lovely light

I signed in to my blogger this evening to write about someone I did not know very well. She was 42 years young & passed away today following an 8-year battle with cancer.

Shannon Hope was the youngest of five & she is survived by one brother, three sisters, her husband, & two daughters: Katelyn & Erin.

She is also survived by her parents Ronald & Beverly.

Beverly (a.k.a. Aunt Bevy), is my grandfather's younger sister-- my late maternal grandfather, Dr. Francis Rosner (a.k.a. Poppy Freddy).

Poppy Freddy is actually the link to that very unique gene in our family.

I had a dream about Poppy Freddy last night & I do not remember the last time I had such a vivid dream about him. It was so unbelievably real & it was a very happy dream, even though I somehow knew that he wouldn't be there when I woke up.

The dream-- to loosely summarize, as bits & pieces were extremely odd the way dreams can be-- was about all of us spending a long weekend together. We were staying at a place that my grandparents owned, which looked nothing like any of the places they actually owned in real life. During some parts of the same dream I was a young child & in other parts I was an adult. The "scene" I remember most was the first morning of the long weekend & in this portion of the dream I was a child. Poppy Freddy just finished brushing his teeth & smiled a bright, beaming smile in my direction. Quite strangely, in my dream I remember thinking we should take a selfie. We didn't, but I can clearly recall that very specific, odd detail.

I have no idea what the dream meant but Shannon had one of those incredible beaming smiles, too. She also had very beautiful auburn hair like Jenna's. Her daughter's carry similar stunning features like their mom & their grandmother (my Great Aunt Bevy). Sadly I have never met Shannon's daughters who are now 13 & 11, but I have seen many pictures.

I was connected with Shannon on Facebook but we didn't interact much. Then last year she sent me a short albeit beautiful message, when Grandma Gert passed away (Poppy Freddy's Gert).

The next time we exchanged messages was not until early last month. Jenna mentioned that she had recently reached out to her, which sort of gave me the courage to do the same. At that time the family knew that the cancer had spread & it's my understanding she was primarily on comfort care from that point forward.

So I wrote Shannon a message to say that we were sending our love... &  that I wish we had kept in touch over the years... & I wish we lived closer... & all of the things we might tend to say.

Then I shared a memory from when we were children & the "Alabama clan" were up in NJ for some sort of occasion. I can still recall the restaurant & other small details, which I shared with her as well.

I told her that she is never far from our thoughts & we were sending lots of love her way.

The next day she messaged me a very heartfelt reply. She recalled the last time we saw one another-- which was more than a couple of decades ago-- when we all happened to be in Israel at the same time when she was still in college. I remember the trip but sadly I do not remember seeing her-- it was December of 1991 & I was a junior in high school. She continued on to say, "I've never been good at fb but when I'm on I love reading your posts & feeling connected with you & your journey. Love you so much & that is something distance & time does not change. Xoxoxo"

I will always deeply cherish our brief exchange.


Earlier today her husband Kerry eloquently shared (outside of social media): "With the most peace she's known in years, Hope has passed." 

He quoted a poem by Edna St. Vincent Millay:

"My candle burns at both ends;

It will not last the night;

But ah, my foes, and oh, my friends-

It gives a lovely light!"

...to which Aunt Bevy & Uncle Ron added:

"Shoshana Chaya, our youngest daughter 

Shannon Hope, made such a Lovely Light-

didn't she?"

I did not know Shannon well, although she was very close in age to me, Jenna, & 2 of our (5) first cousins on the same side of the family. But I do remember her & still love her... & to quote her, that too is something which distance & time will never change.

She is survived by a large, loving family that is second to none. May peace we welcomed in knowing she is eternally comfortable now.
And may she watch over her loved ones the way they carefully watched over her.

Our thoughts & hearts are with you. xoxoxo

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(Just a side note, when I opened my blogger to create this post I noticed my last entry was titled "hope for the best". Completely unrelated, that was a follow up to Hayden's Spring concert, but I had forgotten the title. It gave me chills because many of the people closest to Shannon, called her Hope.)

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hope for the best

Shame on me for the delayed follow-up to last week's post, about the concert...
Although I'm pretty confident anyone who reads this already knows the ending.

