Another Busy Day & CJSTUF Kickoff Meeting!

Well, first I must update you on Thursday.  Roger and Charlotte went to the library and spent some quality time reading books.  We also had Thanksgiving dinner at RMC with the Field Hockey team.  What a wonderful, generous bunch of girls (young ladies!).  The RMC Thanksgiving meal was fabulous and Charlotte enjoyed seeing the girls, especially her buddy Walker.  We came home and watched the Wizard of Oz before Charlotte headed up to bed.

On Friday, Roger took Charlotte to MCV to get her stitches out.  In true hospital form (I think this happens every 2nd or 3rd time we have an appointment) nobody seemed to know we were coming.  I guess there was a communication mixup but her appointment was at 9:30 and Dr. Tye doesn't even get there on Fridays till 10. Anyway, Roger was a bit miffed but used the opportunity to take Charlotte to Nurse April and get her dressing changed.  She always does a wonderful job.  They got home a little after noon.  Stitches in her head are out and everything looks great.

Meanwhile, we have our flights booked to Florida.  We will leave here on December 1st (pretty early in the AM) and return home late on the 14th.  We get to fly through Charlotte (Joy!) but it shouldn't be too bad.  They are working on getting us in to a princess breakfast/lunch at Disney.  Those book pretty quickly and since we are making our trip kind of last minute, that has presented a challenge.  I know they will do what they can.  We know from others who have had the MAW experience (including Reese who is there right now) that it is just AMAZING.  Disney itself is pretty cool but the MAW folks definitely go all out for their families and word on the street is that the Disney employees keep an eye out for the MAW families and make sure to treat them with extra TLC.  I'm not opposed to that at all!!!  This is one of the few times in my life when I will take advantage of any and all special treatment Disney wants to give to our family. 

Noah's Children came to visit yesterday.  They are a palliative care and hospice program for children exclusive to the Richmond area.  We met with "the Cathys" (both named Cathy, one a social worker and the other a nurse) and they shared some information about the organization, met Charlotte, and got some info from us.  They have their own doctor (Dr. Archuleta), a pediatrician specializing in palliative care, who will now coordinate with Dr. Khan from this point forward regarding Charlotte's care.  We talked about our desire to stay at home as much as possible at this point as well as other things that may come up in the weeks to come.  Their staff (consisting of a chaplain, social worker, and a team of nurses) will be available to us 24/7 for anything we might need including emotional support, medical care, respite, etc.  They will visit weekly (at least for a while) and continually update our plan based on our needs.  They will also help, when the time comes, in planning Charlotte's final days and what will happen upon her death. 

That seems incredibly bizarre to type that last sentence.

I have said before that this whole experience is very surreal to me.  It really is.  I've never had a family member (grandparent, parent, etc.) experience dying in this way (at least not that I was old enough to remember) so this whole concept of knowing that the end is coming but not quite knowing when is very strange to me.  It is so odd to talk about the end of her life in such a matter-of-fact way.  SIGH.

We also had a visit from Katie Reynolds, one of Charlotte's old babysitters.  Her mom came along as well.  They shared some books and had some quiet visiting time. 

Yesterday evening, the Advisory Council for CJ's Thumbs Up Foundation met for the first time.  I just want to recognize the folks that were there and are now a founding part of the group.  They are:

Meredith Hayes
John Toscano
Dr. Anna Madland
Jay Campbell
Emily Starrett
Kim Thies
Lauren Coe
Pam Myers (not able to attend yesterday but she's part of the group!)

We had a great meeting and discussed moving forward on a number of initiatives, capitalizing on the positive buzz that this has generated on Facebook, Caring Bridge, and within our community.

Long story short, the website is in process and should be "live" very soon.  We are working on getting an official blog (you're reading it now!) that will eventually navigate us away from Caring Bridge and directly on to the CJSTUF website.  This is mainly because we will have a lot more functionality for social media, etc. with our own blog.  We LOVE Caring Bridge but we are moving on to bigger and better things...

