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Juneteenth

I missed Juneteenth.  June 19th, 1865, the abolition of slavery in Texas.

I planned to acknowledge it and celebrate. I circled it on the calendar, wrote it at the top of my planner, the week of.  I've honestly never thought about Juneteenth before, in my whole life, but for some reason, this year, it was important to me. I was going to gather my kids and it was going to be an epic celebration.

It didn't happen.  I missed it altogether.

I wanted it to be our day of emancipation from Dyskeratosis Congenita.  The disease that has produced nothing but scarcity for us.  The chronic reminders that change what could become of each day.  It would be wrong to suggest that we have no say in this...because we do, and we use to live our best life but then I got tired and forgot against the current of disease and we became enslaved to a different way of living, of thinking or despairing.

Ironically, I was in my own head on the 19th, giving up the day to fight a losing battle with insurance…
Recent posts

I accidentally grew up

Without any effort at all, one month folds into the next and summer arrives, gives way to Fall, the leaves disappear and a new year is upon us and in these wrinkles of time, I am nearly 50 years old.  
It came quite by surprise.  There were no inspirational talks I can thank for getting me to this nigh on chronological milestone.  No quotes hanging on the walls of my room, reminding me to grow and grow up. Perhaps you could say... 
"It was one of the best days of my life, a day during which I lived my life and didn't think about my life at all."  Jonathan Safran Foer.
So, it just happened.  I grew up, quite by accident.  I grew into this middle aged woman with silvery strands of white hair and I thought the other day, how very strange this is.  I scarcely remember how I did this, yet here I am.
As I wring my hands and pace the floor in anticipation of what is next, I read the scraps and memos of scrawled out notes, reminding me to be happy.  Find Joy in the Journey, one …

The Anticipation

It's like Christmas around here as we wait for insurance to determine the fate of Sam...

It's not exactly like Christmas because there are no Jingle Bells, no gifts, no treats but there is a sort of anxiety and sleeplessness that has ruined the last few nights.  His counts are just so low!  He isn't running a fever so that is our only saving grace at this point but the second he does, they will put him in the hospital. For now, we have come to an agreement that Sam will go on an outpatient basis to get transfusions and Neupogen- the drug to coax his marrow to push out a few good cells.

 I couldn't figure out why our insurance denied the treatment Sam needed last weekend until the Specialty Pharmacy called yesterday.

They apologized for not being able to get anything authorized because the only way insurance would cover it, is if it was done inpatient.  She kept talking about Remicade as the drug in question.  I finally questioned her on why they were trying to authoriz…

Father's Day and Such

Today has been a big day.  Well, of course it's Father's Day and that's big!

 I'm grateful for good parents; a great father.  I'm grateful my dad has been faithful, wise and loving.  He has set an example for me and my kids of faith and charity.  Growing up, he was always helping others and doing wonderful things the money and talents he has been blessed with and without a doubt, his family was on the receiving end of this kindness.  I'm mostly happy that my kids have such a man to look up to.

And these days...good men are hard to come by.

I'm also grateful for my sons who are growing up to be faithful, good men.  They struggle but they hang in there.

Today, also marked the 13th anniversary of my divorce.  It's so hard to believe that I have been doing this single mom gig for over a decade.  13 years ago, I had no hope for surviving my singleness.  I had no hope that I could amount to anything let alone take care of my family.   I often thought, back th…

A Bridge Too Far

I drove home from the surgeon's last night thinking about the boundaries of life.  What they are, where they sit and how we determine them.


I have to have surgery on July 2. I don't think it's going to be a big deal but it's surgery nevertheless.   He will make a 1 1/2" incision on the top of my hand and take out a solid mass that has grown in the joint of my wrist and under the tendons.  It's creating constant pain, swelling and loss of function in my hand.  I asked him if there was any other possible thing I could do to avoid this but there isn't.  It's been a bother for almost two years.  For two weeks, it will be immobilized and for another 4-6 weeks there will be some "difficult" nerve and tendon pain as I retrain my hand to work again. 

As we visited about this procedure, I asked him if I could do it awake?

It was shocking to hear myself say that...He is going to open up my hand, dig around the tendons and all those nerves and I am req…

Dips and Drops

5 years ago, next month, the kids and I headed to Florida for Sam's Make A Wish.  His wish was to ride the largest roller coaster in the United States.  I'm not exactly sure where that is but they sent him to 5 of the top amusement parks in Florida so he could ride every single roller coaster.  
I do not like roller coasters.  I can't imagine anything worse than riding a roller coaster so I had some concerns about this trip.  One, I had to drive us around Florida.  Two, I didn't want to ruin Sam's Wish by watching from the side.  Once we got to the first park, Universal Studios, and I had the Minions ride under my belt...I noticed that there were small signs at the entrances that described the ride; if there were drops, and how high, spinning, dips, loops...after reading about the terror, you could then decide if you wanted to engage in the paralyzing anxiety that accompanies the ride. 
The only problem with this, was that because Sam was a Wish kid, we all got to …

Enduring...Moving On

Last night, while Sam and his girlfriend built a blanket fort for his little sister, (my Wasband's little 5 year old who I babysit on occasion...and she calls me Kat...I know, it seems weird but I try to be a peacemaker so my kids can build strong roots with her and she's adorable...so it's a win!)   I went through my old drafts folder from all the things I've written that never made it to the blog.

 This is a journal entry from a year ago that I archived but somehow it still fits.

"I could endure, but I could not move on." She wrote.

This, from a girl whose entire family died in a carbon monoxide accident while she was serving a mission for our church. She doesn't write often on her blog anymore but this struck me as feeling familiar. 

Am I in the same place?

It's hard to see any progress in the day to day.  I like to think I'm going somewhere but I also think I often sit on a throne of lies and denial.  Enduring implies a positive thing; to bea…