| T O P I C R E V I E W |
| julia hayes |
Posted - Nov 11 2009 : 3:38:12 PM
You know being a sibling of a kid with cancer can roll many ways; siblings can be left in the background. They can be dragged from here to there sacrificing things that they used to like to do. They can be full participants. They can be shown the finer joys of making do and making your own kind of play. They can slowly wither into an abyss of silence. They can live out loud. They can remain relatively untouched by the cancer experience, shuttled away to the protective arms of other family members. I go could and on.
We decided from the moment we heard Aria's diagnosis that we would unite and do everything that could as a single family unit. It was an unconscious decision really. It is something that worked for our family and doesn't work for every family. Reo has been thrilled to play an active role. When he isn't allowed to participate, he hurts, he aches, he feels left out, he worries, he mopes and he generally misses out. Right now at the clinic they are not allowing anyone under the age of 18 to enter the clinic or the oncology ward....This severe precaution is simply to keep the ravages of flu at bay. Reo can not go with Aria to clinic and he is crushed by this. I play it down. I have to. I schedule appts when he's in school and so far it has worked out.
This is all background putting you in the perspective of what is means to be a sibling...a shadow survivor. I was immediately concerned about how to preserve my children's innocence and their childhood. There is nothing like a life threatening illness and death to strip a child of such things. I have made a conscious effort to keep this experience for Reo as benign as possible without being false. I think there is something quite detrimental in putting on positive airs when things are very dark. I think it is imperative to teach my children to be genuine, honest and to live authentic. Sometimes that means letting them know that things aren't good. When we stay as a unit, however, we've created a sense of safety and I think this has been everything for them. Rianna will have few memories it but Reo will remember the smell of the clinic for a long time to come. I wanted to create a life with cancer that felt safe, guarded and carefree.
I have been so fortunate to find networks of people willing to help me. Cards and gifts that have been showered upon the kids is just amazing. Recognition for Reo and his courage was enormous and now the latest thing!
I took the kids to the museum a few months ago so we could oogle over all kinds of hollywood costumes; darth vader, batman, indiana jones, blade runner, star trek and so on. Reo was in heaven. He was truly enchanted by the star wars display especially the original 1977 storm trooper helmet and blaster. Reo tried to figure out how to touch them and was crushed to learn that he couldn't try them on and play with them. Fighting back tears, he told a security guard about his disappointment. It was the cutest darn thing. After explaining to Reo that the costume was very expensive ("More than 10 dollars?" I asked), I finally asked who owned the costumes. Paul Allen, of microsoft fame owns them so I told Reo that we ought to write him a letter and see if he would let us play with his storm trooper helmet and blaster. Reo thought this a splendid idea and away we went.
Reo penned a fine letter and I called the museum curator to find out where I could send it. I have to be honest, it felt a lot like throwing a bottled letter into the sea but what the heck. We had nothing to lose and I want the kids to know they can try anything and approach anyone. The curator gave me the address of the curator in Seattle of the costume exhibits and so off it went.
In the meantime, the Spokane curator was so taken with the story that he put me in contact with a Star Wars enactment group called the 501st. I'd never heard of them before. I never knew such a thing existed! Apparently it is a world-wide organization! So the Darth Vader of the group contacts me and we hit if off right away. Needless to say, he was completely taken with Reo and Aria..so much so that the 501st group is hosting a Jedi Training Camp for Reo and some of his buddies on the 22nd of this month! Not only that, someone from a group in Seattle is giving Reo an authentic storm trooper helmet and someone else from the Florida group is giving Reo a blaster and holster! At the training, the kids will meet with Jedi Knights and learn the ways of the Force and some lightsaber skills and THEN they'll get to battle with Darth Vader. At the end, they will all receive certificates of Jedi training. Reo will be 'knighted' by a sandtrooper and given his helmet, blast and holster!
I can hardly contain myself. The goodness...oh, the goodness of people..complete strangers now forever friends woven into our lives. I think about how great Life works. Had I not mentioned this to someone, I would never have known this group existed...They are simply delighted to share their passion with kids. It is what they want to do. Darth told me, "Julia, we all have kids..to think of something happening to one of them is just impossible..so to bring a little cheer to your family is the least we can do." My cup runneth over...
In this month of thanksgiving, I am so thankful, so profoundly thankful that despite the constant barrage negativity, the goodness remains so much more powerful.
Of course I'll share pictures!!! Way to go Reo-Aria-Rianna.!! ~julia
****THERE'S MORE!!!*******
This morning I got an email from Darth. He asked me if the girls would like a pink R2-D2 type action figure that they call R2-KT. He went on to tell the story of this action figure. In 2005 Katie Johnson at the age of 7 died from brain cancer. Her father, Albin Johnson, is the founder of the 501st star wars costuming fan club..The very one that is now a world wide phenomenon whose Spokane group is sponsoring the Jedi Training for Reo, Aria and Rianna. As Katie was under-going chemotherapy, her sister wished that a special R2-D2 type droid could be made to watch over Katie. Sure enough...some guys got together and built one naming it after Katie (R2-KT). LucasFilm and Hasboro heard about it, got together and created this droid. In conjunction with its creation, they have also donated more than 100,000 to Make-A-Wish Foundation. Katie's spirit lives on.....
