by Sarah | Mar 8, 2019 | All About Me, All of Us, Blogging Life, Friday Feels, Parkinsons, Redefining Perfect, Special Needs, Story of Me
Once upon a time, there was a young woman whose family moved her halfway across the country. For years after they traversed the familiar path back “home” for visits with family and old friends. Along that familiar path, many traditions were formed. The start of every road trip with a Journey album. The swapping of control of the radio. The games of License plate and alphabet.
Then there was the Tale of the Tuttles of Tuttle Crossing. Tonya, Tina, Tasha, Tony, Tom, Travis, and the like. All started the day father and daughter spotted Tasha on her horse Tennesee Tuxedo.
Years passed, the trips slowed, and faded into occasional jaunts. The young woman and her family made several moves around the country before all managed to find their way back to that podunk town and settle in. The trips had since all but stopped except for funerals. The daughter married and moved out.
Then the father was diagnosed with Parkinson’s.
Parkinson’s does much more than rob a persons muscle control.
It robs them of their brain little by little.
It robs them of themself.
It’s ugly.
Nasty.
Hateful.
**
Several years ago I realized that the man I’ve loved my whole life was no longer really my dad.
Hallucinations and dementia caused by Parkinson’s had taken the control freak of a father I grew up with (seriously, every minute of vacation was planned)…and turned him impulsive and…it’s hard to describe unless you’ve lived it, which I’m sure many of you have.
It’s just not the same person.
Then, one day a few months ago I spotted a familiar name among the hundreds of names I see every week at work.
Tuttle.
It sparked a smile in me, and I impulsively texted my dad to tell him I had just seen a Tuttle.
This triggered a back and forth texting frenzy of sorts speaking once again of Tasha, Tonya, their Grandfather Theodore, and Uncle Titus…and “let’s not forget their Native American descendant Tonto Tuttle…”
I laughed, I cried.
For five minutes of rapid-fire text exchanging I had my dad back. Our joking and laughing on those 9 hour road trips. Our anticipation of reaching “Tuttle Crossing” in Ohio every single time. For the joke that never got old.
I laughed…and I cried…
For a moment…he was there.
Recently, he forgot my sons name.
His golden boy, his favorite grandson, his first grandson whom he himself named.
Now I live for those moments.
Even if I have to go back in time to find them. I will. For as long as I can.
by Sarah | Feb 22, 2017 | All About Kennedy, All About Me, All About Molly, All of Us, Autism, Blogging Life, I'm A Reader, Redefining Perfect, Special Needs, Wordy Wednesday
The first time I saw “The Baby-Sitters Club” in graphic novel form, I rolled my eyes.
“Why on EARTH would they make those into graphic novels when there are perfectly good books out there?”
It annoyed me.
It seemed a cheat.
I was a snob.
It took me looking at my child, my Molly, eagerly reading for the first time in ages after declaring she now hated reading. Her attention span wasn’t enough for chapter books to hold her interest, but graphic novels were another story.
It took me letting go of my bias to see how graphic novels could benefit a child like my girl.
I picked up those exact Baby-Sitter’s Club books for Molly at the library.
I picked up a bunch of graphic novels for myself to try.
I found I don’t care for the comic-book ones…but those that tell a story (or stories), I enjoy.
My favorites so far have been Through the Woods and Amulet. I have several more to try, and I’m excited to do so once this chaotic work week is over.
The best part of opening my mind has seeing my daughters both excited to read again.
Molly is so excited that she’s actually begun picking up chapter books again.
Kennedy is enjoying interspersing her chapter books with these quicker reads of graphic novels.
I’m enjoying expanding my painfully narrow repertoire of reads to include something different, and learning what I like in this new area.
So, in short…you can teach an old dog like me new tricks. It just takes me letting go of my bias and opening my eyes to see the benefits.
So now that I’ve opened my eyes, I need your help!!
What are the best graphic novels for my girls?
What are the best ones for me?
by Sarah | Dec 30, 2016 | All About Me, All of Us, Depression, Personal, Redefining Perfect, Special Needs, Story of Me
I’ve always been the “Silver Linings” girl.
Well, maybe not always. I did have a rough time as a tween/teen.
Still, since adulthood I’ve tried to always keep on the bright side, to put a positive spin on things, to see the good in people and believe in their best when they might not be showing you their good side. It hasn’t always been easy, but I’ve tried – and mostly succeeded.
There’s been times I’ve been down pretty deep in the doldrums, times where it lingered. Somehow I’ve always pulled myself out. I’d hesitate to call it anything like depression because I’ve seen depression, I’ve seen what pain others feel, and I was never that deep, never that lost.
This year has been rough. I’ve said it many times. It’s knocked me down over and again, every time I’ve tried to pick myself up.
I thought it was just the bad times knocking me down.
Those were the reason I couldn’t pick myself back up so easily.
Those nasty, horrible events were the reason I couldn’t drum out the doldrums as I always had before.
They were the reason the good times didn’t have the luster they usually did.
In the past couple of weeks I’ve had to be honest with myself.
I’ve had to be honest with my husband.
And I forced myself to be honest with my doctor.
I am depressed.
I can’t do this on my own.
I’ve been trying to claw my way back out for months all on my own.
All it’s done is left me nasty, bitter, and angry on top of depressed.
I was always worried I’d insult those with severe depression by admitting mine. However, my bipolar husband thinks I’m being ridiculous by thinking that. As he put it, “Would you not admit you were sick because someone else has cancer?” Sometimes, he’s pretty damn spot on.
So here I am. Being honest with you all, as I’m attempting to be honest with myself.
