Thursday, April 2, 2015

Special Ride

Families with special needs children are riding along a bumpy road. We reach for the GPS because we often feel quite lost. It’s just that..we’re not so sure of our destination or whether to take the “fastest route” or the “shortest route” just please don't take us in those weird little circles.

 Personally, I’d like to avoid too many twist and turns. Little voice coming down from the heavens, I want to “avoid dirt roads” - this ride is messy enough. Please “avoid toll roads.” Toll roads are just too taxing….

Is that a lot to expect from a GPS? Surely there’s a Special app for that…

 We’d love a comforting, knowing voice to announce the next road to take and how close we are to the next available rest stop. We’re tired! 

We often feel like we’re are traveling alone - that’s why we pick up strangers along the way. 

Meet Jackson Gillman.

Also known as the Stand-Up Chameleon!

Once a stranger and now fellow traveler on this ride with our Special One. He gave Aidan his first smile of the day as he sang silly songs and used Aidan's body as an instrument. Tapping on his fingers, playing his ribcage, knocking on his knees. He used Aidan's hands to tell a story using each finger as a member of a family who ended up living in Aidan's heart. 

This was music therapy at its storytelling best. What a wonderful human being. I'm so glad we crossed paths. 

 Complete strangers put air in our tires. Gas us up, so to speak. Anne Lamott says "laughter is carbonated holiness" and I would agree:) 

 This road is hard, but it makes us soft.

The view from this windshield makes us look at life a little differently.

We are forced to slow down, speed up, miss a few exits. 

I could flood a road with my tears when I think about the things Aidan misses.

Sports, school, birthday parties, a voice. A normal meal. Playgrounds.Walking across a room. 

But the emergency vehicles arrive just in time. 
They repair the damage caused by grief.
The Life Support Team. 
You know who you are. 

 We roll on...

A lesson is learned with each lap around this track.
Like the race car driver attacking the complexities of the turns.
It's about focus and occasionally requires lightning speed reflexes to stay upright and clarity on how to make wise decisions.

Sometimes we're able to experience a victory lap. 

If you do too..give yourselves a round of applause!

Receive your metal!

This metal of Endurability...

We are not having much victory with this hospital stay. Aidan is not tolerating being in ketosis. He's not keeping anything down and is sleeping the day away. The pit crew has had a meeting and we are on to plan B. 

We're Realists.
Expecting miracles...

Amen, and so it is. 


  1. You're the amazing Grandma of an amazing little Prince. I'm praying for you both, for you all...

  2. How very proud of am of you, my beautiful daughter. You are so very gifted in your ability to express your feelings and be vulnerable in sharing your fears, frustrations and painful struggles as you attempt to
    navigate so many unchartered waters. I salute you and love you courageous pioneer. In awe of your diligent bravery and devotion to our beloved little warrior, Aidan.