The Advisory Council members are working on a business plan, bylaws, and incorporation.  They are going to meet on their own and report back to us, probably after the Disney trip.  I am so excited!

I think that is the main stuff to report for now.  I must get ready as we have another busy day today.  We are going to the Coliseum with one of Charlotte's boyfriends (Wyatt).  She has a date to see Disney Live!  Then we will be off to Fredericksburg for the prayer service at Trinity Episcopal Church.  This will be a very informal prayer service (Compline) in Charlotte's honor at 5 PM with a small, informal reception to follow in the fellowship hall.  All in the Fredericksburg area are welcome to attend.  The church is on College Avenue, across from Mary Washington. 

Hope everyone has a wonderful weekend. 

Rachel

Just wanted to echo a few of Roger's thoughts in my own post (if you haven't read his previous entry, read that first).

Yesterday eased my mind in many ways.  I was very relieved to find out that for the most part, we should expect the progression of Charlotte's disease to be relatively easy.  I definitely like the idea that she will gradually start sleeping more and more and eventually will just not wake up.  As Roger said, that's the way to go, right?

I am not really looking forward to some of the actions and discussions that will follow, but to paraphrase Miss Scarlett, that is a conversation for another day.

For now, our lives are so busy with activities and engagements.  Sometimes it's hard to keep up.  Our network is keeping us well fed, well entertained, and making us feel loved.  Thanks to all of you who send notes (sometimes with cookies or brownies attached), help us set up activities, or just support us in so many small but meaningful ways. 

It is both bizarre and relieving to have no more clinic appointments.  It was very odd to have the conversation that we did with her medical team yesterday.  For me, it was almost an out of body experience.  Everyone on her team is so competent and dedicated.  Drs. Khan and Tye were holding back tears (a few slipped out) throughout the meeting and I was touched by everyone's commitment to our daughter. 

Right now it seems our biggest issue is sleep.  The problem is two-fold: First of all, Charlotte's sleep patterns are wacky and she seems to be waking up at odd times.  It's hard to tell if her wakefulness is tumor related, medication related, or just weird sleep patterns.  Secondly, both Roger and I are struggling with getting good rest.  Part of it revolves around getting up with her but the other part is that evening anxiety that just seems to settle in.  You get to bed (or try to go to sleep) and your mind just wanders.  It's a dangerous thing.  That's probably the time when I am saddest.  It makes it hard to settle down. 

I don't have much more to say right now so I'll close and try to move on with the day.  Coffee, anyone?

- Rachel (Charlotte's Mom)

A Very Long Post

First off: On Saturday there are two things happening which involve members of the Reynolds family.  I'm (Roger) singing with the Uptown Vocal Jazz Quartet on Saturday in Bethesda, MD. I'll include part of the email sent out to our fan list.

The other is a prayer service at Trinity Episcopal Church in Fredericksburg, VA starting at 5pm.  Rachel and Charlotte will be there.

The double booking is my fault.

Here's the email that went out:

"Just a friendly reminder to come on out to the historic Theatre in downtown Bethesda this Saturday and catch Uptown Vocal Jazz Quartet in a live show. We’d love to see you there, and even if you can’t make it, please spread the word to your music-loving friends!

Saturday Nov. 21
7:30 PM (one show)
Bethesda Theatre,  Performing Arts Center Boro Stage
7719 Wisconsin Ave., Bethesda, MD
Tickets available at the door ($25) or in advance via InstantSeats ($20)

Today we met with the entire MCV team including Dr.s Tye, Kahn, Massey, and Nurse Joann, Nurse April, and the Nurse Practitioner Debbie Shockey.  The purpose was to go over our options and for them to answer our questions about what to expect during the next few weeks.

The main thing is that they really can't say exactly what will happen or when.  They're just going on what they've seen before.  Everyone's different. Dr. Tye did reiterate that without the shunt, she certainly wouldn't have seen Christmas and might not even have made it to Thanksgiving so thanks to the shunt, as we like to say a lot, every day is a bonus; especially now.  Also, thanks to Dr. Tye and the shunt, we all agreed that there's no reason to think the Disney World trip won't be amazing for everyone.

