The Past, The Present, The Future!

I guess I'm vying to be "the problematic-parent from Portland" when it comes to Andi's school.  Today, I wrote an email asking the school to rethink the classroom that Andi's in, as it is WAY TOO SMALL to house a Bean.  With eight kids, a teacher, a teacher's aide, and a ASL interpreter.  11 people in such a small area is not okay.  Hopefully, they will hear my concerns and try to find something a little more spacious for them next year.  Andi only has another two weeks of school and then they're done for summer. Which reminds me I need to contact this program to see if they have any sort of summer camp that Andi could enroll in.  When summer break ends, and the new school year begins, Andi will be going from 6 a.m. (likely she's still be the first on the bus) and go until 2:30!  She'll likely still be last off the bus too, which would be around 3:30!  Yikes.  That's a very long day for a four-year-old.

When I find a job, which is proving to not be a lot of fun, I am unsure how all this will get done.  How will we get her to appointments, and what do we do if we have another day where she needs to be picked up from school!?  I haven't encountered the work/home life balance fight... so I'm wondering how well *cough, cough*, okay, how poorly, I will handle it.  I'm having trouble figuring out what I want to do, and all these job titles make my eyes glaze over, annoyed.  It's going to be very difficult to find anything remotely half as decent as what I've been doing these past 18 years.  The other day I was remembering what it was like to go into the office everyday and work on different projects, with my heater cranking under my desk.  I loved my desk, my office.  I miss seeing everyone every day, and way back when, taking smoke breaks with my coworker and hearing his tales of growing up in the area.  It was fun, and I am starting to really miss it.  Since Andi was born, I haven't been able to think about me, my career, and what I want out of this life of mine.  It's all been about her.  Her needs, her appointments, her therapy, her well-being.  To switch to the land of 'ME!' is not only decadent, but scary and I guess, ultimately, one thing to celebrate.  I should be thankful we're in a place in her life where I can go and do for me... but being thankful doesn't make me any less frightened.  Wherever I land, I doubt it will have similar shoes as where I've been.  My bosses and coworkers have been my family, held me up so many times over the years, and I doubt I will find that level of comfort any where else.  I have to come to accept that.  But, as I move forward in my quest to find the next phase of my life, I can't help pause and mourn the life I will be leaving.  (uhm, ...if I ever find a job!)  But, right now, I'm savoring what I have, where I've been, and trying to stay hopeful about where I'm going.

Changing Plans

Today has not gone as planned, at all.  I awoke in a funk of haze.  After Andi got on the bus, I came into the office to get cracking on all things.  I sat here and just found myself unable to get going.  So, I put on my workout clothes, grabbed the dog, and headed outside.  We did a walk/run to the end of the neighborhood and back.  Pretty quick trip, but it got the blood pumping. Not long after my shower I got a call from Andi's teacher.  I said, 'uh oh!  what's wrong?'  Apparently, Andi puked on the bus this morning, and I needed to come get her.  She puked with an empty stomach.  That usually indicates a gas build-up and thus some reflux.  [I did feed her kielbasa and baked (farty) beans for dinner last night!]  I picked her up and she was rather quiet.  We drove back toward the house, with the plan to stop off at the new pediatrician's office.  They need a copy of Andi's 400-page medical file, which arrived yesterday!  So we navigated the campus, the parking lot, the various buildings.  She walked most of the way holding my hand.  She was still quiet and seemed very tired.  Hmmm, I thought... she must be exhausted from this week.  While we were out, we ran to Costco to restock our basics:  wine, wine, wine, oh, and a rotisserie chicken (of course!).  We got home and I fixed her a hot dog.  She ate, and I thought, hmm, she probably hasn't eaten all day.  When she gets to school, they have breakfast.  However, if she got sick on the bus, they probably didn't feed her.  She started to perk up, and I felt bad... she was hungry.  I checked her hearing aid and the battery was dead.  I felt bad about that too, but knew something else was amiss when she didn't sing along to her favorite songs in the car.  After lunch, I determined she still needed to lay down and try to nap.  That was 3.5 hours ago.  She is still sleeping.

