Day after the election thoughts

Okay, the presidential election didn't go the way I would have preferred.  However, I am finding this morning I can't muster up too much emotion.  That's because I don't think anyone in a position of power has any idea what life is like for people like Janey, and the families that love people like Janey.

Why is this?  Quite simply, because we can't run for office.  We CAN, legally, but who would have the time?  When would someone raising a child with significant special needs ever have the time to launch a campaign?  Who would watch our kids while we were out there pounding the pavement?  Who would be changing the pull-ups, fixing the meals they will eat, taking care of our pre-teens and teens and adults that need the same level of care as a toddler?  And I hope I'll be forgiven for saying that Janey will never be able to run for office herself. That is not at all to say there are those with autism that might be able to run a political campaign, but those are not the people with the kind of needs I'm talking about here.

The problem is we don't need rhetoric.  We don't need philosophies.  We need help.  We need respite.  We need housing.  We need education.  We need recreational opportunities.  We need health care.  We need adult day programs.  We need equipment.  We don't need "awareness".  We need HELP.

I wish anyone running for high office would spend a day with Janey, a day in her world and ours, or a day with any of the wonderful families I've met on this journey.  I wish they could see how hard underfunded public schools work to educate her.  I wish they could see what it's like to care for her day after day, week after week, month after month, year after year, without any respite besides the school.  I wish they could understand what it's like to be up all night with a child who is crying and can't tell you why.  I wish they had spent time as a "boarder" in a hospital waiting for a seat at a psychiatric ward for their child.  I wish they knew what it was like to wake in the night, terrified, thinking about my health, not for myself but because I don't want Janey ever to be without parents.  

I'm a one issue voter.  I would love to have the luxury to think of it all in a theoretical way, to debate the philosophy of it all.  But I don't.  Tell me you are going to put money into direct services for the disabled, and you have my vote.  People on high seem not to understand why many just don't vote, but I get that, more than I ever would have before Janey.  Why vote, I wonder sometimes?  It doesn't seem to matter who gets elected.  I was furious that Trump mocked the disabled, but then again, Obama mocked Special Olympics.  I might have preferred that Hillary won, but if she had, I very much doubt my life would have changed much over the next four years.

The truly voiceless are people like Janey.  I see a lot of people on Facebook talking about how they are going to explain this election to their children.  Janey didn't know there was an election. She doesn't know what an election is.  No-one is courting her vote, or future vote.  She doesn't know who Trump is, or Hillary, or Obama.  But more than almost anyone, she's at the mercy of those in power.  I'm not a prayer, usually, but God help her.

Janey's burst appendix story---Part Four

The story continues.  There isn't as much to report this time.  Janey is still in the PICU.  Yesterday, she had the ultrasound to see if she had an abscesses, and thankfully, she didn't.  It did show she is still very affected by the horrible infection she had after her appendix ruptured, and that her intestines are very stretched out.  But she didn't need to have drains put in, so that was great.  She has had a fever most all the time---it goes down when she gets the IV Tylenol, but then goes back up as it wears off.  It's not a high fever, but it's not great she keeps getting it.

We were waiting a lot yesterday for her to have a "pick" line put in.  I am not sure that's the right term, but it's a special IV line which she can get nutrition through, as well as all her antibiotics, and it could be used to draw blood, too.  As I've figured out about the hospital, there is a lot of waiting, and plans change.  From what I can gather, there is sort of an argument about whether she should have this line.  She needed the nutrition, so they are giving her a different kind that can be put in a regular IV.  She has a big bag of cloudy milkshake looking stuff going into her.  I guess the worry is that she might have a blood infection of some type, and that would not be a good thing with the pick line, or on the other side of the story, she might start being able to eat soon and the pick line would be overkill.

She did start moving her bowels yesterday, over and over and over and over.  It's amazing what she put out considering she hasn't eaten now for 10 days.  At first we were excited she was going, as it meant her digestive system might be recovering, but now the thought is that it might be a bit too much, and they are going to do tests regarding that.

She slept fairly well last night, after finally getting to sleep around 1 am.  I slept better too, at least in terms of a hospital sleep.

So---it goes on.  I did go home yesterday for about 4 hours in the afternoon and evening.  Tony and Freddy convinced me I just had to.  It was probably good I did, but I didn't sleep at home, and taking the subway and train both ways resulted in my net rest being far less than it would have been if I just stayed here.  But I had a few bills I really needed to take care of, and it was good to see my garden, which with our recent rain has gone from being very dry to being overcome with weeds. 

The boys have been incredible.  They have visited a lot, held down the fort at home,  and just been so much support to us.

Janey is a bit miserable this morning.  I think she's just tired of being here, and her stomach is hurting, and she's just not having fun. I can't blame her.

The plan for today is to see if she can eat, and to try to figure out if she has an infection.  Yesterday the plan was to get her back to the regular ward today, although I'm not sure if that's still the case.  I've figured out everything happens in the morning in hospitals, when doctors come around, and the rest of the day seems to be mostly waiting for things and just healing, which is fine.

I very much appreciate all your thoughts and prayers.  I am not much of a prayer myself, but I have done a bit of it too.  I would probably call myself an atheist, but the last few days I'm more of an agnostic, the kind of agnostic that hopes somehow someone is out there hearing my pleas for Janey.  But it's wonderful knowing how many people are thinking of Janey so much.  Thank you.