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.

Friday, May 31, 2013

Wild Weather

In the past 10 days we have had some wild, wild weather.

One week before Memorial Day, we had some severe thunderstorms overnight.  These storms woke us in the middle of the night with a large clap of thunder and a bright streak of lightening.  The lightening struck a tree outside the house and traveled through an electric conduit and popped one breaker, popped a few GFI outlets in the house, sizzled our carbon monoxide/propane sensor and sizzled our cordless telephone base.  Overall, minimal damage considering what could have happened.

The next day was bright, sunny, and summer hot!

By Memorial Day weekend, it was rainy, damp, and cold for May. You can see this from my post here.

About 3 hours north of me in the Adirondack Mountains one of the ski places had almost 3 feet of snow!




Then on Wednesday night we had 2 tornadoes come through near where I live. They missed us, but we did hear and see some of the thunderstorms that caused the tornadoes.

And today, it's expected to be about 90 degrees.









Looks like Mother Nature can't make up her mind.

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.

Wednesday, May 22, 2013

Remembering the Children

One of my daily blog reads, Thriving - the pediatric health blog at Children's Hospital Boston - had a wonderful post about remembering the children who have been lost too soon.

I am copying it here, because I don't think I can say it any better.

A Time to Remember–Together

by Claire McCarthy on May 16, 2013

Dr. Claire McCarthy is a primary care physician and the Medical Communications Editor at Boston Children’s Hospital. Along with her blogs here on Thriving, you can find her at the Huffington Post and Boston.com. Follow her on Twitter @drClaire.


I remember the first time I saw my son’s name on his gravestone. I felt like I’d been punched in the stomach.

This was the name we had chosen for a baby, a name we expected to say as we called him to dinner, cheered him at soccer games or yelled at him for breaking curfew. We expected to see it on Christmas cards, report cards or a wedding invitation. We did not expect to see it on a gravestone.

Our names are so important, so precious to us. Every parent has a story of how they chose their child’s name; from the moment they are born, the name becomes part of them—it becomes them.

I think that’s why, if we lose our child, the name has such power over us.

Every year, Boston Children’s holds a memorial service for our patients who have died. It’s called “A Time to Remember,” and it’s really lovely: there are prayers, poems, speeches and songs. And then the name of each child who has died is said out loud as a flower is laid in a basket. Some of the names are said by family members, some are read by doctors as hospital staff lays flowers in the basket. But each name is said out loud.

It’s overwhelming. And beautiful.

This year, I asked a family if I could say their daughter’s name. They aren’t going to be there. Yes, said the father, you can. So I will say her name and remember her smile, a smile that won everyone’s heart.

That’s the thing: names are full of memories. We say a name and we remember the child learning to say it, we remember calling it across a playground, singing it in a song, writing it on forms, seeing it scrawled across a card. We hear a name and we are filled with stories, with moments that made us happy, angry, frustrated, sad, bewildered, humbled, awed. We hear a name and the images and smells and sounds come rushing in.

When a child dies, we don’t say the name much anymore. Which is understandable—they aren’t there to call to, and it can be painful. But that’s why events like the memorial service are so crucial: we need to say those names, and hear them.

And we need to say them and hear them together. Because that’s how we remember together. That’s how we honor these lives and all they gave us. That’s how we let each other know that the connections between us matter, and that we will never forget.

To my colleagues: please come. Hear the names. See the families. It makes a difference—for them, and for you.

A Time to Remember will be held on May 22, at the Joseph B. Martin Conference Center at Harvard Medical School, 77 Avenue Louis Pasteur. The doors open at 6 p.m., with the service from 6:30 to 7:30 p.m., and reception immediately following. All are welcome.

Monday, May 20, 2013

5 for Five - Week 20

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.



FantasticallyAverage


It was a pretty bad week (1/5), with no real excuses either...oh well.  Better luck next week.

Last week's goals:
1. Read 10 more newspapers.  Hopefully I will be in mid-December by the time this week is done.
         Done! 
2. Write 4 blog posts.
         Wrote 1 here (a tribute to an NPD angel).  I really have to write them and schedule them when I have the ideas....
3. Get caught up on 3 blogs.  I want to use Google Reader before I am forced to find a new reader.  Does anyone have any ideas for another reader?
         Nope, not even close - didn't even open Reader.
4. Finish decluttering (although it is a never-ending process!)
         Did a little, but not nearly enought
5. Do some ironing.  One of my dreaded tasks.
         Didn't happen either.  But the main reason this was on the list was due to an item that we thought my hubby needed for this past weekend, which it turned out he didn't need...so no need to iron!  I still have a few shirts that could probably use some touch ups, but it isn't "pressing" now (haha)



This week's goals:
1. Read 10 more newspapers.  This should get to me about Christmas.
2. Write 3 blog posts.  I'm dropping it from 4 to get my motivation back.
3. Get caught up on 3 blogs before Google Reader disappears.
4. Declutter the table.  Maybe if I take a picture of the before and after it will motivate me....hmmm...
5. Make fresh juice in my juicer.

