[pics incl] Only some of you will “get it” because you need to have read the book…
Jeff: William, you should help me work on the yard.
William: I don’t wanna work on the yard.
Me: That’s the whole reason we had a boy, so if your not gonna mow then I’m gonna “unwind you”
(no one else is here right now to appreciate my “totally wrong humor” because they haven’t read the book)!
[pics incl] John gave Ashley a sip… of something! I felt it should be documented. Then Daxton “dog-piled” her.
One Year Ago: http://blog.scottsontherocks.com/blog/2013/10/17/mri-scan-results-101713/
[pics incl] I had an eye exam today… and I have eyes 😉 Still have better than perfect vision (when my vision is working). Set me up with some reading glasses for reading… problem is, it’s not the SEEING that’s the problem and glasses probably won’t help me read better 😉 And since, this is something I would have done to “them”…. I sat still for it.
[pics incl] Courtney has been posting some pictures of her excursions in China [ http://blog.scottsontherocks.com/courtney/ ], however, sometimes the photos she txts to us start stories all their own! It’s difficult to Skype w/ someone when a tortoise is crawling on them! We all agreed that she and Claudia should NOT advertise over in China that they have named their lizard “Emperor.” The “turtle” is Punk. Apparently, they are on their way out to get a fish. (that’s why I said “surrogate siblings”… and that promptly started an argument via Skype, over whom was which pet!~6300+ miles away and they still argue!)
[pics incl] Heather fixed a variation of a meal she fixed last week. Took pix of the cats & fireplace for Courtney.
[pics incl] A lot of funny stuff around here (and China…) happens via txt
Previous spiders: http://blog.scottsontherocks.com/blog/2014/09/22/heathers-spidy-friend/
One Year Ago: http://blog.scottsontherocks.com/blog/2013/10/12/bees-are-gone/
[pics incl] Ahhh, the comics and decaf coffee, one happy kid. 🙂
[pics incl] William’s youth group is holding a Gallantry Gala tonight.
[pics incl] It’s just “inconceivable!”
[pics incl] Today was a weird day with some proof in photos & txts.
I cannot confirm that bear is breaking into neighbor trash bins (although the emails since have me curious as to IF anyone has actually seen on or if another animal is the culprit and “a bear” is being blamed??). [NOTE 10/08/14: a bear ripped apart a car in a nearby neighborhood last night…..]
I can neither confirm nor deny that the puppy in the photo is a Chinese puppy. 🙂
Ashley’s doodling should be framed! That’s THE BACKSIDE of her art portfolio?!?!
and… “we” got a new toy electronic video webcam because my laptop webcam is pretty sorry!
No computer necessary… just Internet… and Skype. See… it’s up there on top the TV.
We coined a new phrase “taking a Skypė ” (pronounced Skype-ee 🙂 and I like the “e” thing ė and since it’s MY made up word, I can use any of the little “thangs” that I want!)
Say hi to Drew!
Ya’ll asked a bunch of questions when you called/emailed/txt’d for my birthday and I should’ve written them down! If I forgot something, please remind me! It’s taken me a few days on/off to compile the answers. Here’s my last appointment info to bring you up to speed: http://blog.scottsontherocks.com/blog/2014/09/30/neurology-appointment-093014/
Pain: Yes, my head always hurts, there have only been a very few short periods where my head did NOT hurt. But there are “different levels of pain.” I’m just now starting to recognize them and what the signs mean to me and trying to trouble shoot possible causes, etc. Hydration definitely affects my head pain. I very scientifically figured out how much water I need to drink everyday. It sounds crazy but I was actually trying to do it BEFORE “clot” and it made even more sense to verify afterward. If I’m not drinking enough, I definitely “feel it” but also, if I drink too much. I don’t make up the rules, I just play the game! I’m no doctor but I think it’s all “pressure related”… hydration is part of it. Whenever the pain gets to a certain point, and I don’t have a name for it yet but it’s not “hydration pain,” it affects my vision, my speech, my thinking, etc. It’s a noticeable change to me and to anyone standing anywhere near me. You will “see me in pain” OR you will “hear/see a change in my behavior.” Some of this is relayed to me by family/friends but I know I start having trouble remembering words/phrases, etc but others have shown me stuff I have written during these times and it looks like a kindergartner’s work!i The “not seeing clearly” umm, kinda irritates me. It’s not like glasses would solve my issue because tomorrow I could be seeing clearly again! Like I said about “pressure pain”… sometimes I can feel the pressure/throbbing in my head but sometimes I can also feel it in my neck or pulsing in my hands, etc. I’m weird, I know. I’ve always had a sensitivity to my own heartbeat and now I can definitely feel and even HEAR heartbeat changes in by head!