Yep, something's up. 

She had a cold last week... wondering if it's trying to make a comeback!  Either way, I'm letting her sleep and sleep and sleep.  Poor Beano!

Meanwhile, the guys came to clean & service the hot tub!  This house came with an outdoor hot tub.  It's been neglected!  It needed a good scrubbing!  I was surprised how little they charged for that... but, it's all dialed in and warming up!  We can use it tonight if we want!  Yippie,

Earlier this week, these guys were here to install the pool table we bought last weekend.  Daddy Bean has always wanted a pool table, we had a little money left and the room... so we went for it!  Just for the record, we've played two sets of three games this week.  The winner of both of those sets is ...   ...yours truly!  My streak might not last, but least it's documented here for public consumption and record. 

Andi's awake finally.  Seemingly restored, and hungry.  She's sitting with her iPad on the couch watching Miley Cyrus videos.  I'm trying to figure out how to remedy (uhm, block) that.  Nothing like letting your near 4-year old watch Miley in her underwear swing back and forth on a ball.  I must be getting old, because my tolerance (uhm, appreciation is a stretch) for that shit is gone, gone, gone. 

So, today hasn't gone as planned.  Plans derail. Plans change. It's how you regroup and rebound from the obstacles that jump in your way.  On that note, Miley's gotta go!  Toddles.

Big Girl Standing!

Last night, I began working on the video to commemorate Andi's past year, in celebration of her birthday in 20 days!  I found myself cussing at the mediocre software, then after a few clicks I was cheering.  At one point, I was giddy with my creation and said aloud, 'this is fun!'

Today, I sold the crate used to house Maddux on his Delta flight to Atlanta.  It was a craigslist purchase prior to departure, and we don't have any use for it anymore.  It was a bit small for him anyway.  The odd thing about this sale -- the buyer is a guy from Sacramento, who moved to ATL 6 months ago, via Portland, OR.  Uhm, that's exactly my route here too, well, with a few side hops.  I told him we'll be best friends, and we'll have them over for dinner.  His wife/fiancée is a daycare provider/nanny/sitter.  So, he said if we ever need someone to watch Andi... uhm, HELLO!!!  :)  They also have a 10 year old and a 2 year old.  Thought that was a cool meet-up.

I went to Andi's school today at the request of her teacher.  It was "field day" where the whole school participated in mostly outdoor games and activities. Her teacher asked that I come help Andi navigate the outdoor environment.  I'm glad I went because it would've been a lot for them to handle -- 8 kids while helping Andi as much as she requires.  I also got to see Andi grab at her friends, overly love them with some "hugs" which look more like some neck yanking, debilitating wrestling move. One kid was a complete spastic disaster. He not only didn't listen, he was all over the place.  When we left at 11, Andi's teacher thanked me for coming to help.  I thanked them for having me.  She said, "sure, any time!"  I jokingly responded, 'there's not enough booze on the planet that would enable me to do this every day.'  It was rather loud & chaotic.  I see where some of Andi's new habits are coming from, both the good & the bad.  The one thing that came out of my visit is my new found desire and conscious responsibility to complain about the special education classroom.  They have eight pre-K kids, a teacher, a teacher-assistant and an interpreter in a classroom the size of my master bathroom.  I mean, for a bathroom, it's pretty dang big... but, for a classroom containing all those people, it's way too small.  I feel the need to voice my concerns about their well-being in such a small area.  I think I'll wait until tomorrow when I'm a bit fresh, and have the knack for pulling out the really good letter.

The one thing I was delighted to see while I was at school today, was to witness Andi getting off the floor and standing unassisted.  She's great if she can hold onto something, but today, I watched her stand without holding onto anything.  It was AWESOME!  I'm so glad I was able to see that.

