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After reading this fantastic article, I have been trying to make some changes to bring my life more into balance. The article is basically about keeping balance in your life in the midst of our iEverything world. Finding the article when I did was totally Heaven sent. I really needed it. I think we're pretty conservative as far as electronics and technology go- I am a bit of an e-mail junkie, we have a blog, and one iPod that we share between us, but that's about it though. No cable, no Facebook, no Twitter, no iPad, no internet on our phones (and prehistoric phones at that), no video gaming systems, and we hardly ever text etc. Still though, I find myself much to apt to waste time or "destress" in front of the computer - browsing the news, reading every trivial detail of a gazillion different people's lives on blogs, etc. Nothing terrible - just time wasting. Getting annoyed at my kids for interrupting me. (Did I really just admit that?) Not getting other better things done. And worst of all, teaching my kids that behavior - that that's what we do - sit in front of the computer.
Ok, step back - I think I just made myself out to sound completely terrible :), but it's really not as bad as all that. I clean the house, I make meals, I read to my kids, I do "school time" with Elena, I exercise, I make homemade vegetable purees to sneak in our meals, I do laundry, I read, I try to serve others, I take the kids outside to play, I read the scriptures, I run errands. I do lots of things. But I do think that the electronics/technology in my life are a little out of balance. Our computer was shut down for a few days a couple of weeks ago and it was like the most refreshing few days I've had in a long time. If it feels so nice to disconnect from technology, why is it so hard to do it then? :) I'm still trying to find the right balance. It feels nice to still be connected to the people I care about and to be able to document our life on the blog, but so far in my experiment it's been an all or nothing sort of a thing. It seems like if I don't keep up on things a little at a time, then they just pile up and get overwhelming. But I don't want to constantly be attached to the computer. Do you have any tips for how to stay balanced?
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Elena was hard at work for quite a while before bed last night arranging a "princess parade" full of quote "sparkly things". After she and Lily were in bed and I was puttering around picking things up, I got a chuckle when I came upon her collection. Sparkly indeed.
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Speaking of Elena, her dare-devilish mega-twirling on our tile floors finally caught up with her. Monday night she was in the bathroom twirling while Lily was brushing her teeth before bed and lost her balance and crashed to the floor. Her glasses smacked up against the tile and pushed back into her forehead and split it open. It was nasty. So, off Eric and Elena went to the ED for stitches. Elena was still on this month's steroid pulse, so it was super awesome getting her port accessed and dealing with the split-open head trauma. Good times. I'm really grateful that Eric volunteered to take her because just the thought of someone sewing skin makes me thisclose to throwing up. Yuck, yuck, YUCK!
The next morning though, she was happy and good as new. As silly as it sounds, this little experience with stitches has reminded me anew how grateful I am for the Resurrection. I got really sad when I thought about Elena having a big old scar right in the middle of her forehead for the rest of her life. Something about my perfect little girl with smooth skin and and a body (comparatively) fresh from Heaven getting marked up and injured. Silly mom feelings, but there nonetheless. Anyways, but almost as soon as the sad feelings came, I had the thought pop into my head that it really doesn't matter what unfortunate things happen in this life because one day it will all be made right. She will have her body perfect, whole, complete - without blemish or injury or imperfection. And that is a beautiful, wonderful gift from a very loving Heavenly Father - that even my silly worryings will be recompensed.
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Last week, after clinic on Thursday, we went to ICS with another cancer friend, Cami, to visit Millie. It was hard to believe that she was there because the cancer was back. Millie looked so good. Her hair was long and gorgeous, she was talkative and excited to play with the girls, and she just looked too full of life to believe it all. It was only towards the end of our visit that she got tired and wanted to lay back quietly while the other girls wanted to keep playing.
Cami, Elena, and Millie - chemo sisters.
Isn't that so messed up? All three of these beautiful, little girls had chemo pumped into their veins that day. Most of the time I can just cheerfully accept it all, but sometimes - when terrible things like this happen- I feel very angry at stupid cancer.
Now Millie will be in and out of the hospital (mostly in) for the next three months getting blasted with chemo to prepare her for a Bone Marrow Transplant. They just found out that her little brother is not a match and now they are looking to the national registry for a donor. If you have not already signed up for the Be The Match registry (the National Bone Marrow Donor Registry), let this be the reason that pushes you into action. Millie needs a match. And so many other people out there need a match. It's painless, it's free, and it's LIFESAVING. Please register! Click here or click the "I've joined" button on the sidebar on the right.
Millie was the second little cancer friend we ever met. Before we met, I blog stalked them and read all about their wish trip to Disneyworld and dreamed about what we could anticipate. I eagerly soaked up every word Amanda (Millie's mom) wrote about treatment, as they were only a few months ahead of us, and I wanted to know what to expect. And now this. Not only are we hurting for them beyond words, but we're also terrified. It is all too eerily and disconcertingly familiar.
ALL,
Maintenance,
last day of treatment,
"no more tubies!",
ringing the bell,
scheduled port removal,
"no more cancer!",
big celebration.
These are the thoughts dancing around in our heads - the ones that have been making us giddy with anticipation. The same ones that were recently dancing around in Millie's family's heads. And now they seems more like taunts. Bad omens.
Millie had low risk ALL - that is, low risk of relapse. Elena has high risk ALL. As in high risk of relapse. It just feels like a ticking time bomb now - a matter of impending certainty. How can Elena possibly make it through and live to have this all be just a distant memory? It seems like there have been so many ALL relapses in our little Utah cancer group recently.
I know it's in the Lord's hands. But I'd settled my brain into this nice, comfortable, "We're going to make it! Most kids finish treatment and grow up and have kids and live long, happy lives..." bit. I let go of a lot of fear. And now it's all back fresh and slapping us in the face. And I'm scared of what the Lord may have in store. I guess that means I have some work to do...
