I have struggled for months about whether or not I should even post the following, but tonight was the final straw and it is what it is. I am human, and if you know me then you know I tell it like it is and never sugarcoat anything. I am a Scorpio and that itself should give you an idea as to the type of person I am.
Lately there is someone in my life who thinks they know everything when it comes to Arley. Reality is they don't, they have no clue. While they themselves are a parent, they have always been married and never had a sick child like the way Arley is sick. Meaning, they have never had to carry the burdens on their shoulders that I do as a single parent, working double duty to be both mother and father.
They have no idea the constant struggles I have and the amount of stress I am under everyday. Not working, bank account dwindling, having to sell off possessions to be able to afford the day to day expenses, never having a true moment to myself away from Arley and away from all things cancer, hospital, and doctor related.
They have no clue what a day in the life of a chemo patient entails. Let me tell you, it's not a barrel of fun. I don't like having my daughter crying because she has to have a needle shoved into her chest, that she's made to wait around for lab work to come back before getting her chemo or that the whole damn process literally takes for-freaking-ever from start to finish every week. How if I am not quick enough with her nausea medicines that we will be surrounded by a sea of vomit.
They have no clue that I lie awake at night usually around the same time as I write this (2-3am) and watch Arley sleep to make sure that everything's okay. To surround her by towels and a bucket because you just never know when her body is going to attack.
That my newest worry is what's going to happen at her physical therapy appointment at the end of the month and the judgement that is probably going to come with it. Kids have no damn filter, bless them really, but they already notice she has no hair (even though its starting to come back a little) what are they going to say when they realize the next thing to happen?
Maybe if you took a moment and realized that while you may think you know everything, you haven't walked a mile in my shoes, hell you have hardly walked a few simple steps. You watch this all happen from the sidelines, but I literally breathe this cancer business morning, noon, and night just like Arley does. The difference is, I'm an adult and this probably effects me just as much as it does her.
You have no idea how many tears I shed behind closed doors and wonder how the hell the both of us are going to survive the next six months of chemo, physical therapy and whatever else may come our way. So while you may "mean well" and I use that term very very loosely you just simply don't get it. You are not her doctor, her nurse, or any other medical professional involved in the care and keeping of her.
Don't tell me how she should get her treatments, whether she should be doing this or that, because honestly I discuss everything with her doctor until I am satisfied enough in my decisions and follow that advice. I question everything and don't sign off until I have crossed my T's and dotted my I's.
Go on ahead living in your Peter Pan world, because if you pretend long enough I'm sure eventually you'll believe half the shit that escapes your mouth. Just know this. I am stronger than you, I have gone through more shit in life than you, but there is nothing in this world that will ever bring me down as a mother, a woman, and a fighter as well as advocate for my daughter.
Keep up with the way things are going and you won't be so happy with the outcome. Arley and I didn't ask for any of this, and seriously who would? But you need to have a little more patience, hold your tongue more, and realize finally that you don't know everything, nobody does, and maybe just maybe if you do that and give credit where credit is due that things would be a lot better and run more smoother. Until then, it is what it is and I am perfectly okay with that.
Subscribe to:
Post Comments (Atom)
I agree with you wholly-hearted. It is not something that someone understands unless if they are a parent of a child in the same boat as you are. I hate that people think they know the best for you, and Arley, when in fact they do not. I do not pretend or claim that I know what you are going through, because I don't have an idea what it is like to be a mom of a child who is battling cancer.
ReplyDeleteI can only offer what I can do, empathize, and support you in any way you need. While I do not know what it is like to have a child who is very ill, I do know what it is like to have a child that is facing an issue that will shape, and reinforce my kid into the person he is. I have the same attitude toward people when they try to tell me what to do for my child when it comes to his peanut allergy. They DO not understand what it is like to have death looming over my kid's head. They DO NOT understand what it is like to have that worry behind of the head about whether I have an ability to act if my son goes into anayplaxsis shock.
I imagine what it is like for you. I certainly do not understand what you are going through, because I am not in that position. However, what I can understand is having to fend yourself or your child against people that claims they understand when they clearly do not. Sometimes that sucks even more than plain ignorance, because with plain ignorance, you can educate people, but with that attitude, you can't really do anything bout it except keep trucking on, and doing what you do is right for yourself, and Arley.
Thank you Ashley!
ReplyDeleteI debated even saying anything for so long, but it's like enough is enough. I am doing the absolute best that I can given the circumstances and situation.
I know you can relate given that F (not sure if you want his name on my blog) has known and diagnosed allergens and you know what it's like to educate and navigate this kind of world. Just wish people were more supportive in understanding that this isn't easy and we don't ask for our children to have these hiccups in life.
I guess the good thing about it is, our children will navigate the world a little more differently and be more aware of their bodies than most ordinary healthy kids because they have to be in order to survive. I appreciate that you have been someone that I can go to and talk to about this whenever I need to vent, and that you have given such kindness and compassion in return.
Navigating this world is hard enough and even more so when cancer and allergens are thrown into the mix. I guess we just have that much more of a leg up on society because we have to be more aware and vigilant for our children.