They have discussed our situation with a neurosurgeon friend/colleague in Orlando and the hospital down there has been made aware of CJ's condition in case we should have a complication of some kind.

We went over whether or not CJ's immune system will recover since she is no longer receiving chemo (maybe), whether she will need any special medications or a respirator at any time (yes, to keep any seizures controlled and no, as it will probably not be necessary.  If she is ever in breathing distress, we'll give her oxygen) We will not be taking any heroic measures when the time comes.

For the most part, we're planning to keep Charlotte at home.  Critical Care will be available to us as well as something called Noah's Children and everyone on the team told us we're welcome to call them any time and even to request a home visit if necessary.  They all love her too.  We also still have the option of bringing her into the hospital at any time if it seems too much for us to handle.

As a concerned parent of a child with a terminal diagnosis, I wasn’t completely ready to give up and I spent a large amount of time researching alternative therapies.  I found a few interesting possibilities and dug into one in particular.  It is all about high dose ascorbic acid (vitamin C) treatments.  There are a few papers about it online and I was intrigued.  I forwarded several links to Dr.s Tye, Kahn, and Wolff and told them to tell me why we wouldn’t try this.  I sort of answered my own question when I found a site that reported another study on the dangers of high dose intravenous ascorbic acid (IAA).  Dr. Kahn confirmed it during the meeting.  The main problem is that the side effects are pretty bad and the track record of IAA is spotty at best and I refuse to put Charlotte through any more of that.

We will be getting her stitches out on Friday morning and occasional shunt checkups but other than that, barring any complications, that should be just about all for the hospital trips.  If she has another seizure, they would still like us to bring her in for a scan to make sure it isn't the shunt getting clogged (which is very possible)

As expected, it was a difficult meeting but one thing that Dr. Kahn said was extremely heartening.  With these kinds of tumors, there is very little, if any, pain. That is absolutely the most important thing for Rachel and me and gave us an extra layer of comfort.  We probably won't need much in the way of pain meds.  Of course, if she is in any pain at all, we'll be ready.

As her condition progresses, we'll probably see a slow but steady decline including a slowdown in eating and drinking and sleeping more and more until one day she might sleep for maybe 24-48 hours and pass in her sleep (isn’t that what most of us say we want?).  Who knows when that will be?

As we said before, it’s so incredibly sad that our perfect little princess will be leaving us so soon but at the same time, Rachel and I have found a certain amount of peace about it all.  We have had the incredible opportunity to spend a great deal of quality time with Charlotte and know that she is still enjoying life.  She is not the Charlotte of a year or even a month ago but she is still breathtakingly beautiful and continues to amaze us with her strength. She laughs when we tickle her, she remembers stuff from when she was two, she still sings to herself (which is one of my favorite things about her) It’s so amazing that we KNOW what’s going to happen and we’ve been able to start saying a long, experience filled, love/hugs/kisses laced goodbye.  We’ve been able to move through a large chunk of our grief (anger, denial, most of the fear-that’s a big one, etc…) already and to know that we gave her the happiest time that we could in the small amount of time that we’ve had with her.

Not that everything’s all hunkey dory.

Last night I found myself losing sleep worrying about the fact that we don’t have very much video footage of her. “What will I have to remember her by?”  “How will I ever remember what she looks like?” “We should have taken more pictures of her!”  “YAHHHHHH!!!!!” My thoughts did that spiral thing that gets me sometimes.

Then we had a great day today.  Mommy got some great alone time and CJ and I got to go for a long walk.  We went to Randolph-Macon College and stopped off at the fountain (the Frank E. Brown Fountain Plaza).  She has always LOVED fountains and that fountain in particular. We went in to see Barclay in the bookstore where Charlotte got an R-MC lanyard, an apple, a Jakers (PBS cartoon) book, a severed tiger tail (leftover from the Hampton-Sydney game), and $85 from bracelet sales.  She always ends up with stuff!

