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, November 30, 2012

Christmas Trees

I grew up with an artificial ("fake") Christmas tree.  The living room had 20-25 foot ceilings, so we purchased an 8-10 foot tree.  We always had a good time decorating it and always laughed at stringing the lights. (If you don't laugh, you probably scream and cry!)

When I moved into my apartment I purchased a little 6 foot artificial tree.  I tried to have a bunch of friends over to decorate it and have a party.  I would sleep on the couch occassionally, with the lights from the tree as the only source of light.

When we moved into the house over 10 years ago, we set up my little 6 foot tree.  It just didn't seem right.  So hubby and I took off early one morning and found a real Christmas tree.  We had to tie it to the curtain rod because we could not get it to stand up straight!  We tried everything! Cutting the bottom in different directions, using levelers on the tree stand...it didn't matter...that tree was not going to stand up straight.

My step sons were surprised when they woke that morning to find a real tree and the four of us had a great day decorating it (and laughing because it wouldn't stay straight!)

We had real trees a few more years.  Sometimes it was just the two of us decorating, other times the boys would come over.  However, we could always count on the cat to help us (loose things!).

Then we moved again and Dan was born.  If it wasn't for my oldest step-son, we would not have had a Christmas tree.  You see, Dan was due between Christmas and New Years, but decided to make an appearance in early December - well before we had pulled out the Christmas decorations.  Since he was several weeks early, he had to stay in the NICU.  One Saturday morning as we were getting ready to head to the hospital, my step-son stops over and tells us he will decorate the house for Christmas for us, if we would tell him where everything was.

We came home from the hospital to a set up and lighted fake tree, hung stockings and random other Christmas items scattered throughout the house.  It was an absolutely wonderful present to us - and one less thing we had to think about.  Together we put ornaments on the tree and had some hot chocolate and enjoyed the company.

Soon thereafter we purchased a multi-colored pre-lit fake Christmas tree.  We didn't know how Dan would react to the tree, and we didn't want to risk him hurting himself on a real one (eating or poking himself with a pine needle or something else).

Since his birthday was in early December, I always wanted to make sure it wasn't lost in the hecticness of the holidays.  I would not permit our tree to go up (or any Christmas decorations displayed) until about a week after his birthday.

When we found out Dan's diagnosis, we decided that we were going to get a real tree for him last year for Christmas.  Let him enjoy the fresh pine smell, touch the prickly needles...everything.

Unfortunately, he never had a chance to experience it.  And we had no real desire to do anything Christmas-y.  So we pulled the pre-lit tree out of the bag and plugged it in.  Once.  No stockings, no nativity scene, no ornaments, no decorations.  I don't even think we wrapped Christmas presents last year.

So what about this year?  Truthfully, we haven't decided yet.  But I will let you know when I do!

Bloggers for Christmas

Thursday, November 29, 2012

Jewish Proverb

The following proverb was in an email I received this morning:

"I ask not for a lighter burden, but for broader shoulders."
--Jewish proverb

It made me think.  How much do each of us burden ourselves with stuff that we really don't need to?  Do we worry about things that are outside of our control?  Are we expected to carry all our burdens?

From the Dictionary at www.reference.com:

as a noun:
1. that which is carried; load: a horse's burden of rider and pack. 
2. that which is borne with difficulty; obligation; onus: the burden of leadership. 
3. Nautical .
  a. the weight of a ship's cargo.
  b. the carrying capacity of a ship.
4. Mining.  overburden
5. Metallurgy . the minerals charged into a blast furnace or steelmaking furnace.
6. Accounting.  overhead

as a verb (used with object):
7. to load heavily.
8. to load oppressively; trouble.

We all have stuff we carry (definition 1): backpacks, purses, computers, phones, etc.
We all have obligations (definition 2): work, school, etc.

What do we do that we feel is a burden that is not really part of the definition?  Can you shift some of the burden to others?

I admit, I have never been a great cook.  I can make some things, but I need a recipe and very rarely will I come up with something good to eat without one.  As a mother, as a wife, the societal obligation was that I would cook for my family.  Well, we would probably starve... this is an obligation I have shared with my husband (especially because he is the better cook!).

Have you volunteered to help set up monthly meetings for a group?  Do you feel overwhelmed with finding a location and getting food/drinks, etc?  Well, ask for help!

