Don't Assume

Hello my bloggy friends...


Looking at the date, I realized I have been quite remiss in my blogging lately.  I have been feeling mostly pretty good (except for that little bout of pneumonia that popped up New Year's Day) and have been super busy working on "rebranding" my little corner of Etsy.  Oh and there was the little matter of a certain blonde turning four and entertaining what felt like the entire preschool at his birthday party.  Seriously, who has 65 people at a four year old's party?  Outside, in the winter (or as wintery as we get.)  But I digress...that is not what I logged on to write about. I have a story, two stories to tell you, that I just couldn't keep to myself.


Warning:  The rest of this post is funny.  I think very, laugh out loud, funny.  You might disagree.  It also might shed a little light on some of my weak parenting moments.  Sorry...not sorry!


So the little one (the aforementioned four year old) and I were running errands this morning.  Those of you who know him know that he is adorable and charming, frighteningly bright, and quite devious and sassy.  My Gram would have called him downright naughty (and she would not have been wrong!)  He reminds me a lot of the stories she used to tell about my father from when he was a naughty little boy. 


Got through our first errand just fine, then headed to Target.  Usual routine, popcorn and drink as a bribe to sit in the cart, run through the dollar spot (not called that anymore since they introduced $3 items...humph.) and then off to the rest of the store.  We really only needed a few things and I promised him we would take pictures of new car seats so we could 'search (J speak for research) them.  (Yes, he is big enough to move into a booster seat.  Sigh.)


So apparently I wear a big sign around my neck that must read "Please make assumptions about me."  And apparently everyone shopping around me feels that they must.  This is a part of my more recent history.  (Those of you who don't know my meth head/crack whore story, go read this post: http://sparklesandspitballs.blogspot.com/2015/09/the-ghouls-are-already-outbut-so-are.html   )


Here is today's assumption...

J and I finished taking the pictures he wanted and I said to him, "Okay, let's go get some girl stuff."  This young mother was passing me as I said that and she leans over to me and says, very politely (for someone assuming something about me) "You know Ma'am (Ma'am, really???), it really isn't fair for your child for you to force your gender expectations on him."  I said, very politely, "I'm sorry, I'm not sure what you are talking about."  "I just heard you say that you were going to go find some girl stuff.  That is forcing your gender expectations onto him and he might not be comfortable with it."


At this point, it is taking everything in my power not to burst out laughing.  "I understand that," I said, "but what would you call pads and tampons?  I am very comfortable with fluid gender expectations...you are looking at a child whose counts a pink dollhouse among his favorite toys.  It's just easier to call the feminine hygiene products girl stuff and leave it at that."


This poor young woman is now completely beet red and is stammering for words to apologize.  "It's fine," I said, "I'm not upset, but please don't assume things about other people without knowing the whole story.  It will get you into trouble everytime."  At which point, the little blonde in my cart, mouth full of popcorn, says, "Yeah, don't assume.  You'll be in trouble."  So sassy that one is!  The young mom slunk away and when I saw her in another part of the store later, she wouldn't make eye contact with me.  I'm guessing she won't do that again!


Story #2, this one is short and sassy.  We checked out and were leaving the store and there was an older lady walking behind us.  Now, everyone talks to this child of mine, so it wasn't a surprise when I heard her say hello to him.  But then she says "Are you having fun with your grandma today?"  SERIOUSLY???  Before I have a chance to even say a word, J says (imagine a sassy 14 year old coming out of this four year old's mouth to get the tone of his words) "That is not my grandma.  Does she look like my grandma?  No. She is my mom, she doesn't look like grandma at all.  Duh." (If he could have snapped in a z formation, he would have!)  I said, stifling the urge to high five him, "Now, J., that wasn't nice.  You have to be polite." (I know it wasn't convincing because he immediately started giggling!) I turned to her, said "Have a lovely day!" and walked away.  By the time we got to the car, I was laughing so hard I could barely stand up.  Of course, now J. thinks he is just the bees knees and I'm sure I'm going to pay for it later when I really do expect him to be polite and respectful, but for now, I'll take "Duh!" as the answer to the grandma question anyday!


That's it for me today...Mom and I are headed out to see Idina Menzel in If/Then this afternoon so I have to go get all fancy.


Have a lovely (I really mean it!), sparkly day!


Love and sparkles to you all,
Gayle


P.S.  New items for Valentine's Day hit my shop today...go check them out!  I think they are super cute (but I might be a bit biased!!!)  G.

A Very Happy New Year!

Here it is, the last day of 2015.  I have never, ever been so glad to see a year end.  Usually, we celebrate New Year's Eve, we watch the parade New Year's Day and that's it, everything goes back to the way it was, nothing is really very different.  But this year, the turning of the year on the calendar just means so much more to me.  2015 was pretty hellish, to say the least.  But I made it.  And now I really, truly get to put it all behind me.  I am starting 2016 with a smile on my face and in my heart.  I feel like I am beginning the rest of my life.  (Wow, cliché much???)


