I've noticed that my attitude needs some serious adjustment. My words have been twisted by sarcasm and pessimism lately. I'm sorry. I know, I know, I'm entitled to vent occasionally. And be angry and cry sometimes even. But, seriously, my blog has definitely been reeking of negativity that just leaves me wanting to wash this bad taste out of my mouth.
I've spent more time than not being bitter over the past couple weeks. Not healthy. And certainly not helpful. To me or anyone else that may be reading.
I complain about the doctors and nurses that get snippy with me. But, I'm not snipping back the way I should. To them. I'm snippy behind the scenes. Yes, they deserve a good verbal lashing from time to time. But, I keep writing them off as jerks and go on to bitch and moan here. No one reading here to check in on Austin wants to listen to my soap box every single time I have a confrontation with a health care provider!
I'm honestly ashamed of how much energy I've wasted on negativity. All it does it interfere with the positive energy I should be directing at Austin.
So, take this as an attempt to clean up my act and prioritize my concerns. Which are undoubtedly Austin, his seizures, and our determination to keep fighting for him.
One last thing though...before I completely try wash myself clean of the sarcasm. I feel the urge to go out of Negativeville with a bang.
The last few convos I've had with our providers has stirred up some issues that I need to address. I'm not the quick-talking, assertive type I aspire to be. I rarely say exactly what's on my mind (even if it actually comes to me before the end of the conversation) out of fear of hurt feelings, drama, or me looking callous or ignorant. I'm a people pleaser and it's obviously damaging to my inner strength. But I'm gonna get it out now!!!!!! Yep, I'm hiding behind my blog.
Here are some (possibly taboo) scenarios I've encountered along this journey and my delayed responses...
Warning...the people pleaser in me will be in OFF mode.
My simple requests:
For the clueless parent that feels so inclined to rub salt in my wound with his/her child's brilliance:
I hope that someday I will have accepted this life and be content with it. I hope that someday I will not care how others perceive my life or my son’s. Right now, though, the pain is still very fresh. I am emotionally fragile to the outside world of bystanders peering through the windows of my world. Same goes for me peering in to see your world. I am happy for you and your beautiful, healthy, typical family. I am. But, please know that I may not do the happy dance with you as you boast at how your little Bobby is progressing at the speed of lightening. Sorry, but it is crushingly painful for me. Because it is a reminder. There are always reminders. I’m just overly sensitive that way. Forgive me, but I was presented with that very dream only to see it ripped up and possibly tossed away. Respect that in my own time, I will come to grips with my reality and someday rejoice in your fulfilled life and genius babies. Right now, I’m still picking up my own pieces. I do not wish to play the martyr, but respect my situation, please.
For the gawkers that love to display their disapproval at my parenting skills: Don't be so quick to pass judgment on me and the decisions I've made. Yes, my almost two year old still sucks a newborn Soothiepaci. What's more he still takes a milk bottle too. I understand that this is a no-no and I'm not trying to deliberately baby my son forever. But, please keep in mind that there may be special circumstances. Not all of these babies still on bottles and pacis are spoiled. Some of them have been through more than kids their age should ever have to endure. If they are comforted in the slightest by their bottles and pacis, so be it. They shall have them. Others lack the developmental skills to drink from a cup or a straw. No more explanations needed.
For the grumpy parents who like to complain about their children annoying them:
Maybe you need a clue (see clueless parents), or maybe you do this as an attempt to downplay your life of normalcy to me. Don't. Complaining about how you'll snap if you hear the word, mama, one more time will not make me feel better that my son won't/can't say it. It's only makes me angry that you are not more grateful for your typical and chatty child. Say you're 100 lbs and I'm 400 lbs...Would you complain about your weight to me? Doubtful. Or if I had the flu and you had cancer...Would it baffle you as to why I would be complaining to you? Probably.
For the ones who remind me how much worse off we could be:
I'm fully aware of this. You don't have to remind me. I remind myself everyday. But, that doesn't make this situation any less painful. I do thank God that he doesn't have a fatal disease and that he can sit up and walk and see and hear. Yes, I am thankful. But, I still pray that he will someday wrap his arms around my neck and tell me he loves me.