Please pray for Millie. She and her family have a very long, hard road ahead of them.
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More info to come on this next week, but SAVE THE DATE (and your blood)! :)
Elena's Two Year Diagnosis Anniversary is coming up next month and we are holding another blood drive in honor of it. No service project this year, just a blood drive. :) We have a very lofty goal set for us this year of 85 donors. (Which frankly, I'm a bit nervous about between pregnant and moved away family members. :) Haha.) So, PLEASE, mark your calendars, save your blood, and tell everyone you know to sign up for our blood drive. Here is the basic information for now:
What: Elena's Two Year Diagnosis Anniversary Blood Drive
When: Saturday, March 17th, 2012
Time: 9am-2pm
Where: 50 South 750 West, Orem (Center St. LDS Meetinghouse)
Like I said, watch for a sign-up and more details next week!
7 comments:
I ran across your blog somehow... I too spend too much time blog surfing and reading about other people! However, ever sinc I came across your blog I continue to come back and check in. I have always been inspired by your courage, faith and perserverance. I am so sorry to hear about your friend Millie. I can only imagine what all of you cancer families endure. However, I do want you to know that you are making a difference. Everyday I squeeze my kids a little tighter and hold them a little longer... Something that we so often take for granted. Today you also inspired me to register for the Bone Marrow program... I pray that they find a match for Millie. Her story is inspiring people to sign up and in the end will help save someone elses life too!
Keeping you in my thoughts and prayers.
A Stranger in Colorado!
Jill
Just catching up! Will keep Millie in my prayers, what a precious little girl.
You are so strong and courageous, I know I've said it before but I'll keep sayin it again and again :)
I'm so sorry about Elena's fall! How did she handle it? Daph split her head a few years ago. It was along her hairline and much smaller (three stitches), but it looks very good. Pale, you can barely see it, even if you're looking. That it so heartbreaking and frustrating.
You're so right about it seeming like our girls are clones or something!
You're also so right about: "And now they seems more like taunts. Bad omens." Absolutely. It makes me sick in every way.
i read that article this week too and have been thinking a lot about it. for me, i think the key is to use technology deliberately, not just as a time waster. i just keep feeling there are so many things to do with our very limited time! thank you for your thoughts. i like having a set time (morning, night, naptime, whatev) where you check blogs, email and then leaving it for the rest of the day. that's tricky with an iphone where all is readily at your disposal, but i try to put my phone up during the day so i'm not constantly checking it. all the techy stuff can be so addicting!
i'm so sorry about elena's stitches! i can't believe her glasses gave her such a bad cut!! sophie is still traumatized from hers-- she was 2.5 when she got them and she still remembers details about the experience. i'm sure elena is a little tougher than sophe, though. :) i understand worrying about the scar, but it will fade and be barely noticeable. they told us to keep sunscreen on sophie's at all times and that is supposed to help a lot.
i am so sorry for your little, sweet cancer friend and the worry that it has caused you! i wish i were her match. i'm so glad i'm on the bone marrow registry now. something little we all can do. love you, briana!
So sorry that it was such a rough week. I know that feeling, of being so "battered and bruised and exhausted and ready to lay down and sleep forever."
I too am apt to waste time and detress in from of the computer. The thing that has helped me the most is to try to be very intentional and deliberate about it. I try not to get on the computer until Cameron's naptime, and then try to get off when he wakes up (That's the hard part for me...) It's hard also because our computer is so centrally located, that it's like the thing that is always being used and always on--plus Dustin is in school and when he gets home from school it seems that he needs to spend a ton of time on the computer researching, writing, emailing, etc...I would like to move our computer upstairs so that it won't be such a 2nd nature thing for me to do, to plop on the couch and "be busy" on the computer. I haven't been able to convince Dustin that we should move our desktop upstairs yet though, although I did convince him to move our router upstairs so he can work more readily on his laptop up there...hopefully that's just one step on the way to getting our desktop up there and out of the central living room (but they also advise having your computer in a public place--it's just that it's almost too easy to spend time on the computer because it's in the living area, so you don't feel shut out from what's going on around you--does that make sense...argh)
Poor Elena getting her head cut open! I had some surgery years ago on my foot that could have left a giant ugly scar, but my doctor had me put Vitamin E caplets on it everyday--I would break the caplet open and rub the oil from the capsule into the scar (can't remember if I started doing it before or after the stitches were removed..). Maybe that would be helpful? With or without a scar, she'll be beautiful!!
My heart is breaking for Millie and her family. The way you described it was beautiful though. What determines if someone is at high risk or low risk of relapse?
Jill: thanks so much for your comment. i really needed to hear that. and it made my day. :)
Amy: amen, sistah! amen and amen! you described a lot of my quandary. i hate having the computer where it's out and "front and center". but we have a built in desk in our apartment (which is TOTALLY awesome for utilizing space, but it just kind of forces the location) and so that's just where it is. and i also very strongly believe that it needs to be out in a good public place. but it's positioned JUST so right now that it is in the center of EVERYTHING in our little house. :) i'm looking forward to when things are a little more spread out and then i'd like some sort of hutch or cabinet with closeable doors, so the computer is out in the open, but not always in my face all the time. you know? eric has the same thing as dustin - all his master's research is on the computer. and if it's not that, then he needs to be programming something for his company's website or tracking or billing, etc, etc. it seems like one of us is always on! blegh. anyways... you just described a lot of my feelings/quandaries. :)
Oh and Amy: the risk level is determined by a number of different things: age at diagnosis, white blood cell count at diagnosis, certain genetic mutations, or slow response to the first round of chemo. Elena responded well to the first round of chemo, was the "right" age at dx, but she had a high white blood cell count at diagnosis. that's why she is high risk.
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