Being home with my kiddos these last two weeks, I have realized that Steve and I (mostly Steve) did a really good job shielding the kids from the worst of what was happening.  We had some conversations this week that showed me that they understood what happened, they were a little worried, and now they aren't.  Now I'm just mom again.  Not mom who is sick or mom with a trach, just plain old mom.  They know things are different, that I have to rest more, I can't really yell (seriously not disappointed by that one!) and I still have a tube that I get food through.  But none of that matters, they aren't phased by it one bit.  I am so thankful for that.


I've been thinking about resolutions.  I've always been a big resolution maker...and breaker, sometimes on the same day.  My resolutions have always been about losing weight or getting healthy or being more organized (might not give that one up!)  And I don't just make them in January either.  Ask Steve...I am famous for what we dubbed "Self Help Saturdays" where I would decide on a new diet or eating plan for us.  Sunday we would shop, Monday and Tuesday I would cook, and by Wednesday it was all out the window.  I have done this more times than I can count.  I resolved I was going to exercise everyday and then the second day it rained, so I couldn't possibly take a walk and that was it, I was done.  So this year, while I'm still making resolutions, they are of a very different ilk.


First resolution...treat my body well.  My poor body has been through a lot.  I have been poked and prodded, cut and sewn, bruised and scarred, and burned from the inside out.  It's a lot for one little body to take in a year.  Through the course of the year, I have lost a little over 100 pounds.  (Those pounds were the reasons for all those self-help Saturdays.)  Not the most ideal diet, by any means, but I take this weight loss as my silver lining to this whole darn thing.  This weight loss is so good for me in the long run, I intend to respect my body and the work it has done for me this year, and be good to myself.  That means eating well and moving more, both at a slow and comfortable pace.  And listening to my body as well.  Listening when I need to rest and paying attention, very close attention, to anything that might be just a little out of whack.  I will check the girls, get my mammogram (I'm behind a year, but I've had a few other scans!), do any other tests and screenings I need to do.  (And just know...I will be a nudge...if I'm getting screened for things, you know I'm going to be bugging all of you about your screenings too.  Just because I love you!)


Second resolution...listen to my inner voice and trust it.  I've realized this year that the little voice in my head says some really smart things and I should really listen better.  I have spent my whole life ignoring my own voice and following whoever talked the loudest.  Not any more.  I have to trust myself.  If I am going to build this blog, my business, a future for myself, I have to follow my instincts and trust my gut.  I'm going to make mistakes, I'm sure of it.  But that's okay.  As long as I am true to myself, it will all be good!


Third, and probably most important resolution...I'm going to be.  Be healthy, be kind, be loving, be thankful, be in the moment, be happy, be me.  I'm going to live this year with everything I have.  I'm going to embrace moments I might have let go by before.  Even those moments that don't seem worth celebrating, I'm going to be in them.  I'm going to put down my screens more and connect with my people (making them put down their screens won't be easy...but oh so worth it!)  I'm going to listen with my whole self instead of trying to do ten things at once.  Sounds simple and totally complicated, all at once.  I'm looking forward to seeing what comes out of it.


So, there they are, my new year's resolutions.  Are you making any this year?  What are they? 


Happy New Year to you, my village.  You already know how I feel about you, but I will say it again anyway...I love you and I am so thankful you are all in my life.  You helped me make it through my year of hell and now I look forward to sharing all the sweetness of the new year with you.  Big hugs!!!!


With much love and lots of new year sparkles,
Gayle


Talk to you in 2016!!!

Oh Happy Day!!!

I started this post at 3 a.m. this morning.  I was all snuggled in the corner of the littlest one's bed, listening to his breathing, wondering how long it would take his brother to realize I was in the bottom bunk. (He never did!)  I just couldn't sleep. 


One year ago was my surgery day.  The true physical beginning of this journey.  As I lay curled at a very awkward angle around the boy, I was remembering back to the same exact time that morning.  I was laying in my own bed, awake, willing time to stop.  I had no idea of what was coming for me, I just knew I didn't really want any part of it.  I was trying to figure out a way to just run away, avoid it.  But there was no getting away...this beast was inside of me and the only way to get it out was this surgery.  It was not a good morning.


This morning was a very different story.  I was in my happy place.  These boys, their sister, tween that she is, the hubs...they are the reason I didn't run away.  They are the reason I made it through those dark days in the hospital, through all the radiation and the yuck that followed it.  I found a very peaceful place in my journey this morning, and it was a very good thing.