Here are some recent photos - for those not following us on Facebook.

Coming Out Of Hiding!

The tales of Andi Bean are now available for all to consume.  We've been, oooh, just a skosh busy.  We recently relocated across the continent to Georgia, where we are losing years of moss off ourselves with all this glorious sunshine.  It's been a wonderful transition, and our mood o' meters have definitely perked up!  Everything here is bigger!  Bigger houses, more options of things to do, and bigger temperatures!  Yesterday, after Andi Bean got on the bus, Daddy Bean and I went for a morning walk.  We were out at 6:20 in the morning in short sleeve shirts and shorts.  No  joke.  We were practically skipping down the sidewalk pathway, giddy with our new environment.  We talked about it, and although we agreed that Portland has cleaner air and water (minus the peein' hoodlum... I'm just sayin'!), we wouldn't go back.  We are home.

Now this new home is about 2.5 times the size of our home in Portland.  Dang 1924 house wasn't built to fit a Bean!  With this new found space, the Bean has taken to independent walking all over, including up and down the stairs.  One of the first things we purchased upon arrival was a set of baby gates for the top and bottom of the stairs.  But we determined that she could handle them, and so we returned those baby gates and bought her some short-sleeved shirts and shorts instead!  Andi is attending a deaf/hard-of-hearing PreK, in Roswell.  It's not the closest school, but we have the bus picking her up (at 6 a.m.) and dropping her off (at noon).  It's a long day for our almost four year old baby girl.  She's been walking the halls holding someone's hand, and she's loving it so far.  She still misses her friends back home, but I think she's adjusted amazingly well here.  I can tell she's even grown, perhaps all the walking and natural vitamin D!!!!

With the move, we've completely switched insurance programs.  We are now on Daddy Bean's insurance.  I think walking a tight-rope after having several glasses of vodka, over the grand canyon without a net, would be less scary than switching insurance and set of Dr's.  I've asked for a copy of our medical files, and they are having to mail them.  No, they're doing me a huge favor.  HUGE!  At almost four years old, Andi's medical record is 400 pages.  My record is 90 pages, and I've been in that system for 18 years.  Uhm, Y-E-A-H!

Also with this move, it has been determined that it's time for me to go back to work full-time.  I've been with the same company for 18 years.  They are my family.  I'm scared witless and thrilled at the thought of tackling a new adventure.  But... my o' my how things have changed since I last sought employment.  There wasn't an internet.  There was me, a word-processor and pre-Kinko's store with a fax machine.  It's different. A lot different.  You need profiles on various sites. Everyone wants you to create a profile on their site to even apply for their job listing.  There are a gazillion "e-recruiters" which are jobs emailed to you based not on personal opinion, but something a computer spits out at you.  You can easily make it a full-time job just looking for a job.  And the whole trying to sell yourself gets really, really old.  Yesterday, I found myself starting to write as my cover letter, 'why not me?!'  A simple protest of how tedious and obnoxious this whole process is.  Super sorry, I haven't allocated a lot of time to my LinkedIn profile... you want to hear how great I am...?! let me have you talk to the professional references I've hand-picked that will vouch for me.  Gone are the days where you can just push forth a piece of paper in the mail in a crisp envelope.  Now it's like you have to juggle knives, while balancing on a ball, in the nude with little tassels covering your private parts.  I mean, it's beyond ridiculous.  In all this though, I have listened to my Oprah-speak and determined that all things going the way I want them to, I would like nothing more than to write, create, and be a part of a team doing something fun. There are SO many directions I could take my career. I have been doing so many various things over the years. But the thing I love most is to write.  I really should finish my book.  I tried incorporating the blog, and it's sort of overwhelmed and stifled the process.  There's SO much good writing in this blog during the darkest, heaviest days -- I really want to use it, showcase it.  That energy was undeniable, and so, so, so creative & full of my personality.  It is a must. My title is still perfection... so, really, I must make the time for it. 18 years in publishing, I have to know some one that would publish it... ...don't I?!  *crickets!*

So, we're back online and reemerging from life transitions.  It's nice to be freed, and found basking in the sunshine of the south.

