Breaking Before Fixing

They often say in order to move forward, sometimes you need to step backward.  As we approach part one of Andi's BAHA surgery, her soft band Ponto decided to break.  

On the plastic part of the band, normally, there's a metal piece that The Ponto (the hearing device) snaps into.  Looking at the picture, the metal piece has detached from the soft band and is stuck to the Ponto.  The other piece I believe to be a backer to the metal snap on the soft band.  

Can you join me in a chorus of 'you've got to be shitting me!!?'  Seriously.  So... come tomorrow when I should be happily skipping myself back to the office with glee (seriously!), I get to go to the other direction and drop-in at the ENT /Audiologist office and see if they can fix this for us. Meanwhile, Andi's using her over-the-ear hearing aid.  Which, it's funny (in a I'm not laughing sense of the word) -- she totally notices that she doesn't hear nearly as well with it.  When she made the change to the Ponto, I had to show her the difference with a little sound check.  We sat in my car, Sir Valentine, and she sat in the front seat with her Ponto on.  We listened to 1.5 minutes of 'This Is Me' from The Greatest Showman soundtrack.  I had the music cranking, windows up, inside the garage.  After that edition, she pulled the soft band off and put her over-the-ear hearing aid on and we listened to the same 1.5 minutes of the same song, same volume, same setting.  This little experiment showed her the incredible difference in her ability to hear well, clearly, and more sounds than with the old technology.  It really was eye-opening for her.

So, here we are a nauseating five days before surgery, and we will took a step back to the old hearing aid, just prior to starting a permanent journey to better hearing.  

The CHARGE Through The Year Calendar

Five or six years ago, I was debating on how I can contribute to the CHARGE Syndrome education, fundraising and celebrate the kids who fill my heart.  I remember it was a sunny day in Portland, Oregon (a rarity, ...if you ask me) and I went into the ridiculously small upstairs bathroom to give Andi a bath.  I remember the heater vent was making the toilet paper dance and BAM!  It hit me.  I should create a calendar.  Don't ask me how the two are related, ...it's just a memory.

For the previous countless (maybe 13) years, I worked for a publisher representative firm.  My biggest responsibility all year was getting our publisher's calendars into Costco/Sam's/BJ's.  Yes, I was one hand in many making sure that your local Costco was stocked on The Far Side Off-The-Wall, and 25 other licensed  calendars.  It was an awesome job and one I thoroughly enjoyed.  Seeing people clamor for their yearly calendar, and my love of page design, it just seemed a natural fit.  Thus, The CHARGE Through The Year calendar was launched.  I choose 12 of my closest friends in the CHARGE Syndrome community and asked them each if they wanted to submit their child into the calendar.  If so, send me three pictures of their child and write a little diddy about them.  What they like, don't like, things they've mastered and things they are working on.  It was one kid per page.  It was personal and it was awesome.

Only problem with only 12 models... the families and extended families are more likely to buy if their kid is featured.  Therefore, subsequent years have grown.  I believe one year, we had 91 kids participate.  Honestly, I prefer this more simplistic design, as it's personalized, it gives details and it allows the individual to shine.  And good grief, to this day, Laynie is still one little girl who I completely adore.  

In any case, the 2019 edition is almost complete.  I hope to finish it this week and send it off to the printer for instant processing.  I believe pre-orders will cover all the printing costs - so I won't have to cough the money out-of-pocket, which is a big deal. 

Ideally, this would have been completed and printed over two months ago, but my big event just kept me from getting anywhere.  Now that it is complete, I can focus my free-time onto this fundraiser. 

To order your copy:  www.chargecalendar.com

$20., shipping included, and all proceeds will benefit the CHARGE Syndrome Foundation.  

In addition to being a fundraiser for the CHARGE Syndrome Foundation, whom supports the CHARGE Syndrome community, is to educate others on what CHARGE Syndrome is.  I can't tell you how many times the medical community didn't know or asked me to explain it... But in addition to getting just the name 'CHARGE Syndrome' out there, this calendar is ultimately the  celebration of the beautiful children and young adults with CHARGE Syndome. If you could swallow a fraction of understanding of what these different people have gone through, it might make you slow down, pause, and appreciate your own health and wellness -- as well as celebrate the gift of life, and the triumph over obstacles these people have endured and enjoyed.

Lastly, there are a few of our CHARGE Angels included in the calendar.  I think one of my favorite things about the yearly account is the fact that these beautiful children are still included.

So, this is my contribution to awareness and fundraising for the CHARGE Syndrome Foundation.  If you want an incredible collection of glorious smiles, order yourself a copy before they're all gone.  www.chargecalendar.com

Back cover of unused images

Pre-Surgery Anxiety

I'm in a rather thick cloud of denial that Andi's BAHA surgery is less than two weeks away.  When I pause to think about it, my anxiety escalates and I'm instantly thrown back into the dark days of fear and unknown.  