Fast forward to later in the day:  last week was my trach removal and today was my follow up.  I thought it so fitting that I would have this appointment on this anniversary day.  My doctor, my hero, walked into the room all smiles and said "This is it, this is the appointment we have been waiting for."  Never have truer words been spoken.  For a week now I have been taped up, coughing a lot at first, then less and less as the days passed.  As he removed the tape, he was all smiles.  Healed, closed, the horrible, awful, bane of my existence trach was gone for good.  No more hole in my neck.  His comment about it..."Your body really wanted that trach out!  It was ready!"  Abso-damn-lutely!!!  I have to wear a bandaid over it for the next seven days, but then, that's it, I'm done!  Unless of course, I hate the scar so much I want him to revise it.  Very, very doubtful!


(Before I tell the rest of the story, here is the funny for the day.  The two big kids had doctor appointments just before mine and Steve had joined us, so we were a full house.  As the nurse was checking me in and discussing how I was feeling without the trach, my darling D., who maybe doesn't always pay attention to what is going on, says "Oh hey...your trach is out!  That's cool!"  Yeah bud, it's only been a week.  Way to notice!!)


So after that happy appointment, I had treats to deliver.  I had already left cookies for my doctor's staff, just as a small thank you for the hard work that they do.  Now it was time to head upstairs.  It was important to me to thank the nurses who took care of me while I was in the hospital.  I don't have many memories, and none of them fond, of the ICU nurses, although I'm sure they were wonderful.  What I do have is enduring memories of the care the nurses in the unit gave me.  At my very worst, they were there for me, some of them holding my hand along the way.  Of course some were better than others, that's true in any profession, but for the most part, I really felt like the nurses who cared for me were amazing and compassionate and calm, even when I wasn't.


As we walked down the hallway to the unit, we passed through the waiting room where families were sprawled all over the couches and chairs, waiting for any bit of news from the operating rooms.  Steve told the kids that was where my crew waited all those long 11 hours during my surgery.  At the time we were walking through, I would have only been about halfway done.  I got a chill as we walked by.  Then into the unit I went, big box of sweet treats in hand.  I explained to the nurse at the desk that I just needed to drop the treats off to thank them for everything they had done.  I knew my nurses weren't necessarily there, and that was okay.  I wanted all the nurses (and the CNA's...I mustn't forget the CNA's!!!  Their job is crucial too!) to know that their work meant the world to me.  The nurse asked which room I had been in and I honestly couldn't tell her.  So many parts of those days are still very fuzzy.  It didn't matter though.  This was the closure I needed.  She was genuinely touched that I had thought to bring them treats on my anniversary day and wrote my name down, promising to find my nurses and pass along my thanks.  It was a brief interaction, but it meant so much.


When we got downstairs, I immediately recognized a woman in the lobby as the Child Life Specialist who had spent hours with me while I was in the hospital, helping me formulate a plan for reconnecting with my children when I got home.  She was the one who gave me the idea to take the pictures of my different surgery sites to show them where they could touch me gently and where it would be painful.  That made all the difference to us and the boys still talk about how they knew they couldn't touch my arm because of the ugly picture, but now they can because it is just me and it doesn't hurt.  So I marched right up to her and thanked her too (I was kind of sorry I didn't have another cookie with me!)  I told her that I thought she had an incredibly important job and she was really good at it.  I know that she was touched, but really, it meant everything to me to be able to tell her that!


So that was it...my very happy day!  I wasn't sure how I was going to feel today, but honestly, through all the reflection, I am just simply happy.  I know there are going to be hard days ahead.  I'm not done with everything.  There are things I will be dealing with for the rest of my life, side effects from the surgery and the radiation, but now I know there isn't anything I can't handle.  I am resilient, I am strong, I am a warrior!


Oh, one more thing.  I have posted very few (almost none, I think!) pictures on this blog.  It has not been pretty.  There are pictures from this year, but none that I want to look at regularly.  Originally I thought I would post them, but I just couldn't do it.  It was too painful for me.  That changes today!  I'm no selfie expert (apparently I need some selfie tutoring from my daughter) but I wanted to share a couple of pictures.  My neck is free and clear and something to behold!  And the scars, the scars I worked so hard to earn...they are so much smaller than I imagined. Not going to have a problem rocking them at all!  So here goes...the big reveal!






 Here I am, neck all out in the open ( I keep feeling phantom trach straps!) but scar covered up.

And here I am, all exposed to the world!  Not nearly as bad as I imagined.



So that's it for me today.  I'm excited and happy and think I should go get some crafty, creative stuff done for the new year.  And also figure out this adding pics to the blog thing, because this was not how I intended it to look!



Love and sparkles to you all,

Gayle



Eleven Months, Three Weeks, Two Days...But Who Is Counting?

Eleven months, three weeks, and two days ago, I went into the surgery that would save and dramatically change my life.  I went in with the knowledge that during the surgery, I "might" be getting a trach put in, but really, I would only need it for a month or so, while I recovered.  Here's what I have learned about cancer:  nothing ever goes as planned.




