A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.
Showing posts with label elks. Show all posts
Showing posts with label elks. Show all posts

Saturday, December 9, 2017

Time to slow down

Have you ever looked at your day or week and said "where did the week go?" and your to-do list was never touched?


Yeah, well I did that today.  And I realized that most of that busyness was created by others and we were just reacting to it. 

It wasn't due to things that we were planning on doing, it was all the extras that everyone else decided were important for us.

Well, after this realization, it's time to make what my daughter and husband and I want to do the priority.  We get so little time together as a family, we need to make the most of it.

So last night we went to a kids Polar Express party where Shelby created ornaments and a mug.  Today was breakfast with Santa (to benefit a local non profit) with a bounce house and putting our own tree up.  Tomorrow is a kids Christmas party for most of the afternoon.

Yes, we are busy.  To see the joy on her face as she experiences new things, and remembers things from past years, is priceless.



Sunday, November 30, 2014

A way to remember

Today is the last day of November and the end of Thanksgiving weekend.   That also means that it is less than a week until what would have been Dan's 8th Birthday.
 
Many people do a Random Act of Kindness Day in memory of a loved one.  But that isn't what I'm thinking.

Saturday, June 28, 2014

Flag Day Pictures

June 14 was Flag Day. Flag Day is one of those "forgotten" holidays. But for Elks, Flag Day is an important day. It is one of those days that all Elks need to recognize.

If you are near an Elks lodge on June 14, please see the Flag Day Ceremony. It is a public ceremony. The Ceremony details the history of the flag and what it means.

In 1907, the BPOE Grand Lodge designated by resolution June 14 as Flag Day. The Grand Lodge of the Order adopted mandatory observance of the occasion by every Lodge in 1911, and that requirement continues. The Elks prompted President Woodrow Wilson to recognize the Order's observance of Flag Day for its patriotic expression.

For more information about Flag Day, you can read the Elks brochure here.

Here are some pictures of this year's ceremony from our Elks Lodge, which took place in the Veteran's Park near the Lodge.

Saturday, May 31, 2014

Celebrating Elks

Every May, the New York Elks hold their annual spring convention.  This year it was in Buffalo.  This is actually Shelby's 2nd convention.  She was 6 weeks old when we went to the one in the fall.

At the spring convention, the new State President is elected and installed.  There is a big celebration to mark the event.  Guess who got into the festivities?

Wednesday, April 9, 2014

What an Elks Year!

It was about this time a year ago I was writing about the honor my husband received being elected Exalted Ruler (CEO) of our local Elks Lodge.

His term technically ended on March 31, however the official ceremony installing the new Exalted Ruler was on Sunday, April 6.

Here are some highlights from the past year:

Sunday, January 26, 2014

Snow tubing

We went to Willard Mountain for an Elks snow tubing event. Faron and I have been skiing before, but never tubing.

It was a but chilly, but was warmer than it had been.  With fresh fallen snow the only issue was the snow blowing in your face.

Sunday, December 1, 2013

Elks Memorial Sunday

The First day in December is designated as Elks Memorial Sunday, and it is mandatory for all Elk Lodges to conduct a Memorial service for the members who have passed away during the year. 



 This day remembers all those Elks who have passed away with a special dedication to those who have been lost since the last Memorial.  

There is also a special recognition to those veterans who have been lost and those who continue to fight, as well as a dedication to those lost on September 11, 2001.

This is a public ceremony and is very moving and touching. If you ever have a chance to attend, please take the time to do so.

This year, the poem below got me choked up:

TO MY DEAREST FAMILY:

Some things I'd like to say
but first of all to let you know
that I arrived okay

I'm writing this from Heaven
where I dwell with God above
where there's no more tears
or sadness there, is just eternal love

Please do not be unhappy
just because I'm out of sight
remember that I'm with you
every morning, noon and night

That day I had to leave you
when my life on Earth was through
God picked me up and hugged me
and He said I welcome you

It's good to have you back again
you were missed while you were gone
as for your dearest family
they'll be here later on

I need you here so badly
as part of My big plan
there's so much that we have to do
to help our mortal man

Then God gave me a list of things
He wished for me to do
and foremost on that list of mine
is to watch and care for you

And I will be beside you
every day and week and year
and when you're sad, I'm standing there
to wipe away the tear