Do you do things to "keep up with the neighbors?"  Their kid plays sports and has dance lessons and gets music lessons.  Did you sign your kid up for all those things too and now you complain about having to drive them all over the place?  See if you can car-pool.  Ask your kid what interests them the least and see if you can drop that.

(And yes, I know that this entire post is the exact opposite of the sentiment in the proverb above.)


Sorry for the thought-provoking post today...

on to something a little lighter....
It's Thumpin' Thursday!  Follow along at this blog hop: 

There are usually about 100 or so blogs that link up, ranging from couponing, to personal websites, to DIY projects.....and the list goes on.  Check out a few - you never know what you may find!

Wednesday, November 28, 2012

A public service announcement for my blogger friends...

I've had this happen to me when some people comment on my posts, so I wanted to pass it along as a public service announcement to other bloggers....

I didn't find the setting, but I have also changed to the Google+ profile instead of keeping my old Blogger profile.

Are You A No-Reply Blogger??

This post does an incredible job of explaining it and how to fix it.

Tuesday, November 27, 2012

I won the Lottery!!!


Ok, so I've one a dollar or two on some lottery tickets, but I have never been a real big winner.

But it doesn't mean that I don't dream about what I would do if I did win the lottery.

So here is what I would do:

1. Pay off all my bills!
2. Set up some sort of annuity payout so I get a steady stream of income but don't have access to blow it all.
3. Set up a foundation to help other families with Niemann-Pick Disease to cover the costs of treatment, since most insurances don't cover it.
4. Travel the country in an RV.
5. Cruise around the world.

Obviously the more I win, the further down the list I can go.

What would you do if you won the lottery?

Monday, November 26, 2012

5 for 5 Time

It's Monday! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left.

Last week's goals:

1. Plaster Facebook/LinkedIn/Google with Dan's Dream's Flyer.   
    LinkedIn messages and posts done on 11/23.  Google done on 11/24.
2. Enjoy my 20th High School Reunion (and take a bunch of pictures!) 
    Will write about this later this week.
3. Read 10 newspapers.  I read 4.
4. Finish writing my thank you notes from a few weeks ago. (I was 85% done! Hopefully I can get the other 15% done this week!)  Nope! I thought about it, but never picked them up.
5. Write the opinion letters to the newspapers. (Let's try this one again!) I have the ideas, but never got them to computer screen....

So 2.5 out of 5....it could be worse I guess....

And now, for this week's goals:

1. More awareness activites for Dan's Fundraiser 
(if anyone is interested in volunteering to help or donating something, please let me know!)
Feel free to share the Dan's Dreams blog post on your networks too!

2. Read 10 newspapers.  (I'm sticking with this one!!)

3. Get 20 minutes of exercise two times this week

4. Make fresh juice at least once this week.

5. Cook a meal by myself for both of us.

Yes, some of these are repeats, but I want to start making them part of a bigger pattern of consistancy in my life.

So, does anyone have any goals they are willing to share?

Sunday, November 25, 2012

Christmas Gifts

A few weeks ago, a mother with a young teen affected by Niemann Pick Disease sent a question to other families:

What do you get your child for Christmas when they have trouble playing with toys and have no real interests other than watching tv?

For those who don't understand the question....

Niemann Pick Disease slowly robs those affected with all their abilities.  In most cases, a child progressed through the developmental milestones fairly normally for several (or many) years.  And then the slow deterioration started.  The child starts to lose the ability to walk, talk, eat, etc.  It doesn't happen overnight, but is a gradual process.  Eventually, most children are wheelchair or bed bound, unable to feed themselves, may be blind, and may not know their family.

Some suggestions included:
bean bag chair
character clothes shoes
ceiling decorations
hanging mobiles
remote control toys (with big controls)

What would you chose to get this child for Christmas?

Saturday, November 24, 2012


As you are reading this, I am on my way to my hometown (about a 3 hour drive) to go to my 20th high school class reunion.  Out of 145 classmates, we will have between 40-50 people (including spouses).  Some of us have moved to far-flung places, others are spending time with family over the holiday weekend.

I never thought about going to either my high school or college reunions...it just wasn't something that interested me.  I had a few friends in school, and some I still continue to talk to and consider very good friends.  But for the most part, I did my own thing when I was in school and didn't really care what other people thought.

In 20 years, we have lost 2 classmates.  Both under age 40 (as all our classmates are).

