Having Words

                                I mentioned in (on?)  this blog a while ago, that one day I would say why a dirty word is my favorite word.   For some reason, today I feel ready.  Probably because it's been hectic and a little busier than our version of normal. I find myself a little tired and overwhelmed. When you have a disabled kid, especially a complicated one like Feisty Pants, there's a sense of urgency about getting every damn thing done now, like right NOW,  because a part of you knows you will never get back to it.  My favorite word is in many ways about love and defiance and right now I feel the need for a shot of defiance much the way we want an extra shot of espresso to handle that afternoon energy slump. 

                               So, the story is actually Goo's.  It's from his perspective.  When I was in labor with Feisty Pants,  the placenta abrupted ( the placenta separated from the uterine wall before it was supposed to) and it got hectic quickly.  Feisty Pants stopped getting oxygen and her heart stopped.  I hemorrhaged and bled out. We both died, basically, in childbirth.  Goo, who had been shooed out of the operating room was watching through a small window as all hell broke loose.   He said the surgeon was working on me and the respiratory therapist was doing cpr on Feisty Pants.  After a while, the doctor looked at the rt and said, "Do you want to call it?" (Meaning call her time of death) 

                                The respiratory therapist says, "No" and keeps working.

                                Goo said after what seems like a million years, the doc looks at the rt again and says, "Do you want to call it?"

                                The rt says, "NO" and keeps working.

                                After yet another million years, the doc says, "I SAID, Do you want to call it?!?"

                                Goo says the rt whipped his head up, looked Goo right in the eye and says very clearly so all could hear, " You can fire me tomorrow but FUCK YOU, NO!"

                                And like that, Feisty Pants' heart started beating again.

                                                                                                                        

                               So you can all say what you want about swearing and manners and civility.   You can say all you want about goodness and light and love.  Sometimes love comes in weird and wild ways. Sometimes it's not the kind word or sweet gesture that makes the difference. Sometimes defiance is a form of love. Sometimes stubbornness is a form of caring for your fellow creatures. Sometimes, in the darkest of moments it's the human being who is willing to defy the odds and face the storm with you, even if only for a moment, that makes it possible to stand back up and put one foot in front of the other.  Sometimes "fuck you, no"  sounds an awful lot like love..

BTW for those who heard this and asked- we never even knew his name. Hubby hugged him later but forgot to ask.   Someone at the hospital did tell us he had moved away soon afterwards.   I like to think he is out there somewhere spreading love and f bombs like they're glitter. 

Also BTW- if you are reading this and it was you, thank you.

The Busy Season

                             Soooooooooo, it's been about a month since my last post. We've been crazy busy.  Feisty Pants had oral surgery. Four impacted wisdom teeth, One other molar attached to one of her wisdom teeth.  Two premolars that grew through the roof of her mouth because her mouth is small. Feisty Pants is fun sized- so everything about her is a little too, well, little.   The oral surgeon was an optimist. The office expected her to be in and out and on her way in one day.  After anesthesia. Oh, they were a hopeful bunch, those guys.   The anesthesia irritated her lungs and, coupled with a little more bleeding than expected, ended up causing a four day hospital stay.  Which Goo and I totally expected going in. Otherwise though, FP sailed right through.

                              And we are getting ready for more anesthesia.  Feisty Pants needs to have a CT scan to check her hardware. (She has had a complete spinal fusion and is robokid.)  She either cannot or will not sit still -it's kinda hard to tell which and a moot point anyway, so under anesthesia she goes. No biggie really, but this means paperwork and clearances and out of town trips again. I literally had a message from one doctor's office that said, "We want you to get the authorization first before we give the authorization so the authorization does not expire too early for the authorization."  The craziest part of that is that I understood it.

                              And it's IEP season- for uninitiated that means meetings and paperwork as the school plans her therapies and goals for next year.  Which will either be tense or simple based on whether or not the school is trying to cut back on therapies again. I fully plan on being a pain in the ass about that. This is NOT a kid who needs LESS therapy. Her school has a whole day they set aside for these meetings.  I just found out the day is tomorrow.  As far as I know I don't have a meeting- but someone might have just forgotten to notify me and I won't know before tomorrow anyway. 

                               And it's prom season.  Feisty Pants is over sixteen  and thus, eligible to go to her school's prom. EVERYTHING is about the prom for her right now. She got a pixie cut so she would be cute.  She insisted on dying said pixie cut lavender so she would look fab and "tand out". (Stand out)  She has two dresses already but just might want something else- she has not decided. She changes her mind daily on what adult she will allow to take her (someone has to suction if needed) because she doesn't really want any of us cramping her style on her big night. I love it when she is so excited about anything, but this is strange to me.   I was indifferent to such things as proms. But FP thinks she's frikking Cinderella. 

                              And we are losing our direct service person. Care giving is a hard job in a million different ways and she is moving along to another.  I wish her well. But this does mean we are going to be finding another member for our team- which is harder than it sounds.  You have to find the right fit or the chemistry of the team just goes all awry.   Plus it's spring.  That's the bi-polar season of snow one day, seventy degrees the next, and raining pollen and mildew spores all the while. Not normally her best time of year, but so far so good. It's almost like the kid has been too busy to remember to get sick.  I cannot really complain- it just seems like we don't stop to catch our breath anymore.

                             Originally, I had the idea of making this post about the importance of self care for caregivers.  That will probably be next time.  I just gotta remember what the heck that is again.