And when you lie in bed at night
the days chores put to flight
God and I are closest to you
in the middle of the night

When you think of my life on Earth
and all those loving years
because you're only human
they are bound to bring you tears

But do not be afraid to cry
it does relieve the pain
remember there would be no flowers
unless there was some rain

I wish that I could tell you
of all that God has planned
but if I were to tell you
you wouldn't understand

But one thing is for certain
though my life on Earth is o're
I am closer to you now
than I ever was before

And to my very many friends
trust God knows what is best
I'm still not far away from you
I'm just beyond the crest

There are rocky roads ahead of you
and many hills to climb
but together we can do it
taking one day at a time

It was always my philosophy
and I'd like it for you too
that as you give unto the World
so the World will give to you

If you can help somebody
who is in sorrow or in pain
then you can say to God at night
my day was not in vain

And now I am contented
that my life it was worthwhile
knowing as I passed along the way
I made somebody smile

So if you meet somebody
who is down and feeling low
just lend a hand to pick him up
as on your way you go

When you are walking down the street
and you've got me on your mind
I'm walking in your footsteps
only half a step behind

And when you feel the gentle breeze
or the wind upon your face
that's me giving you a great big hug
or just a soft embrace

And when it's time for you to go
from that body to be free
remember you're not going
you are coming here to me

And I will always love you
from that land way up above
Will be in touch again soon
P.S. God sends His Love

--Author Unknown 

Friday, October 4, 2013

Create Jewelry in Memory of Dan

October is Niemann Pick Disease Awareness Month

This is my second fundraiser for this month.




NATIONAL NIEMANN PICK DISEASE AWARENESS FUNDRAISER
DAN’S DREAMS

SATURDAY, NOVEMBER 2, 2013
11AM TO 1PM

BALLSTON SPA ELKS LODGE
10 HAMILTON ST
BALLSTON SPA, NY 12020



Come create necklaces or bracelets in 5 easy steps.

Join us for giveaways and raffles.

Can't make it? Don't worry.
Place an order online at http://jessicawells.origamiowl.com and be sure to
select "Jill Flinton's Niemann-Pick Fundraiser Jewelry Bar" at the checkout.
or see Jill Flinton for an order form


20% of proceeds go to Niemann-Pick Disease Foundation (www.nnpdf.org)

Online orders can only be shipped to USA

Saturday, June 15, 2013

Flag Day - June 14

The History of Flag Day

The first celebration of the U.S. Flag's birthday was held in 1877 on the 100th anniversary of the Flag Resolution of 1777. ... In 1916, the anniversary of the Flag Resolution of 1777 became a nationally observed event by a proclamation by President Woodrow Wilson. However, it was not designated as National Flag Day until August 3rd, 1949, when an Act of Congress designated June 14th of each year as National Flag Day. Today, Flag Day is celebrated with parades, essay contests, ceremonies, and picnics sponsored by veterans' groups, schools, and groups like the National Flag Day foundation whose goal is to preserve the traditions, history, pride, and respect that are due the nation's symbol, Old Glory.
 
Source:  http://www.military.com/flag-day/?ESRC=sm_hol.nl


Why am I writing about this?

Well, every Flag Day, every Elks Lodge is required to have a Flag Day ceremony.  The ceremony provides a history of the flag and a tribute to what it stands for.  Here are a few pictures from the local ceremony.







After  the ceremony we had a flag retirement ceremony.

Tuesday, May 28, 2013

5 for Five - Week 21

It's a new week (and I totally missed Monday)! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button below or see my blog hop page.



FantasticallyAverage


It was an ok week, with no motivation to do much. Could it have been the really nice weather that turned really cold?

Last week's goals:
1. Read 10 more newspapers.  This should get to me about Christmas.
         Done! Right where I wanted to be.
2. Write 3 blog posts.  I'm dropping it from 4 to get my motivation back.
         No motivation this week.  I wrote one (which I really didn't write)
3. Get caught up on 3 blogs before Google Reader disappears.
         Nope!  Didn't happen.
4. Declutter the table.  Maybe if I take a picture of the before and after it will motivate me....hmmm...
         I was going to take a picture and post it, but my dear hubby had organized the mess of clutter into a few piles and got rid of the "junk" mail that had gathered.  I did get through the piles and cleared most of the rest of it off.
5. Make fresh juice in my juicer.
         Nope!  Realized I didn't have anything to put in the juicer to make juice, and didn't buy anything at the store either.


