I paused, one leg in, one leg out, of his pants. The pause prompted him to look at me. Those eyes. So full of innocence and life and mischief. Oh, do I love his eyes. The force of his soul radiates through them and fills the room to max capacity like no other person I've ever...

words and feelings

Trevy had an appointment with his Talk Doctor (aka psychologist) today. We're working on identifying feelings and strategies for managing them. We were trying to create a list of calm down choices to reference when he's feeling really stressed. Talk Doctor: So, Trevy, what sort of things do you think you could do to help you calm down? Crickets Me, helpfully: Would going for a walk help? Or maybe playing a game? What sorts of things might we do to help you trap your sad thoughts so you can feel calm again? Trevy: How 'bout you, Mom? What things could you do to not be angry? Like you were today.  

like sighting a fairy

Capturing Trevy's joyful soul is a bit like sighting a fairy, which is to say impossible. Oh, we grab bits of it for sure. A smile here. A laugh there. The twinkle in his eye for just a second. But capturing the whole essence of him is elusive . This harmonica playing video comes mighty close. Right here is why we often say he's magical. Such a beautiful gift it has been and is to walk beside him.