We've been fired

 “Being fired has some of the advantages of dying without its supreme disadvantages. People say extra-nice things about you, and you get to hear them.”

― Howard Zinn

It started out as a fairly simple visit.  

I had my coffee in hand and was waiting with my son getting ready for the visit to the Complex Care Clinic at Gillette.  It was early and getting a grumpy teen to be cooperative at 7:45am is like asking someone to successfully nail Jello to a tree.  

We had been referred to Complex Care because, well my son is complex.  He has complicated medical stuff.  When we started there we were even paired with a specialist with a disability because she was touted as being adept with kids like mine.  We got the same nurse we had while my daughter was there and I was excited to work with her again.  

After I filled out the paperwork and was assured that "Dr. X" could manage all my son's health conditions we were set.  

The first meeting went well.  She seemed to know what to do and was ready to roll.  We were even promised some new services they offered there.  

Then the honeymoon came crashing down.  Our team wasn't returning our calls and the doctor was floundering.  

The doctor asked for a meeting and then admitted that she had no idea what to do with my son.  That he was complex.  I asked if this was not the Complex Clinic and did they not have "complex children".  She stated that she really delt with "less complex" children.  That she did not know what to do with my son.  

By now my son was rolling his eyes and pretending to bang his head on his laptop.  "Mom, didn't this woman go to medical school?"  "Like how hard is it to say give him an IV when he's sick and Benadryl when he has an allergic reaction.  Mom, do you purposely pick stupid people?"   

Thankfully she didn't catch any of that.  I did rephrase the question and ask about getting some support when Marvin crashes.  Her response was, "I just send people to the ER because I am not comfortable dealing with that."  OK......  

Anyway, we were politely fired from Gillette Complex Care.  It was not the first time Marvin was "too complicated" for a department there.  

I probably should be angry, but I'm not.  I'm just disappointed that someone who went to medical school, spent time learning things medical, and advertises being able to handle complex kids is having a parent spend hours doing research, read medical books, and try to dig resources out of a rock so her kid can have a decent life while she can't be bothered to reach out to my son's main specialist who would guide her in pulling it all together.  

It does stink, but I'm also not going to cry in pillow about not having to visit with Dr. X anymore.  I could find better ways to spend my free time.  Like trying to figure out where missing socks go around here.  Or discovering a cure for grumpy teens.  

My son deserves better.  

POTS sucks

 "I'm sorry I am such a burden."  

"Marvin you are not a burden.  You cannot help having POTS.  The only time I find anything about you difficult is when you keep forgetting your shoes and I fall over your size 27 clodhoppers for the 8 millionth time." 

These are the conversations we have.  Five steps forward and five steps back with a chronic illness that really doesn't care if you have plans.  An illness that just when you think you are in a good spot, it sneaks out from behind and hits you upside the head. 

The good news is that thanks to a port, regular IV fluids, and medications he's probably more stable than he has been in two years.  But even in stability we still have blips.  

We had one this past weekend.  We came home from an errand and he went to lie down.  The dizziness, sweating, and seeing black spots tipped us off that he needed fluids and salt fast.  He got them in but still needed more.  I called the on-call nurse for fluids.  Should be a simple fix right? 

Of course not.  I spent the next three hours going back and forth with the on-call intern about what to do.  Of course, I got what we needed, but geez, why does it have to be so darn hard? 

Marvin's doing better, thanks to Mom not taking no for an answer.  I've also sent a long and detailed email about how we need a better plan in place for these things.  I just don't have time to fool around with this nonsense.  The kid has plans and the sooner we have better medical plans in place, the sooner he can keep going out and conquering the world. 

We Don't Know What the Future Looks Like

 I can't speak for the future.  I have no crystal ball.- Micheal Jordan

That is certainly true.  For example, if you had told me one year ago that Marvin and I would be sitting at our local community college discussing PSEO classes, I probably wouldn't have believed it.  

Yet today that's exactly what we did.  

