Two years ago

Two years ago, we were ending our second week in Boston at the children's hospital.  It was also when we received the news: Dan had Niemann-Pick Type C.

I think at the time we were the only ones who truly understood what that meant.  By the end of the weekend, the doctors and the nurses had started to learn about the disease.  

I spent most of that first weekend online doing research and learning about options. I met some wonderful people online and still have only met a few of them in person. 

 

In the years since, the amount of information available to families has grown and more families are now online and connecting.  It is amazing how families step up and are willing to share information and help each other.

Yes, there is still no cure. But there are treatments that are promising - not just in prolonging life but in prolonging a quality of life. 

Niemann-Pick is still a rare disease and as a rare disease doesn't get the recognition like other diseases. Please take a minute and think about all the families who have rare diseases.  If you can help them, in any way, please do so.

5 for Five - Week 25

It's a new week.  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.

This was a really bad week but it's tough for me to do much when I don't feel good.

Last week's goals:
1. Read newspapers until Feb 14.
          Ok, so I read through the 9th....
2. Call the garbage companies!
          Done! I think I will be saving about $8 a month!! And I am getting the summer months for free!
3. Write 2 more blog entries.
          Done! (Barely!)
4. Get rid of the donation clothes.
          Nope.
5. Thin out the blog list.

          Nope.  But I did use BlogLovin to read some.

Ok - 2.5 out of 5 could be worse.

This week's goals:

1. Read newspapers to Feb 20.
2. Call cable to reduce that bill since we don't watch tv that much.
3. Clean up some of the clutter that has accumulated again.
4. Tie up the loose ends of projects at work.
5. Tie up the loose ends at the Elks and the NNPDF.

It's officially summer, so I'm going to try to start the season with a clean slate.

Something to Ponder

I saw this posted by a few friends on Facebook and thought it was an interesting question to ponder.  So I apologize if you have seen this on my Facebook page....

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A Story back by popular demand ...

Grandmother says... Carrots, Eggs, or Coffee; "Which are you?"

A young woman went to her grandmother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved a new one arose.

Her grandmother took her to the kitchen. She filled three pots with water. In the first, she placed carrots, in the second she placed eggs and the last she placed ground coffee beans. She let them sit and boil without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her granddaughter, she asked, "Tell me what do you see?"

"Carrots, eggs, and coffee," she replied.

She brought her closer and asked her to feel the carrots. She did and noted that they got soft.She then asked her to take an egg and break it.

After pulling off the shell, she observed the hard-boiled egg.

Finally, she asked her to sip the coffee. The granddaughter smiled, as she tasted its rich aroma. The granddaughter then asked. "What's the point,grandmother?"

Her grandmother explained that each of these objects had faced the same adversity--boiling water--but each reacted differently.

The carrot went in strong, hard and unrelenting. However after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior. But, after sitting through the boiling water, its inside became hardened.

The ground coffee beans were unique, however. After they were in the boiling water they had changed the water.

"Which are you?" she asked her granddaughter.

"When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?"

Think of this: Which am I?

Am I the carrot that seems strong, but with pain and adversity, do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff?

Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and a hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you.

When the hours are the darkest and trials are their greatest do you elevate to another level?

~Author Unknown

A week or so after Dan's services, we received two plants.  One is a Peace Lily that came from my friend Alison.  The other is a Gardenia that came from the local chapter of the Association of Government Accountants.  I was active in this chapter for many years and reduced my involvement after Dan was born.

I have never been good with flowers, especially indoor plants.  I usually forget to water them and they die.  That and our cat has a tendency to eat things, so I've always been worried that she will eat plants.

When the Peace Lily arrived, it had two white flowers that were open.  The Gardenia had buds, but they weren't open.  We moved the plants around the house several times in order to find the ideal place for the plants for the right amount of light and heat.  But the buds on the Gardenia died without opening.  The Lily flowers eventually died too.  Both plants had lots of green leaves, but no buds.

We repotted the plants into bigger pots, gave them some fertilizer sticks and finally figured out a watering schedule.

Finally, in mid June, we had buds on both plants.  And the buds opened!  And both were white!

According to www.flowermeaning.org:

White Flowers

Black and white are highly symbolic, yet technically neither are actually colors. White reflects all colors whereas black absorbs all light. As opposites they contrast sharply - where white reveals, black conceals. Both have strong religious connotations.

WHITE FLOWERS

White signifies purity and perfection and can represent a successful beginning. It is no accident that virgins and brides wear white. White symbolizes wholeness, openness, truth and kindness.

WHITE FLOWERS

Always popular in spring bouquets, while flowers are strongly featured in bridal work and funeral pieces. White daisies symbolize loyalty in love and white magnolias evoke feelings of the Deep South.

SPATIAL EFFECTS OF WHITE FLOWERS

White enlarges. Whereas too much white is clinical, white becomes warmer when mixed with red or yellow.
When we talk about white color in general then image of peace process aimed at bringing alround calm come to the mind but white flower depicts different meaning. White color in context of flowers means elements of innocence, humility, and reverence, white flowers evoke simple beauty.