For everyone who has minimized his disorder by saying he'll just one day grow out of it:
That would be a dream come true. But, have you noticed it has already taken it's toll? Maybe he will grow out of it. But, do you honestly think he will magically just catch up to speed overnight? Regain everything he's lost and fast forward to where he should be without any problem? Would that mean he is going through any less right now? Not later...NOW. Growing out of it doesn't take away the fact that he suffers from over 100 head dropping, sometimes body dropping, seizures a day NOW.
For those of you feel awkward around me and my son because he's not a typical toddler:
Don't. He's still a happy, energetic, lovable sweetheart! He may not participate in pat-a-cake or peek-a-boo with you. He may not laugh at a funny face or sound you make. But, he has his own personality and you are the one missing out if you don't see it. Or at least try to get to know him.
For those of you that always sweat the small stuff:
It’s really amazing, thinking back, at how shallow and superficial my life was before. I focused on having the perfect life and vowed to accept nothing less. My prayers consisted of selfish desires. The perfect dream house and that perfect job with top notch pay. Now, I'd just like to tackle that stack of medical bills. Perfect truly has a new meaning. Now it’s as simple as having a seizure free child that throws age appropriate temper tantrums that protests he will only eat cookies for dinner. Perfect means no neurologist visits, or spinal taps, or routine EEGs and MRIs. No seizure meds that reduce cognition and alertness. Perfect would be hearing MOMMY! to high heaven and finding Austin-height scribbles on my semi-freshly painted walls. Perfect would include toy trucks in the toilet next to a blushing toddler. What might have been a crisis before would suit me just fine now.
So, while I realize I may have surprised some of you, lost a little respect, or maybe even lost some readers, I needed to make these thoughts known. I'm learning that speaking my mind does not always include getting approval. The people pleaser is cringing right now and wanting to post a disclaimer so as to not offend anyone. But, the big mouth in me (that a lot of you know too well) is cheering!!!
Positive Holli from now on (unless a run in with you-know-who warrants otherwise)...
By the way...
For those of you have graciously and patiently listened to me and offered up comforting advice...or joined in and griped with me:
Thank you! I love you dearly! :)
Okay, so it's only been a few hours since I published this post. And...I caved to that nagging thought from the people pleaser. Request #1 is not sarcastic. I truly am happy for anyone and everyone who has a healthy, disorder-free child. I would never...ever...ever wish this on anyone. And I would never ever imply that my precious boy does make me over the moon happy. I cherish him down to the very last drop. I am just not content with what has happened to him.
It's now after 10:30 pm here. There goes that thought again. Nag. Nag. Nag. You know, the one where I was struggling with myself over whether or not to post a disclaimer? It won. Again. This is not directed at ANY of my readers (that I'm aware of). It's a bunch of randomness that I've encountered over the past year. It's doubtful that anyone who really should be reading it will. It's just all the things I wish I would have said when I had the chance. Like for the people that gave me the dreadful stares while I gave my overweight baby a bottle in the doctor's office (while he was a balloon on ACTH). I felt like I was being mentally name-called by some of the gawd-awful looks I got. LIke, you really could stand to cut back a little, lady..Or, to the woman in the mall that said my son looked too old for a pacifier.
And, one more thing. I'm not offended by everyone who says that Austin will grow out of it. Some of you truly believe that. I wish I did too. Some of you know that regardless, this is still a serious disorder. But, I have honestly and truthfully had some people say, Oh, he'll grow out of it. Nine times out of ten they do. He'll be fine. Like they don't understand why it bothers me so much. I mean, it's not like he's having grand mals or anything. If they only knew. There's a reason infantile spasms are referred to as the catastrosphic epilepsy disorder. Just because they are small in appearance does not mean that they are affecting him any less than if he were thrashing about on the floor.
Okay, I'm developing a case of what Ken would call verbal diarrhea. Need to stop now.