If you're still wondering how he did, whether or not he made it up to the stage-- both times, when the 2nd graders performed solo & then together with the 1st graders-- this might help: (the link will open in a separate window)

FMB Spring Concert 2014

But it was so much more than that...

He mimicked the music teacher with his arms...
He enthusiastically turned towards his peers on the risers...
He clapped with the audience...
And several times he exclaimed, "thank you for coming!"

(Btw, all of this at an hour of the evening when he's usually getting ready for bed!)

I was/ am beside myself & in complete awe of him, & what he is capable of. His participation was a total 180 compared to last year (although I'd be proud & impressed regardless).

There were additional factors to get in the way this year as well... including the fact that due to the brutal, snowy winter we had, there was limited parking at the school. So without the use of the field, people had to park at the other elementary school & they were shuttled over. I drove to the school immediately following work & purposely parked my truck there ahead of time, so at least we'd have a vehicle nearby for a quick getaway (if needed). And the cold, rainy weather that night certainly didn't help.

But inside the school felt much different! By the way, Hayden said the Toy Story song was his favorite (You've Got a Friend in Me)

I want to add a heartfelt nod to his former babysitter who showed up to support him... it was a truly great surprise. And last but not least, to Grandma Suzi & Pop Z who somehow squeezed in an appearance the night before they were leaving for California.
And apparently Hayden's most obvious fans are not the only ones paying attention. This evening I received an unexpected phone call from another mom whose younger daughter is in the same 2nd grade class as H. Apparently she just wanted to say that she's been meaning to call me because H did so well in last week's concert... & even though "he was his usual adorable self"... that he was so much more involved & it was really great.

Well I can not top that, but I will say my primary hope was that Hayden would learn he can do this.

So this time next year when I once again hope for the best, I think I'll leave out the part about expecting the worst. It's not applicable to my kid.

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it's tonight

 

Here are pics from this time last year-- before & during Spring Concert:

Anyone who remembers knows the rehearsal pic on the left where H appears to be excluding himself (sitting beside his aide)... is quite the contrary because it actually took A LOT for him to make it to the front of the room. I was very proud & shared the progress on Facebook.

The pic on the right was taken just one day later, during the actual concert. If you happen to remember the post, it was a pretty huge deal (as you can imagine) & brought me to tears.

Here is a clip of him clapping to a little girl named Aniella (the link will open in a separate window):
2013 Concert

This year's concert is tonight.

The bad news is that we are already having a bit of a tough morning with him (although last night was even worse).

The hopeful news is, that so far he successfully participated in two(!) 1-hour rehearsals at school. 

For me, the Concert is less about him being included, & more about the fact that I don't want him to remember the anxiety. I don't want him to remember the crying. I don't want him to remember the throwing up. I am proud either way because he has come SO far.

But I would love for him to simply remember that he can do this.

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I thought I was his biggest fan

Earlier this week my parents & I participated in the annual National Fragile X Foundation (NFXF) Advocacy Day in Washington DC. This was my third year attending (including my first visit with Jenna, & my second one with Dan). This was also the second visit for my parents who attended another year as well.

It is a two-day event including training on Day One & meetings on Capitol Hill on Day Two. Day Two begins with a group picture on the steps of the Capitol Building. The constituents are then treated to an exclusive tour inside, including a short address in the House Chamber led by Representative Gregg Harper from Mississippi. His son Livingston has fragile x syndrome.

The NFXF has a Community Support Network of volunteers (mostly parents) from all over the country. The photo on the top left is me with Paula Fasciano of the New Jersey Fragile X Community Support Group (whom I am a new Co-Leader alongside).... The top right is me & my parents with Representative Harper.... And the bottom picture is most of the NJ advocates assembled on the steps of the Capitol building. We were of course advocating alongside well more than 100 other constituents from around the nation. (There was representation from 30-something states!)