Bending: it’s a pain related thing but that paragraph was too long and I lost my place 😉 Sometimes, I can kinda sorta bend to do things like unload the dishwasher. I have to move slowly, but I can do it. I’ve totally given up on doing laundry while standing, so you might just catch me sitting in the middle of the laundry room floor (we have front loaders). HOWEVER, I never know if “today is a bending day” until I actually try to bend. Sometimes, I get partway and just know it’s “NOT a bending day” but sometimes, I’ll be doing stuff and all of a sudden “IT”S NO LONGER A BENDING DAY!” This often takes my breathe away, buckles my knees and stops me in my tracks. The best example I can give you is “you just got whacked up side the head!” Then…. I’m done. Sometimes, I can go lay down and catch my breath and work back up to moving around but not exerting any effort. Sometimes, I need drugs.
Cold/Tingly Arm: I think I posted a lot about this last time? Head hurts right now, I’ll try to come back to this later.
Sleeping: I prop up pillows and try to get comfortable. USUALLY, I’m propped on right side and can get to sleep. If my head is bothering me then I can be awakened easily (by wildlife or noises outside (or inside 😉 ). If my head’s hurting, it takes longer to get comfortable, as long as the pain doesn’t worsen, I can usually get SOME sleep. If the pain is in one of it’s moods… I try sitting downstairs and/or taking a shower, but there is a fine line between “dealing with the pain” and “bursting into tears” and that’s where pain drugs come in… Actually, if you look at “long-term numbers,” I’d say that I am sleeping better and having fewer severe pain days/nights. Think about comparing EVERY DAY, or EVERY WEEK, with once a week, or a few times over a few weeks. But then sometimes, I feel like I take a step back… just like life 😉
Driving: Driving is not an issue, I have complete memory of how to drive 😉 AND, I’d like to think I was a fairly OK driver before… AND, I’d like to think I’m hyper-diligent now! If my head is really hurting, I don’t drive… just seems prudent. So, yah, that does sometimes cause some creative carpooling adjustments but so far, for the past year, we haven’t encountered anything completely unmanageable. Partially because we have AWESOME neighbors! and Partially because Heather still lives her for the time being and has been incredibly helpful in arranging her class schedules to accommodate “shuttling kids around.”
Blogging: Yes, sometimes I start a post and save a draft and work on it over time. When I actually post it, the date is often whenever I started it and therefore may “suddenly appear” even though you’ve been checking. 🙂 And yes, I guess my posts are shorter if my head hurts. I try not to edit “content” after it’s been emailed out, I’ll add a [NOTE:] but I might edit spelling if it truly affects the meaning at all… if I eventually “see” it or one of you points it out!
Memory: I forgot.
Just kidding 😉
Memory: Yes, I obviously have short term memory issues. At least, I am aware of my short term memory issues, so I hopefully, I am able to articulate that to whomever I might be talking to, so that they can also inform Jeff/kids and/or make arrangements to follow up and help me remember! I think I am just recently becoming acutely aware of things I have forgotten. I’m not remembering what I have forgotten, I’m just realizing that there are things I have forgotten (ugh, does that even make sense?)! I’m still sorting out how I feel about that and how to deal with it!
Math: Let’s not. The best advice I can give you is “Do NOT believe me on numbers or dates, even if I sound convincing. You must get one of ‘them’ to verify!”
Reading/Writing/Grammar: I’ll include “typing” as well. I think I am safe to say that I used to be AWESOME at Reading/Writing/Spelling/Grammar/Typing and that’s not an overstatement or bragging. Now…. I could probably pass a GED… I think, maybe. Spell check hates me but I assure you that you’d have a hard time following along if I didn’t use it. For example, I am currently running an experiment, for my own personal insights… before I started typing this sentence, I turned off spell check and started a timer. If you know me, you know that I used to type well above 180 (ugh, numbers… one-eight-oh) words a minute. I’m not going to change anything until I am finished and stop timer, then I’ll include the results.
[snip 1st attempt] Reabing/Writeing/Grammar: I’ll include tydeing as well. I think I’m safe to say that I use to be AWESOME at Reaping/Writing/Sdelling/Grammar/Typeing and thats not an overstatement or praging. Now… I could brobably bass a GED… I think, maybe. Sdell check hates me but I assure you that youde bave a bard time following along if I didn’t use it. For examdle, I am currently running an exberiment, for my own bersonal ingists… defore I started tydeing this sentence, I turned off sdell check and started a timer.. If you know, me, u know that I used to tyde, well above 180 (ugh, numders… one-eight-oh) worps a minute. I’m not going to cahnge anything, then I’ll inculde the results. [end snip 1st attempt]
Wow! That clearly sucked! It took me 16 minutes to type those two paragraphs!?!?! and that’s not counting the stuff I’ve typed on/off all day, before these two paragraphs, OR this paragraph after them. And clearly I need spell check! You’d think that I could just shut my eyes and type what I am thinking?!?! but nope… I seem to like to add ‘e’ to the end of things??? I do NOT even see that I am doing that! I guess that I’m no where near as good at thinking as I thought I was?!?! UGH… well, see, now you’ve been part of “the great experiment that is my brain!”