Somehow the kid, who in preschool had a teacher who said he didn't have a lot of potential because of all his behavioral problems, registered for an on-campus tour and drug me down there.  Technically, I'm still his ride, but sitting there and watching him scratch down a few notes and calculate all the big bucks he might make if he decided to move forward with heavy-duty truck technology kind of made me a bit teary.  

He's come a long way.  He still has medical issues and requires some support, but at the same time seeing how far he's come just never ceases to amaze me.  

I don't know what his future will hold, but I have no doubt that whatever it is, it will be amazing.  

Marching to our new normal

 The only normal people are the ones you don't know very well-Alfred Adler

Well normal would not be something we are well known for around here, but our not-so-normal is becoming something we are getting used to.  

The big hulking human (well at least to me, I'm 5'2", and everything over that is huge) has decided to keep his doctors scratching their heads.  To be fair, he always had medical "stuff", but it was only in the past 3ish years we got names to them.  POTS and MCAS have been the all-star line-up.  

The worst part was getting shuffled around and blown off.  We even went to a highly recommended pediatrician and she suggested we put my son in an eating disorder clinic.  Yeah, I'm sure that would cure POTS in a heartbeat.  

So anyway, my child WITHOUT an eating disorder finally was seen by a specialist who knew POTS and teamed up with our local cardiologist.  It was magic and stuff started happening.  They actually listened to Marvin and came up with a plan to help him. 

Marvin has a port now and gets IV fluids twice a week.  He is on specialized medication to help his MCAS.  For the first time in years, we have something I had not thought possible.  Stability.  

At his doctor's appointment, his specialist commented that this was the first time in three years that Marvin was stable.  Not only stable but growing and thriving.  I wanted to hug the doctor but he said he hates people, so I just shook his hand instead.  I'm pretty sure he washed it after that.  

No new medications, no new therapies to add for this at least, and NO VISITS for 6 months. I am beyond thankful.  

The one thing I have learned with my kids is that you can't give up.  You have to fight.  Even when you are worn out, just keep fighting.  Because Marvin deserves more than subpar services.  All of our kids do.  

After a longer than normal pause........

“When you feel the pressure to respond.. know that it’s not the right moment to respond.. pull back and pause, reflect, re-think"-Jaya Bhateja

It has been a while.  I kept telling myself that today I write something.  That today kept getting pushed back over and over.  

Honestly, my heart hasn't been in it, and after losing Cary Lynn part of my voice died that day as well.  I know that sounds incredibly melodramatic, but it's true.  She was a tiny human, but she made a big impact.  

She still lives on.  In the organ donations, the speeches I give about her impact at local organizations, and in a nifty article in the Journal of Pediatric Ethics. Also, she is part of the Born Able book series. She is enjoying a highly active afterlife, which I believe suits her just fine.  

As for the rest of us, life has never slowed down.  I think it was a well-meaning, but mistaken assumption that things would be "quieter" after my daughter passed and that I would get my well-deserved parental rest, sitting quietly on the sofa eating bon bons and watching bad reality shows. 

With another medically complex kid in the home, my own health issues, two dogs, a husband who changed jobs, and no health insurance for a month while things flip over, and my advocacy work I think I am just as busy now as I was before.  If not more so.  I have told my husband at this point I will rest when I am dead.  With my luck, someone will track me down in a seance and remind me that I left that load of laundry in the washing machine and what should we eat for dinner.  

Anyway, I think life will always be busy for me.  When self-care is mentioned by my medical team I snort and ask when they are going to come to my house and take care of things so I can do this mythical ritual that they speak of.  Although not having insurance this month has been great, because they can't bug me so maybe I will consider that my self-care moment.  

I'm going to try to get back into writing more.  A good friend and I talked about it and I realized about a week ago how much I miss it and how many things have happened in the needed pause.  Thanks for being patient with me while I pause.  Hug your family tight too.  Tomorrow is never promised.