My Top 10 things never to say to a parent of a child who has cancer!

WE ARE OK :)

WE ARE OK 🙂Photo on 6-14-14 at 7.11 PM #4

Don't mess with us :)

Don’t mess with us 🙂

I just want to say Sorry in advanced if anyone is offended by  my little sarcastic post! I wrote this a week ago and I was debating if I should post it, but I needed some humor in my life. If anyone wants to know where my son gets his Smart ** personality from, well that is all me! I know when he is a teenager I am going to be in for it! On a positive note, no one who actually follows this blog is guilty of any of these! Even if you say something similar, I do not mind because I know it is coming from a good place! I am so grateful for each and every one of you!! XOXO

FYI- Talking about the SuperHero, he started his 3rd of chemo on thursday. He never fully recovered from the 2nd round, so its been a little rocky this time around. I promise to post more about his progress next week, so stayed tuned!

 My Top 10 things never to say to a parent of a child who has cancer!

How are they feeling?

He is feeling fantastic, he can practically run a marathon right now…said no one ever! How the hell do you think he feels? He feels like crap, pretty much all day long. Yes he has moments where he is up talking and playing but give it a few hours at most and he is crawling right back into bed! Unless you do not mind if I bluntly say he is feels like crap and everything he just drank just came out of every exit place in his body, please do not ask this!

2. Have you tried praying?
Not to be rude, but my relationship with G-D is no one’s business. We are grateful for everyone’s prayers, trust me We are! But this is not a good time to talk about what amazing powers G-D has and what he can do for us if we just prayed a little harder! Are you trying to say that this happened to my son because we did not pray enough or my relationship with G-D was not up to your standards? Of course not! I know that is not what you really mean (well I hope), but that is exactly how it comes off.

3. I hope you got a second opinion and did your own research!
Listen, Trust me when I say that almost every parent that has a child with cancer has googled and read almost every document, paper, research, support group that has ever existed! I have practically became an oncologist, a researcher,  I memorized every hundred page study, numerous chemo protocols, research reports, trial outcomes, spoke to almost every pediatric hospital in/out of this county and the list goes on! Trust me when I say the treatment plan we chose was not a easy decision. It was made with a lot of thought, facts and research! We did not pick my son’s treatment plan out of a hat or in a round of “Bubble gum, Bubble Gum in a dish”.

4. Chemo has really bad side effects, are you worried? Have you tried any other methods. I saw on facebook that there is this new super- fruit that really works!

Wait, chemo has side effects, I had no clue! Of course I am worried! Do you think I enjoy watching my child go through any of this? I hate every second of this and I wish I could trade places with him! I am well aware of the poison I am putting into my son’s body. I know that there might be some unwanted side effects in his future from the  chemo. BUT I HAVE NO CHOICE because I DO KNOW OF ALL THE AWFUL THINGS WILL HAPPEN IF WE DO NOT DO THIS! Your super juice has not been proven in any randomized, double-blind studies and has not been tested on thousands of patients worldwide. I’m not interested in hearing your theory of the newest super juice, vitamins or whatever miracle pill you saw on DR.OZ.

5. I know in my heart that he will be ok!
Really, you do? I did not know that crystal balls were real or that you had some kind of magical power that enabled you to see the future! I know many children “beat” cancer every day but I also know the harsh truth that many children do not! I am not saying I am not hopeful but until he is officially cancer free, we do not know that he will be ok..and guess what??? I am OK with that!

6. He can beat this. He is so strong!
Yes you are right, he is one of the strongest little boys I know and he can beat this! But if he does not, that does not mean he was not strong. What does that say about everyone who has lost this battle? That they were not strong enough? That they did not have enough will power? People die of cancer because well they HAD CANCER! Cancer is one BAD A** Disease! Chemotherapy and radiation is ineffective in some types of cancer. There is also a million other reasons why a person gained angel wings due to cancer. It has nothing to do with their will to live, how strong they were, or how much suffering they’ve experienced.

7. I can stay and watch him so you can grab a drink or go out with your friends.
Thank You for the offer, really it’s a great gesture! I kind of relate this to having a newborn, when you get a “break” all you want to do is do laundry in peace, take a 10 minute shower instead of a 2 minute one, take a power nap, breath, run to Starbucks ALONE and drink coffee without having to slurp it down! Trust me when I say I really wish I could muster up enough energy to go out for a drink, but the guilt and tiredness I would feel is not worth it!
What I would take you up on is the following…Can you just entertain my son for just 30 mins? By entertain I mean can you actually put together the toy you just brought him and please bring batteries and screw driver if it’s needed.  You can actually play with him instead of trying to hold an adult conversation with me. Which FYI will never  happen because he will interrupt us every 2 secs. This in return will make me go bonkers and make me yell at my son ,which will make me look like a awful mom because I just yelled at my son who is laying in a hospital bed because he has brain cancer! You could also fight with him to read his book for school or watch spiderman with him! I would even be happy if you just helped him Pee. I actually would love that, if someone else can put gloves on for the 100th time in the last 10 minutes and help him pee into the stupid plastic “bottle” that never closes correctly!

