So here's the deal. Inside these walls, every little thing that happens is normal. While it's not handled in a cavalier way, it simply is. Being here is comfortable. There is fantastic staff to help you along every step of the way. There is even community. From the Candlelighter's crew, the Child Life Specialist, the Social Work staff to even fellow families. Even if our diagnosis are different, we are all fighting for the life of our children. Stepping outside can sometimes be scary. The few times I have taken Gregory to the grocery store, I now use those anti-bacterial wipes that are at the front of the store. I scrub down the cart before he even touches it. I'm sure people walking by think I'm a wack job. Thinking about our trip and discussing it HERE, within these walls, has renewed my hope and excitement. I have that "first day of school jitters" feeling. While I am acutely aware of what we have ahead, I'm excited. I've been re-programming myself to treat this as an adventure. The only part that gets me down, is the balance of my family that gets left in the out-field. Left to try and cope. Left to try and understand and experience it, through us. I feel awfully luxurious in my ability to be with Gregory 100%. If I had to stay home and Larry went, I think I would truly turn psychotic. Don't think for a minute that I take Larry or my mom for granted. They both are sacrificing so much, in order for me to do this. While there really is not another alternative, I am deeply grateful for their support. Even though Larry and the other OffSpring won't be there, we are all fighting this beast. Together and with resolve.
Every once in a while, I get a wave of "whoa! This is HUGE!". We are trying to save Gregory's life. Plain and simple. We have a proven plan of action. We are on our way.
Good news!: Gregory had a slice of ham, 2/3 of a small bag of chips and about 6 ounces of fluids. Yay! Departure tomorrow looks good, so far. He had a shower tonight and we cuddled while he fell asleep. He so tenderly, reaches out, around my neck to nuzzle as he falls asleep. There is nothing sweeter.
Time to do some knitting and watch The Tudors. G'night, all. Go, give your kids a kiss. Even if they are teenagers, those sleeping foreheads can use it. Gotta jet.
*ETA: Bonus points if you can guess my lyric. Also, web searches are an automatic disqualification. Even if I don't know, you will.
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