The Holidays are Here!

Whew! Congrats on surviving Halloween!  This years costume was brought to you by: a matron of honor dress from last year, the beard of a what I can only guess was a skirt of Doc’s face (I kid you not – creepy!), an old shirt, ribbon and some good old-fashioned hot glue!  Yay for cheap costumes!

I have to say I love that holiday a whole lot more being in California. My brother in law asked me if we dressed up a lot when we lived in Minnesota. Nope! After the layers and layers of clothes underneath to keep from dying of cold, it just didn’t seem as fun! I did, however, dress up as a Christmas tree once to win a costume contest. But, we took too long to get ready and missed the contest – I totally would’ve won though! Probably.

I have a love-hate relationship with this time of year. (Usually it started around Thanksgiving, but now I’ve added in Halloween.) I love being festive – costumes, dinners, baking, decorating, etc. I love spending time with family, seeing the thousands of posts on Facebook about what people are thankful for, and hearing stories about kids tracking or calling Santa. That’s the love part. The hate part – care providers. Don’t get me wrong, I love those that help me, but they have families and lives, too! They want to take their kids trick or treating and be there to help them get dressed in their costume. They have dinners to prep and decorating to do and gifts to wrap for their own families. I hate taking them away from that.

During college and the few years after it was always so stressful. Living in a college town meant college goers helped me a majority of the time. When the holidays came, they went home. I was left with whoever the agency could get – and those people were spread thin! So tired from covering others’ shifts and not used to my routine. I appreciated them, but dreaded those times!

Living here, it’s a different kind of hard. I have no agency to fill those shifts. When someone needs a day off, I have to hope I can cover it. The holidays always make me feel bad because, though I can cut to shorter shifts and skip cleaning, I still need to get out of bed. Thankfully, I’ve got flexible people who will work around dinners and gift openings and costume preparing and whatever else happens! I may get up at 5am, but at least I’m up! And I’m so grateful to have backups – friends and family who I know would never let me miss Christmas dinner if no one else could get me up!

I know not everyone in my situation is lucky enough to have backups. A few weeks ago I got added to a group on Facebook with individuals who have the same or similar disability as I do. Even in the few short weeks I’ve been in this group, I’ve seen multiple posts about care providers who call in sick, but are caught in a lie (who would post party pics online when their “boss” is on their friends list?), just don’t show up for a shift, refuse to work holidays, etc. It has been a huge reminder of how lucky I am for the people I have in my life.

Here’s to another season of schedule flexibility!  Bring on the holidays!

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2 Comments

  1. Ada Lloyd

    I absolutely love the Christmas tree. I am grateful you and Nathan are in California. I hope your care givers recognize the privilege they have to work with someone who radiates joy and love even under challenging circumstances.

  2. Kathy

    I love your tree costume and you definitely would have been the winner. I’m glad I can’t see Nathan’s costume too closely. Definitely creepy!! Hope to see you at Christmas!!

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