Wednesday, May 15, 2013

A birthday book

In memory and honor of Wylder James Laffoon's 4th birthday today, his mom Shannon published a second book titled Little Wish. This is a hard back 30 page book that teaches children that "everyday holds a possibility of a miracle …. just do a little wishful thinking."

She is selling these for $12.95 at her website http://shoptogive.wylderjames.com/

Please take a minute and stop by her website and read about her little warrior and the good he has helped her do. Wylder's blog can be reached here: http://wylderjames.com/archives/category/uncategorized


Here are some photos I took last year when we released balloons in honor of Wylder's 3rd birthday.



Monday, May 13, 2013

5 for Five - Week 19

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.



FantasticallyAverage




Last week's goals:
1. Read 10 newspapers.
        Done! I'm into December 2012 now in my consecutive reading.
2. Write 4 blog posts.
       Wrote 4!  Enjoying being outside, Dandelions, In Memory, Angel Moms
3. Get caught up on 2 blogs.
4. Do some decluttering around the house.
     Nope - just didn't get the motivation.
5. Get outside and enjoy the nice weather!
       Done! See the blog post in #2 above.

4 of 5 isn't too bad
This week's goals:
1. Read 10 more newspapers.  Hopefully I will be in mid-December by the time this week is done.
2. Write 4 blog posts.
3. Get caught up on 3 blogs.  I want to use Google Reader before I am forced to find a new reader.  Does anyone have any ideas for another reader?
4. Finish decluttering (although it is a never-ending process!)
5. Do some ironing.  One of my dreaded tasks.

Sunday, May 12, 2013

For the Mothers of Angels

This week The Compassionate Friends posted images on their Facebook page in tribute of all those mothers who have lost a child.  I have copied these images here:













Saturday, May 11, 2013

18 months and 7 years

About 7 years ago I found out I was pregnant.  We were in the middle of renovating the house we had just purchased and had a bunch of things we wanted to do.  So we quickly shifted plans and decided what projects became a priority (the nursery!) and which ones could wait (the kitchen!)



Little did any of us know that a short 5 1/2 years later we would have to unexpectedly say goodbye.


This is my second Mother's Day without my baby and I think I feel this one more.  That first year you just kind of live and get through...the second year you actually realize what you are feeling.

There are so many events for mother's - from free food at restaurants to free activities to you name it.  But many times in order to take advantage of these things you need to have your child with you.  How do you explain that "yes, I am a mom", and "yes, my son is with me", but "no, you can't see him" and "no, he isn't in the military" (which seems to be the exception to having your child with you).  How do you explain that your child is dead but you will always be his mother? 

Many people just don't understand, although that is slowly changing.  The death of a child shouldn't be a taboo subject, a "skeleton in the closet".  I'm not saying it should be celebrated, but an acknowledgment and maybe some events specifically for moms of angels would be nice.

Friday, May 10, 2013

Yellow flowers

Are these flowers or weeds?  I guess it depends upon your point of view.

From ehow.com: "The dandelion is considered a weed, a flower, or a vegetable depending on your point of view. Dandelions are capable of growing in great numbers and they are a sure sign of Spring throughout their locations. Dandelions go by other names such as lion's tooth and priest's crown and although homeowners desire to rid their lawn of them they have many benefits and are edible."





Dan used to love playing with the yellow flowers every spring.  Although this picture doesn't show him playing with the flowers, he is playing near them.

Thursday, May 9, 2013

Blog Hop Honor

Today I am the "Featured Read" on the #Thumping Thursdays Blog Hop.  This Blog Hop is hosted by Karina at Mom in the USA and Diana at Nanny to Mommy.  Please show these wonderful bloggers (and the others who have linked up) some love by stopping into their pages.

Here is the post:

Welcome back to another week of the 
Thumping Thursdays Blog Hop
Happy Mother's Day


This week's Featured Read is:
 
Jill @And Life Goes On


Jill writes her blog in honor of her late son, Daniel.
Everyone make sure to drop by and say, "Hi"
and show your support.
 
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Nanny to Mommy
Follow via GFC

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