by Sarah | Apr 2, 2015 | All About Molly, All of Us, Autism, Redefining Perfect, Special Needs
Today is “Autism Awareness Day.”
For some reason as I heard the words in my head this morning I immediately became amused. I understand that it’s about spreading awareness of autism, but I could only laugh and think But I’m aware of it EVERY day.
This is our face of autism. Those gorgeous ice blue eyes. The smile that has found its way to her face somehow. The personality that is growing every day.
Most would call us blessed, and we agree. Molly’s form of autism is mild enough that she will likely lead a “normal” life. A job, a family, all that a parent imagines for their child. That doesn’t mean she won’t struggle. That every day one quirk or another won’t rear its head to impede what would normally be an easy step into a careful shuffle of feet.
The little reminders that pop up.
The way she organizes her M&M’s by colors in a snakelike form before eating.
The way she delicately nibbles, trying not to let the grease or crumbs of food touch her lips or outside of her mouth.
The way we cannot break our established program or routine without a meltdown.
The way her hugs are strong but brief, no lingering touches or snuggles.
The way you see her mind processing and learning everything she cannot express verbally.
Leaps and bounds of progress have shaped our lives these past few years, a sparkling personality is emerging from behind the walls. A girl that wants to be a model. A girl that’s amazing at math and science.
With those she trusts she is bubbling and bright, even bossy…but the meltdowns still linger.
We are blessed.
All parents are blessed.
I hope today your awareness expands, but shouldn’t it every day?
by Sarah | Feb 11, 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
I can’t predict how many posts this is going to take over the next few months, so I’m not even going to try. Instead, I’m just going to let our story unfold. Some posts will be on one moment in time, a brief ten or twenty moments in time that impacted us too deeply to be buried with the other notes of our story.
The story of how we ended up where we did was both long and then very short. Short of it is after not being approved two years ago we were contacted by Make-A-Wish in April, saying that Kennedy and Denver could both qualify now and to call them. After that it was a heartbeat later that the Wish volunteers were sitting in our living room getting the kids wishes.
Kennedy wished for Disney/Universal.
I don’t think any of us was prepared for the amazing that followed.
The first step toward our trip involved a party. We got to invite some friends and met at a local restaurant.
All three of the kids were treated to Disney delights. No child was left out in the preparations, and they all got gifts.
The biggest one of all was, of course, for Kennedy. That big giant package was an elaborate Princess Anna costume for Kennedy (pictures to come in another post).
We were able to sit and relax with friends, while the kids played with the bevy of toys they were given. The volunteers went over many things that my head couldn’t wrap around, and as I’ve said several times, we had no idea what we were in store for.
The party went on for several hours, and then we all went home. Kennedy was an ecstatic mess, and even though we still had a couple of weeks before we left, the impatience for the trip was mounting.
Of course, the kids were bouncing off the walls, and so was I, but I was also packing and planning and stressing (Oh but I didn’t need to…). Oh, and planning and packing and stressing a little more. Talking to other people I knew that had done Disney through Make-A-Wish who had glowing reports just like I do now after the fact.
And so…we prepared to go. Left the dog with my parents, my hard drive w/ a neighbor for protection, got the fridge emptied and the laundry done.
We were ready to take off!
(Part 2 soon!)
by Sarah | Jan 21, 2015 | All of Us, Blogging Life, Crap, Photography, Random, Redefining Perfect, Special Needs
The past 4-5 months have been a weird sort of crazy busy, mentally wiped, not-really-busy-but-can’t-function sort of time. I got a job last year, and started working far more hours than I was hired for and my brain forgot how to function, I think. Or I just needed to focus on words. Or I focused too much on words. It’s hard to say.
I have so much to cover, and I’m trying to organize the words for full fledged blog posts, trying to wrap my mind around how to write a blog post again instead of a book. I’m trying to figure out how to expound on my world and the crazy, amazing, chaotic developments in our little corner of the universe, instead of building new worlds and characters and telling their story.
I want to resume telling my story again (while still telling theirs, of course, because I will likely never cease writing).
While I work on composing the words, here’s a few brief updates, destined to be turned into posts of their own eventually.
- We went to Disney World this year. This will require several posts, including one about Make-A-Wish and the true magic they created.
- I wrote over 500,000 words last year.
- Published 8 books.
- Contracted 7 more (& have 3 more in edits for Indie publishing later this year)
- I started working again, for real this time. After a few brief stints over the past 5 years, I’ve been at this job 7 months now. It’s the job I said I’d never go back to, and I’m still not sure how I feel about it.
- The kids are now almost-17 (3 days!), almost-10, and almost-9. Holy crap, how did that happen?
- Molly’s behavior has improved (thanks to a little help) vastly. Her school year this year has been so different, I’m the happiest I’ve been in a while w/ the school district.
- My brother got diagnosed w/ Parkinson’s (an early diagnosis thanks to early recognition of the symptoms based on our dad’s symptoms).