Eleven months, three weeks, and two days ago my trach went in...and today, finally, it came out.  (I'll pause here for the applause and cheers!!!) 




I was anxious heading to the doctor today, knowing that he was going to torture scope me, and figure out if today was the day.  I had been here before.  There was that day in April when I thought it was coming out, but the decision was made to leave it in for radiation.  There was another appointment in July when I was sure he was going to take it out, but alas, I was mistaken.  And so I waited...and waited...and waited.  I followed directions and did what I was supposed to do.  And still, it stayed.  Nothing EVER goes as planned. 


Sensing my frustration a few weeks ago, my hero doctor decided to torture me in a different way and put me on Prednisone, in an attempt to get the swelling in my airway to finally, finally go away.  While the side effects of the Prednisone leave a lot to be desired (seriously...have you ever heard the molecules in your body moving?  All of them?) I can't argue with the results.  Within a few days I was eating (a little) more, tolerating the cap in my trach longer...this stuff really works!  By the end of the 15 day course of treatment, I was using the cap for a full 24 hours at a time, all day and all night.  That was the requirement for trach removal.


That brings us to today.  First the scope...big thumbs up (still a little swelling, but not enough to bother with the trach anymore) and then it took him about 5 seconds to take the darn thing out.  I had built this up in my head to be such a big moment...and it was over before I could blink!  No stitches, just a few steristrips to close up the hole (which Steve did take a picture of...however, I don't think that is a pic that will ever see the light of day!) and then he spent a few minutes showing my darling husband how to tape me up.  The whole thing was a bit anticlimactic.  Which I suppose I should be thankful for...given that there were an awful lot of really exciting but not pleasant moments this year.


I thought I would be dancing and celebrating tonight...and I am, in my head.  But the reality is, having a trach for very nearly a year means my body has some adjusting to do.   This is almost the last hurdle (feeding tube is next...) before I can really say I am done with this whole thing.  The important part, even if I'm not quite ready to celebrate it, is that I made my goal.  I was determined to get this thing out of me before I hit my one year surgery anniversary.  Eleven months, three weeks, two days...okay, so I like to cut things close!


All the complaining I did this year about my trach, I do have to give it a little credit.  It kinda sorta kept me alive during this whole ordeal.  Without it, there would have been very little breathing.  So, I guess I have to put the trach in my thankful column.  Thankful that it existed to keep me breathing, thankful that I am healthy enough to not need it anymore.  It's a win-win in my book!


One week from today, I go back to my doc so he can check to see how the hole in my neck is closing.  One week from today is the one year anniversary of my surgery.  One week from today I can check that anniversary off, mark it done and move on.  And I can delight in the return to normalcy around here (at this moment my youngest is marching around in jeans, no shirt, and one sock...yep, things are definitely getting back to normal!)  But I'm not making any big plans.  I'm going to take things one day at a time, savoring each deep breath. 


Love and sparkles (and delightful deep breaths the nontrach way!),
Gayle


P.S  For those of you still cheering and applauding...you can stop now!


P.P.S.  For all of my peeps who just finished Chanukah...congrats and Happy Chanukah!  I hope your candles danced brightly and you shared latkes with all those you love.  For all my peeps who are getting ready for Christmas, I wish you a peaceful, love filled holiday.  And for the peeps who celebrate something else...Happy Holidays!!!


(And for all of you who are still cheering and applauding...it's okay to stop now!)

One Year Ago...

I am struggling to write this post.  I don't know why, but I am.  I have been writing it for weeks, deleting and starting over. Even as I start this on a fresh, clean page, I have another post, almost complete, sitting in my list of drafts.  I guess it is kind of fitting, starting over on a clean page.  I've turned to a clean page in my life as well, starting all over again as a new me, changed in so many ways.


One year ago, my life, my family's life, was turned upside down.  My diagnosis of squamous cell carcinoma of the tongue hit us all hard, each in their own way.  We struggled to understand what this was all going to mean, to figure out what was going to happen.  I read articles and studies, first hand accounts and medical notes, and quickly got overwhelmed by the horror stories and pictures.  I was numb at first, and then I cried, a lot.  But I had Steve to lean on, and all of you, my village, and I started down the path.  One foot in front of the other, one day at a time.  I had my highs and my lows, a lot of lows.  I had absolutely no idea how hard it was going to be. 


