by Sarah | Dec 31, 2015 | All About Denver, All About Erik, All About Family, All About Home, All About Indiana, All About Kennedy, All About Marriage, All About Me, All About Molly, All About Ripley, All of Us, Blogging Life, Disney, Make-A-Wish, Redefining Perfect
Tonight is a night of reflection. When we all look back on the year that’s past and examine it, and then look forward to the coming year and anticipate what’s coming.
A breath of hope.
Of change.
Of life.
To look back on my 2015 I can sum it all up with one simple word.
More so in the last 1/3 of the year, but definitely, all around, chaos.
There was much good to be had – Disney (again), getting my son back from the land of emo teenager, book releases, returning to the community theater stage (w/ my whole family, no less) good moments with friends and family.
There were also rough times – my dad’s downward spiral into some pretty bad Parkinson’s symptoms, working triple time at the day job, my publisher closing, and some pretty hurt feelings on my part (sorry, vagueposting that).
The last third of the year it felt like I couldn’t even take a breath we were so insanely busy. Between the play, Disney, work life and home life, I got hardly any writing done, hardly any breathing done.
Now it’s time to step back and take a breath. To look to the upcoming year with hope and excitement.
I see more chaos in the coming year for certain. I see myself setting more lofty goals for myself. I see big changes for my family’s dynamic as one bird flies from the nest. I see growth for my book sales, and moving closer to my dream of being able to stay at home again. I see excitement as more of my Buffalo family moves to Indiana.
So I welcome 2016 with a certain level of anticipation and calm acceptance.
I look forward to whatever it brings me.
by Sarah | Dec 4, 2015 | All About Family, All About Home, All About Me, All of Us, Holidays, Redefining Perfect
The stress is real.
There are cookies to be baked.
A bevy of presents to be wrapped.
A tree to be trimmed.
There are more cookies to be baked.
Carols to be sung.
Play performances to be had.
Many more work hours than normal.
3 kids on Christmas break.
Working the day before and after the holiday (every holiday this season).
…
And then…
There’s the joy.
The presents.
The family together.
The food.
The lights.
The ornaments from the past and new ones.
There is so much to love about this season…all those stresses don’t seem so…stressful.
by Sarah | Nov 23, 2015 | All About Denver, Crap, Cystic Fibrosis, Random, Redefining Perfect, Special Needs, The Teenager
For almost two years I thought we’d lost him. He never talked to us, he didn’t care about anything but the (now long gone from his life) girlfriend.
Back then he wanted to be a doctor. Now that dream has been put aside for another, but that’s another post for another time.
Because two days ago this kid came to me with a question.
He asked if there was a way to raise money, because he wanted to do something with his spring break. He didn’t want to go on vacation with his friends, or go party somewhere.
He wants to volunteer at Give Kids the World Village, the magical, wondrous place that provides a second home to kids receiving wishes for Disney World.
Together we are working on finding a way to make this happen.
I don’t know where this kid came from, or rather how we found him again. However, it seems my thoughtful, generous boy has returned into our lives.
I can’t tell you how many times I heard “One day it’ll just click and his head will be screwed on right again.” I honestly never believed it would happen, but it seems to have come true.
So welcome home, son. I hope we can find a way to send you away (for spring break).
by Sarah | Nov 18, 2015 | All About Denver, All About Kennedy, All of Us, Cystic Fibrosis, Redefining Perfect, Special Needs
Six months ago we were hit with a disheartening blow to our years-long CF journey.
The pulmonary doctor we’ve had from the very start of our journey was transferring all her patients on to new doctors. With plans to retire very soon, it was time to transfer her last six patients to their new forever homes. My two kids included. So, at our last appointment we met our new (highly recommended by Dr. A) doc, Dr. M.
Change isn’t easy. We were suddenly reporting on a Tuesday instead of a Wednesday. Dr. M, while perfectly nice, was making all of these suggestions and recommendations and this and that and I was honestly panicked.
Mostly because he wanted to do a complete, total, sweep of the CFTR gene on K.
In my blind, “this is so different, I don’t know, so I’ll smile and nod” moment I did just that. I smiled and nodded.
Yesterday we returned for the next appointment and this time, not so new, it was a little different. We spent some time with Dr. M, and the respiratory therapist and got a better feel for what’s going on.
And so we set new plans, a new direction.