Soooo, now I’m frustrated… I’ll have to see if I can remember any more of your questions and some back later.
But, I do want to thank you for all the calls and emails and txts and thoughts and prayers and support!!!
[pics incl] Thanks for all the bday emails, txts and calls! [Lots questions I’ll try to remember to answer 🙂 ]
Courtney and Claudia have commented that Chinese candy/sweets/cakes do not have sugar, or very little sugar. In their honor, and clearly just to flaunt, we stopped by Rocky Mountain Chocolate Factory for some chocolate fudge, caramel apples and peanut butter cups. Apparently, Courtney and Claudia, mostly Courtney, have eaten all the Reese’s cups and other junk candies, we sent with them. 🙂
“How to help friends grieve” is more of a question than a statement. “How do you help friends grieve?” But I’m gonna take ya’ll on a journey with me. Please bear with my language because I’m not sure I am using the words that I INTEND… it’s frustrating but I believe this needs to be said, and SHARED with others, even if not as elegantly as I wish. [NOTE: John and Roni have read this. We all would like for you to share this with others.]
Roni and I both have some similar “thoughts” about life. If you are doing something, you should take notes, make a list, “do something,” to share with others, so they can learn from your mistakes or achievements. Or just to SHARE an experience. Hence my blog. I have always “journal-ed” and always SHARED my life with my family, ever since I was little, via handwritten letters and phone calls. Converting “my weekly letters” into an electronic version was very easy for me! Now, 18 years later, it has the added benefit of helping me remember my life! (Literally! More about that here: http://blog.scottsontherocks.com/blog/2014/09/30/neurology-appointment-093014/)
From Roni’s perspective, she also has always shared her experiences with others. And as tragic as the death of their son has been for them, it’s an experience that she is openly and honestly sharing with all of us. She asked me to share some “lessons learned” with people who are helping friends whom have lost their child (in this case, their only child). In her words,
“I think it’s important that, as we go through this, somehow we leave a legacy to help others who are or will someday be going through this. Whatever we can do to make it easier for the next guy has always been important to me in everything I do.”
[NOTE: To me, she has shown this in her life, in all she does! Advance Arrangements is also a testament to this desire… to help people avoid the chaos others have endured! http://www.advancearrangements.com/ ]
I’ll start at the beginning…
Late one night, after my post about Dalton [ http://blog.scottsontherocks.com/blog/2014/09/29/missing-dalton/ ], I emailed Roni and John to tell them about my day, tell them how much I think about them, and that we include Dalton in our lives. Trust me, it was nothing elegant but I just wanted to “hug on them” and… to be honest, I felt like they SHOULD KNOW when Dalton makes us smile. I don’t know how to word it without it sounding tacky… I mean, if something had taken place during his life, you can bet, I’d have called/emailed Roni & John and told them a funny story! So, why not now? I couldn’t think of a good reason NOT to share it, so I did. Even though we had cried, so what? I didn’t consider it “uncomfortable” and it was a “blogworthy” day. I’m seriously spending more time thinking about it NOW, than I did prior to “shooting off an email before bed!” I basically said all of that to Roni and that was the end of my email.
However, my email evoked a response in them that I guess is understandable and guess you can say it was even intentional.
They thanked me. and I don’t mean “thank you for your email” … i mean “Thank you so much for understanding” type of “thank you.”
You all “know” that it is important that loved ones KNOW that you think of those that have passed. I’m here to tell you that it is EXTREMELY important that the parents of children whom have died, KNOW… and I mean TRULY KNOW that their children live on in the lives of others. That their short beautiful lives will not be quickly forgotten. I knew that. I know that. And yet, I guess I do NOT “truly share” that with John and Roni. I know my family celebrates Dalton’s life daily. I know John and Roni know that we LOVED Dalton. But now, I realize that maybe they were not “truly aware” that we STILL LOVE DALTON, and will continue to do so for the remainder of our own lives. We will continue to share Dalton with others.
Talking about Dalton makes us cry. It also makes us laugh, and smile and remember. Some might call it “uncomfortable.” I call it natural. I now realize, from my email to Roni, that others translate “uncomfortable” into silence. “We shouldn’t make anyone uncomfortable, so we should NOT bring up Dalton nor make anyone sad.” I’m paraphrasing a thousand different reactions that people have around parents of angels. I’m telling you that YOU ARE WRONG. SPEAK UP NOW! SPEAK LOUDLY! or Speak softly. DO NOT REMAIN SILENT. Your feelings are not feelings of discomfort and your silence causes real pain. Yes, silence causes pain. Your silence speaks volumes. You think your silence is quiet respect for their comfort, when it really says “we want to forget.”