Whether they take their shape as the luxurious, silk petals of fragrant gardenias, the small, white bells of a lily of the valley, or the quiet drama of a dozen white roses, fresh floral arrangement dominated by white blossoms conveys modesty and elegance. Never forget the power of white flowers in generating a soothing image of your memorable moment’s surroundings when you are celebrating them.

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Not only are my friends and colleagues wonderful by giving us the recurring gift of blooming flowers, they also chose white flowers.  White is always peaceful and pure and is a constant reminder of the innocence of a child's life.

Thank you seems so inadequate.

It has taken me forever to get pictures of the flowers, so this post was delayed by over a year.  But the pictures are here:

Gardenia plant:

Peace Lilly:

5 for Five - Week 24

It's a new week.  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.

This was a really bad week but it's tough for me to do much when I don't feel good.

Last week's goals:

1. Read 10 more newspapers. I am on a roll now and hope to keep it going.

         Did this!  Into February

2. Find a new garbage company (and one that hopefully is cheaper!) 

         Nope.  It's only 2 phone calls, but finding time to do them during business hours....

3. Clean up the list of blogs that I follow...have to do this every now and then

          Nope.  But I got them all into BlogLovin so I can read them on my cell phone now.  Hopefully that will make it easier to clean up the list.

4. Write more than this blog entry this week.

          Did this!

5. Making a list of clothes that are in the donation bag (bonus points if I drop the bag off this week).

           Made the list. 

Most of these will be repeats, but hopefully will actually get done this week!

This week's goals:

1. Read newspapers until Feb 14.
2. Call the garbage companies!
3. Write 2 more blog entries.
4. Get rid of the donation clothes.
5. Thin out the blog list.

Father's Day

Don't cry for Me Daddy

Don't cry for me Daddy, 
I'm right here. 
Although you can't see me I see your tears. 
I visit you often, 
I go to work with you each day, 
And when it's time for you to close your eyes, 
On your pillow is where I lay. 
I hold your hand & stroke your hair, 
And whisper in your ear. 
If you're sad today Daddy, 
Remember, I am here. 
God took me home. 
This we know is true. 
But you'll always be My Daddy 
Even though I'm not with you. 
We will never be apart,
For every time you think of me, 
Please know I'm in your Heart.......... 



Father's Day 2011 - at Boston Children's

 

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.

Time Off for Grief

I did a Google search for websites related to Dads and grief. I knew there had to be some out there.  The first site I found was Grieving Dads Project.

The second item on the blog was a link to an opinion piece written by a grieving dad.

I usually don't get into politics here, as it can become a heated discussion, with strong views on each side.

But this article is important, because it affects all of us - those who are grieving and those who aren't. Is a week really enough time to adjust to the loss of a child?

The first item on the list is a beautiful poem to Hallmark, which I have seen in other places too:

Dear Mr. Hallmark ….. One More Time

Hello there Mr. Hallmark man,

I wrote to you in May

To ask that words of love be shared

With my mom on Mother’s Day.

Just as there is no card for Mom

To let her know I care,

There is no card for my dad, too,

And I have so much to share.

It’s very hard for my loving dad

To know that I’m okay.

To protect me was his job, he feels,

So he thinks he failed some way.

Although I had to leave this world,

While still considered young,

There is no way he ever failed—

There’s no more he could have done.

My dad he tends to question

Those things he cannot see.

I always send him little signs

To say, “Hey, Dad, it’s me!”

I hear him crying in the car,

The shower hides his tears.

He feels he has to be so strong

For those he holds so dear.

My dad he often gets so mad

At what became of me.

He wants so much to understand,

He says, “How could this be?”

I somehow need to let him know,

Though impossible it seems—

For him to live and laugh again

Will fulfill so many dreams.

The card I need to send right now

To a dad as great as mine,

Will thank him for the love he gave

Throughout my brief lifetime.

He’s still the one that I call Dad,

Our bond’s forever strong,

‘Cuz even though he can’t see me,

Our love lives on and on.

Please help me find a way

To tell my dad that when

It comes his time to leave the earth

I’ll be waiting there for him.

And also, Mr. Hallmark man,

Please help him to believe,

That nothing will ever change the fact

That my dad he’ll always be.

Dads Hurt Too

I found this on My Special Angel: For Loved Ones Lost

Men and Grief

Leading up to Father's Day I want to post some items about how dads grieve. 

I found this on The Compassionate Friends Facebook page:

This poem is called "Men & Grief."

It must be very difficult
To be a man in grief,
Since "men don't cry" and "men are strong"
No tears can bring relief.
It must be very difficult
To stand up to the test
And field calls and visitors
So she can get some rest.
They always ask if she's all right
And what she's going through
But seldom take his hand and ask,
"My friend, but how are you?"
He hears her crying in the night
And thinks his heart will break
And dries her tears and comforts her
But "stays strong" for her sake.
It must be very difficult
To start each day anew
And try to be so very brave ~
He lost his baby too. . .