I don't know what to expect, but I hope to have a good time catching up with lost friends and seeing some teachers that I have missed.  Moving 3 hours away made it difficult to keep up with everyone.

Who else has gone to a high school reunion?

Friday, November 23, 2012

I'm Thankful

I didn't do the "Thankful Days" this month.  I think putting the most important ones here as today is more appropriate for me.

1. I'm thankful for the difficulties in my life, for it helps me grow.
2. I'm thankful for my son, even though he is no longer here.  He taught me more than I ever could have expected.
3. I'm thankful for my friends and family, both in real life and online.
4. I'm thankful for my husband - my rock - my love.
5. I'm thankful for the opportunity to spread awareness of Niemann-Pick Diseases.

On a slightly different note, there are so many new followers!  I'm thankful for you too, and sticking with me through this journey.  So, could you please leave me a comment with how you found me and how you are following this blog?

Bloggers for Christmas

Thursday, November 22, 2012

Wednesday, November 21, 2012

NPD is a rare disease

Following up from yesterday's post on Rare Diseases....

Niemann-Pick Disease is considered a rare disease.

Here are some of the stories of Niemann-Pick affected children:

Warrior Baby

Eliza and Michal



Joseph (part 1, part 2)

Addi and Cassi (here, here, here, here)

There are many more on the Family Blogs + Websites link

Tuesday, November 20, 2012

Rare Diseases

Did you know?  (Compliments of The Global Genes Project)

Here are a few statistics and facts to illustrate the breadth of the rare disease problem worldwide.
  • There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
  • 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
  • Similar to the United States, Europe has approximately 30 million people living with rare diseases. It is estimated that 350 million people worldwide suffer from rare diseases
  • If all of the people with rare diseases lived in one country,  it would be the world’s 3rd most populous country
  • In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease
  • 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear
  • Approximately 50% of the people affected by rare diseases are children
  • 30% of children with rare disease will not live to see their 5th birthday
  • Rare diseases are responsible for 35% of deaths in the first year of life
  • The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases
  • According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment
  • During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined
  • According to the National Institutes of Health Office of Rare Disease Research, approximately 6% of the inquiries made to the Genetic and Rare Disease Information Center (GARD) are in reference to an undiagnosed disease
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

Monday, November 19, 2012

Thanksgiving 5 for 5

This is going so well, I might as well continue it!  That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left.

Last weeks goals:

1. Write opinion letters to the 3 local newspapers.  Didn't get this done.
2. Cook one homemade meal this week.  Sort of.  Hubby and I together put together dinner using this Kraft meal starter with boneless pork ribs.  These are easy to use...open the bag, mix the contents, get your meat wet so the mixture sticks (using water or egg), put the meat in the bag to coat, put on a baking sheet and bake.  There are different flavors too.

3. Read 10 newspapers.  Didn't even get this one started.

4. Organize my coupons. - With some help from my hubby, got this done!

5. Exercise 20 minutes two times this week. - Total fail! But hubby didn't feel good most of the week and I must have caught it near the end of the week.

Yeah, this was a pretty bad week (1.5/5).

This week's goals:

1. Plaster Facebook/LinkedIn/Google with Dan's Dream's Flyer.

2. Enjoy my 20th High School Reunion (and take a bunch of pictures!)
     When some classmates contacted me over a year ago about helping find classmates (since I live more than 3 hours away from my hometown), I really didn't know if I was going to make it to the reunion because Dan was just starting to get real sick.  I didn't know if he would be able to travel and I wasn't going to go that far away in case something happened.  I didn't know if I felt comfortable leaving him with someone else overnight.  But now, I'm actually looking forward to going.

3. Read 10 newspapers.

4. Finish writing my thank you notes from a few weeks ago. (I was 85% done! Hopefully I can get the other 15% done this week!)

5. Write the opinion letters to the newspapers. (Let's try this one again!)

Sunday, November 18, 2012

The Joy of Jacob: A Celebration of Jacob's Life

The Joy of Jacob: A Celebration of Jacob's Life:
Please join us as we celebrate the life of the strongest and most inspiring little man, our sweet angel Jacob.

Tuesday, November 20th, 2012

Celebration of Life Memorial -- 10:30 am

Hope Center
2275 Morello Avenue
Pleasant Hill, CA 94523
* Corner of Taylor Blvd. and Morello Ave.
(925) 685-4673

All family and friends are welcome. Reception immediately following at the same location.