My biggest concern with the genetic tests was addressed – would we lose the CF diagnosis, and therefor the vital insurance we desperately need for treatment?
No. Because of positive sweat tests and concurrent symptoms, their diagnosis of CF will remain no matter the results of the full genetic sweep (which is, blessedly, being covered by the fantastic CFF not just for Kennedy, but for Denver as well).
Then we moved onto Kennedy’s current status. Though her weight is at an excellent place right now for a change, her functions are not. She has maintained for years just fine, but Dr. M wants to do more than maintain. He wants to attack…and so…
With her functions the way they are, there is definitely some sort of obstruction, and he wants to find it. There will be a chest CT.
There will also be another functions test for before and after albuterol to see if there is any asthma-like influences, and she’s being put on a nasal steroid for her constant sniffles.
We’re fighting insurance for a new vest system (with the doctor’s help) since hers is old and been beat up by destructive toddlers. She will be on an increased vest rotation and possibly new meds (hypertonic saline) which will require new equipment.
Basically we are now fighting to push forward and move beyond basic maintaining and into full blown attack mode.
It’s terrifying and exciting.
I don’t know what’s happening in the future, except increased appointments and testing for the little one, but I do know that something is happening.
Change is scary, but this is proof it isn’t always bad.
And that first impressions aren’t everything.
by Sarah | Oct 8, 2015 | All About Denver, All About Family, All About Kennedy, All About Me, All About Molly, All of Us, Cystic Fibrosis, Disney, Make-A-Wish, Personal, Redefining Perfect, Special Needs
The past four months have been chaotic and filled with a secretive sort of excitement.
Denver has us keeping a rather large secret from the girls.
We are returning to Disney this fall!
I have been scrambling for dining reservations, suitcases, and other necessities that I have to sneak into the house and hide from the girls.
Because they do NOT know.
Part of Denver’s wish at Make A Wish was to keep this whole thing a big, fat, humongous secret from his two little sisters.
So we are whispers, sneaking, and super secret planning and count-downing. Texting ideas instead of saying them out loud.
Oh, we’ve nearly been caught several times…but any time the girls hear Disney or we discuss anything in front of them, it’s “in 2021”. (For the record, we are planning a trip in 2021 that will be larger in scale and involve good friends along for the ride)
2021 is a great cover story when we get caught.
But we are going back…and the teen and I are making a serious effort for real planning.
We have secured all the reservations we REALLY wanted (getting into the parks early! Yay!). We’ve scoured maps and discussed what was missed last year and will not be missed again. We’ve supplied ourselves with a bunch of pins for trading (and keeping!!). We’ve watched and re-watched all the Disney shows to be had (thank you, Destination America) until our DVR broke.
In 20 days from now, a limo will arrive bright and early while the girls are still in bed. We will have everything packed and ready to go and we’ll burst into the girls room yelling that they’re late for school and rush them outside to the waiting limo!!
The excitement is palpable.
The countdown is a way to get us through the rough days.
And there have been a lot of them these days.
Thank goodness for the mouse.
by Sarah | Oct 7, 2015 | All About Me, All of Us, Blogging Life, I'm A Writer, Redefining Perfect, Wordy Wednesday
A month ago I was blindsided by the news of my publishers closing. Shock and confusion took over for a while. The stress of the situation was compounded by the fact that my day job blew up and I’ve been working full time instead of part time.
I knew I’d regather and reissue and move forward, but I was so overwhelmed by all the tasks ahead of me.
One month later and I’m definitely in a different place. I have put all of my books back on Amazon with lower prices and some on Kindle Unlimited.
I sat down with my editor and we worked out a schedule so that I will still be publishing my Halloween book. I have set dates for the editing process for my upcoming releases next year. It’s good to have deadlines, even if they are flexible.
I’ve put up for pre-order a box-set of my original Dominion Falls Trilogy, because I’ve been wanting to do it for a while anyway.
And, best of all, I’ve been writing again. Despite the entire world blowing up around here lately (seriously, it’s been insane. ‘Stop the world, I want to get off’ type of insane), despite me not being able to talk to my bestie as much (seriously, woman, get back on the damn computer), despite the pressure of getting things done and done well…I have returned.
It feels really good to be putting words on the page. New words. Lots of words. Not daily, but nearly daily and with good word counts.
I’m feeling good about the coming year. My first month completely Indie has been successful enough to have me hopeful for what’s coming in the future.
So nice to be back.