There's only so much denial I can allow, as frankly, after Thanksgiving - it's go time.  At some point I am going to have to deal with all the emotions being shoved down and ignored.  Preferably dealt with before I'm in the waiting room hyperventilating with fear, or in emotional shut-down mode.  The second is more likely.

I recognize I'm keeping myself busy.  Even busier than usual.  Filling my head with any sort of distraction I can find.  When I pause to imagine that this Doctor is basically going to drill two holes in my daughters skull.  I mean, join me in the land of cuckoo, why don't you.  

Yep, fear rules the school when you let that visual in.  This PTSD from our first few years is a feeling I don't think I will ever fully come to terms with.  It changed me.  It broke me.  It fixed me.  It hurt me.  The whole gamut of putting my own life on hold while Dr's tried to save or improve hers.  The sleepless nights of barf-o-rama, leaking g-tube, or the ridiculous amount of appointments, specialists, therapists, feeding clinic, financial death by co-pays.  I mean, is there really any getting over all that we endured?  Unlikely.  I mean, I'm not sitting here harboring a lot of unresolved emotions, but, facing another surgery is bringing back a lot of the anxiety we used to live and breathe.

On top of that.  She's older. She talks.  She knows more. She feels more. She is much more aware.  I think that will make it harder than it was when she was a baby as I didn't really know her yet.  But as she's older, I am even more afraid because she is so much more a part of everything I am.  She is my mini-me as evidenced by the jokes she tried to tell me at lunch yesterday.  Like me, she just wants to make people laugh.  She truly is an amazing little girl.  I'm so proud of her. As her Mom, all I want to do is make sure she's okay. Something broken, I want to fix it.  Something hurts, I want to heal it.  Someone does her wrong, good luck prying me off them.

13 days until we check-in at 6 a.m.  

I am afraid.  I am worried.  I am letting the anxiety percolate and bubble up much like her acid reflux that struck her again today.  So, if we all seem a little edgier, crazier, or even slightly distant -- here's a solid reason why... we've got some serious pre-surgery anxiety going on 'round here.

Andi Rocks Queen

Andi strikes again.  Her 3rd school talent show participation and she nails it again.  

She wasn't scared.  She didn't do all her Freddie Mercury moves, but the ones she did incorporate were awesome!  This kid is just all sorts of amazing.

The Value Of Wit, Charm and Madea

You may not believe it, but I used to be incredibly shy.  I mean, it wasn't even that long ago where I struggled to make eye contact, had trouble speaking up, and was ruled by fear.  Fear of what, ... I have no idea.  Somewhere in Andi's dark days, or the light shortly after, I found my voice.  My voice has only increased as the year's have gone on.  Sometimes it might be too loud, but it's usually in effort of making people laugh.  But in those days when I was told that I had to be Andi's advocate and fight for her, her care, I signed on and assumed the role -- because I had to.  I can't tell you how far up her pediatrician's ass I had to park myself about her leaky g-tube, but I feel I could almost touch his esophagus.  (Sorry Dad, I think it's funny, and we both know it's true!)  In any case, nothing makes me more vocal and tempt my lioness roar when I hear a little shit is picking on my girl.  Oh yeah, today's after-school care report was that there was an incident where this little shit was making fun of Andi, and her lil' cohort joined in on the taunting. Apparently, they kept telling Andi she was annoying.  I've asked Andi repeatedly if they said anything else - but she said no.  I'm pleased to report that my kid did not Madea those lil' a-holes like I would have wanted her to - but told them to stop.  When they continued, she told the teacher.  

I applaud her and told her she did everything right.  However, this is the age where kids start to notice differences, and I worry that any taunting will just get worse. Kids are mean, and unchecked, they can be downright nasty.  I know because I was mean to one girl in grade-school, Shelley. A lot of us were.  I still don't know why, but there's no excuse for it.  I put my apologies out in the universe a few times now, but I can't give Shelley back her innocence.  I can't undo any damage that caused her, if any.  Perhaps this is the lesson coming full circle, karma slapping me upside the head. Even though times have changed, there's no undo button on mean words.  No take-back's.  Words hurt.  And I worry what words will do to Andi -- how they will effect her.  I know all I can do is continue to arm her with her personality, a quick wit, and like my Mom taught me -- how to say bullshit with a smile.  

It's only the beginning.  Actually, I think this is the 2nd time it has happened.  I believe karate classes are forthcoming, because in addition to the wit and charm, she will learn to Madea those lil' f'er's.

The Giggles Of Friendship

For the past few years, we've noticed that Andi doesn't have playdates like most kids.  Part of that is/was due to her busy therapy schedule, but where were the invitations?  Andi hasn't had one friend that's called her, invited her to do something, or just hang out.  We wanted to get her into Girl Scouts or Brownies, thinking that would be a great way to foster friendships, but there wasn't a chapter at her school.  Her teachers report that everyone likes Andi at the entire school.  They all know who she is and most of them look out for her.  So, her Dad and I have been smelling our own arm pits wondering, 'is it us? do we stink!?' And then we scratch our heads and wonder why she isn't experiencing this childhood rite of passage, friendship.  Moving into this house, like I've written before, one of our many motivations for getting a house with a pool, was to encourage social get-togethers, not just for us - but for Andi too.  I know when I was a kid, we'd always hang out at the kid's house with a pool when the club was closed. This is what we hoped for with Andi.  She had her first friend over to swim a few weeks ago, and next thing I know, Andi tells me on the way home from After-School Care that she invited her over for a sleepover and she said yes! 