Private Graveside Burial - Time to be determined 
Family only

Queen of Heaven Cemetery - Holy Innocents area
1965 Reliez Valley Road
Lafayette, CA 94549

In lieu of flowers, please consider making a donation to the National Niemann-Pick Disease Foundation in memory of Jacob Lee Brooks.  Click here to donate.

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 15, 2012

The circle of life

The theme continues....

I just received word that sweet Jacob Brooks lost his fight today from Niemann-Pick Disease, Type A. Jacob was 2 years old.

Jacob's mom, Sarah, is due any day now with a baby girl. I know Jacob's spirit will be present in his sister.

To learn more about Type A, go here.

To read more about Jacob's story, see Sarah's blog here.

Helping Kids Cope with Loss

This wasn't my planned post for today, but it seems to fit this week's theme....

Children face loss differently than adults.  As adults you realize that a parent or aunt or friend is dead and they aren't coming back.  But how do you tell  your kid that their uncle or grandparent is gone forever?

I read a blog post from the Children's Hospital Boston Vector blog yesterday.  The two paragraphs that resonated with me were:

We talked as a family about Hedgie and why he was special—how soft he was, how he was small enough to fit in a pocket, how you could play with him like a puppet. We talked about the sadness Owen was feeling. How loss and the emotions that come with it are normal, and that by remembering Hedgie we could keep him real in our memories. ...
As my wife points out, each of us copes with things in our own way. Zach, for instance, is like her: they wear their emotions on their sleeves. Owen is more like me: we tend to work things out quietly on the inside.

Granted the blog post was about a child losing a stuffed animal, but to the child it was a big deal.

As adults, how you react to death and loss also helps your kids.  I'm not saying to never cry or cry every day.  I'm not saying that women are more emotional than guys.  But by sharing your loss with your child, and some (not necessarily all) of the emotions that go with it, I bet you will feel better and your child will understand more than you think.

Some more words of wisdom, from another mother who has lost a child:
See, that’s the real challenge after losing a child: moving forward. It’s almost impossible to envision in that moment of loss; how can life continue after something so horrible? But life does continue, whether we like it or not. There are chores to do and bills to pay; morning comes, again and again. So you pick yourself up and you live, but you are never the same.

At first, we are different because of our raw sadness. But over time, the sadness moves from our skin into our bones. It becomes less visible, but no less who we are. It changes into a wisdom, one we’d give up in a heartbeat to have our child back. We who have lost children understand life’s fragility and beauty. We who have lost children understand that so many things just aren’t important. All that is important is those we love. All that is important is each other. Nothing else.



Wednesday, November 14, 2012

So how did I do?

Last weekend was an emotional weekend for me.

One year ago on Nov 10 was the last time I kissed my son good night.  It was the last time I hugged him when I put him to bed.  It was the last time I saw his beautiful blue eyes and his big full grin.  It was the last time I heard him cry or moan.

One year ago on Nov 11, very early in the morning, he died.  There is no easy way to say that.  We knew he was going to die at some point, early in his life.  But all the doctors and we thought he had at least a few more years.

One year ago on Nov 12 I was in Wal-mart looking at picture frames to find a way to capture my Dan's life.  We were surrounded by family, but felt alone.

One year ago on Nov 13 we had Dan's services.  We made a personal decision to not leave him alone.  One year later, he is still wrapped in a blanket on our table.

Life goes on...however much we don't think it should, or don't want it to.  I went back to work in early January.  Dan's bedroom hasn't been touched, his toys are clustered in the extra spare room.  It's still way to painful to go through them.  I can walk in either room and sit, but the tears start.  I miss my baby, I miss him every day.

So what did we do this weekend? 

Saturday my parents came over with a beautiful butterfly.  Hubby did some repair work at the Elks lodge.  I worked on Dan's fundraiser and we went grocery shopping.

Sunday we went to the monthly breakfast the local Elks lodge has.  We went the morning of Dan's services too.  Then we went to a dart tournament.  Hubby throws American darts at the Elks lodge and several local lodges have tournaments for prizes.  I was fine with going, even though it marked one year.  It kept us busy and a bit distracted.

Monday I took the dog to the vet to get her nails trimmed and then worked on Dan's fundraiser.

Tuesday I went to work and drove 2 1/2 hours each way to another office for a few meetings.