The CHARGE Mafia

It's been awhile since I've written. Sometimes, when shit happens - I need a place to park it.  I need to purge & process the emotions, the situation, the grief.  Our CHARGE Syndrome family has collectively come together in ways I hadn't seen before to rally around a family in distress.  Their son was recently rushed to the ER, and been in the hospital for a few days.  They did exploratory surgery and relieved pressure in his abdomen. The prognosis wasn't good.  He was fighting for his life.  The CHARGE family turned into The CHARGE Mafia before my eyes.  We all took pictures of our own CHARGErs holding 'Get Well' signs or iPad's lit up with encouraging sentiments.  The whole community turned into a protective circle of encouragement, energy, and prayers.  It was unprecedented.  Did you know that there's a 15-20% chance that a kid with CHARGE Syndrome will not survive to the age of 5.  That's around 1 in 6 kids.  1 in 6... how incredibly jacked up is that?!  I guess I live with blinders on most of my days, because I can't even grasp that.  I always heard and believed that if they made it through the first year - they'd be okay.  Revise that number Momma, the age is five, not one.  Andi's not even four years old yet. 

As for this family in distress, the Dr's went back in this morning and concluded that the damage to his organs is just too great.  He will not survive.  So here's this incredible family having to say goodbye to their 15 month old son. 

The CHARGE Mafia has started a collection or fundraiser to help this family.  While money doesn't help with grief, it does alleviate financial worry and strain at a time that no parent should have to endure. We're asking people contribute what they can, even $1. will help.   If you can donate, please go here:  http://www.youcaring.com/medical-fundraiser/connor/124026


And because I have no where else to park my own grief, worry, and overwhelming emotions - I have to say it here.  I absolutely HATE CHARGE Syndrome.  It breaks my heart to have these kids fight for their lives, harder than most of us fight for anything, and 1 in 6 don't make it.  1 in 6 lose the battle.  Yet, all of us, me included, waste our health.  We yell at our kids to be quiet.  We lose patience when something or someone isn't fast enough, or the way we want them.  If only we used that energy toward something positive, like supporting those fighting hard to live, fighting for health, fighting to survive.  Good God, stop abusing your own health.  Stop when you start to lose it, and reflect on others and what they might be going through before you utter anything negative.  And to my beloved brother whom my baby girl loves more than anything... stop smoking.  Stop using it as a crutch.  Stand on your own two feet, tall and proud... I love you, she loves you, and we need you here.  Be healthy and free of the negative shit that holds you back, holds you down.  Sorry to single you out, but damn-it... you're too important to us and I love you.  To the rest of you, you too have been challenged, find ways to improve all our lives.  Educate others about CHARGE Syndrome.  Remind others to cherish their health.  And as you go out your door, go through life with gentle hands, gentle eyes, and an open heart. 

CHARGE Through The Year - A 2014 Wall Calendar

A week and a half ago, while giving Andi a bath, I was struck with an idea -- a calendar featuring kids with CHARGE Syndrome to raise funds and awareness!  I quickly shot off a few emails to "friends-in-the-know" and asked for information.  After which, I was twirling my blond hair and realized, I'd better get some Mom's on board.  So, I private messaged the first 12 or so Mom's I could think of on Facebook, and sure enough, they all pretty-much jumped on board.  I researched, talked to a few more people, made some phone calls and before I knew it, CHARGE Through The Year 2014 Wall calendar was born!  Well, printed...



