Running and Waiting

Good morning!

Don't you love these cool nights and warm days? I love, love, love the gorgeous fall leaves.

I realized that I've been speeding through my blog and not even taking the time to spell check when I'm done. I feel bad about that. When fall starts we are crazy busy with life outside of cyberspace and for a while my blog became kind of slap dash. I apologize for that. I hope you got something out of it anyway, even if it's only the knowledge that I'm as frantic as you are! ;-)

I'm working on my books and the first one will be out soon. Wanna see an excerpt? Here's the start of Chapter One.

Chapter One
All I wanted to do was hold my baby. I sat on the outside of his egg-like incubator, looking in. Ryan was connected to a snake’s nest of wires and tubes in the Neonatal Intensive Care Unit (NICU). A ventilator sprouted from his tiny mouth to help him breathe and tape covered half his face to keep the tubes in place. A pharmacopoeia of drugs surged through his small body doing only God knew what.



I stood and gazed at my two-week old baby, a child I had never held. My arms ached with longing as I hung over his isolette, touching the small head with its bruises and soft fuzzy hair through holes on the side of the enclosed plastic bubble. A bandage flapped loosely on his purple and swollen heel where blood draws had been performed until the skin was angry, bloody and distorted. Grief pushed me down. I sank slowly into hell...the trip there as bad as the arrival.

The book is called Children of Light, and is my story as a Ryan's parent, a parent of a child with disabilities. It's candid and honest. It's a faith journey and a book of nurturing for other parents and caregivers. It's about a normal person suddenly thrust into a world of exceptional needs. If you're interested in getting notification when it's out just let me know.
 
Do you ever get tired of running and waiting? I run Ryan to massage, then I sit an hour and wait. I run Ryan to choir, then I sit an hour and wait. Yes, I run errands, write or walk, depending onteh weather and where I am, but it's still time that is invested in our kids that other parents don't think about. They can drop their kids off, usually for more than an hour. They can rely on them to call for a ride when they're finished with an activity, for the most part anyway, and they can car pool. Car pooling would be great but Ryan's activities don't really lend themselves to the car pool crowd.
 
I want him to go to all the activities that he wants to attend but I do get tired of careening around town, son in tow. Does that make me lazy? A bad parent? Ryan is twenty years old now, so I've had a couple of decades of running. Maybe this is another grief step I'm going through. Grief that I'll never see him do this stuff on his own, that I'll always be running him, his entire life. Maybe it's the realization that there is no end to it that gets me down.
 
What do you all think? If your loved one has been an adult for a while, is this something that we go through, as parents of children with disabilities? That weariness of running and waiting? Or is it part of the larger grieving process.
 
Let me know your thoughts and solutions if you have them,
See you soon,
Much love and joy,
 
Karen