Just because one year later we did things that were "routine", doesn't mean they are "routine".  We all probably would have gone grocery shopping on Saturday.  We all may have still gone for breakfast on Sunday, but hubby would have gone to the tournament alone, if he went at all.  I still would have brought the dog to the vet, but I don't know if we would be having the fundraiser.  Instead I probably would have taken Dan out to a playgroup.  The only day that was "normal" was Tuesday and that was because hubby was a stay-at-home dad.  But grocery shopping and breakfast are still different - it's  only 2 of us now, not 3.  I don't have formula, diapers, toys....

Tuesday, November 13, 2012

Quotes on Loss

Over the past year I have found so many quotes on living after loss, especially child loss.  Here are some of the recent ones:

If a child loses both parents, they're Orphaned. If a Person loses their spouse, they're a widow. But is there such a word for a parent who has lost a child?

People sometimes label parents who have lost a child as "different", "moody", and "overly emotional." Bereaved parents often stop getting invitations out to dinner, etc., because their friends "don't know what to say to them" anymore. How about, "My heart is dying right with yours, and we'd love you to join us for a night out. I'm sure you could use a break from all the heaviness. Let me be here right with you through this pain!" Friends like that are worth more than a million dollars!!!!!


The moment that you left me, my heart was split in two; one side was filled with memories; the other side died with you. I often lay awake at night when the world is fast asleep; and take a walk down memory lane with tears upon my check. Remembering you is easy, I do it everyday; but missing you is a heartache that never goes away. I hold you tightly within my heart and there you will remain; you see life has gone on without you, but will never be the same.
As parents, we LOVE to take care of our children. It's not a burden, but rather something that we enjoy doing. When child loss occurs, we feel like such a failure -- like we couldn't properly take care of our child, and that hurts so very, very much. It takes a long time to work through the guilt of child loss....


"At some point, people will begin to expect you to return to what they perceive to be a normal life. Actually, your life will never be normal again. You will learn to be pleasant, productive, and functional but things will never be the same again because an integral part of what used to be you has been torn away. But....even in the earliest stages of feeling around for your land legs...the familiar moves and thought patterns of work can have remarkable therapeutic value.  Whatever was your life's work before your loved one died can become the work that can save your life in the early weeks and months of grief. Again, you are the only one who knows the right timing for your return to work. You shouldn't make the mistake of going straight from the funeral to the office- the guilt for that ploy will catch up with you later. But neither should you take an indefinite leave of absence on the assumption that you will never be able to function again." ~ Charlie Walton, When There Are No Words: Finding your way to cope with loss and grief

"If there is one method of communication that does work in times of grief, it is the hug. The comfort content of words is hit or miss...but sincere hugs always make clear statements.   When our friends visited our home on the day we learned about the boys' deaths, there were many hugs. A hug finds its own length and level in intensity depending on the relationship you have with the person who approaches. If you have known them long and well..or ..if you know without a word being spoken that they have suffered a deep personal loss in the departure of your loved one...the hug may go on and on. You may deposit tears on each other's shoulders. No words need be uttered for volumes to be communicated." "It seemed to me that every hug helped to dilute the pain a little more...that every sincere hugger carried away a small quantity of the mountain Kay and I were facing." ~ When There Are No Words: Finding your way to cope with loss and grief by Charlie Walton

You don't get over it,
you just get through it.
You don't get by it, because you can't get around it.
It doesn't 'get better'; it just gets different.
Everyday . . . Grief puts on a new face . . .
~Wendy Feireisen

oaches. If you have known them long and well..or ..if you know without a word being spoken that they have suffered a deep personal loss in the departure of your loved one...the hug may go on and on. You may deposit tears on each other's shoulders. No words need be uttered for volumes to be communicated."
"It seemed to me that every hug helped to dilute the pain a little more...that every sincere hugger carried away a small quantity of the mountain Kay and I were facing."
~ When There Are No Words: Finding your way to cope with loss and grief by Charlie Walton

Monday, November 12, 2012

Monday - 5 for 5

It's Monday!  That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left.

 So what were last week's goals?

1. Write the donation letter. Done!  Donation request letter and press release both completed!

2. Finish my thank you cards.  All my cards for sympathy cards and mass cards are completed and mailed. Still have a few for those who attended Dan's services (who didn't send a card).  So I would say 85% complete.

