|Four Weeks Old|
Sometimes I'm not sure how we did it, but not doing it was never an option. We cried and ranted and leaned on others. We prayed and played and begged for help. And we figured it out.
|Home from the Hospital. Now what?|
|Leaving for work was necessary torture.|
|Edema! So obvious looking at this now. Didn't see it then.|
|There is a baby in this picture.|
|Meeting his Great Grandmother, Ruth.|
|Our evenings went like this.|
|First trip to Grandma and Papa's|
|Putting on the pulse ox probe for a trip to Iowa. So many car seat fails in this picture, the least of our concerns at the time.|
|My favorite time of day; bed time. Please God, let a good nurse show up at 10.|
|Still, there was infinite joy to be found in every day. Even the darkest ones.|
I remember that first barren Christmas. Toys for tots showed up on our doorstep with a donation for us and I'd donated toys to them. We exchanged socks, soaps, and bought a mini space heater because the nurses complained about how low we kept the heat. Ben got tools the therapists suggested for oral motor development and a bad case of pneumonia.
When we learned Ben wouldn't be able to vocalize due to his trach, we learned sign language which he readily absorbed. We learned how to advocate and break through the walls of the insurance and durable medical equipment companies. We learned doctors aren't always right and sometimes they act like jerks, but usually they are doing their best and aren't good with not having answers. We learned we aren't always right and that we sometimes act like jerks because we hated not having answers too. But this is our journey and it has been a humbling, beautiful, crazy ride both ways uphill in ten feet of lava. We just keep putting on our lava shoes, singing or cursing our way through. It works.
|One Year Blessed.|
|Now thirteen years extraordinarily blessed.|