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.
by Sarah | Mar 30, 2014 | All About Family, All About Home, All About Kennedy, All About Me, All About Molly, All of Us, Blogging Life, Redefining Perfect, Sponsored
*Today’s post was sponsored by Fruitshoot. All opinions and lunch ideas are my own.
I have this special treat I love to do for my girls.
I don’t do it as often as I should, but then it’s not a treat, is it?
I like to make bento-style lunches for them.
I create sushi rolls out of sandwhiches, or just the meat and cheese. I add in vegetables and fruits, and the best part? They are so excited by the fun take on the food, that they happily eat all the healthy food I can pack into the meal…and even better? They eat more than they would if I just offered them a sandwich.
Today we’re heading out on an adventure for our first day of spring break. For my new job (more on that later), we’re heading out to a farm to check out the baby animals. The girls are so excited, but I’m going to surprise them with their favorite kind of lunches.
I’ve got all their favorites in there. Tomatoes, cheese, carrots, bologna, craisins, strawberry’s, yogurt covered raisins, and hard boiled eggs. I rolled the bologna and cheese into sushi-like rolls, and then made the [amazon_link id=”B00CDPNA70″ target=”_blank” container=”” container_class=”” ]kitten and panda faces[/amazon_link] out of them, too. I went with a “round” theme with the carrots to match the rest of the fruits, and mixed all the fruits, dried and fresh, together for them.
All of that is topped off with their (and my) newest favorite drink. Apple Fruitshooter’s!! They love the tasty drink, and that they can open them themselves (that whole independent streak they’ve got going) – and I love that handy little note at the top of the label “No Sugar Added”.
It’s a fun and easy way for us to all get what we want…and it’s a great way to get a drink into their lunches.
So how do you like to fun-up your kids lunches?
*~*
Like Fruitshoot on Facebook
*~*
*Today’s post was sponsored by Fruitshoot. All opinions and lunch ideas are my own.
by Sarah | Mar 21, 2014 | All About Kennedy, All About Me, All About Molly, Blogging Life, Pinterest Challenge, Redefining Perfect
Time for another round of Pinterest Challenge!
This time I decided to take on a craft – and one my girls could participate in.
So we went with BALLOON BRACELETS!!
I actually just found this Pin a few weeks back. The original link is not currently working, so I can’t share it, but the premise was simple.
Elastic.
Twisty balloons cut into pieces.
I did add a detail. In order to make the stringing of the balloons onto the elastic run smoother, I put a safety pin on the end of the elastic. It made it about 100 times easier.
So I did a test run, in secret, away from the girls. I kept my color scheme simple, white, blue and green and slid them onto the elastic. I found myself sometimes struggling to get the balloon on, but overall it was pretty easy. When it was done, I tied the ends together, pulled one of the balloons over the tie and slipped that sucker on.
Other than making it a wee bit too tight for myself, I liked it.
(And to answer one of my reader questions – NO. The balloon did not tug on my arm hair.)
So a couple of days later, the girls got off the bus, did their homework and it was their time to try.
I gave them a short, five minute instruction and they were off!
They both picked it up really quick, although Molly was a bit faster to string on the balloons than her sister. Must be all that fine motor therapy she’s had over the years.
In the end, each girl had 3 bracelets and big smiles.
So of course, I have to say that this was definitely a Pinterest YAY!!!
by Sarah | Mar 10, 2014 | All About Denver, All About Erik, All About Kennedy, All About Me, All About Molly, Redefining Perfect, Special Needs
Every day I wake up, and my first thought is of my kids.
My first emotion is fear.
Will today be the day Kennedy gets sick? Maybe sick enough for the hospital?
Will today be the day Molly has a breakdown? Will I need to go to school because she isn’t manageable?
Will today be the day Denver ends up in the hospital…again?
Every parent has fears and worries, and mine aren’t “worse” – they’re just different.
But they’re real.
There isn’t a day that goes by that I don’t suffer through the torments of worry. Whether through a passing thought, or an entire run through of possible calamity. Whether for one child, or another, or even all. Whether triggered by a cough, or a teacher email, or just my overall sense of awareness.