I am surrounded by my family, but I feel alone.
I am surrounded by joy, but I feel removed from it.
I feel like I’ve tried to reach out, but no one reaches back.
I’m tired of not going out, because I don’t see the point…and because I’m afraid no one will care either way if I’m there anyway.
I feel like the bad is winning. That we will never be in a good place again, personally, financially, physically.
I’ve begun to seek help, but I think it’s going to be a long row to hoe.
And I’m so tired of feeling alone.
by Sarah | Jun 20, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
We waited a month for this visit.
In the grand scheme of “waiting for a specialist” times that has ever been for us – a month isn’t bad.
Still. We waited a month. Worried over her shoulder, and what the doctor would say. Our geneticists suggestion of “Connective tissue disorder” ringing in our ears.
We worried.
Hoped for the best, expected the worst.
Wondered over whether there’d be an MRI. Or possible surgery.
Of all our fears we never once expected it to become what it was.
We never expected to be left wondering how a visit to a specialist would turn into a horrible vaudeville joke.
“It clicks when she does this.”
“Well, then don’t do that.”
~blink blink~
You would think I was exaggerating.
But I’m not.
None of our concerns were truly addressed.
We were dismissed with a prescription for therapy for “Scapular strengthening”. Told that she shouldn’t click her shoulder. And that was that.
No words about the connective tissue question.
He barely touched her shoulder, only tested her strength.
The geneticist spent more time on her shoulder than this doctor. He didn’t check to see if her arm dislocated like the referring doctor did.
An X-Ray.
A bad vaudeville joke (and he wasn’t even kidding).
And no answers.
Still.
I don’t even know where to go from here.
by Sarah | May 10, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
I should have known better.
My first mistake was getting “comfortable”.
As comfortable as anyone can when you have three special needs kids.
Everyone was doing well, no major incidents for two years (*knocks on wood*). I was well-adjusted to our current status, our version of normal. Our version of perfect.
Were there hiccups? Well, sure. We have two girls on the verge of tween-dom and all the drama that comes with. Drama we’d been through with the now-teen.
But overall, we were good. We had things handled. IEPs in place, regularly scheduled doctors visits…in fact, we’d gone down in occurrences of those (from quarterly to every third, or half a year).
During our month of hell, part of the trauma was dealing with issues with Kennedy and Denver and their new doctor’s ways that we didn’t like and his poor poor choices. Situations we are still coping with, but wish so much up in the air, we are in a holding pattern (I hate holding patterns).
Then there is Molly.
Several months ago we were hanging around the house. I had my hands on Molly’s shoulders, and she moved. Immediately I noticed something odd. A very pronounced clicking when she moved her shoulder. I asked her if it hurt, it didn’t. I knew it wasn’t right, but with the chaos of all the crazy around this house it got pushed to the background.
Then today we had her regularly scheduled autism checkup with her geneticist/neurodevelopmental doc. We love this man (if not the hospital he’s affiliated with), and he’s been great with Molly from the start.
So I said, “I know this isn’t your area, but could you check out this weird thing?”
He checked her shoulder, had me do the same to look for a specific issue, then had her lie down and rotated it, checking everything. As she sat up, she decided to show him how she can bend her fingers in hyper-flexible ways. “Isn’t that cool?”
And so, the doctor explained to me that Molly has no connective tissue in her right shoulder. When it’s rotated, it becomes dislocated and pops back in. It is bone on bone.
Add in the hyper-flexibility in her joints…and he thinks we’re looking at a connective tissue disorder–one that we aren’t specifically testing for yet.
First step–we must go to an orthopedic doctor for her shoulder and determine the best course of action. She’s to stop goofing around with it (she finds it a neat trick), and take it easy on it, even though it doesn’t hurt.
As for the connective tissue disorder (he did not specify which as of yet)…it’s a wait and see. Deal with her shoulder first, watch for other symptoms (migraines, heart palpitations).
We are once again in the “hurry up and wait” world.
I hate being here.
With a white hot passion.
I was definitely stupid to get comfortable.
I know better.
by Sarah | Mar 17, 2016 | All About Family, All About Molly, All of Us, Autism, Disney, Make-A-Wish, Redefining Perfect, Special Needs
2014 – Disney, Universal, Make-A-Wish…My dear sweet Molly.
Oh, how she loved so much about the parks.
The princesses, the speedway (because she can drive!), the ice cream (because, DUH).
Just about everything was just AWESOME.
There was one thing that held her back.
One thing that kept her sitting on the sidelines about 50-75% of the time.
She was afraid.
Of the rides. Of the roller coasters. Of anything that left the ground in any fashion.
Lucky for her, her brother wasn’t too keen on the rides either. They sat out most of the rides.
Fast forward one year.
2015.
The year started out much like the year before.
Molly holding back.
Then something changed.
Something small.
She noticed the Barnstormer. She was afraid, but jealous of us going on all these rides and coming off super excited.
And so she took a chance.
She rode the ride.
And came off exhilarated.
She wouldn’t ride one that went upside down, but she went on every roller coaster from that point on. We went on the Barnstormer three times. She even, on the last night, went on Space Mountain. It terrified her, but she ended up loving it.
Little by little she went from Molly the Meek to Molly the Daredevil(ish). It was so much fun watching her emerge from that little ball of fear into eagerness.
She admitted after our last roller coaster (Space Mountain), that every ride scared her, but that was half the fun.
Molly stepping out of her comfort zone is a huge deal.
So thank you, Disney. Universal. For bringing out the daredevil in this one. It’s awesome. You’re awesome.
Several years ago I realized that the man I’ve loved my whole life was no longer really my dad.