This week's goals:
1. Read 10 more newspapers.  (I read 9 newspapers on Monday, but I want to read 10 more!)  If I read what I want to read, I should be in mid-January by the end of the week.
2. Write 3 blog posts. 
3. Get caught up on a few blogs. (If I read other blogs, maybe I will get some ideas for my own posts).
4. Create separate folders for my NNPDF and Elks stuff, so I don't misplace something.
5. Making a list of clothes that are in the donation bag.

Memorial Day

The "unofficial" start of summer - the beginning of picnics and bar-b-ques.

But the day isn't just a day to kick back, relax and have fun.  There are many parades and events honoring those who have given their lives for this country.

Last year I walked in the local Memorial Day Parade with our Elks Lodge.  This year it was 40 degrees and raining, so I opted not to.  But here are some photo's of this year's parade.  My hubby has the aqua umbrella.








I saw this quote on the New York Times on Sunday:

QUOTATION OF THE DAY

"If I knew the story of every individual who went through here, I would probably be in a padded cell."
WILLIAM ZWICHAROWSKI, the Dover Port Mortuary branch chief, who prepares the remains of United States military personnel for burial.


A bit of history from the U.S. Department of Veteran's Affairs:

Three years after the Civil War ended, on May 5, 1868, the head of an organization of Union veterans — the Grand Army of the Republic (GAR) — established Decoration Day as a time for the nation to decorate the graves of the war dead with flowers. Maj. Gen. John A. Logan declared that Decoration Day should be observed on May 30. It is believed that date was chosen because flowers would be in bloom all over the country.

By the end of the 19th century, Memorial Day ceremonies were being held on May 30 throughout the nation. State legislatures passed proclamations designating the day, and the Army and Navy adopted regulations for proper observance at their facilities.

It was not until after World War I, however, that the day was expanded to honor those who have died in all American wars. In 1971, Memorial Day was declared a national holiday by an act of Congress, though it is still often called Decoration Day. It was then also placed on the last Monday in May, as were some other federal holidays.



I also found another website dedicated to explaining and educating us about Memorial Day: www.usmemorialday.org I copied the following there:

To help re-educate and remind Americans of the true meaning of Memorial Day, the "National Moment of Remembrance" resolution was passed on Dec 2000 which asks that at 3 p.m. local time, for all Americans "To voluntarily and informally observe in their own way a Moment of remembrance and respect, pausing from whatever they are doing for a moment of silence or listening to 'Taps."   The Moment of Remembrance is a step in the right direction to returning the meaning back to the day. What is needed is a full return to the original day of observance. Set aside one day out of the year for the nation to get together to remember, reflect and honor those who have given their all in service to their country.

Thursday, April 18, 2013

An honor (and lots of work) for my husband

If you go looking back through the posts on this blog, there are not many directly related to my family.  This isn't really intentional, but to us, we just live our day to day life with nothing really special.  But this is special.

As of April 1, my dear husband became the Exalted Ruler of our local Elks Lodge.  What does that mean?  Well, lots of work and lots of meetings...  His term runs until March 31, 2014.  The Exalted Ruler is the "leader" of the local lodge, similar to the Commander of a local American Legion or VFW post.

Congratulations honey!  I will be standing right by your side through this journey.



But here is a bit of background (from www.elks.org):

Elks Care, Elks Share. Are YOU an Elk?

Elks Lodges bring so much more to their communities than just a building, golf course or pool. They are places where neighbors come together, families share meals, and children grow up.

Elks invest in their communities through programs that help children grow up healthy and drug-free, by undertaking projects that address unmet need, and by honoring the service and sacrifice of our veterans.

We are...

  • A fraternal order with nearly a million members and a 141-year history.
  • A network of more than 2000 lodges in communities all over the country.
  • A generous charitable foundation that each year gives millions in scholarships, an inspiration to youth, a friend to veterans and more.