All week, Andi was counting down the days until her friend came over for a sleepover.  She'd constantly ask me, 'what are we going to do?' and not only repeat the questions rolling around through her mind, but she was seriously mapping it out in her head.  The morning that her friend was to come over, she awoke giddy.  She was in such a good mood, so excited.  She was literally floating around the house with excitement.  It was pretty dang cute.

She was so excited, I'm actually surprised she didn't give herself a belly ache!  We worked on setting up her room, bringing her old twin mattress and putting it on the floor next to her bed.  She helped me make up her friends bed.  She just buzzed around the house with this wonderful energy.

Her friend arrived and we 'shot-the-sh*t' with her parents, who are pretty dang cool.  When they left, I ordered a pizza via Uber-Eats, and they went downstairs to enjoy a movie on the big TV while we awaited the pizza. We never did get to see The Greatest Showman for the 43rd time, but whatever.  After pizza, we played Sleepover MadLibs, ate some homemade ice cream, played Kids On Stage (Charades), and then had a dance party.  By this time, it was 10:00 and the girls were hyper, but exhausted. They got ready for bed and once I got Andi to "be a big girl" and leave the lights off for the night, just having a night-light on -- I closed the door and that was the last I heard from them.  They were out.  By 6 a.m., they stirred.  By 6:30, her friend kept whispering Andi questions, 'are you awake?', 'do you want to go wake up your parents?' I don't even remember what else I heard, because I was saying in my own head, 'oh honey, she can't hear you without her hearing aid on...' and that just made me sad for Andi. It made me realize that we probably need to start keeping her hearing aid in her room.  I've noticed that when I wake her in the mornings, and put on her hearing aid and music, she wakes much better and faster than without.  It's hard to imagine how scary that must be for her not to be able to hear, how frustrating at times, how exhausting.  But then I think, wow - how peaceful it must be at times too. I want to say she doesn't know any different, but she does, because she experiences it all day when her hearing aid is on. But I know, Andi will do what she does... she'll adapt, divide and conquer.  

So, we're up at 6:30 a.m. and by 6:35, I'm getting demands for the chocolate chip pancakes I mentioned the night before.  I was able to detour the short-order cook role for a cup of coffee, but once that was gone, they were on me again.... 'when we going to eat pancakes?'  The pancakes were a big hit, and that turned into playing.  They played with play dough, coloring, then they played 'school' and took turns being the teacher.  They played so well together, it was so much fun to watch.  Hearts flew out of my dewy eyes, as she finally had a typical kid experience that we've been waiting for what seems like forever to occur.  Her parents brought donuts, and we sat around chatting while the kids played some more.  Neither of them wanted to stop, but when they left, we marked two more occasions on our calendars for our next get togethers. I know Andi will be a good friend to anyone and everyone she deems worthy.  I am just absolutely thrilled that she's finally got someone who wants to hang out and play.  Most of my childhood memories revolve around the many people from the neighborhood I hung with nearly every day.  All my best memories include these people.  So, I'm hopeful that Andi will have such memories of her own that she can start creating. In the meantime, the sound of little girls giggling are still echoing this evening.  The start of a glorious new chapter.

Chatter Box Bean

Every night I put Andi to bed, we have this routine of making sure everything is in its place, give a dozen 'a hug & a kiss' - a few I love you ASL signs and good night's.  Once I exit the room and shut the door, she starts talking.  And I mean, TALKING.  "Hi! How are you? How was your day?"  She rattles one side of a conversation that lasts a good 1/2 hour. She runs through her whole day. Conversations she's had.  Gives instructions to her audience, like she has heard throughout the day.  I think it's her way of processing, categorizing her day - and one way she can remember so much more than most.  However, a part of me wonders if she's chatting up a storm with our ancestors, ala the movie Heart and Souls (staring Robert Downey Jr.)  She is just talking and talking, and this happens every single night.  
* Product of an only child? 
* Product of a spiritual nature? 
* Crazy ass kid processing her day?  
Whatever the reason, I love hearing her chatter her thoughts. It's insightful to what she doesn't offer during the evening hours.  Right now she's insistent about "not taking off our shoes" - something I had to tell her in the store earlier today.  Now she's talking about Kelly.  I'm guessing it's my friend, but it could be Kelly Clarkson from the Voice.  I can't tell.  It's comical, adorable and I savor these instances where I can slow down and just listen. My baby girl isn't always going to talk to me... so, right now, I just need to enjoy the chatter box Bean.