Connection

Oliver’s autism means that sometimes it is hard for us to connect. We can be in the same room, but not really together. It is a challenging experience to articulate to be together, but apart. Sometimes (for days) it feels like he is locked away from me, but this weekend at the beach he was all there. His sweet smile, his engaged eyes, his gentle touch to my face (almost as if he hadn’t seen me in a long time) made this mama’s heart melt 💕 The connecting didn’t stop with people, he was enthralled with the ocean and sand like a kid who had never seen a wave crash. He experienced so much wonder and joy in those hours. To see the world through his eyes is...spellbinding. Connecting, really connecting, to other people and God’s creation is such a gift. Let us not take it for granted.

Such A Puzzle

We are settled into our "home away from home" on the 6th floor, where we have reunited with so many of our nursing friends. We have to be the biggest fans of UNC Children's Floor 6...such good people here, we wish we could introduce you to these incredible human beings. Today we are working on Oliver’s constipation (i.e. he is getting another clean out) as well as meeting with dozens of doctors. We have actually gotten tired of talking, especially retelling Ollie’s story “from the beginning.” We are tinkering around with some medications and trying to figure out a plan of action for the fainting spells, but so far nobody has a brilliant solution. We wish there was more we could tell you, but as the neurologist said, “Oliver, you are such a puzzle!”

Mama stealing kisses 

Y'all are so sweet...we can already anticipate the texts and FB messages you are going to send:

Is this related to his Mitochondrial Disease? Probably. Do we know more about the genetic test results? Not yet. Does this have anything to do with Epilepsy? Probably not. Is this a self-stimulating behavior related to Autism or Sensory Processing Disorder? Maybe. Is this seen in other kids with Tuberous Sclerosis? No. Do you know why he is doing this? Not exactly. Is he feeling discomfort or stress and trying to soothe himself? Probably.

Do you need anything at all?!? Actually we could use a box of nice tissues with the aloe. The hospital ones are sandpaper and sometimes we do cry. This is hard on our hearts. We would also like a continuous IV drip of coffee. 😂

How long will you be there? We don’t know, but probably at least until Monday.

One of the few smiles from today. We worked hard for this one!

Per usual, we have more questions than answers. We are getting more comfortable living in the land of unknowns. It is an emotionally draining place to be, with questions about life expectancy and quality of life always swirling in the background.

Reading books with his cousin, Jackson, who took a break from classes to pop in for a visit

No matter the answers we do or do not get, we are going to live life the way we’ve been living it---with intention and gratitude.