After that, we went back to the fountain and I started thinking (“A dangerous pastime.” “I know.”).  I really dislike the concept of donating money for the purpose of getting something named after you or a company.  Happens all the time on college campuses and I think even the toilet paper dispensers at the Houston Ronald McDonald House are named after someone.  Seems like an attempt at artificial immortality.  At the same time, I’d like Charlotte to have a cool “thing” so that people could think about her fondly. So, I thought to myself, why not a tradition?  Think we could talk someone into installing pink and purple lights somewhere during the month of July so that we could stand around, eat chocolate, and sing Frosty The Snowman?  Just a thought.

Next we went to the RR tracks to watch a couple of trains go by and CJ said she was really, really hungry.  We were on the path to go right by some pretty tasty eats so we popped into Homemades By Suzanne.  Yummy place.  Charlotte saw the fruit salad and wanted grapes.  But ONLY grapes so we couldn’t get the fruit salad there.

So we went across the street to Cross Bros. Grocery to look for some grapes.  If you don’t know about Cross Bros., it’s been around for 97+ years and I think the original bookkeeper is still in the back somewhere.  It’s the kind of place that still hand-prices items, has signs in the windows painted with tempera advertising pork loin, and will do your shopping for you and even deliver.  (Needs to be a CBS Sunday Morning segment done on it)  Anyway, we bought some grapes and a fire-starting log for $.79 and Charlotte dug in (to the grapes, not the log).

After we left Cross Bros., we started to pass the store formerly known as the Club Car (ice cream place that closed down).  I noticed it has reopened as a place called “The Station Café” so I popped my head in to see what was up.  Actually, I was attracted by the sound of children making joyful noises. Being pleasantly surprised by what I saw, I brought Charlotte in and ordered her a hotdog (not hard to do since it’s the only food they serve right now along with coffee and ice cream). The place actually isn’t all that kid-friendly but the atmosphere is very enjoyable with comfy chairs and loveseats.  Bartlett, one of the infamous “Naked Men Of Ashland,” now owns it and was running his tail off.  The hotdog was large and seemed pretty tasty to CJ (I’m not much of a hotdog guy).  She ate the whole dog and most of the bun.

So we did our part to stimulate the economy of Ashland today.

After the Station Café, we went over to the library fountain and I amazed CJ by moving the big globe around on the water.  I also found the brick Rachel and I bought to help fund the plaza and had imprinted with Charlotte’s name (what was that I said about putting names on stuff?!?)  It was actually kind of cool to point it out to Charlotte and tell her, “This is YOUR brick!” Takes on a bit more meaning now.

We met people we know, or who at least know Charlotte, along the way and it was interesting to observe how some people completely avoid talking about IT and some have no qualms at all.  None of it’s right or wrong and everyone is in a different place so I don’t necessarily judge people for it.  It’s just interesting.  For the record, I usually don’t have a problem talking to people about CJ’s journey.  Sometimes I just want to crawl into a hole but not often.  Not today.

Then we walked home.  The weather got progressively more and more beautiful and by the time I turned the corner into Slash Ct., I was actually in a good mood.  My anxiety from the night before was gone because I’m pretty sure that the many, many awesome days like today that I’ve been able to spend with Charlotte will stick with me the rest of my life and the pictures and videos I have of her will do.

The meeting was after that and things got darker.

On the way back, we stopped off for dinner at, where else, Chick-fil-a (CJ’s request). She ate pretty well again and we came home.

We read some books, watched Charlotte’s Web (CJ’s request), changed her dressing, and finally got her to bed.

I’m definitely going to miss her and when she finally passes, that will be the most awful day of my life, I guarantee it, but that’s me being selfish and she’ll be free.