Our Mission

To inculcate the principles of Charity, Justice, Brotherly Love and Fidelity; to recognize a belief in God; to promote the welfare and enhance the happiness of its Members; to quicken the spirit of American patriotism; to cultivate good fellowship; to perpetuate itself as a fraternal organization, and to provide for its government, the Benevolent and Protective Order of Elks of the United States of America will serve the people and communities through benevolent programs, demonstrating that Elks Care and Elks Share.

Origin

The Elks organization was founded in New York City on February 16, 1868 under the name "Jolly Corks" by 15 actors, entertainers and others associated with the theater. In ensuing years, membership expanded to other professions.

Purposes

This Fraternal Order was founded "To promote and practice the four cardinal virtues of Charity, Justice, Brotherly Love and Fidelity; to promote the welfare and enhance the happiness of its members; to quicken the spirit of American Patriotism and cultivate good fellowship."

Membership

The Order is a non-political, non-sectarian and strictly American fraternity. Proposal for membership in the Order is only by invitation of a member in good standing. To be accepted as a member, one must be an American citizen, believe in God, be of good moral character and be at least 21 years old.

What We Do

The Order spends more than $80,000,000 every year for benevolent, educational and patriotic community-minded programs in such fields as benefitting physically handicapped children, sponsoring Elks National Foundation scholarships, scouting, athletic teams, veterans' works, a national "Hoop Shoot" free-throw contest involving more than 3 million children, physical and occupational therapy programs and patriotic programs.

The youth of our country have always been important to the Order. It is for this reason the Elks Drug Awareness Education Program was launched to warn primary grade students and their parents of the dangers in drug use. Additionally, every lodge observes June 14th as Flag Day, a tradition which the Elks began in 1907 and was later adopted by the Congress as an official observance.

Saturday, December 15, 2012

The Results of Dan's Dreams

It's been a week since I had my fundraiser to raise awareness and research funds for Niemann-Pick Diseases.  It was an extremely exhausting day.  I think I was more physically tired than emotionally tired.

The event started at 2pm (but I was at the Elks Lodge at 10ish to make sure I had some breakfast first!).  I started setting up around 11:30am.  This consisted of moving a few tables, setting out the awareness items, setting up the raffle and auction displays, putting out lots of information and kids crafts.  I also had to make sure there was food and non-alcoholic drinks for attendees to purchase.

Here is the hand carved wooden 2 foot bear my wonderful neighbor carved.  We auctioned this item.


In addition to the bear we also auctioned items: a signed Major League Baseball and a hand crafted bead jewelery set (earrings, necklace and bracelet).


Here is part of the raffle table:




All these folders had certificates on them that corresponded to gift certificates that had been donated.









Here are some of the awareness items:  a newsletter, and brochure on the symptoms of Niemann-Pick Type C with information about the NNPDF, awareness PERSEVERE bracelets, and Legacy of Hope cards. 
















Here are three of the four books that other parents wrote.  The fourth book was being looked at when I took this picture.  From left to right: Following After Trek, Warrior Baby, What Matters Most - Living with Young Adult Onset, and not in the picture, Three Brothers Go to the Beach.




 We even had some special visitors...another family with Niemann-Pick, Type C, the same disease Dan had.  Left to right in this picture: me, hubby, affected child, mom.  This family came from New Hampshire - about a 3 1/2 hour trip to spend a few hours with us in support.  I am very thankful they came.  Their presence made this disease "real" for many attendees.

 

All in all, we had a good afternoon.  We raised about $1,000 for the National Niemann-Pick Disease Foundation (NNPDF).  I am still making the final tally, but I think it is close to this amount.

I want to say a big THANK YOU to all my friends and family who helped along the way - by giving me suggestions, getting raffle prizes, helping that day.  I know I will forget someone if I start listing them, but I hope they know who they are.


At the end of the event, we participated in the Worldwide Candle Lighting Event, organized by The Compassionate Friends.  This event is held the second Sunday of December at 7pm local time around the world.  The goal is to have a wave of light circling the world in remembrance of all the children who have passed away from any cause at any time.  We lit a few candles and I read 7 pages of names from the NNPDF website of those lost to all forms of Niemann-Pick Disease.  In addition, we added the names of other children that I knew of locally who died recently, including two who lost their lives in a car accident just a few days before.  We had a moment of remembrance for all the children and their families. 

