Saturday, June 22, 2019
I've been struggling guys. I'm not sure we have been properly armed. For my kids' ENTIRE LIVES...we have been seen by Children's Hospital. Even the kids without Neurofibromatosis. It was out one-stop-shop. We felt safe there....and all of our issues for the most part were addressed, in some form.
But now...Bailey is 23, Braden is 21...And basically we are being told 'Good Luck' and pointed to directions that aren't as helpful.
I, myself don't have an 'NF DR." No one sees me specifically for the symptoms of Neurofibromatosis....Same goes for my adult children.
I wish there was a proper transition -
What are we supposed to do....?
Lately, Bailey has been complaining of headaches....Like call-in-sick-to-work headaches. And I struggle with how serious to take it. On one hand, it could be something serious...Like her tumors are starting to grow...or a new tumor....or any number of things....But on the other hand...she has been stable for so long...maybe it's nothing...!?
Parents of adults with medical needs....How do you do it..? How serious do you take things...? How serious do doctors take things..?
I, like you am just trying to figure things out as I go...And HOPEFULLY get some answers along the way.
Kinda Frustrated here...
LMK If what you guys do for your adult children...I'd love to hear some ideas!
Posted by Ms. Kissy at 10:56 AM
Friday, June 7, 2019
So, I realize that I have let a lot of things slide that were once very important to me. I don't know why I let this happen. It's not like NF has gone away....Or that we don't struggle with the symptoms anymore....Cuz, we do. In a BIG way.
It's just- Sometimes, I think, "Why Bother? What difference am I making, if I write a blog post or not...?"
Well, during the last couple of weeks, I have received a handful of emails from people who stumbled across my blog....and VERY DATED posts....Ya. So. I kinda suck.
Life is busy. Crazy. And just sometimes - It's easier to stay in my own little world- And not share. But....This goes against EVERYTHING I want.
Yesterday, I called in sick to work. Now, yes, before you ask....I am legit sick. Could I have pushed through...and gone in..? Yeah...sure. I mean, I haven't called in sick to this job in over 4 yrs...So ya, I COULD have made it in....But you know what...? Yesterday...I put ME first...And the theater...is still standing (as far as I know...LOL)
But, this got me thinking...About what it is I REALLY want to be doing with my life.
Managing a theater has its perks, don't get me wrong....But it's definitely not my passion. I want to be OUT there. Talking, Uplifting.
I'm going to try to rein this blog back into what it is meant to be...
Thank you to those who have hung in there!
Posted by Ms. Kissy at 11:37 AM