Our group will be addressed by Rep. Gregg Harper and possibly other Members of Congress in a special tour of the House Chamber. After a short address from Rep Harper, he will lead a short tour of the Capitol Building and at this time you’ll be able to take photos. - See more at: http://www.fragilex.org/advocacy/advocacy-day/nfxfad14/preparing-for-2014-nfxfad/capitol-hill-appointments/#sthash.GL4z7Kv2.dpuf

Our group will be addressed by Rep. Gregg Harper and possibly other Members of Congress in a special tour of the House Chamber. After a short address from Rep Harper, he will lead a short tour of the Capitol Building and at this time you’ll be able to take photos. - See more at: http://www.fragilex.org/advocacy/advocacy-day/nfxfad14/preparing-for-2014-nfxfad/capitol-hill-appointments/#sthash.GL4z7Kv2.dpuf

If you have never been to Advocacy Day, you really should go! Again, this is an annual event hosted by the National Fragile X Foundation & it takes place in early March, when Congress is considering the federal budget for the following year. We advocate for support & to maintain funding. Although the experience may sound intimidating, any hesitation will ultimately be outweighed by a complete feeling of empowerment. Everything we need to say (along with how to say it) is discussed during training the day before.

We returned late Wednesday evening... & with work, school, & the regular daily grind resuming the next day, I have yet to finish unpacking.

So yesterday when the annual (non fx-related) Wine Tasting Fundraiser had finally arrived-- hosted by our local Education Foundation-- I felt entirely too tired to go.

I also wasn't sure who I would know there, & I wasn't in the mood for wine tasting. But being a newer member of the Education Foundation-- not to mention I only bought a ticket to the event so I could volunteer-- it would have been wrong if I didn't go. So after dinner I changed into something a bit more presentable than my regular weekend garb, & I headed to the event. Solo.

It takes place in early March each year when Congress is considering the federal budget for the following year. - See more at: http://www.fragilex.org/advocacy/advocacy-day/#sthash.OZRt5ASv.dpuf

It takes place in early March each year when Congress is considering the federal budget for the following year. - See more at: http://www.fragilex.org/advocacy/advocacy-day/#sthash.OZRt5ASv.dpuf

It takes place in early March each year when Congress is considering the federal budget for the following year. - See more at: http://www.fragilex.org/advocacy/advocacy-day/#sthash.OZRt5ASv.dpuf

By the end of the night, the Education Foundation raised more than $13,000. The various auction items were donated by many local businesses, but also included awesomely creative contributions from teachers. For example a lunch date, bowling, swimming, cooking, teaching gym class for a day, & so forth.

Although I put in & lost a bid for the bowling (we love the teacher who contributed it), I did walk away with a $25 gift certificate to a local jewelry store... & also some leftover wine which was offered to the volunteers.

But my favorite part was talking to some of the parents & staff from school who were there.

Especially a fellow parent of one of H's classmates who appreciated hearing a little about Hayden & fragile x, & commended me for speaking with staff & students every year...

Then there was one of the primary organizers of the event, who knows Hayden from subbing in the Special Ed room... she's the one who nominated him back in the fall for the Random Acts of Kindness Award when he won a Certificate of Appreciation...

So I finally offered her a very belated (albeit heartfelt) thank you for thinking of him, & for nominating him. She said something to the effect of, "I wish I could nominate him every day, I love your son so much!" She also went on to say they have their own thing (with their H names) & when she sees him, he announces she's "in the house!"

I even had a short conversation with the husband of one of Hayden's former teachers... & he told me that he owes Hayden lunch. He said the last time he saw my kid at school, H said they should do lunch... :)


But there was another teacher there who used to be on staff at H's school & is currently placed elsewhere. I know of her... well, we may have met once but I remember her more by name. This woman could not say enough about my son... it was obvious she misses him so...

She last saw him at the annual Craft Fair back in the fall, & as I understand it he was trying to run her carnival booth-- which she loved. But because I was tending to my own table I missed most of the show (Grandma Suzi & Pop Z were following him around that day).

Anyway, she was at the fundraiser last night with her husband & mom who both apparently knew of H... & her mom who never even met me (or my son) nearly brought me to tears, when she said with everything she's heard about him it says a lot about the parenting, too... <3

Among the little chats I had with parents, teachers, & so forth-- despite the fact that most of them already know H, there were many I was only speaking to for the first time. I was also introduced to many spouses & friends with a simple, "this is Hayden Capela's mom".

He really is the Mayor, & now he's turning me into his campaign manager.

But more importantly if all continues to go well, I hope I am only ever famous by association.

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