Every Day I Wake Up Afraid – Pour Your Heart Out

Fracture
*This site is monetized. Any links in this post are likely to be affiliates.
Name Here

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 Read more »


by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.


Sorry! Go Back to Start!

Fracture
*This site is monetized. Any links in this post are likely to be affiliates.
SORRY!Return to Start

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 Read more »


by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.


Give me a Head With Hair

Fracture
*This site is monetized. Any links in this post are likely to be affiliates.
IMG_6273

One of those “perfect” dreams I had when I was pregnant, especially when I heard it was a girl, was doing their hair. I couldn’t wait to braid and ponytail and twist and bun. I’m not kidding when I called it a dream – because I did actually dream of doing these things. Several years ago I tried. As you can see in the picture, while I managed to make some complex hair styles, Kennedy had thin, thin, thin, hair with a few bald patches in the mix.  In this picture, K is 4 years old. Another problem she had is how insanely brittle her hair is.  I have pictures of the back of her head where it looks like a hellish rats nest – freshly brushed.  It is so brittle and harsh, it’s hard to believe. Today my little beauty is nearly 8. And her hair is, if possible, worse.  After a brief period where her hair seemed to thicken, it’s once again thin, exceptionally brittle, and she has resumed the issues of bald patches.  Currently, her hair is kind of really long  - or at least part of it is. There’s been so much breakage, that it gets sort of thin at the end, and dead. I’d love to attribute this to genetics, but neither Erik nor I ever had an issue like this.  My hair gets brittle now because I’m such a ginormous fan of colorizing…but mostly mine’s very thick and healthy, and so is Erik’s. So…we think it’s the CF. We’re going to step up her vitamin regimen a little, and this weekend we’re taking her for a cute bob-style cut…but what else can we do? I’d still love to be able to achieve the dream of doing her hair while she’s still young enough to want me to. Or at least let her have the chance when she gets older. Any tips, tricks, or natural remedies for thin/brittle hair? (For reference, we have used the BioSilk product on her…yes, I know it’s not natural, but it’s AMAZING when we have time to do it…I use it on myself, too. Love that stuff, but it only helps with the dead ends and softening. I wouldn’t mind some equally amazing natural remedy!!)   Read more »


by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.