8. Let me know if you need anything?
Well I do need a lot of things but nothing anyone is able to give me! To be honest I am sure if I think hard enough, I can think of something that I need. But I do not even have enough brain power to think that hard.

9. Hey, I am on the way to visit. Hope that is ok!
Of course visitors are welcomed, but please just do not pop up unexpected. I never know when my child is going to take a nap, when a doctor will pop in or even when I will knock out! If we made plans for you to visit and at the last minute I cancel, please do not take it personally. Like I said before this is a lot like having a newborn! If my son just happens to take a nap, guess what? I will either will be taking one too, catching up on “Orange is The New Black” or just sitting around and doing nothing. Sometimes I just need a break from people! I just want to sit back and not have to carry on a conversation with anyone. We are never alone in the hospital, I can’t even pop a pimple, tweeze my eyebrows, brush my teeth or shove nasty hospital french fries into my mouth without a nurse, doctor, maintenance etc, walking into our room. So when I have an opportunity to close the curtain and shut “our” door for 5 minutes I take full advantage! FYI my 6 year is cranky half the time, you will be very lucky if he will say 5 words to you! Unless you decide to play spiderman or play video games with him. Otherwise get ready to get his evil eye and a slick A** remark about how grownups are boring and all we ever do is talk about him!

10. I know you say you are ok, but I really know that you are not!
No you are wrong! I really am OK! Thank You for not listening to my feelings. Remember in #8 I said i can not muster enough brain power to figure out what I need, well now I remembered. Please Stop always making every conversation about how my son is feeling or how I am holding up! Maybe I want to hear about the one night stand that the random person on the train had or that Sally and John are in the middle of a nasty divorce. I even would love to hear that your child scored their 1st goal at his/her soccer game!
Yes I am NOW a MOM to a child who has cancer, but I am still me! I really am doing ok, I am not lying. My new reality is really not that bad, well besides the whole “my son has brain cancer” thing. The nurses and doctors are actually pretty cool, I enjoy spending time with my son, I do smile and I mean a real smile (many times throughout the day), I still laugh and act silly. Of course I have my moments and I think about what the future holds for my brave little superhero, but that does not mean I am not OK!

Once again I hope no one takes offense to any of this. I know if the roles were swapped I would be asking many of the same questions! Thank You again for everyones prayers, well wishes and support! One main reason I am doing so well is because of everyone’s kind words and support!Photo on 6-14-14 at 7.15 PM

SuperHero Sleeping= My guilty Pleasure :)

SuperHero Sleeping= My guilty Pleasure 🙂

 

 

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6 comments

  1. Love it!!! You feel free to let it be known sometimes people do need to hear this so they understand. Im very proud of u!!

  2. I love that you keep it real Sarah. You are a woman of courage, strength and bravery. Good for you that you wrote this post. You have every right to express how you feel and if anyone takes offense I would tell them not to make this about them and to listen to what you’re saying. That’s how we be supportive. You have been such an inspiration to so many of us. This post actually made me feel a little more at ease because I do think about how you’re doing all the time. Keep letting us know what we can do to be supportive. Especially those of us who are distant and can’t be there to help out. If you or AJ are in need of something I can send, please let me know. Maybe he wants a special game or something or a toy, and I’ll send it with batteries! 😉

  3. I totally understand what you are saying. There are no words that can be said to make anything better or go away so all I say is I will continue to keep both you and your beautiful son AJ in my thoughts and prayers. I do keep up with your posts because I care and I want to read whatever you write because this is life and when I see a young mom like you and a beautiful little boy who should be playing and running and driving you crazy going through this horrible illness I wonder why? With all the terrible people out there robbing and killing why an innocent child have this? All I can say is I will always keep you guys in my prayers and I truley want you and your life to get back to alittle relief. 🙂 you have a beautiful soul, you are a being a MOM. When I look at the pics you put up I see such happiness between a mom and a son.

  4. Hi My dear Sarah and A.J.
    I send you LOVE and KIsses.
    I know to well about treatment.
    We don’t know what the future will bring.
    Enjoy TODAY

    Aunt LINDA

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