Margaret's post in the fantastic "Dumb Things People Say" thread about one of the best things she's heard from others was great -- I hope we all have heard some "right" things to offset the dumb things that are said to us on this journey. Hope you all keep the stories of "dumb things" coming -- they're touching and funny and truly show how special and unique this community is. If you've been lucky enough to encounter people who have been able to find the right words to say to people like us, it would be great to hear those stories too.
So here's mine... at the time of Andrew's diagnosis, a good friend of my family had been fighting stomach cancer for three years, with a few remissions only to have it return each time with a vengeance. While I hadn't been very close to him or his wife over the years, he came to visit Andrew at the hospital and they talked about chemo and ports and all sorts of other things. It was very comforting.
When things got very dark for me after my other son's accident, his wife sent me a note that just simply said "You are strong, even when you think you're not." Such a simple statement, but it changed my outlook that day and I still think about it whenever I start to feel overwhelmed by this world of treatment and recovery that so often spins outside of my control.
Hope you all have a safe and happy 4th!
Great idea! I really hate when people tell me how strong I am. I don't feel strong all the time. I feel like a wet kitten hanging onto the side of the tub most days. But one night my Mother in Law told me that I have handled it with GRACE. That was a comforting thing to me. That someone thought I could be throwing a fit and banging on walls, but I wasn't. It made me feel really good! Also, I think it was from Tex on these boards, he told me to not hold myself all the time to the saying "think positive". It's not realistic to always think positive. Sometimes you have to let yourself cry and be scared. Let it sink in so you don't loose yourself in denial. I think being able to deal with it all facing it head on makes you much more prepared for the setbacks.
I love this thread. I have a few
This one is from another T-cell kid we met online - whose sister does his carepages. She has posted several times
"life is not about waiting for the storm to pass. It's about learning to dance in the rain".
I feel like the years of treatment really make that one approp. I must repeat that one at least weekly.
Another is from my girlfriend who knowing I was overwhelmed while inpatient - again - called and said "Is your house unlocked?" I said yes, and she replied" ok - I have a few hours so I am going to throw in a few loads of laundry, clean out your fridge, and put a few casseroles in the freezer, ok?" Can I tell you how much I love this friend. She did this almost every time we were inpatient- which was alot in the first year!!
I've seen a couple of sayings - not sure who wrote them but I've adopted them into our world - my favorite:
Life is not measured by the number of breaths we take, but by the moments that take our breath away.
My father in law is a charismatic pastor in Arizona. When Alex first was diagnosed I was avoiding talking to him on the phone. Mostly because I was afraid he would say things about God and our situation that would piss me off and then I would say things I would regret - and honestly that would not have taken much. And at that point my own faith was on pretty shaky ground. After a week of avoiding talking to him he finally got ahold of me and said:
"God hears you when you cry out of anguish - but He also hears you when you cry out of joy - find the joy and focus on that."
Sometimes we hear smart things from those who we least expect it from.
This isn't something that anyone has said, but what some people do. When Lily (my granddaughter) was diagnosed with ALL in December 2008, we had wristbands made - several thousand of them. We gave them away to anyone who wanted them. Our only request was that they wear the band and when they looked at it, think of Lily and all the other kids fighting cancer and say a quick prayer for them. We gave a wristband to any child in Lily's school who wanted one - and one to all the teachers. We gave them out at church and throughout the neighborhood. A year and a half has passed since then, and most of the wristbands are long gone. However, there are those few people who continue - after 18 months - to wear that wristband every single day. Several people in our family do, but also outside the family. Our pastor wears his every day - and several people in our church. Before school was out (I'm a teacher at Lily's school), I'd see a few kids who had kept up with their wristbands for all that time and were still wearing them. Anytime I see that wristband on someone, it uplifts me because I know that is someone who is in this with us for the long haul.
Here are a couple I keep by my desk.
"In the confrontation between the stream and the rock, the stream wins.....not through strength but by perseverance."
Love that one because this is such a long...long road. We may be weak at times but we are persevering through this.
"I dont run away from a challenge because I am afraid. I run toward it because the only way to escape fear is to trample it beneath your feet."
Love that visual when the fear starts to take over. Running toward it, on it, and past it. I think of that when I feel like I am sitting still in the fear.
