Halloween mermaids, 1st birthday, and house adventures

So much has been happening.  First I wanted to write about my halloween costume, which was awesome.  I was so tired form Halloween that I didn’t get to it.  Then there was the election and the results, so that’s been tumultuous.  My nephew’s first birthday was the following day.  We went to Disneyland to celebrate and my power chair broke.  Next was the actual first birthday party.  And now we’re in the middle of a bidding war for a house we found.  May I take a nap now, please?

I have many joys in my life and most of my troubles involve me worrying about the world and loved ones or me struggling to adapt to my health conditions.  The good and the bad take up so much energy, and yet I am so determined to give everything all I have.  My attempts at learning to pace myself are perhaps my greatest shortcoming these days.

My symptoms continue to worsen.  Without my chair, I am not as able to do things.  A new one is coming soon (just one week!), so that will help.  I am going off of my current meds since they weren’t helping (I have doc’s go ahead on that).  I’ll actually be medication free in a week assuming all goes well.  We’ve put in to change insurance, so when I get in to new doctors for 2017, maybe we can start trying new meds, though I can’t really imagine what we haven’t tried.

Well, let’s get into what we missed.  For Halloween, I dressed as a mermaid and I made my power chair into a shell throne.  I usually do a lot of sewing for Halloween, but this year I bought the tail and corset.  img_2533I made the shell bra from molded shells that I painted.  The tiara was from my bridal shower, but I changed a bunch of the stuff on it.  The extensions were the ones made for my wedding.  I did sew up the shell throne bit for the chair cover.  I  love how it came together!  I went to multiple outings, mostly following my sister and nephew around as we celebrated his first halloween.  I had all sorts of kids approaching me and wanting photos.  I really enjoyed seeing so many happy kids smiling!  It was also really nice for me to be participating while in the power chair.  Everything is much easier on me as I don’t get as lightheaded and don’t need to be focusing on not falling.

The election.  It’s been really hard.  My dad was a big local volunteer for the Hillary Clinton campaign and my family has been in support of her.  We have a history of being politically active.  I wasn’t so passionate this election and many other things have been on my mind.  I’ve been wanting to keep peace and friendships with everyone I care about, and that includes many with political views that are wildly different from mine.  I feel a lot of guilt about Donald Trump winning.  I know I could have done more, and I didn’t.  I’m disheartened to see so much disagreement and anger in the country.  My reaction is to love everyone.  I’m realizing more and more that I am not a fighter.  I am a peace lover.  I want to bridge the gaps, I want to find understanding, I want to see people coming together.  And yet I do harbor many of the fears that the fighters shout out about.  I care deeply about civil rights and protecting our planet.  I may need to find my voice in this yet.  I think it’s time to read up on Gandhi and Martin Luther King, Jr.

dlandGoing to Disneyland the day after the election results were announced seemed like a positive way for us to move forward.  After all, we are celebrating the first year of life for my nephew. We started out really great and had a nice crowd, even my mom finally decided to come out and get a Disneyland pass, plus my husband took the day off and came out.  I couldn’t believe my chair died on me, though!  Fortunately, my chair is also pushable, so my sweet husband helped me get around.  Spending time with my nephew always brings me such joy.  He is now giving high-fives, he’s really into clapping, and he can say “mama” and “dada.”

His first birthday part was an even more exciting affair.  My sister and I both love throwing theme parties, so she went all out on this.  She had a baby Mickey Mouse theme and tons of decorations.  There was a really great turnout, too.  I am still getting used to how to handle social events with my worsening condition.  I step away and lie down for bits so that I can be somewhat rested up.  When people honestly want to know how I am doing, I admit that my health is worsening, but I emphasize how great my mood and spirits are and that I am just so happy to be celebrating.  I am pleased that I am getting better about letting people know that I am having issues, but that I am still happy.  I used to always just tell people I was fine even when they pressed it, which caused trouble.  It doesn’t work to want people to understand your health issues if you won’t admit to having them, I have found.  I still find it hard to talk to a lot of people since I need so much rest.  I saw some dear friends and wish I could have talked more with them, but so glad I did get to see them.

In other news, the house we found is really awesome.  It’s too bad that everyone else seems to know it, too.  Bidding wars are not the most fun.  It’s been a little wild around here with emails and calls all over the place all with levels of urgency that are a bit much for both me and my husband.  This is for a one level house that we could actually alter to be wheelchair friendly.  It’s the first one we’ve seen in about a year that was a real possibility.  I am really thankful we’re in a position where this could be possible for us.  I’d be really surprised if we actually get it, though.  Our counter offer wasn’t very strong and we’re not going any higher.  Here is to hoping, though!!

All in all, I am pleasantly surprised by how much I appreciate my days.  Sometimes things are really hard, but I feel loved and that gives me such strength.  I keep dreaming about the future and working towards building up my life with what I do have, and I do have a lot going for me.  I’m realizing more and more that working on my own life may not be enough for me, though.  I see so much changing in the world.  I used to have the energy to work on so many causes.  As I consider growing my family I also need to consider what I will doing to ensure our world will be a place worthy to pass on to our descendants.

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