Cover Art Image

 


Interior Page, April

I put together a website (www.chargecalendar.com) where people can go buy the calendar using PayPal.  The calendar is $20., which includes shipping.  We have a Facebook page people can 'like!' and we're on Twitter!  The calendars should be here soon, next week - and I'll begin shipping all our orders out!  I really hope we can sell them all, and people enjoy them as much as I've enjoyed putting this project together.  Most of all, I hope people hang them in very public places where people can learn about CHARGE Syndrome, and see some of the gorgeous kids that are celebrated in the pages.  As I seem to keep saying lately, no parent whose child has a syndrome should ever have to hear from medical personnel, 'CHARGE Syndrome... what's that?!?'  It's my hope and ambition that through the course of many awareness campaigns, such as this calendar, future families will not have to hear such words uttered from the mouths of many. 

The holiday's are coming and I can't think of a better gift for people to have than the beautiful smiles contained inside this calendar!  If nothing else, Andi is Miss January!  So, buy one - buy a dozen... share the knowledge, share the smiles, and share this journey with me! 

Surgery #8: A New Set Of Ear Tubes & Independent Steppin'!

Last Friday, Andi checked into Doernbecher's Children's Hospital for surgery #8 -- a new set of ear tubes!  We met three anesthesia people that would be working on her, two nurses that would be in the room taking care of her, and just before 7:30, we met the ENT surgeon who would be performing this procedure.  I honestly think he's the sixth or seventh ENT Dr. we've worked with in the past three years.  The procedure didn't take long, and soon we were ushered back to the recovery area where Andi was not only awake, but extremely pissed off.  Anesthesia had warned us, as did the ENT, that although she would not be intubated for this one, most kids wake up super cranky from it.  It is believed to be because the procedure is so short, that they really don't get much rest, just disturbing irritation.  The ENT surgeon explained that all went well.  He was able to get a new set of blue tubes in place.  He cleaned out a lot of "gunk" out of her left (bad) ear, and removed a pocket of red blood cells that had gathered in her right ear.  I would likely see some bleeding out of that ear for a few days (which I did!).  All went well though.  Due to Andi's medical history, they decided to keep her for observation for an hour.  Yes, an hour.  I was expecting that we'd be admitted and staying the night.  Nope, just an hour.  Walking out of the joint as an outpatient was completely stellar!  Before that though, I had to sit with a very agitated Andi, and even the iPad wasn't working.  Surprisingly, the trick that worked to settle Andi down was singing songs.  The kid in the next bed, on the other side of the curtain, started singing along.  It was pretty cute.  She curled up in a little ball and we rocked for a good 1/2 hour or more together.  It was pretty sweet, and reminded me of the good side of our hospital stays, the cuddling time we spent together.  Later that day, after Andi woke from a nap, I was on the phone with Ginga.  Andi was standing with her back to the couch.  Next thing I saw her take two steps away from the couch toward the dog we were dog-sitting.  Her first two independent steps.  It was AWESOME!  I had asked her Dr. if her possible ear infection could possibly be causing her to fall more, 'no' he said.  Well, having her ears cleaned out not only made her hearing improve noticeably for the day, but her balance was the best its been.  She's eager to walk and we're continuing to try to work on it as much as possible.  Today, Andi started her second and final week of swim lessons.  She is paired with a teacher's aide whom can talk directly into her good ear and try to get her doing what the rest of the class is doing. Andi is definitely behind the rest of the group, but is slowly getting more comfortable in the water.  I see it in the bathtub too, she's getting more bold and exploratory in the tub.  It's pretty cool. We're going to sign her up for another batch of lessons in October in the indoor pool down the street.  We are confident that swimming will help her with her balance.  In addition to that, we have signed her up for her evaluation for hippotherapy.  I am hoping these people have magic powers that will entice her to get on the horse, because I have tried and failed twice to get her on a carousel horse.  We'll see.  If it helps her walk, however, it will be worth the cost. 

Lastly, today we met her two bus-drivers that will taking her to school and bringing her home.  This will free up four hours of my day, making my life a lot less complicated.  So, I look forward to this next chapter, although I can't help but stop to reflect that my little baby is growing up.