I'm not going to revisit or recap all the details of the last year.  I don't need or want to, and I'm sure you don't want to hear all about it again.  It was hard but I made it, we all made it.  A little beaten up and road worn, but we are here.  But things are different now.  Cancer changed me in so many ways.  It changed my physical self and my emotional self, my personality and my identity.  I'd like to think it changed me for the better, the new improved me.  Gayle 2.0


Physically, the changes are obvious and dramatic.  Literally from head to toe.  From cutting my hair short to losing so much weight that even my feet are shrinking.  I have scars that weren't there before, big scars, that in another life I would have tried to hide, but now, I wear with pride.  I earned these scars, I'm going to show them off.  I am wearing a size I haven't worn since my freshman year of college, no longer hiding behind shapeless clothes.  And of course, I have a tongue that doesn't look like anyone else's, one that doesn't work like anyone else's.  I'm learning how to breathe again, how to swallow, how to speak.  I sound different.  Last night Steve was watching an old video of the littlest one.  I was taking the video, so you can hear me, but not see me.  Steve had to ask if that was me talking because that voice doesn't exist anymore.  The voice I hear when I speak is foreign to me, it sounds strange and unfamiliar.  Not bad, just different.


I didn't expect cancer to make me more confident, but it has.  Cancer showed me that I don't back down from a fight, no matter how tough the opponent.  Many people said things to me like "I don't know how you do it" or "I don't know how you keep going" and my answer was always the same.  "I don't have a choice...the alternative sucks."  It gave me the courage to step completely outside my box and start a business.  Before, I never would have tried, too afraid of what people might think if it didn't go well.  Not worried about what I would think of myself, but always concerned with other people's opinions.  Now, I'm proud to say that my opinion matters to me.  Only took me 43 years, but I got there!


Cancer changed my identity.  I have been a teacher for 18 years.  That's a long time.  I think like a teacher, talk like a teacher, hoard like a teacher.  I live and breathe early childhood development and play as work for my kids.  And then with one rogue cell, I stopped all of that.  I left my classroom to go spend Thanksgiving week with my family and I haven't been back.  It's been a year since I have taught a lesson, done yard duty, met with parents.  I don't know what the future holds, whether I will be able to return to teaching one day or not.  I do know that I will not be going back this year.  So I have been forced to explore a new identity, a new me.  I don't know what to call myself.  Am I a teacher out on leave?  A stay-at-home mom with a home business?  A small business owner?  A cancer patient?  A cancer survivor?  On different days and at different times, I am all of those things.  I'm learning to be more fluid, more go with the flow, more roll with the punches.


In many ways, this past year has made me less patient and tolerant.  Less patient with people who thrive on drama and less tolerant of people who are just in it for themselves.  It has given me a laser focus on what is important and what is just b.s. and I have no patience for the b.s.  And no tolerance for people who insist on flinging it wherever they go.  I would like to think that I am more empathetic and less judgy, more easily approachable and less closed off.  And better willing and able to see the humor in just about anything.  My sense of humor may be a little skewed now (you wouldn't believe some of the things that have sent me into total hysterics) but I don't see that as a bad thing. And I know that I am so much more grateful than I was a year ago.  Grateful for the big and the little and everything in between.  Grateful for forward progress, even if it is measured in baby steps.  Grateful for medical technology and low tech snail mail that brought the most wonderful cards in my darkest hours.   Grateful for stinky little boy hugs and kisses and the occasional tween approval.


So, one year ago, my life got turned upside down.  Was it horrible?  Yes.  It is something I really wouldn't wish on my worst enemy (I don't actually have an enemy, but still...)  But do I regret it?  No.  Not at all.   Cancer brought me to a new and different me, hopefully a better me.  It brought me new opportunities and adventures.  It brought new people into my life and helped me weed out the ones who weren't right for me anymore.  And it brought me so much friendship and love.  I'll take it.


Love and sparkles,
Gayle

Getting Back to Busy

Wow....can't believe it has been almost three weeks since I last posted.  Time flies, and all that, right?


Happily, I have been busy.  I have been creating and photographing and editing and writing listings for my Etsy shop.  It's a lot to learn, much of it way outside my comfort zone.  It's fantastic!  Social media is the part that is proving to be a challenge to me...Pinterest I can do, Facebook I can do.  Instagram and Twitter, not so much!  But I'm reading and learning and trying...and probably making a lot of mistakes, but I'm okay with that. 




I'm always at my best when I am busy.  BK (before kids), Steve and I always talked about how busy we were.  We really, really had no idea.  We were busy going out to dinner and seeing movies and sleeping in on Saturday (and Sunday!) mornings.  I was a new(ish), young(ish) teacher and spent tons of time in my classroom and Steve was working lots of long hours.  And then the girl arrived.  And suddenly we were busier than we could ever have imagined.  We looked back on those pre-child days and wondered why we ever thought we were busy.  And then the first boy...and our lives got busier.  And then the second boy made his way into the world and it was as if we didn't have a minute to spare.  Our lives were lived in the car, running from place to place.  There was always another errand to run, chore to complete, birthday party (or parties) to attend.