Now it is no surprise to me that Katie made this ALL happen for Reo, Aria and Rianna! I swear to you, I am ever more convinced that we have to live out loud. We have to give voice to our wishes. We have to make sure people know what we want, otherwise no one will help make our dreams come true. I think about Katie standing over us as we were writing that letter to Paul Allen. I think about her mischievously thinking, "Yeah, this is good, but I got something even BETTER!" Sure enough..now we are a part of the 501st family...the founder whose daughter died of cancer and mine fighting it.
I never cease to be amazed.......
being simple to simply be
Farmgirl #30
www.julia42.etsy.com
www.about-aria.blogspot.com |
| 15 L A T E S T R E P L I E S (Newest First) |
| katmom |
Posted - Nov 19 2009 : 09:06:04 AM
oh Julia,
I can hardly wait to see pic's of your children @ "Camp"....in anticipation I am sitting on pins-n-needles...no really, I am, I am in my sewing room & found a pin in my chair! lol!
So is it Sunday yet?
p.s. sending you snowflakes....
hugz
>^..^<
>^..^< Happiness is being a katmom.
"I've never met a sewing machine I didn't like!"
www.katmom4.blogspot.com & http://www.graciesvictorianrose.blogspot.com
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| electricdunce |
Posted - Nov 15 2009 : 10:21:19 PM
This post is such a gift, what a wonderful thing to know, that people are so good, and the story of Katie. What a wonderful tribute to the spirit of that young girl.
Karin
Farmgirl Sister #153
"Give me shelter from the storm" - Bob Dylan
http://moodranch.blogspot.com
http://domesticnonsense.etsy.com |
| 4HMom |
Posted - Nov 15 2009 : 10:54:25 AM
Thank you so much for sharing your stories....it does renew my faith in human kind (operative word "kind"), especially when so many seem to be self-involved.
"Be the change you want to see in the world" -Gandhi |
| 1badmamawolf |
Posted - Nov 12 2009 : 12:36:29 PM
Julia, This is an old Irish prayer that was given to me when my husband was close to the end, it touched me so much that I read it at his memorial, here it is:
"May God give you...For every storm, a rainbow, for every tear, a smaile, for every care, a promise, and an answer for each prayer."
"Treat the earth well, it was not given to you by your parents, it was loaned to you by your children" |
| Bear5 |
Posted - Nov 12 2009 : 11:02:06 AM
Teresa:
I am blabbing loud right now. But, it's a good cry! First, I'm sorry for your loss. Second, thank your son for protecting us. Third, your words to Julia were absolutely beautiful. To me, your words are those of bravery, compassion, love, wisdom, etc... Thank you for sharing.
Marly
"It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up- that we will begin to live each day to the fullest, as if it was the only one we had." Elisabeth Kurler-Ross |
| Annika |
Posted - Nov 12 2009 : 10:30:15 AM
Julia, this is an AMAZING story! I am in awe of the kindness and giving spirit that we all have the choice to share. My faith in our human race is uplifted =) With all that is wrong in the world, here is a wonderful example of what is right! You Go Reo! I'm so impressed with your bold little son. What a magical series of events! Thank you so much for sharing this enchanting story.
Hugs to you and your wonderful family =)
Annika
Farmgirl & sister #13
Simplicity is the ultimate sophistication. ~Leonardo DaVinci
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| nubidane |
Posted - Nov 12 2009 : 10:27:15 AM
That is absolutely amazing Julia
Get your camera ready! |
| 1badmamawolf |
Posted - Nov 12 2009 : 10:00:35 AM
Julia, Thank you soooooooo very much for your kind words, I am still dealing with massive sadness for the loss of my husband, but, you made me feel so much better with your words than I have felt in a long time, God Bless You from the bottom of my heart.
"Treat the earth well, it was not given to you by your parents, it was loaned to you by your children" |
| FebruaryViolet |
Posted - Nov 12 2009 : 06:04:04 AM
This is just what I needed today, Julia. How wonderful for Reo...and having a husband who is also a Star Wars nut, I think I might just print this out for him (who know's, he might add the 501st to the whole other bunch of geeky things he does--that I secretly love ;). And, I know that the story will render him as speechless and humbled as I am.
Though we don't often see it, especially when times are dark, there is magic in this world.
Musings from our family in the Bluegrass http://sweetvioletmae.blogspot.com/ |
| Marcy |
Posted - Nov 12 2009 : 05:36:32 AM
Julia,
I have tears in my eyes as I sit and read what you have written to us. Your little Reo is indeed a very special little boy! (as are you all) I hope he has a wonderful time with all of this. Take care and know that you are all thought of more than you know.
Farmgirl #170
Since you get more joy out of giving joy to others, you should put a good deal of thought into the happiness that you are able to give...Eleanor Roosevelt
http://marcysworldofcreativity.blogspot.com/ |
| Alee |
Posted - Nov 11 2009 : 10:41:46 PM
Wow Julia! Wow. I am all choked up just reading this awesome, beautiful story. The power of love!