It’s always there, lurking, leering, waiting to pounce.
Every day I wake up afraid.
Every day I shove the fear aside and face the day.
I don’t have a choice, and I don’t want one. So long as I can push the fear aside I will. It’s a defense mechanism. Preparing me for the worst, so the every day can feel better for me. So I can see the bright side when things look horrifically dark. So when the worst does happen, I am prepared. I am ready for the hospital check in. I am ready for the teacher meeting. I am ready for the specialist appointment.
I’ll embrace the daily fear, as long as I can continue to see the daily joy.
*~*
Written for Things I can’t Say’s Pour Your Heart Out
by Sarah | Mar 3, 2014 | All About Molly, Autism, Redefining Perfect, Russell-Silver Syndrome, Special Needs
One of our family’s favorite board games is SORRY! We play round after round on family game nights.
One thing no one ever likes is getting “Sorry’ed” right back to their start. One or all of us have been known to whine and groan over the inevitable gleeful “SORRY!”
No one likes being told to go back to start.
Now, that’s what we have to do.
Almost six years ago Molly received her “official” diagnosis of Autism (as well as Russell-Silver Syndrome). We foolishly felt relief at the diagnosis thinking now we could get help. We didn’t know what the road ahead of us held.
Now we’re drowning.
Since Molly is so high-functioning (possibly Asperger’s?), that our concerns are often set aside by others (i.e. the school) until a specific behavior presents itself. Every year we go in and try to be prepared for everything, but one of a few things happens.
- She starts off so off-kilter by the change of schedule/new event that any quirk seems mild by comparison
- Her behavior is so beautifully spot on and normal that any deviation is like a sudden attack on everything we thought we knew (or rather, they thought they knew)
- A new behavior develops that not even we suspected
This year we have reached a breaking point. The school has set her on a new behavior model because she degraded so tremendously after Christmas break. She isn’t listening to her teachers, she’s refusing to do anything, and she is avoiding tests like the plague (w/ standardized testing in a few weeks, this is not good, even w/ IEP accommodations).
The development of a possible learning disability on top, plus lack of focus, and weird tics and behaviors at home had Erik and I at our wits end.
We called the doc and got her in for her annual physical and set about finding out the next step.
Our pediatricians best advice?
SORRY! GO BACK TO START!!
So we must return to the geneticist that gave us our initial diagnoses. We’ll need to use him to unravel the confusion we’re currently in. There may be treatment for ADHD, we may see about getting her into a local ABA treatment, we aren’t sure what’s going to happen, but we have to go back to the beginning.
Again.
It’s a never ending process of hurry up and wait.
Mostly, Erik and I need to find local support. We find ourselves at such a loss so much, that we’re grasping at straws that aren’t there. We don’t know how to handle things, and that’s something that’s really hard for both of us to admit.
Now we wait until May to meet with Dr. E again, six years after our last appointment. Hopefully he’s able to help not just her, but us, figure out how to go forward now.
All we want is for her to be happy.
At peace.
Peace is so hard to come by.
*~*
Written for Things I can’t Say’s Pour Your Heart Out
by Sarah | Jan 20, 2014 | All About Molly
Christmas of 2012 Santa brought Molly a new toy.
A stuffed unicorn in a purse that said “Sparkle”. Of course, Sparkle became her name.
Sparkle spent all of 2013 well-loved and adored. She was so much Molly’s favorite toy that by October she was looking pretty tired.
Her sparkly horn no longer sparkled, the gold of her hooves was stripping away & one hoof needed full replacement.
The bright white fur had become dingy, and the flowers on her side faded.
Sparkle had seen better days.
So a letter was written.
A letter to Santa.
Asking if Sparkle might be repaired.
With the silly addendum that maybe he could make her colorful.
For two months Molly waited.
Once in a while you’d hear mention of how Santa would be returning Sparkle.
Just before Christmas, a few snags erupted, and Santa alerted me the “repairs” were in jeopardy.
But, at the last minute, he pulled through.
And for the second year in a row the best toy ever was Sparkle.
The favorite gift of the year, and continuing daily, was an ‘old’ new toy.
Sparkle is sparkling again…and so is Molly.
There are minutes.