And then cancer happened.  Full screeching stop.  Well, full screeching stop for me.  Steve, on the other hand, he was still busy.  So over the last many months while I have been at home recovering, I have watched busy happening around me, but I haven't been participating in it at all.  I have watched from the sidelines, hoping the coach would put me back in the game (funny, a sports metaphor from someone who hated playing sports!!!)  It has been a true delight over the last two months or so, since I really started feeling like rejoining the human race, to step back into the busy.  But I really only stepped back in with one foot.  Mornings are difficult for me as I am more swollen then and it takes a while for me to really start feeling good, so Steve manages mornings most days on his own.  Usually about the time the four of them are ready to walk out the door, I am about ready to get started with my day.  And then when they are gone, when the chaos of getting three kids to school subsides, I am left in an empty house, just me and the dogs.  For a long time, I didn't know what to do with myself.  I wasn't used to alone time, to getting to decide what I do and when I want to do it.  I'm used to structure and a daily schedule.  I binge watched shows and binge read books (I think at one point I had read 30 books in less than a month) and obsessively stalked Pinterest.    But I was totally bored.  And then my Etsy idea happened and suddenly my days had a purpose and I was busy again.  Yay! 


But, as in all things this year, I am learning as I go.  I am learning that I just don't have the energy to do all the things I want, when I want.  I have to pace myself, I have to pull back and say no, I can't do all that in one day.  These are things I am not good at.  I'm not good at saying no.  (Well, except to my kids...just ask them!)  So, I am trying to be good to myself.  I am trying to listen to my body when it tells me to stop.  I'm trying to be kind to me, the person I am hardest on, always.  Some days are not going to be perfect, they are just going to be good enough.  And that is going to have to be okay, for now.


In other news, I did see my doctor a couple weeks ago and he was finally able to scope me (and by scope I mean stick a camera up my nose and down my throat...really my favorite thing in the world to do!) and actually see my vocal cords.  Those darn cords have been obscured by swelling since my first surgery way back in December.  So, what does that mean?  It means that my airway is no longer blocked and we are making a plan to remove my trach.  He gave me permission to start capping the trach, which basically means putting a different tube into it than the one I usually wear.  This one has a cap on the end which does not allow any air to move through the trach.  Essentially it forces me to breath without the trach.  When I can be capped for 24 hours, meaning I have to sleep with it in, he will remove the trach completely.  Yay!  But here is the problem...it's been two weeks and so far I am only up to an hour, total.  You all know I want this trach out more than anything.  I have certainly whined about it enough on this blog!  The issue is that when I put the cap on, it is extremely claustrophobic, if that makes any sense.  My speech therapist likened it to learning to snorkel (which I won't do because the idea of it makes me claustrophobic...are we seeing a pattern here?) and learning to coordinate your breathing.  I know in my head that I can breathe, even with the cap on.  But I still can't push myself past that hour.  So here I go again, learning to be kind to myself, not to beat myself up for not being able to do the full 24 hours on the first (or second, or third, or twenty-seventh) go round.  I know that eventually I will get there, that I will not have this trach forever.  I just have to be, you guessed it, patient.


While breathing without the trach is proving to be a challenge, swallowing is moving along nicely.  I went from only being able to eat thin soups a few weeks ago to now being able to eat small amounts of mashed potato consistency foods, as long as I have a sauce of some sort to help them go down.  My big moment this week was eating half of a scrambled egg...it was the best egg I have ever eaten in my life!  Chocolate continues to taunt me (all that beautiful Halloween candy) by just tasting like dirt and all sweets make my throat hurt, but I can taste coffee, so all is not lost.  I am hopeful that my taste buds will come back...I have a lot of recipes pinned on my Pinterest boards that I am dying to try!


Enough about me, it's time for a little kid bragging. Those of you who know us well know that my girl E is a dancer.  She lives and breathes dancing.  When she was four, I took her to see our studio's production of Cinderella, with the TA from her combination tap/ballet in the starring role.  (That young girl is now one of E's favorite dance teachers!)   At the intermission, E turned and looked at me and said, "Mommy, that's what I want to do, I want to dance on my toes."  Well, fast forward 8 years, more ballet (and tap, jazz, lyrical, contemporary and tumbling) classes than I can count...and she is about to realize that goal.  She worked incredibly hard this last year and really pushed herself as a dancer and as a result, she was invited to go on pointe.  Early tomorrow morning we will meet her ballet teacher at the dance supply store and she will be fitted with her very first pair of pointe shoes.  She is floating on cloud nine and is absolutely beyond excited.  Me too, but for a different reason.  E has always been that kid who decided on something and then never changed her mind.  This was no different.  She set a goal (as a four year old!) and nothing was going to deter her from that goal.  I am so proud of her for achieving this!  She also decided sometime in the middle of last year and all that was going on, that she wanted high honors in school (all A's) and she went for it and achieved it.  This school year is proving to be no different...at her parent teacher conference, her teacher pulled up her grades and not only did she have all A's, she had a couple A+'s.  Wow!  I am putting all this praise down here in public so that I can come back and reread it on days when she is being a true tween and is making me want to pull my hair out. 


