by Sarah | Jan 25, 2016 | All About Denver, All of Us, Redefining Perfect, The Teenager
This past week has been a momentous one. Denver turned 18, and got his driver’s license. I am so proud of the man he’s become, but before I extol on the virtues of the man he’s become…I wanted to bring back this oldie but goodie birthday post of the past, nice and loaded with pictures of the younger Denver..because what would a birthday be without a little look back to the past?
Time sometimes flies like a bird, sometimes crawls like a snail; but man is happiest when he does not even notice whether it passes swiftly or slowly.
~Ivan Turgeney
Eighteen years ago as I was in labor, I still thought he was a girl. The ultrasound said girl. Everyone said girl.
My dreams said boy.
My morning walk to induce labor I stopped not at the girls clothes rack, but at the tiny little suits, ooh-ing and ahh-ing over the teensy little ties.
After three false labors I was forced to sit in the hotel room my Mom had reserved until I “Finally” stopped screwing around and gave birth already. (For the record, Denver was only 1.5 hours “early” for his due date.) When my contractions were finally 3 minutes apart, my mom called my OB, who then demanded to know why we waited. She, in her dry and sarcastic glory informed him that she wasn’t about to take me in if I wasn’t going to actually have the baby.
And so Denver made me a parent. With his perfectly round head and surprise appendage that made him decidedly NOT a girl, & made me wonder how in hell I was going to raise a boy.
But he was perfect.
The gorgeous blue of his eyes made me fall in love in an instant.
Everything on time. Every milestone reached at JUST the right moment. Every clothing size changing right at it’s declared time (0-3 months? Gone at three months. 3-6? Gone at six…it was eerie).
He was happy. Smart. Playful. Loving.
He was my world.
He was my mom and dad’s world.
The first born grandchild. The first born great-grandchild.
The star.
Our family grew. It changed.
Not always in the best, most fair ways for him.
It never made him less loved.
In many ways, being the parent of a teen is infinitely harder than raising the young ones. He isn’t satisfied with easy answers. He sees the world around him in such a different light. He sees things that a younger child wouldn’t. He understands and absorbs everything. Things that I sometimes haven’t the slightest idea how to explain to him, to clarify.
In his heart – he is a good kid, nay, he’s an excellent adult. He is smart. He is loving.
He is annoyed with his parents. Embarrassed that his mother has a tattoo and plans more. He hates failure. He strives to do his best and no one is harder on him when he fails than himself. Interested in photography. Science. Math. Writing. Cross Country.
He dreams big dreams. Of working at Disney to bring joy to others. Of volunteering at Give Kids the World to spread the love and caring he received at that marvelous place.
He achieves big things. Advancements in Boy Scouts, Junior Honor Society.
He struggles to fit in.
He is 18.
In so many ways.
He is my baby.
In so many ways – he always will be.
Happy birthday to my oldest, my first born.
18 is a big number. But you’re just getting started.
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 | 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 | Sep 30, 2015 | All About Denver, All About Family, Redefining Perfect, The Teenager
One year ago I’d never thought it possible.
One year go everything was different.
One year ago there was sullen silence.
Moody glares.
Angry yelling.
Intentional disobedience.
Lying.
Ugliness everywhere.
We were mired deep in the land of the teenager.
A teenager with a girlfriend we didn’t like.
A teenager that seemed to be “perfect” for everyone else.
A teenager I no longer knew.
My first born.
My perfect baby.
Turned into someone I couldn’t relate to.
So much has changed in one year.
There is laughter.
There is communication.
The secretive, angry behavior is lessened.
Not everything is perfect.
But one year ago I never would have thought.
I would be sending my boy off to homecoming.
With a new girl.
A girl he told me about on his own (after hinting for a week).
We are working in a better relationship.
A better place.
A day I worried would never arrive.
Time sometimes flies like a bird, sometimes crawls like a snail; but man is happiest when he does not even notice whether it passes swiftly or slowly.
And so Denver made me a parent. With his perfectly round head and surprise appendage that made him decidedly NOT a girl, & made me wonder how in hell I was going to raise a boy.
Our family grew. It changed.
He dreams big dreams. Of working at Disney to bring joy to others. Of volunteering at Give Kids the World to spread the love and caring he received at that marvelous place.