- My husband had surgery last month.
- We have a Monster High obsession going on around these parts (and it’s not just K)
- Our rescue dog has been with us almost a year now. I still don’t know how we lived without her stinky, strange, sweet, not-listening, mama’s-girl butt.
- K & I have started to read through the Harry Potter series together. It’s so much fun to share so much with one of my girls.
- I’m sort of turning into a planner fiend. Here’s hoping that helps with my whole “get back into blogging” plan.
- I’m trying some “30 days of”. Don’t plan on posting about them until I actually succeed (or get close to succeeding) in completing one. I’m hoping I can do anything for 30 days. I’m doing one of the toughest ones first. If I can manage to succeed in this, I know I can do anything.
There is so much more, and I have wonderful lists full of posts to create. I only need to get myself into focus to create them. I think my brain needs the release of getting these things out in the open. Maybe then I’ll start to feel like my brain is back on planet Earth.
Now, if only I could find those elusive extra hours in the day to accomplish everything I need to in every day.
by Sarah | Aug 11, 2014 | All About Kennedy, All About Molly, Redefining Perfect, Special Needs
Once upon a time I would explain it away.
“Ones a sensory seeker…”
of course…
“Well she’s just egging on her sister to get her in trouble.”
Then again…
“She knows it’s wrong and does it anyway.”
I think Erik would be happy if I just faced facts…
These two would be best known as “The Destructo Duo”.
No matter the toy…
The book…
The bed…
Whether they love it like no other…
Or could care less…
Whether it’s theirs…
Or ours…
Or something as old as myself that has stood the test of time…
They break it.
We’ve tried everything to curb the habit.
Threats.
Cajoling.
Pleading.
Nothing seems to work.
My Barbies? Lasted for twenty years until I gave them up thinking I’d not have any girls (oops).
Theirs? We’ve lost 2 to beheading’s, 4 to lost limbs, and 2 to horrifying hair situations.
The Monster High dolls are a blessing because they separate, but go back together easily.
Toys I grew up with that made it through me, and then Denver…now long gone because they weren’t spared the wrath of the crazies.
We just don’t know what to do anymore.
I’d hoped it would get better as they’ve aged…and in some ways it has.
Books are a little more cared for now.
I guess I should be happy for that battle won…
Maybe I will be…
At least until I find the next beheaded Barbie.
*~*
Any tips on curbing the destruction? I’m out of ideas. Yes, they share a room. No, there is NO hope for a playroom. TINY house, lots of people…we make do with what we’ve got.
by Sarah | Jun 11, 2014 | All About Denver, All About Family, All About Me, All of Us, Crap, Random, Redefining Perfect, Special Needs, The Teenager
The past two weeks have been overwhelming.
It’s been one thing after another.
Denver got sick.
My dad’s Parkinson’s has reared its ugly head something fierce.
Denver’s teenage life blew up into all sorts of drama.
Husband had some big decisions to make at work, and the end result was the exact opposite that we’d been hoping for over the past few years.
I think my head might have exploded at one point.
I’ve been short tempered.
I’ve slept too much to cope.
I haven’t eaten enough.
I’ve only eaten crap.
I haven’t written a word.
But I’m still here.
I’m hoping this is the other side of hell week(s).
I’m putting one foot in front of the other.
Trying not to make a sound.
Trying to remember that positive side of me and find that silver lining.
Trying to not reawaken the dragon.
Because life doesn’t wait for you to cross the tight rope.
It keeps going on.
And so will I.
by Sarah | Jun 4, 2014 | All About Denver, All About Erik, All About Kennedy, All About Me, All About Molly, All of Us, Anger Issues, Autism, BiPolar with Hypomania, Crap, Cystic Fibrosis, Random, Redefining Perfect, Special Needs
There are minutes.
Hours.
Days.
When it’s all too much.
When everything hits at once and I just want to collapse.
Cry.
Crawl in a hole.
Run.
One child with autism – now on ADHD meds.
Two with CF.
One of those that’s currently ill – and facing possible hospitalization for the second time in a year.
One of those that also has behavioral issues that make me wonder just how to handle it all with her.
A dad with Parkinson’s…which is rapidly growing worse.
A mom I want to help, but am clueless as to how.
A brother I haven’t spoken to in 2 years, with whom I’m now making baby steps to repair that relationship.
Finances.
A new job I never wanted, but needed to get.
A surgery to “Fix” a problem…that didn’t work at all, and might have made it worse.
The list goes on.
And on.
And I forget how to breathe.
I forget which way is up.
But I move on.
I continue on every day as I have every day.
Eventually I remember how to breathe.
My brain remembers how to process.
I find solid ground again.
Today I’m upside down.
Tonight sleep won’t be easy.
But maybe tomorrow…
Tomorrow will be better.
Today is “Autism Awareness Day.”