I can't leave the boys out of this love fest!  D just finished an after school art course and he surprised all of us.  Some of his pieces are just phenomenal!  He is becoming quite the reader (even though he will tell you he can't read...goofball) and math is totally his thing.  He gets math concepts faster than I ever could and I am sure his math skills will leave me in the dust pretty quickly.  He shows great skill in making his sister crazy, as well.  Me being sick seemed to be harder on D than on either of the other two kids.  He was in quite a funk for a long time but I think we are finally on the other side of that.  He is still my most sensitive kid, but I think a lot of that just has to do with who he is, not so much our situation anymore.  I was so proud of him the other day...I went to go pick him up and I was talking to the daycare director and out of the corner of my eye, I saw him talking to another little boy, who I know was asking about me because he kept putting his finger on his neck, just like I do to talk.  Daniel very matter of factly told him that I have to cover the hole in my neck so the words will come out, otherwise it would just be air and nobody could hear me.  I asked him if it bothered him that I was sick and I looked different and all his friends had questions.  He said, "Mommy, you don't look different, you just look like you.  And I can answer questions because I am smart."  I heart that boy so much it hurts sometimes!


J is, well, he is just J.  He is smart and funny and we often have to remind ourselves that he is still three because he acts like he is about 25.  He gets frustrated easily because he doesn't want to be little (he is medium, just ask him!) but he can tell you stories that will have you rolling on the floor laughing.  He loves to dance and sing and perform and I am pretty sure he is the kid in charge in his preschool class.  He has a bit of a temper (hello...he is so much like my dad!!!) but is just as charming as can be most of the time.  And quick...he is so, so quick.  His logic skills are going to get the best of me, I am sure of it.


Okay, I really think that is enough for now.  Hopefully I will be back on tomorrow sharing pictures of the pointe shoe fitting and maybe I will even figure out how to link some product pictures back to my shop.  Until then, I just added a whole bunch of new stuff, so use that button over there ---> somewhere and head to my Etsy shop and check me out!


Be well!


Love and sparkles,
Gayle

Changing Perceptions...My Own

Note:  I wrote this post on Monday.  Due to technical difficulties (do not get me started on the Wi-Fi issues at my house...argh!) I am just now posting it.  So pretend it is Monday morning when you are reading this...


2nd Note:  Thank you to all of you who have visited www.sparklesandspitballs.com and checked out my shop.  I appreciate all your support.  Things are coming along nicely and I am enjoying myself immensely.  If you haven't checked it out yet, please do!


Okay, now on to the regularly scheduled, but really late, post:

I have never been the most confident person.  I can’t walk into a room full of people I don’t know and just start talking to people. I was painfully shy as a young child and even now myself to be relatively introverted (I said relatively, for all of you who are chuckling at that one!)  Sure, as a teacher I am more than willing to put myself out there…I sing, I dance, I act silly, anything I can do to make learning fun for my students.  But take me out of the classroom, I’m always afraid people are watching me and judging me.  I was always the cautious child, I didn’t really take risks and I certainly wouldn’t try anything new unless I knew I was going to be successful at it.  What would people think if I tried to do something and failed miserably?  It was easier not to try.

 When I hit my 40’s, that fear started to diminish.  I started realizing that I had spent 40 years worrying about what other people thought, valuing their opinions of me more than my own.  But even still, it was hard for me to come out of my shell, to put myself out there and talk to people I didn’t know or try something I had never done before.  And then came my diagnosis.  Suddenly I was in a whole world that was new and risky and really, really scary.  I had doctor’s appointments and tests and I had to advocate for myself, which I had never had to do before.  And once I had my first surgery and I wasn’t able to talk for months, I had to do all that nonverbally. 

I won’t rehash all the details of what has gone on in the last ten months, those stories are all in previous blog posts.  Suffice to say, it has been a journey to find me.  For many months I felt lost.  In the last few weeks, since I made it through those first three months post radiation and then got my all clear, my new birthday, I feel like I have become a new person.  I am more confident than I have ever been in my life.  I am putting myself out there, taking leaps that would have paralyzed me before.  I went through hell and I made it through and I am better because of it.  Of course, I wish I had been able to get through to this new me without the pain and the disfigurement and the fear, but I don’t think I could have.

This past weekend was my 25^th high school reunion.  I know I talked about it before, when I was deciding whether I was going to go or not.  Eventually, I made it my goal.  I needed to get myself feeling well enough to make it to the reunion.  And I did.  I went to the reunion and had the most amazing time.  But it is the months leading up to the reunion that have been the most important to me.  I have made connections with people that were unexpected and are so special. 