Author: Eileen Knight Hagemeister
to her son-in-law after his baby girl was born still

5 for Five - Week 23

It's a new week.  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.

 

This was a really bad week but it's tough for me to do much when I don't feel good.

Last week's goals:

1. Read 10 more newspapers. I am on a roll now and hope to keep it going.

          I'm pretty sure I did this, although I didn't count them.  But the pile is quite a bit smaller, so ....

2. Find a new garbage company (and one that hopefully is cheaper!)

           Nope.  This cold just made for some bad days and I'm not sure if I have a voice or not.  So it goes onto next week's list.

3. Clean up the list of blogs that I follow...have to do this every now and then

           Nope.  See #2 above.

4. Get rid of this cold! (Ok, so I may not have control over this one, but at least if I feel better I will count it as a success!)

            I finally started to feel better Friday night, but I'm still coughing and my ears are still stuffed up.  But I'm not sleeping all day, so I think I am on the mend.  I hate summer colds!

5. Making a list of clothes that are in the donation bag (bonus points if I drop the bag off this week).

            Nope.  See #2 above.

Most of these will be repeats, but hopefully will actually get done this week!

This week's goals:

1. Read 10 more newspapers. I am on a roll now and hope to keep it going.

2. Find a new garbage company (and one that hopefully is cheaper!)

3. Clean up the list of blogs that I follow...have to do this every now and then

4. Write more than this blog entry this week.

5. Making a list of clothes that are in the donation bag (bonus points if I drop the bag off this week).

5 for Five - Week 22

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.

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.  (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.

        Done!  I read more than 10.  Reading was made easier by the fact I came up with a summer cold so didn't feel like doing much.

2. Write 3 blog posts. 

        I'm counting my Memorial Day post.  I also had my wild weather and my coupons

3. Get caught up on a few blogs. (If I read other blogs, maybe I will get some ideas for my own posts).

        I got caught  up on At My Counter and Chevron & Sweet Tea

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.

Three out of five isn't that bad!

This week's goals:

1. Read 10 more newspapers. I am on a roll now and hope to keep it going.

2. Find a new garbage company (and one that hopefully is cheaper!)

3. Clean up the list of blogs that I follow...have to do this every now and then

4. Get rid of this cold! (Ok, so I may not have control over this one, but at least if I feel better I will count it as a success!)

5. Making a list of clothes that are in the donation bag (bonus points if I drop the bag off this week).

Coupon Sunday

In some form, I have always used coupons or savings certificates or sale/clearance racks.  I always found most items over priced and I never needed to have the "hot" item right when it came out.

After Dan was born and we went to a one-income household, I started focusing more on my coupons.  Some weeks were better than others with savings and I would go grocery shopping around my paycheck.

Then Dan got sick and we had doctor visits and traveling expenses and medication costs, etc.  I searched online for a coupon blog focusing on the big regional grocery store in my area.  I found I Am THAT Lady.

She is a few hours away from me, so some of the coupons aren't the same (especially since regional competition can drive sales and coupons), but she provided a starting point for me to make better use of my coupons.

So I would take some time on a Sunday or Monday and go through the coupons that came in the Sunday newspaper.  I would clip the ones I would use and toss the others.  Over time I realized that saving the ones that I didn't think I would use would come in handy - sometimes a few days later, other times a few weeks later.

I've met Lauren a few times and each time I learn something from her!  The first time we met was a few months before Dan died.  It was an informal gathering of a few people who follow her on Facebook.  I had just started a coupon binder (it was an old photo book) and she provided me with some good advice.  The last time we met, a few months after Dan died, she was hosting a "beginner's" coupon seminar.  Although she told me the information would be way to basic for me, I went anyway - you never know what you can learn or how you can help others!  It was at that seminar that I purchased a new coupon binder that made couponing easier for me.

I also realized that shopping every week (at least for those things that we use that are good deals that week) is probably a good thing.  I still haven't ventured far from the grocery store (occasionally I try my hand at a drug store) but I know that if I need to, I will have lots of help to make that leap.  And by shopping for the deals that week, I was actually able to save some money.

Along the way, I have realized a few things.  With the exception of milk, we didn't have to go grocery shopping for 2-3 months after Dan died.  We had stocked up on enough items that we were able to have 2 or 3 meals a day (plus snacks).  Ok, so there were times when dinner was a bag of chips, but at least we were eating something right?

We always look on the grocery "clearance" sales.  Just because the Ritz crackers are football shaped and it is past football season doesn't mean they are expired (but they are probably 50% off!).  The meat with the price reduction tags on it?  Sold! It needs to be sold by that day, but not necessarily consumed.  So off to the freezer it goes!  Store brands may not be cheaper if you combine a sale and a coupon (or two!)  Corned beef may not be cheapest in March for St. Patrick's Day.  Sales go in cycles.  Stock up with enough to get you to the next cycle.

I have since started following another coupon blogger The $aratoga $aver (who is a little closer to home) and joined a Facebook group of local couponers.  The people in the group swap (not sell!) coupons and post questions or deals they have seen.


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