3. Contact the local newspapers with the letter and flyer.  I sort of cheated on this one.  I had made contact with one of the newspaper type magazines before I wrote this list.  The flyer is in their November edition, which I received in the mail on Saturday.  I also provided the donation letter, flyer and press release to one of the local mommy blogs/magazines.  But I still have more to do.

4. Cook one homemade dinner this week.  Success!!  I used this recipe for chicken drumsticks, but halved it because we didn't want leftovers.  I added some leftover stuffed mushrooms and some sauteed yellow squash (cut lengthwise) in extra virgin olive oil.  If I let the drumsticks marinate more than an hour (and fully thawed!) they probably would have had more flavor.  Some of the squash was really sweet (which is what I wanted), but I was afraid of letting them cook too long.

5. Read 10 newspapers.  I've read 3.

Ok, so what are this week's goals?

1. Write opinion letters to the 3 local newspapers.
I need to keep the publicity going, so this is the next step.  Some sort of awareness item will be on the list until the fundraiser on December 9.

2. Cook one homemade meal this week.

3. Read 10 newspapers.

4. Organize my coupons.
I have a lot of coupons that I need to organize for our use and to trade with others.

5. Exercise 20 minutes two times this week.
Walking to and from the office to the bus does not count.

Sunday, November 11, 2012

One year ago...

...I lost my son, my baby, my boy.

My husband wrote these beautiful words on his Facebook page last month:

It has been 11 months today that my youngest sons heart stopped beating in my hands never to beat again and never to be held by me in the living form that we all know but i am still proud of him as i am his brothers he is my inspiration every day for the fight that he put up every day to try to stay here with his mom,dad and brothers he taught me more in his short life then i had learned in all the days i have been around he taught me to love unconditional and to look for the best in people and help where you can even if it isn't much you can do at least you gave it a try and to not forget that there are people out there that have it worse then us so all ways look up to the skies,smile and laugh when you can and to show love to others like you would like them to show to you well have a good day world and don't forget to smile because i know my Daniel man would

I found this photo from The Compassionate Friends Facebook feed:

Saturday, November 10, 2012

Friday, November 9, 2012

Caring for the Caregiver

At some time or another, we all wind up being a caregiver for someone.  Sometimes for a day or two, but sometimes for years - whether it is an elderly parent or a seriously ill child.

A Caregiver’s Bill of Rights by Jo Horne
I have the right:
  • To take care of myself.
  • This is not an act of selfishness. It will give me the capability to take better care of my loved one.
  • To seek help from others even though my loved ones may object.
  • To recognize the limits of my own endurance and strength.
  • To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy.
  • To know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
  • To get angry, be depressed, be anxious and express other difficult feelings occasionally.
  • To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt and/or depression.
  • To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
  • To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
  • To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
  • To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

Twenty Ways to Care for Caregivers
  • Laugh about something everyday.
  • Take care of yourself physically.
  • Eat a well-balanced diet.
  • Talk with someone every day. Talk to an objective person when issues arise.
  • Don’t overload your daily “to do” list – be realistic. Don’t "should" on me and I won’t "should" on you!
  • Let family and friends help. Give them printed material on the disorder so they can better understand your relative. Give them a chance. Make specific requests and/or define tasks they can do
  • Give yourself permission to have a good cry. Tears aren't a weakness, they reduce tension.
  • Exercise. A brisk walk counts.
  • Get adequate rest.
  • Try a bowl of Cheerios and milk before bed to promote sleep.
  • Avoid noisy and/or tension-filled movies at night. The late news itself can add to stress. Skip it.
  • Reduce daily caffeine intake.
  • Get professional help if you feel your support system isn't adequate or if you feel overwhelmed.
  • Take a break every day, even if it's only 10 minutes alone in the backyard.
  • Explore community resources and connect yourself with them. Participate in a local support group. SHARE your feelings with family and friends.
  • Listen to music.
  • Learn relaxation techniques, like progressive relaxation (one muscle group at a time, tense for 10 seconds and then relax) (or bubble baths!)
  • Meditate.
  • Regularly attend one or more support groups and education workshops.
  • Give yourself a treat at least once a month: an ice cream cone....a new shirt or dress....a night out with friends....a flowering plant, or just ask for a hug or kiss (more than once a month!).
  • Read your Caregiver's Bill of Rights (and Today's Caregiver magazine)
  • Delegate responsibilities.
  • Know your limitations. If you wear yourself out, who will care for your loved one, or for you? Caring for yourself is not selfish!
  • Give yourself credit! Boost self-esteem.
  • Change the way you look at the world (change your perceptions)