In high school, we all fell into niches.  We found our group of friends and it was the rare person who could comfortably move between those groups.  I was not one of those.  I had my group of friends that I was comfortable with, those who knew me well and who I could be silly and out there with and really just be me without fear of judgment or derision.  I knew who the kids in the other groups were, but never went out of my way to befriend them, and they never approached me either.  I didn’t dislike them, I just wasn’t comfortable stepping outside that comfort zone.

In preparing for this reunion, I connected with one of the women who was organizing it and we started talking.  It was a simple offer to help, to do what I could from behind my computer.  But that one little step brought me to a new friend.  This was someone I don’t think I ever had a conversation with in high school.  I don’t know if we had any classes together, don’t think our paths really crossed.  But suddenly, here we were, texting regularly, catching each other up on our lives, like we had been friends forever.  She sent me regular check-in messages, making sure I was feeling okay, and listening and encouraging me when I wasn’t.  One of the highlights of the reunion was getting to give her a hug…which we did several times throughout the evening.  We live minutes away from each other and I expect that our friendship will continue to grow. 

I started thinking about shifting perceptions during the reunion, as I had conversations with various people.  I talked to people I had never talked to before, not in high school, not at the previous reunions.  And I heard things that surprised me.  I introduced myself to several people and each time I was met with “Oh, I know who you are.”   They saw me, they knew who I was, they wanted to be my friend way back then, but I was so shy, I was afraid to step outside my circle.  I wasn’t as invisible as I thought I was.

Before the reunion, when we were trying to make sure everybody knew about it, I sent out messages to a bunch of people, most of whom I have not spoken to in nearly 25 years.  I didn’t know what to expect.  I didn’t hear back from everyone, which was to be expected.  The people I did hear back from…it was just amazing.  We had these fabulous catching up conversations and I am just blown away by the people these kids I knew so long ago have become.    And to see some of them at the reunion, my heart is just so full!

Even before the reunion, I was shattering my own perceptions of myself.  As you know, I have started an Etsy business.  This is a whole new world for me.  I have been a teacher for so long and I’m comfortable there.  I know what to expect and how to manage my days.  In starting my business I have had to learn to promote myself, to be a little shameless about handing out my card or mentioning my products.  I have ideas that have to be created, tested, refined.  I have new skill sets, like drilling holes in glass (who knew?) and taking product pictures.  Sometimes things work.  Sometimes they don’t.  Sometimes they fail miserably and end up in the trash.  And guess what?  The world didn’t stop turning because I failed.  No one pointed fingers and laughed.  In fact, absolutely the opposite happened.  As I shared my failures, new ideas evolved, new strategies for making my products work, new techniques to try.  I have grown so much in the last month, just from this little craft business.  It has pushed me far beyond what I thought I could do.  A little push outside that comfort zone is a very good thing.  And a shift in perception, a new perspective on who I am, is also a very good thing.

A little backtracking to something I posted on Facebook last week…many of you know that I have become a part of a group of Facebook that is comprised of various oral, head, and neck cancers and their caregivers.  It is a safe place to ask questions, vent, and celebrate, sometimes all at the same time.  It is a group I go to whenever I need reassurance and to just hear that what I am going through is “normal.”  I don’t know anyone in the group, that is, I have never met any of them personally.  But over the last ten months, I have gotten to know many of them quite well and often relied on them when things were particularly difficult.  One of those people was a man named Jim.  He was just a little older than me, father of two, and had a similar diagnosis and surgeries.  While I was fortunate and only had to do radiation, he needed both radiation and chemotherapy.  I finished radiation about three weeks before he did.  Jim was brash and funny and honest.  And unfortunately, his body was not able to recover from all the trauma it had been through and sadly, Jim passed away last week.  His death hit me hard.  It really shook me to my core.  At no time during my illness did the thought ever occur to me that I wasn’t going to make it, that I wouldn’t be here to raise my kids.  And here was this shocking reminder that things could have gone very differently for me.  His passing made it abundantly clear to me how truly lucky and blessed I am to still be here, to be recovering, no matter how slowly it may seem to be moving.  It made me realize that no matter what the future holds for me, and I really don’t know what that might be, I will be fine.  Sure, it sucks that I’m not eating yet and it sucks that I still have my trach, but none of that matters.  I am still here to hug my kids and kiss my husband and shop with my mother and pester my brother.  I’m here to laugh with my friends and advocate and educate and simply live.  And so, this man I have never met will be with me always, reminding me of all my blessings.  If you are reading this, you are one of those blessings.

Okay, this has gone on long enough today, but before I go, I have a challenge for you.  Think about the longheld perceptions you have of yourself.  Are they still valid?  Do they need an update, a reboot?  What would happen if those perceptions changed, if you took the restrictions off?  Just food for thought…but let me know what you are thinking, I can’t wait to hear!

Love and sparkles to you all,

Gayle