We’re all about coping mechanisms here and I had an idea about one:  After we get back from Disney World, we’d like to do something to keep the energy as positive as possible and directed at Charlotte.  When it looks like things are nearing a junction, we’d like to have what I call a “reading vigil.” We’d like people to come by and read children’s books to her all day, no matter if she’s awake or not.  We’ll organize “shifts” and feed whoever comes by.  It’s her favorite thing in the world and I can’t think of a better way to send her off.

Also, for those with kids in our area, we think a special event at Romp n’ Roll VA Center might help them (and the parents) cope.  We’ll let the kids know what happened and then probably have a professional on hand to help anyone who needs it (all of us).

We’ll let everyone know when these things get scheduled.

Tomorrow we go up to DC to visit the butterflies at the Smithsonian, I have rehearsal with Uptown, we’re spending the night up there and then we get to visit with the Pandas Wednesday morning at the National Zoo all thanks to some bigwigs with big hearts.

Wednesday afternoon is another pony experience and then dinner brought to us.

Thanks for all the love.  We really feel it.

- Roger (Charlotte's Dad)

Whirlwind Weekend

Saturday was busy with lots of visits.  We went to see Charlotte's godparents (the Walkers) for brunch.  They live on the Richmond Marathon route.  In years past, Roger has been a runner in the marathon and I have always been sure to make a stop at their house.  They are at mile 22 so it's a pretty key point in the race.  The runners need lots of encouragement.

We got there just as the lead runner was coming through (just shy of 2 hours into the race).  He was the leader by a LOT!  After some breakfast, we did lots of visiting.  Roger and I took turns being inside and wandering outside to see the racers.  Roger said it was very bizarre to be on the sidelines and cheering folks on.  At one point, both Roger and I were out watching the crowd and I just happened to see Dr. Tye running down the road.  When I realized it, Roger and I both shouted hellos.  He saw us, came by, and gave us both a hug!  What a guy!  How he has time to train for a marathon with everything else going on, I will never know.  We immediately came in and told Charlotte who we had seen and she just beamed.

Then it was home for a bit and we were off to Wyatt and Heather's house.  Wyatt had not seen his "girlfriend" in months thanks to our journey to Texas, their own travel plans, illnesses, and other unforeseen events.  It was nice to have the two of them together.  They built gingerbread houses and then watched a movie together.  We got treated to yet another wonderful meal.

THEN it was off to Lake Anna.  We stayed at Bob and Meryl's cabin (also known as Shangri-Log) for the evening.  The goal, of course, was rest and relaxation.  Charlotte had an odd night, though.  I think she ate too much (she had been shoveling in the food) so when she went to bed, she said her tummy hurt.  She did sleep for a little while but Roger and I both got up with her multiple times as she was "muttering" in her sleep.  Then she was awake as early as 2 AM and didn't seem to want to go back to bed.  She also was not content to read by herself and wanted company.  So Roger and I took turns with this (but pretty miserably as we were both tired).  We did finally both get some rest and then it was morning and the coffee appeared (magically!)

We were treated to another wonderful breakfast and Charlotte downed bacon, eggs, and toast.  Then we hung around the cabin, taking in the beauty of the lake and the woods.

Around 2, we set off back towards Ashland, stopping at a horse barn where our friend Kelly had offered a ride on a very mellow horse.  The horse's name was May and she was beautiful.  Charlotte didn't want to ride for very long (she rode with daddy) but Roger got to spend a little time riding.  Then we got to feed the horses (they like peppermints!  Who knew?),  and then we got a tour of the barns and saw a few of the other horses. 

From there, we stopped at Romp n' Roll to take care of a few things, ran into Kolbey, and we all went to Casa Grande for dinner.  I guess this was our "anniversary dinner".  Yes, today is Roger's and my 12th wedding anniversary.  Kind of surreal given the circumstances but we are certainly celebrating the fact that our relationship is strong enough to withstand even this kind of stress.  I am appreciative of my "other half".  Anyway, I had a chimichanga  (shout-out to my bridesmaids...you know what I'm talkin' about!) :-) and Charlotte ate an entire quesadilla and some chips!

