The Manifesto of THAT Kid's Mom.

        I died in childbirth. So did my kid.  Modern medicine and our mutual stubbornness being what they are, it didn't take.  But it did leave us on a long and twisting ride through the jungle of raising a disabled child.  So I thought, perhaps, I could maybe give a few pointers to all those who encounter some one like us along the way. So here, goes, the manifesto of THAT kid's mom.

                  1) LIGHTEN UP- It's ok, really, we get it. Disability -especially disability in children brings out the wonky in every human being.  All our evolutionary fears of contagion and is this going to affect the group's survival, etc etc. It's ok. We get it. Take a deep breath and relax.  I won't be offended if you're freaked out when Feisty Pants looks like she's going to stop breathing if you don't judge when I offer her a hundred bucks to swear at a speech therapist.  And its ok for your kids to ask questions.  I've yet to have one child say anything even remotely rude. They ask better questions than adults. 

                 2) Don't help us to death.  Wanting to help is the other way we all get wonky. Don't get me wrong the instinct is amazing. (And humbling. And gives me hope for us all. I live in the most amazing neighborhood on the planet. My neighbors help with lawn work and snow shoveling etc. Without even being asked.  I am awed and grateful that we are lucky enough to have them.) But if you don't know how the machines we use work or your hands aren't washed, please don't touch things.  And, please, don't move anything. Even if looks like I am about fall over it. You really must do something, bring me a latte.  Coffee is worth more than diamonds around here.

                  3) Please get that we are BUSY and TIRED.  My daughter needs complete assistance with daily activities.  And she cannot swallow well. Or eat like other people. That means that someone has to be awake with her all the time. Her father and I sleep in shifts. We both routinely work 18 hr days. A bad day can go as long as 24,48, and one horrible week 72 hrs.  If you call , you're getting the machine. If you knock, walk in. If you need us - holler into the machine or just walk right on in.  We won't think you're rude.  Hell, we wouldn't notice if you were.  We're ok with drop ins who just knock and then walk in if you're ok that we are cranky and can't remember your name.

                 4) Don't feel bad.  It's not all a lifetime movie.  This is an adventure not a tragedy. We don't get out much.  So what. We're ok with how boring we are.  (After a few helicopter rides to an out of state hospital, you'd like boring too.)  So many people have expressed sympathy that we don't get to "do much". I don't know why.  No movie can be as adventurous as surviving your own death. No story as miraculous as watching your baby start to BREATHE again. No joy as incredible as hearing your daughter who you were told was going to be a vegetable tell her father that English boys are cute because they are English.

                       So there you have it. Thanks for reading.  I feel better and hope you do too.  We all make better choices when we relax.  Now I just gotta go find where I left my darn coffee...