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 | Jul 24, 2015 | All About Molly, All of Us, Autism, Blogging Life, Friday Feels, Redefining Perfect, Special Needs
Molly had a stellar year at school this year. Top notch, best on record.
Her grades were through the roof awesome, she jumped ahead in math and managed to get an angle on language arts and push forward.
Life was pretty good.
Then, came the end of that.
Fresh off the bus on the last day of school the first thing she said was, “I want to go back to school.”
See, Molly doesn’t handle change well at all.
She doesn’t handle the loss of a routine well.
So despite the leaps and bounds made during the school year, we have had a very difficult summer.
Molly is struggling.
Not sleeping on several occasions (like, at all).
Behavioral issues, despite taking her medicine nearly every day.
Anger, silence, uncontrollable laughing.
Enough to concern us.
And enough to make us look forward to the start of school in a few weeks.
I hate seeing her struggle and not knowing what to do for her.
I can only hope that the return to a routine and school, where she loves to be, will bring her back into focus.
Now if I could just get over the fact that she’s going into middle school….
by Sarah | Jul 9, 2015 | All About Family, All of Us, Cystic Fibrosis, Disney, Make-A-Wish, Redefining Perfect, Special Needs
When you go to Disney World with Make-A-Wish you get to stay at the Give Kids the World Village.
The Village is a magical place where you are made to feel as if you are at home…vacation style. From the food, the pools, the games, the parties, and the visits from Disney & Universal characters–there’s plenty to do if you’re too tired for a park visit that day.
When you first arrive in the village, you immediately have no doubts this place was created for the kids and the kids alone. All the buildings are bright, colorful, and creatively designed.
You aren’t welcomed in, you’re welcomed home. After a brief intro into the amenities you’re led to your own villa. Where you can settle in and get comfortable. And boy did we.
On our first night we took full advantage of the large pool and splash pad. There’s a second, smaller and quieter pool down the road if you’re looking for just a little less noise.
The kids favorite part of every day was breakfast at the Gingerbread house. I mean, who wouldn’t love a meal eaten on a table of peppermint candies? 
(No, really, look!! <—-) They had everything from eggs, to pancakes, to donuts and Belgian waffles. Even if what you wanted wasn’t on the menu, all you had to do was ask and they’d scare it up for you. The teen was all set to sign up for bacon at every single meal.
Of course, another part that was super fun for everyone with a sweet tooth (so, everyone) was the ice cream shop–which is open for business all day long (and free, like all the food on site!). I mean, at GKTW you can have ice cream for breakfast! And yes, we might have done that on our last morning there.
Our villa was amazing in itself. Somehow GKTW gave Kennedy her dream home. Her favorite colors are purple and orange…and so was our villa! Once again designed for the kids, the bathroom attached to their bedroom was HUGE. A giant walk-in shower, a Jacuzzi tub, two sinks and plenty of space. Meanwhile Erik and I had a dinky little bathroom we could hardly be in at the same time. Thankfully we got blessed with a huge, comfy king-sized bed, which was so welcoming at the end of every night.
Every moment we were at the village felt like home. There was so much to do there, I almost feel guilty we didn’t spend more time there. It just seemed like in our week there, there was so much to see and do, we couldn’t possibly squeeze it all in.
There are so many more magical things about the village, but I know they like to keep some things to surprise those coming home for a while.
But, I will say that like everything on our trip, the Village itself was pure magic.
by Sarah | Jul 3, 2015 | All About Denver, All About Erik, All About Family, All About Kennedy, All About Me, All About Molly, All of Us, Cystic Fibrosis, Disney, Make-A-Wish, Redefining Perfect, Special Needs
Our whole trip to Disney and Universal was a magical experience. There wasn’t one minute the whole week that we weren’t in awe, happier than ever, and closer than ever.
We have so many tales of the fabulous magic that occurred that week. From our first day, and first stop, at Ollivander’s wand shop. There Kennedy (and her sister) were both chosen by Ollivander himself and received wands selected just for them.
Kennedy wanted to ride every ride, and proved herself a little daredevil. We covered a lot of Universal that day, and rode everything in sight. Kennedy and her sister got pictures with all of their favorite superheros.
Of course, at the Magic Kingdom there was even more magic to be had. We stopped for every photo opportunity, and the manipulations the Disney photographers manage was stellar. We started our day at the Magic Kingdom with Space Mountain and the rest of the day was just as exciting.
There are so many moments we could talk about. So many ways the trip was made magical for us. There were so many things everyone did, from Make-A-Wish, to Give Kids the World, to Universal, and Disney, that have us still talking about our trip. Moments that brought all of us so much joy.
There is one story in our week of magic that stands out above the rest. One twenty minute span of time that will be held up as the most magical and endearing of them all.
When we went to Epcot we mistakenly didn’t expect to see any princesses. Call us naïve on the behavior of all the characters that roam all of the parks. Halfway through our day we stumbled upon the beautiful Aurora. While the girls were meeting with her, the photographer let us know about all the other princesses and when they’d show up.
The photographer clued us in on an unscheduled appearance of Belle in her town clothes right outside of France. We killed some time, got some delicious French pastries (that our teen is still asking for to this day), and headed toward where Belle was said to appear.
Before Belle arrived, her photographer did. The kind lady spoke to our girls for a while, and suggested that Kennedy ask a few questions of Belle. Namely: a) What is your favorite dessert? And b) What is your favorite book?
Moments later Belle emerged from behind a building.
The beautiful princess made a beeline for my princesses. In a gesture we hadn’t seen even through all the magic of our days, she took Kennedy by the hand and kept her close as they chatted. When Kennedy asked Belle’s favorite book, Belle leaned in and whispered in her ear.
To this day, we still don’t know the answer ourselves—that is a secret held just between Kennedy and her new favorite Disney princess.
After that, Belle continued holding Kennedy’s hand, and the stories became more animated. As she dove into Kennedy’s question about her favorite snack, Belle talked about a trick Mrs. Potts once played on Lumiere, all the while still holding Kennedy’s hand.
For a good solid twenty minutes (give or take five minutes), Belle spoke with my girls. Her attention never wavering, and her hugs nice and tight.
Somehow she even got our picture shy teenager in as their very own “Beast” for a few photographs.
We saw many princesses, and some comic book heroes, but no other moment in time has stood out as much as this one. A moment in time that lingers with us, and most importantly, with Kennedy.