Alee
Farmgirl Sister #8
www.awarmheart.com
www.farmgirlalee.blogspot.com
www.allergyjourneys.blogspot.com
Put your pin on the farmgirl map! www.farmgirlmap.blogspot.com |
| julia hayes |
Posted - Nov 11 2009 : 6:39:56 PM
Teresa..it seems to me you wrote your story! What a wonderful tribute to your husband. What an incredible memory for your family. I'm so honored that my writing helped you find your voice to share this little bit of your journey.
You know, I think this happens a lot where people are forced to face what they cannot control and despite the immeasurable sorrow, the longing, the wonder, there's a peace that comes over us. I call it the resilience of the Spirit and it dwells within us all. This is what I sense about you and your family and your husband as you, together, watched his life fade from this to go on to the next.
I think about how I would just languish if Aria died. I can see myself completely covered in a thick shroud of the deepest and darkest despair. But it is people like you who have shared their stories with me that show me that what I see about myself and Aria is nothing more than a figment of my imagination. I wouldn't languish. I wouldn't curl up unable to see the sun and a smile. There's no question that I would forever be changed once again. There's no doubt that there would be a vast void that I would spend the rest of my days trying to either fill or at least look at with a sense of peace. I have had the enormous honor of people telling me how it was for them to lose a daughter, a son, a wife, a husband, a friend....I've taken in every single one and I face the unknowns of Aria with a confidence and a resilience I never knew possible.
I bow deeply to you and your husband.
Ladies...thank you for reading. I thought this a wonderful story of putting it out there and waiting to see how Life would answer! I never cease to be amazed...that seems to be my phrase today, but it is true.
being simple to simply be
Farmgirl #30
www.julia42.etsy.com
www.about-aria.blogspot.com |
| 1badmamawolf |
Posted - Nov 11 2009 : 5:16:06 PM
You have written a story that I could never have done. No, I did not have a child with cancer, it was my soulmate, my wonderful, loving and kind beyond words husband. He was diagnoced with stage 3 pancriatic cancer on December 28th, 2005. He opted to forgo any chemo or radiation, cause all it would do is slow the end, but at the same time make his quality of life misrable. He also stayed home, no hospital, he wanted to be with his family til the end, which was fine with us. After a few months, we had a hospital bed brought in, and it was in the middle of our living room, cause there was no way to put it in the bedroom. When he was up to it, he would come outside and ride around in our gator (simular to a golfcart) , we still had wonderful days. Our youngest Grandson was told in a way we thought he could understand, (and I think he did), that Grandpops was very sick, and would be going to heaven soon. Jeremy would crawl up into the bed with him, and pretend to read him a story from his favorite books, ( Jeremy was only 4 at the time), which was very presious to my husband. My D-in-law took on a great deal of responsiblity here on our farm/ranch, as I was unable to be away from Jerry very much, her husabnd my youngest son was in Iraq, finishing up his 2nd and final tour. On Augest 27th, 2006, at 3:23 am, 3 days after his 53rd birthday, he went to be with our Lord. Our 2 older sons, our daughter and D-in-Law, and Jeremy were there to say our final goodbys, our youngest son was not able to make it home in time ( he was special ops, and they said they could not locate him in time). Its been a little over 2 years now, and my Jeremy still talks to his Grandpops almost everyday, and I truly believe he is here as often as possible to watch over all of us.
I am so heartbroke for your daughter Aria, that she at such a tender age has to deal with the horrors of cancer, I am also proud to know you by your postings and to see what a strong mother you are.
I am also proud that your son Reo is able to be there as much as possible for his sister, and God bless the 501st group for being the angeles that they are.
If there is EVER anything I can do or say, please email me and I will do my best for you and yours.
"Treat the earth well, it was not given to you by your parents, it was loaned to you by your children" |
| wild daisy |
Posted - Nov 11 2009 : 5:05:30 PM
As I sat here reading your post tears fill my eyes. What a wonderful group. Your family has had a lot of hard knocks and need a break.
I know a little of what that means as my husbands older sister is dealing with a terminal disease of AML which is acute myeloid leukemia. She got her stem cell transplant the first part of September but is still going in and out of the hospital with complications. This is not a cure for her but a treatment to prolong her life by maybe two years. We do not live near her as she lives in Utah and we live in Montana. Far away but we call her all the time.
To have a group of people that would take the time to respond let alone be there is wonderful. I just hope for the best with Aria and Reo. My prayers are with your family.
Madelynne
johnandmadelynne.blogspot.com |
| Bear5 |
Posted - Nov 11 2009 : 5:00:05 PM
Julia:
I am speechless at reading your post. I'm overwhelmed at the goodness of people, and from the thanks you wrote about. I'm so happy for Reo. I'm so happy for you. Please, keep us posted on how things go. I can't wait to see the pictures. Y'all will be in my prayers.
Marly
"It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up- that we will begin to live each day to the fullest, as if it was the only one we had." Elisabeth Kurler-Ross |
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