With all this eating, i am SURE I gained about 5 pounds just this weekend alone!  Yikes!  But it was all yummy. 

We are now home, taking care of laundry and catching up on emails.  Charlotte is asleep and Roger is watching football.  Whew!  What a weekend.

Tomorrow is a meeting with Drs. Tye, Massey, and Bitsko to discuss some further plans and try to get an idea of what is coming in the next few weeks.  Tuesday we have a trip to the National Zoo scheduled (DC!!) and there are some other small events on the horizon for the week.  I am hoping that we get the Make-A-Wish stuff resolved by tomorrow. 

I can't believe Thanksgiving is almost here. 

- Rachel (Charlotte's Mom)

An Overdue Update

Thursday was a good day.  We were going a bit stir crazy with all the rain so we headed out around noon.  First we hit Cracker Barrel for a yummy lunch.  Then it was off to some errands that included stopping by RNR (just in time for CJ to have a ROYAL poop!), Target, Ukrops, etc. We had a great Kohl's coupon so we engaged in a little retail therapy, getting some warm winter jammies for Roger and myself as well as a few other goodies. 

Then we went to see our good friend and chiropractor, Dr. Anna.  All three of us got "popped like popcorn" (as Charlotte likes to say).  Very important with all the stress we are dealing with. 

Then back home again. 

Charlotte had another relatively sleepless night.  Her brain just isn't letting her fall asleep.  We take her to bed at a reasonable/normal time but she just stays in bed reading books.  I think she fell asleep around 2 AM.  I did get some sleep but woke up wide awake around 1 or so.  Spent some time on the computer.  It's amazing some of the things you can learn on the internet.  I found out some interesting information about the function of the thalamus, including the fact that it regulates sleep.  It's really crazy to think about all those times when Charlotte was an infant and had such trouble sleeping that this tumor was growing there all along.  There's no way that we could have ever diagnosed it earlier and there are plenty of kids who have sleep issues who don't have brain tumors, but the more I think about it, the crazier it seems sometimes.  It certainly explains a lot. 

Charlotte continues to do relatively well.  She doesn't really want to do much more than read, watch tv/movies, and eat.  Pretty much all interest in her toys, coloring/art, other activities is gone.  I'm not sure if she is frustrated by her relative lack of motor skills or if her attention just isn't there.  Her speech is much slower and we have to give her lots of time to process things.  But her personality is still there.  She is still our Charlotte!

There are moments when I just want to take all the STUFF in our house (toys, games, etc.) and clear it out.  So much of it seems so useless these days.  It was nice the other night when some friends came over to play.  They actually made use of the toys that had been sitting in Charlotte's play area, gathering dust.  Anybody want to do some Christmas shopping at our house?  We've got some great, gently used toys!  We won't give up any books, though.  She uses those daily and never wears them out!

Today was another good day.  We got a relative break in the weather.  I got a bunch of RNR work done (paperwork, bills paid, etc.).  The Hayes family came over mid-afternoon for a short playdate and we all went for an early dinner at Pepicellis.  Good pizza!  It was a fun time and Charlotte ate 2 full pieces of cheese pizza!  We came home to watch more movies but I fell asleep on the couch.  Now Charlotte is back to reading and we are all heading to bed.

I think the best part of today was that it was the first day in over a week where I didn't completely break down emotionally at least once.  That's HUGE! 

I can't believe it has been a week since our devastating MRI news.  In a way, it seems more like a month.  Our calendar for the next few weeks is slowly filling with activities.  Tomorrow includes two visits/playdates and then we are headed up to a friend's house at Lake Anna for some RnR of our own.  We'll probably stay there Saturday night and Sunday. 

Monday will bring another doctor's visit with Dr. Tye and Dr. Massey to discuss next steps, including a palliative care plan for Charlotte.  We hope to get a better idea of what to expect in the next little while. 

More events next week as well. 