Many times friends, neighbors, other family members will say "call me if you ever need anything".  Well take them up on those offers!  Call someone and ask them to get you a gallon of milk, or to pick up the dry cleaning or to sit with your loved one while you jump in the shower.  You will quickly determine who will help and who will not.  You also will quickly find out who will be willing to sit with your loved on and who will run errands to help you.  Some people aren't comfortable being around "sick" people, so ask those people to run errands for you.  Many times people want to help, but just don't know how.  Swallow your pride and the thinking that you can do it all; ask for the specific help.  You will be surprised how much better you feel just by delegating the little things.

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.


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.


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."


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.

Thursday Blog Hop!

Last week was awesome! We had almost 50 blogs link-up! This week we are starting something new. We have decided to make one lucky blog the features blog of the week! How do you get featured? Hop around, follow the rules, make friends.

Looking to be a co-host? Click HERE to view more info on that!

Here's the badge:

Just Copy and Paste the Following!:

Remember the rules? If you're new or can't remember, here's a replay. :)

1. Follow your host and co-hosts via GFC.
Nanny2Mommy - Hostess with the Mostest!
Going With The Flow - CoHost
Brainless Mom of 7 - CoHost
Mom In The USA - CoHost
We try to follow everyone who links up but please help us by commenting when you follow. Thanks!

2. Place the badge somewhere on your blog. Side bar, separate tab (like I have), or if you would like, the cool thing about our linky is it's a blog hop, so you can add it to you blog as well! It gets the word around about the linky, therefore more people link up, getting you more followers! :)

3. Visit at least the two blogs before yours in the link set-up.

4. Please don't link back to a giveaway, just your main blog page. If you have a blog hop or linky party, you may post a direct link to that. All other links will be edited or removed.

5. Tweet about the Hop!

6. One more rule: Have Fun! ;)

Okay, everyone. Time to link up! :D

Thumping Thursdays Blog Hop; Week #3

Wednesday, November 7, 2012

It's a bit late...but save it for later

I read a wonderful blog entry on the Children's Hospital Boston web page. 

Weathering the storm with children who have chronic illnesses

Although written for keeping children safe and healthy during weather emergencies, the tips can also be used to prepare adults.

When we received Dan's diagnosis, one of the first things I did was contact my local electric company.  They needed a doctor's certification and several pages of paperwork from me, including the types of equipment I had, the battery backup power of each piece of equipment, and the duration of use each day.  My electric company does not provide generators and could not guarantee that our power would be restored first.  But they have always called us with a recorded message about the impending potentially adverse weather conditions.  There is also a dedicated number to call when the power does go out.  But even if you don't call the dedicated number the account is "flagged" to talk to a representative to make sure the information is recorded properly, including how long we had been out and the current equipment being used.

But don't forget about your gas company too, especially if you use natural gas or propane for heating (for those of us especially in the colder climates!!)

Although it would save some money, I refuse to give up my old copper landline telephone.  I am able to call 911 and they know where I am instantly.  Yes, GPS sensing on cell phones is getting more precise, but if you can't talk, having the immediate recognition form the landline provides just that little bit more comfort.

Three pieces of medical equipment in this picture:

  1. Feeding pump (on the pole on the right)
  2. Suction pump (just to the left of the feeding pump, partially behind the bed rail)
  3. Apnea monitor (small white sensor to the right of the shoes)

Tuesday, November 6, 2012

Another Angel

Boy do I hate writing these posts.....

Raiden Dwayne Linkous
04/24/96 ~ 11/04/12

Raiden Dwayne Linkous
Raiden Dwayne Linkous (NPC)
Sadly, we must pass along the heartbreaking news that young Raiden Dwayne Linkous lost his battle against Niemann-Pick Disease on Sunday evening, November 4th, 2012.  He was surrounded by his loving family when he peacefully lost his fight.  Raiden was born on April 24, 1996 in Pulaski, the son of Michelle Dean Long and Douglas Dwayne Linkous.  His brothers, Alvis and Ashton, along with step-brother, Christian and step-sister, Abby ~ will miss young Raiden greatly.