If anyone is interested in learning more about our story or Niemann-Pick Diseases, please use the links on the upper left side of the page (below the picture).  Other families also have websites and businesses.  Those links are on the upper right side of the page (below the picture).  If you wish to donate to the NNPDF, please use the links on the lower right part of the page.  Even if you don't have any extra cash this holiday season, you can still contribute by using Goodsearch or Common Kindness for coupons.

Thursday, December 13, 2012

Thankful Thursday

Today is a two blog hop day - Thankful Thursday and Thumpin' Thursday


SaraSherrellMomsThankfulThursday


So here is what I am thankful for this week:

1. Friends and family who came out and supported us at Dan's Fundraiser this past Sunday.

2. My husband who let me sleep all day Monday after the Fundraiser.

3. My Elks family who stepped up to help without even being asked.

4. My NPD family, some of whom sent items for the auction and raffle, and all who sent wishes for a successful event.

Saturday, November 17, 2012

Yikes! It's Saturday!

Where oh where did this week go?? And it's less than a week to Thanksgiving! 

This was one of those weeks that I wish there was more time in....

Sunday I was busy all day - from 10am to 10pm at an Elks dart tournament
Monday I needed a bit of a lazy day, but did get some things done, including an Elks meeing in the evening, but not enough.
Tuesday I was out of town, in meetings most of the day and then had my first NNPDF conference call board meeting that evening.
Wednesday I was working from home.  I always think I am more productive at home, but I really didn't feel it this week.  Oh and it was Bingo night!
Thursday was a regular work day and yet another Elks meeting in the evening.
Friday - another regular work day and another Elks function in the evening.
And now it's Saturday.  

I haven't had much time to work on my 5 for 5 goals this week, either.

Hopefully I can catch up this weekend!

Ever have one of these weeks?

Thursday, November 8, 2012

Elks Care, Elks Share

So where did the title of this blog post come from?  Well, the Elks!  Uh...the animal?  Sort of.

If you noticed on the Dan's Dreams flyer, the fundraiser is being held at an Elks Lodge and food sales are benefiting the NYS Elks Major Project.  Why there?  Because both hubby and I are members.  We joined about a year ago in order to get out into the community more.  After Dan died, they became another family.  So many of them donated food and time to us after Dan's memorial service.

So to copy from www.elks.org:

We are...

  • A fraternal order with nearly a million members and a 141-year history.
  • A network of more than 2000 lodges in communities all over the country.
  • A generous charitable foundation that each year gives millions in scholarships, an inspiration to youth, a friend to veterans and more.

Our Mission

To inculcate the principles of Charity, Justice, Brotherly Love and Fidelity; to recognize a belief in God; to promote the welfare and enhance the happiness of its Members; to quicken the spirit of American patriotism; to cultivate good fellowship; to perpetuate itself as a fraternal organization, and to provide for its government, the Benevolent and Protective Order of Elks of the United States of America will serve the people and communities through benevolent programs, demonstrating that Elks Care and Elks Share.

Origin

The Elks organization was founded in New York City on February 16, 1868 under the name "Jolly Corks" by 15 actors, entertainers and others associated with the theater. In ensuing years, membership expanded to other professions.

Purposes

This Fraternal Order was founded "To promote and practice the four cardinal virtues of Charity, Justice, Brotherly Love and Fidelity; to promote the welfare and enhance the happiness of its members; to quicken the spirit of American Patriotism and cultivate good fellowship."

Membership

The Order is a non-political, non-sectarian and strictly American fraternity. Proposal for membership in the Order is only by invitation of a member in good standing. To be accepted as a member, one must be an American citizen, believe in God, be of good moral character and be at least 21 years old.

What We Do

The Order spends more than $80,000,000 every year for benevolent, educational and patriotic community-minded programs in such fields as benefitting physically handicapped children, sponsoring Elks National Foundation scholarships, scouting, athletic teams, veterans' works, a national "Hoop Shoot" free-throw contest involving more than 3 million children, physical and occupational therapy programs and patriotic programs.

The youth of our country have always been important to the Order. It is for this reason the Elks Drug Awareness Education Program was launched to warn primary grade students and their parents of the dangers in drug use. Additionally, every lodge observes June 14th as Flag Day, a tradition which the Elks began in 1907 and was later adopted by the Congress as an official observance.