We got an interesting phone call today.  I think someone from Humana (our insurance company) called to check on Charlotte and when Roger told them what was going on, he received another call not long after from a counselor/patient advocate.  She was not a Humana employee but works for the company to assist families in situations like ours, making sure that we have access to any needed resources and helping us with the process, both logistically and emotionally.  Anyway, we shared with her Charlotte's story as well as the resources we are currently utilizing.  She asked about any fears or concerns we might have, said that it seems like we are on the right track and have access to very good resources (thanks to ASK and our fabulous medical team) but agreed to follow up with us in a week or so just to check in.  We also got her number in case we had any further questions for her. 

I really appreciated it.  As much as we like to complain about insurance companies (and I know I have done my share on this blog), Humana has a lot of resources like this available for their customers.  They also have an on-call nurse available for questions about medications and medical procedures.  I can imagine that if we didn't have access to our current resources and/or the knowledge and support system that we have right now, this service would be really valuable to us right now.  Her manner on the phone was very supportive and comforting.  She seemed to be very good at her job.  Nice to know that some of our premium goes to more than just paying out claims or filing denials...

I guess that's it for now.  Another busy day tomorrow.  I miss work.  I miss it a lot.  This is NOT a normal lifestyle for me.  That being said, I know that if I tried to go to Romp n' Roll and teach, I would probably be a mess and wouldn't be a very good instructor.  If you are part of our RNR family, please take the time to thank our employees (especially Annette, Samantha, Emily, Lauren, and Margie) as well as the crew at the West End and Midlothian stores who have been helping us keep it all together.  While you're at it, don't forget to register for your winter classes or birthday parties (wink, wink!). 

Have a good (dry) weekend, everyone....

Rachel (Charlotte's Mom)

Sigma Alpha Iota Symphony

Thanks for all the words of kindness and inspiration. Roger's post yesterday was pretty powerful, I agree. Now it's my turn.

Another thing that has been wandering around in my head is the Sigma Alpha Iota Symphony.  A little background:

In college, Roger was in the men's music fraternity (phi mu alpha sinfonia) and I was in the women's music fraternity (sigma alpha iota).  And yes, it was a FRATERNITY.  Anyway, the social circles in which we ran basically created the opportunities that allowed Roger and I to become friends and, later, a couple.

SAI was a huge part of my college life.  Not only are my best friends from college also my sisters but my involvement in the organization allowed me to develop my leadership skills which, in turn, helped in my life beyond college.  Although my formal involvement with SAI has waned over the years, the concepts of our sisterhood stay with me.

A few days ago, I started replaying in my head our Sigma Alpha Iota Symphony.  This is a poem/credo that I think frames our values as an organization and as individuals.  One of the first things we learned as pledges was the SAI Symphony.  The elements of the poem have different interpretations to each member but I often liken it to a scripture.  It's an inspirational piece of wisdom by which you live your life.

Since it has been on my mind, I thought I would share it with all of you (and no, I am not breaking some vow that will put me on double-secret probation by sharing it.  This is kind of "public knowledge" fraternity stuff...).  Shout out to my Sigma Chi SAI's: "That's NOT the secret knock!!!"


Anyway, here it is...

The Sigma Alpha Iota Symphony

To study and practice the goodness of life, the beauty of art, the meaning of music.

To sing the song of sincerity and universal peace.

To speak the words that build, that bless, that comfort.

To play the harpstrings of loving kindness, tolerance, appreciation, and genuine gratitude.

To strive for the joy of simplicity, for the noble.  To be faithful over a few things.

To listen, to be still, and to know the harmony from within.

To falter never in seeking loving service, wisdom, and understanding.

In a word, to be loyal to Sigma Alpha Iota and her teachings; to find joy, hope, and inspiration; to remember that "every good gift and every perfect gift is from above" and "whatsoever ye do, do it heartily as to the Lord and not unto men."

And again to practice.

This is to be our Symphony.

 

-Rachel (Charlotte's Mom)