I don't know who wrote this it is an old saying I have on a wall hanging from Thailand....(I actually was thinking about it reading Shakinquaker's post about Elias riding a bike)
Life is not a race
But a journey to be savoured
each step of the way
Yesterday is history
Tomorrow is a mystery
And today is a gift
Also, when my son was first dx a friend said "Remission and then survival are our only option" simple words but ones a hold dear
Mom23, that reminds me of something I heard once, for the life of me I can't remember where or by whom, but it was something to the effect of, "When a storm is approaching, most animals try to run and hide but not the buffalo. The buffalo faces the storm and runs towards and through it. Be the buffalo."
'Be the buffalo!' I like that.
I also cling to the saying 'Life is not about waiting for the storms to pass, it's about learning to dance in the rain.' I have a picture frame in my office that says that and it holds a photo of Emma literally dancing in the rain. The first day we got the go-ahead for her to go back outside after being on lock-down for months, it was RAINING! So I bought Emma a pair of rainboots and let her jump in mud puddles. It's funny how cancer will make the calendar just fall completely away. I don't care if we are inpatient on Christmas...it wouldn't devastate me in the least. We can have Christmas the other 364 days a year...just so long as we get our Christmas with Emma.
I'm sure people said very nice things to me but sadly what sticks out is something someone else already mentioned...the 'you're so strong' comments. There are times I can take that as a compliment because I'm like Sheera some days! But then there are the days when I wanted to say, 'Um, yeah, was there a Door B?? I don't remember seeing the option of curling up in the fetal position and sucking my thumb! Given the option, I'd space the heck out and wake up in three years. If I could find my way down off this damn pedestal I'd kick your butt!' LOL
Several nurses and other parents told me early on 'This WILL get better!' There was a time when Emma was screaming at the sight of every person in a lab coat and I was terrified for her. I really needed to hear that she would feel better abou this one day soon. It was also a HUGE comfort to see nurses who had been treated at St Jude who came back to work there. God bless them for showing me that kids can get through this and thrive.
Another simple sentence: 'Children make us learn.' As parents, we know this. As parents of a child with cancer, we are reminded daily.
A piece of advice, from my cousin who has 10 years in battling breast cancer: If Evan wants to go outside, even if it takes your energy for the day, takes a half hour to ready him, and you know he will only stay outside for 5 minutes - let him. Let him have those 5 minutes of childhood, of play, of freedom. It will be worth every second to him and to you. I promise.' She is right.
Great idea, Kristen - the things that lift us up are far more valuable than those that bring us down, and we should share them.
When Daniel was first dx, we got cards from family and friends that said they were thinking of us and praying for us. And it was lovely to hear that love and support.
But one particular co-worker, with whom I am not especially close, sent us a card that said simply, "I will share your worries with you." That simple idea of someone sharing my burden, of not making empty offers of help but offering to ease my mind, was remarkably touching, and I can never forget it.
Another time, a friend of mine who is Catholic asked if it would be okay with me if she had a mass said at her church for Daniel. I am not religious, and do not believe in prayer, but I am not offended by those who do. I think that if you believe in the prayers you say and to whom you say them, then that genuineness of spirit matters. She knows this of me, and told me that if as many people as possible were praying for Daniel, then Heaven would be filled with his name, and that couldn't be a bad thing, could it? That gave me a peculiar image of angels in Heaven all sitting around talking about Daniel, and wishing him strength, and I have to say that was quite lovely.
That is so funny- when I saw her post I thought the same thing about starting a thread! I am so glad you did this. It is important to band together and support each other about the stupid things people say, but we get alot of great nuggets along the way.
One of the nurses told us to celebrate, celebrate celebrate. There are lots of times that things are not fun and we get worried and nobody wants to celebrate. She said to take the little moments that a good and celebrate them. We have taken that and run with it. I think it has helped us on so many levels and is something we will continue!
Great thread. When Oakley was first diagnosed and the results came back they moved us to a private room for the month from hell. One of our nurses at AI Dupont is amazing .. her name is Val...she's so emotional...we seldom go to her floor anymore now that he's in LTM ... but we were there recently and it brought her to tears when she saw how big Oakley had gotten ... she is very cool. She got his room ready for us that day so long ago and told me that she hoped it was OK but she left up a piece of artwork left behind by the last family there...she said they normally remove everything but that this was something she felt was left there for a reason...it was a kids painting of a single old oak tree in a field with a caption that read:
"The strongest oak in the forest is not the one that is hidden from the forest and protected from the sun. It's the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun."