I am no specialist. I am no doctor, nor counselor, nor parent of an angel. But I know I am right.
I want you to truly think about this and I want you to stop and examine your actions. Using this experience as my guide… If you think of “your angel” (in this case, Dalton), please tell their parents, grandparents, and other family and friends. They WILL cry. It’s NOT “they will probably cry” because THEY WILL CRY. Guess what, YOU WILL CRY. Do not think that their tears are silent cries for you to never do that again! They are tears of joy, not tears of discomfort.
As I said above: Talking about Dalton makes us cry. It also makes us laugh, and smile and remember; and strive to do better; and then “DO IT FOR DALTON” I’ve seen this in my family and I know we are not alone. This is an easy assumption to make! There are so many of you out there that loved Dalton in life, and love Dalton in memory. Tell John and Roni! Go to his website: http://www.doitfordalton.com/
You also need to tell John and Roni that you are thinking of them… EACH OF THEM. If it is true… TELL THEM! So what if it makes you cry; so what if it makes them cry! It is so important that they know how much you love them; how much you think about them!
If you have another angel in your life, take this lesson and apply it now!
Just like the title says, you are “helping friends grieve.” The added bonus here is that THEY will also be helping you grieve.
[pics incl] It’s not everyday that the living room is full of basketballs… oh wait, NOW, it IS, everyday! 🙂
Jeff, Ashley and Heather (as work/schools permits) are coaching 7th grade girls Gold Crown basketball… and they were talked into 6th grade as well!
Jeff and Ashley went with me to my neuro appt today. Sigh, apparently, Stacy and Ashley went to my appointment with me last time [ http://blog.scottsontherocks.com/blog/2014/03/13/neoro-appt-031314/ ] and although I can sit here and read all about it… I have no memory of it?!? I’m a little startled/alarmed, to say the least! 🙁
Obviously, I’m having memory issues but I guess that’s the “new normal” for me. Using the past several months as a baseline, I guess I’d describe life as “new normal.” Head hurts but with a combination of “dealing w/ it” and managing pain w/ Tylenol and “resting when needed,” I can usually function. I do have days where I have to abruptly stop what I’m doing but I guess we are all becoming accustomed to “new normal.”
I teased the doc today, that I’m allergic to him, because yesterday my head really started hurting again, enough to stop me in my tracks again. 🙁 I took several showers overnight vs. drugs so that I could participate in the appointment and “show him what’s up.” My left arm still does the crazy “gets really cold and tingly.” Doc talked to the surgeons but at this point the consensus is that anything invasive could cause more harm than good. Also, the aspirin back in April, really didn’t make a difference and could also cause more issues so we aren’t doing that again either. Doc asked if I sleep elevated, and I replied sometimes. “Often, the pain doesn’t allow me to lay flat and other times I wake without the pillow. So I figure, my body’ll let me know what it can/cannot do…. or I’ll wake up dead.” They (Doc, Jeff & Ashley) didn’t appreciate my humor much. 🙂
Since this is “new normal,” I’m pretty sure this will pass again, eventually, w/ pain management and “keeping off my head” for a while. While I can’t say “it only lasts 2-12hrs,” usually within a couple weeks, it’s subsided enough where I am back to “new normal.”
Some of you have asked if my head still hurts. Yes, it pretty much hurts all the time. It’s still hard to describe. Sometimes, it’s pretty sharp pain right above/near my left ear and if it’s sudden, it’ll take my breath away and literally stop my in my tracks. Sometimes is a “heavier” pain that kinda starts up by my ear and aches thru my neck and shoulder (often my left neck near shoulder is very swollen, obviously draining slower). I cannot do too much when it’s like that either. Both of these often affect my thinking, vision, speech and left arm movement. If the coldness in my arm shows up too, I need to immediately lay down and “get off my head.” However, most of the time it’s like… more than a headache… like someone has put a very tight, heavy helmet on my head/neck (but only on the left). So it hurts, but as long as I don’t make sudden movements or encounter sudden LOUD sounds… I seem to be able to function. It’s slower than I prefer and I can do less, but for the most part, I truly don’t think “YOU” would notice, not until you spend some “quality time” with me 🙂 So yes, my head hurts “all the time.”
I’m actually more concerned about the memory issues… Basically, I’ve described it as “IF, I knew something prior to clot, I can usually get it back, sometimes I need your help remembering, or getting the correct words. BUT… if it’s been “since clot” I cannot guarantee I will remember.” 🙁 I’m actually glad that I’ve been journal/writing/blogging for years (18?) and that’s a habit, because it seems that’s the only way I’m gonna have “memory” of “new” things.
Appreciate all your thoughts and prayers!
Previous MRI images: http://blog.scottsontherocks.com/blog/2013/11/28/taz-last-brain-mri/
