Sometimes we walk invisible among the living. It's not as if we're not living. We're just 'living with'. We blend really well these days with Simon walking and talking. Fewer meds, more food play, greater stamina and energy from the little man means that until I whip out the feeding tube or med syringes or tell someone that 'no he's actually 3.5 years old just small and a little language delayed' there's nothing that extraordinary about us. Except for those blue eyes and disarming charming personality, Simon walks among us mere mortals and doesn't really stand out in those unthinkable ways.
Sometimes we walk among the other folk. The families that 'live with...'.
Families that live with chronic, life threatening illnesses. Families that live with hospital stay after hospital stay. Medical equipment. Syringes in the house. Medication after medication. Speech and language delays. Developmental delays. Systems, medical, educational, health insurance, co-pays, hold-ups, in-network/out of network transitions and fights. Diagnosis, no diagnosis. Relapses, remissions, and just waiting for the next bit of news....
We are one of those families and though I walk among the simply living a lot of the time, I'm never quite able to forget that I'm one of the other, living with....
This weekend we will walk among the other. We will carve pumpkins and paint our faces. We will enjoy the pool and playrooms. We will dine among those tube fed and not, and we will leave Simon for the 2nd night to be cared for by 'round the clock nurses and on-call dr's.
In just a few hours we will start our orientation 48 hour stay at The George Mark House for Children.
Saturday is the Halloween Festival and we've been told that there will be a number of young children there this weekend so Simon will have lots of company. It's our first overnight utilizing the provided respite care that we qualified for a couple of months ago. There is a two night minimum and since it's Simon's first time, we are required to stay the first 24 hours with him before he gets to go rogue.
I'm so excited for him to get to spend time there since he loved visiting and talked about it for days AND completely freaked out at the thought of leaving him there (even if only for 18 or so hours). I'm so glad to hear that there will be a full house AND am wondering at my own reaction to the immersion experience.
We haven't been around so many folks 'living with' since our amazing weekend at the Camp Taylor Family Camp that we went to two years ago May. I remember that feeling of being around 'my people'. I suspect that it will be a lot like that except there's this fear thing too.
I'm scared to be around 'sick' kids. I'm scared to see where we might be again someday. I'm scared to have that scar rubbed or mirrored back to me. I'm scared to be forced to identify with kids that might be "really" sick.
It's fucked up. I know it is. I feel embarrassed writing it and it's not rational or logical. There might be more kids that are like Simon and hide their chronic life threatening illness like we do than not. And, there might be kids that are more obvious in their 'living with'. I know there will be parents and caregivers there that are dealing with their situations so much better than the Fitch-Jenett's and likely some that are struggling in ways that I cannot even fathom.
Either way, I have faith that I will be present and enjoy each moment and meeting and connection made. More than anything right now it's the knowing and anticipating walking into the nest. Bee's nest, hornets nest, whatever you want to call it. It's that internal nest of mine that right now I am wondering how much will be disturbed, triggered, and troubled.
Mostly I think we'll have a spectacular time though. Simon has been talking about it for a few days now (recalling our visit from over a month ago!). I'm also looking forward to celebrating my wedding anniversary with Jaime without whom none of this would be as a spectacular journey as it has been. I heart you woman (pun intended).
Bring on the pumpkin party!!
Pictures coming soon. Here are a few from the last couple of weeks including Abby & Bianca's wedding at the Oz Farm in Mendocino.
With G'Pa at the Diabetes Walk in San Jose
Walking with G'Pa and GG
Arriving at the OZ Farm with his fox hat all ready to rough it
Walking the Farm, crossing the Garcia River
"I looove the Oz Farm!!"
maxin' and relaxin'
Sharing some treats with Tovah
Strolling with Mikey
Simon loves him some big Mike
Who doesn't love watching movies in a barn loft?
Watchin' the roosters and hens with Jonah
Simon in the garden at the Oz farm.