Gets me to this day...
When we started my 14 year old with a therapist, a Catholic nun who is also a family friend, I admitted we hadn't been to church in weeks nor had I been getting the non CK's to sunday school. This was about 8 months into the whole thing and Joey was down 20 pounds, bald as can be and had the little old man gait. I laughed, of course, because I always do even when nothing is funny. She looked at me quietly, took my hand and said, "You are seeing the face of God in a different way now." It brings tears to my eyes everytime I think of that and everytime I'm at clinic I always remember that looking at all the kids there. They are the face of God to me.
This isn't what someone said but what they did. When Aj's hair started to thin I talked to one of my fellow soccer mom's telling her Aj was getting ready to shave his head to prepare for the baldness. I knew 5 of his close friends in high school who played high school soccer with him on the team were showing up and shaving their heads in support. What I witnessed that day was an outpouring of support for a fellow teammate, a respect for a player who meant a lot to the team. 30 kids showed up that day from the varsity team and even some from his premiere team and one by one shaved their head after Aj. The smile on his face let me know that he would be ok with losing his hair. He held his head high and his shoulders seemed so broad for that one day. He was so sick, but that day he was one happy soccer player and I was one proud mom and grateful to these kids because in high school, what you look like does matter. That day for my son, it wasn't about looks, it was about a team letting one of their mates know that there is no "I" in team.
I just remembered this last night. At the very begining, she told me "don't wish these years away. I know you want to fast forward to the end, but this is your son's childhood. Savor it." Definately hard advice to follow all of the time. I really wanted to be past all of this. But she is so right, we don't get these years back. They are only three, four, five- fifteen, sixteen- whatever it is, once.
....last week, as we were headed into the clinic for a CBC (or for 4 year old Evan a dreaded port access) we passed a young boy. I'd say he was 8 or 9 years old. The boy was leaving the clinic, with more bounce than walk, and was sporting the same bald head as my Evan. This young boy saw Evan and without a second of hesitation, flashed the biggest brightest smile with a 'hey buddy!.' The kid then nudged his Dad and darted off at some hyped up speed. The Dad also looked at Evan and said 'hey buddy!.' In our last few feet to the clinic door my Evan said 'Mumma, I got some friends here. Lots buddy.'
Made both of our days. Simple acts of kindness mean so much.
Last night 2 friends came over. One is a renowned hair stylist who works at a very expensive salon. She brought all her tools, other friend brought the wine and cheese, I had the beer and crackers ready. Lots of drinks, maybe too many, I'm a little too blond for November with some crazy streaks, it was time to settle up. We usually pay her between 50 and 90 bucks depending on what she did; in our area, that's a bragain for hair color and cut. Well, I pulled out my wallet and she wouldn't let me pay her. I told her she had to or else I wouldn't feel comfortable letting her do my hair anymore. She shook her head and gave me a big hug and said, in her crazy Italian accent, "Honey, you call me to come here anytime or come by my house for a blow out or anything else you want. This year, you don't pay me. Next year, I'll charge you double."
Now, you know she won't but talk about making it easy for me to say yes, please and thank you
Margaret it's so nice that you have such awesome people around you!! I'm forever grateful to my best friend (she's a stylist as well) for making me pretty when I need a boost and for cutting Emma's hair throughout treatment. She doesn't charge me for trimming Emma (and heck, there's not that much to trim so why would she?). Just not having to worry about that while Emma's been in treatment and knowing that I could call her when I was having a bad-cancer-hair day and needing her to drop what she's doing to come over and make Emma look less sick has been a wonderful relief.
Gooooood Afternoon Everyone! I was having a really bad day today and decided to look on the L&L website and i came ocross this wonderful post and IT MADE MY DAY !
Im doing a scrapbook for my CK and i stole some of this quotes you wondelful people post here... Thank you for wverything.....
Very early during my daughters ALL diagnosis, we were lucky enough to go to the beach with the Lighthouse Family Retreat ....(check them out if you haven't heard of them!) -- the wonderful man who ran the retreat made a great statement to us all -- "no one leads a wrinkle free life" ...I keep that in mind when I start having my own pity party ....while our challenges are great - and our kids challenges are even greater.....no one leads a wrinkle free life ....b