Raiden was an inspiration to all who met him and had the opportunity to see his tender smile and kind disposition.  He LOVED spending times outdoors, especially fishing with his Dad and family or spending time with loved ones near the water.  He will be sorely missed by his family, friends, and NPD community.

To send online condolences to the family, please visit:
Raiden Linkous Obituary

The family created a (soon to be) not-for-profit to expand upon Raiden's love of fishing.  Please check it out: Fishing For Charities

5 for Five

Here's another blog hop I'm doing...since it's all free, it's a great way to raise awareness!  You can see the blogs involved on the left side - just click the "5 for five" button.

This one is on Monday's (so I'm a day late) and is a list of 5 things you want to accomplish this work week.  Every Monday I report on how I did and set 5 new goals.

So for this week:

1. Write the donation letter.
I am writing a letter to local businesses to ask their help in promoting or donating to Dan's Dreams, the fundraiser I'm having to spread awareness and raise research funds for Niemann Pick Disease.

2. Finish my thank you cards.
I want to finish sending out my thank you cards to those who sent us cards last year when we lost Dan.

3. Contact the local newspapers with the letter and flyer.
Obviously if I don't get the letter done, this one doesn't get done.  But I want to contact the local newspapers and magazines to get space to promote the fundraiser.  This one may be on the list for a few weeks.

4. Cook one homemade dinner this week.
Hubby usually cooks, so for me to cook is always interesting.  And with just 2 of us it's a challenge because neither of us usually wants to cook anymore.

5. Read 10 newspapers.
What?  One of my quirks is having to read newspapers in sequence, and I am behind to mid-June!  So this one will be on the list for awhile!

Let's see how I do this week.  Next week I will let you know and add 5 new goals.

It's Election Day

Monday, November 5, 2012

Dan's Dreams

I am always looking for donations for the raffles!  If you have anything that you think is good for a raffle, let me know!  If you are local to me and are willing to lend a hand, please let me know.

Sunday, November 4, 2012

This week's blog hop

I've joined a blog hop to broaden the reach of this blog.  I hope to increase awareness of Niemann Pick Diseases, grief, and child loss.  Please visit these blogs if you are inclined, and follow any that interest you.  If you do follow one, please let them know you found them from my blog.  Thanks!

Saturday, November 3, 2012

Now I'm addicted (and it's a good thing)

I'm addicted to writing this blog now.  See?  I told you it was a good thing....

I have so many random thoughts running through my head, I don't know where to start.

The memorial mass this morning was perfect.  There were maybe 30 people in the church, including some friends that I didn't know were coming.  One of them lost his father a few months ago.  But I didn't realize that the church his father was a member of and the church that Dan was baptized in are now affiliated.  It was comforting to have friends as well as family there during a difficult morning.

But it also started a cascade of tears.  I've had a few very difficult days and the mass just increased the intensity of the emotions.  There is no timetable on grief and the powerful emotions strike at any time.

On another subject, I have linked a few posts on the left side under "Important Posts".  These are the posts that I think people will  be most interested in returning too at some point.

We bought Dan this trampoline for Christmas in 2010 to help strengthen his bones and legs.  He enjoyed it for a while, especially the music.

Friday, November 2, 2012

Busy, Busy, Busy


October has come and gone and after writing a post every day for Awareness Month, I'm a bit typed out. So here are some random tidbits for today...

Random #1: A wonderful NPA mom has written Warrior Baby.  She has this wonderful idea about getting the book into the hands of other sick children, including those affected by Niemann Pick Diseases.  You can read more about her idea here and more about the book itself here.

Random #2: The church that Daniel was baptised in is having its annual Memorial Mass for those who were lost in the preceeding year.  Please keep us in your thoughts tomorrow morning as we spend some time with other families who have lost a loved one.

Random #3: We dodged a bullet with Hurricane Sandy.  In a unique weather pattern, the storm circled around us and never hit us directly.  We had lots of wind, a bit of rain, and some scattered power outages. Here is a map to give you some perspective.  I live even further north than point A (Albany, NY).  Point B is New York City, about 3-4 hours away by car.

Random #4: I am starting to put together a fundraiser for NNPDF for early December to celebrate Dan's birthday.  More information coming soon.

Random #5: The 20/20 Challenge is still going!  All online donations can be made until November 5.  All checks/money orders need to be dated by November 5 and postmarked by November 9.  There is still time!