Another year

We just returned from the most recent NNPDF Family Support and Medical Conference.  This year we were in Danvers, MA.

Every year I meet new people, see old friends ("family") and we all feel safe.  It's a place to learn from the research, learn from each other, and not be afraid to share your thoughts and feelings.

Among all the sadness, with the memorial service and seeing kids you saw walking 4 years ago now in wheelchairs, there is always fun.  We celebrate life, we celebrate each other, we celebrate milestones.

A Wonderful Birthday

Can you believe it has been a year since my rainbow baby Shelby was born?  It's amazing how quickly time has gone.  Ms. Shelby is all crawling over the house, getting into things and standing on our own.

We had a nice quiet actual birthday celebration.

 With mom and dad

Rainbows

The urban dictionary defines "rainbow baby" as a baby that is born after pregnancy loss or still birth.  The definition has slowly been expanded to include a baby born after the loss of a child, no matter what the cause.

We have five rainbow babies in the Niemann Pick Family:

1. Shelby, born in August 2013, baby sister to Daniel
2. Bella, born in September 2013, baby sister to Monica
3. Koa, born in March 2014, baby brother to Wylder
4. Baby Girl, due in June 2014, baby sister to Trek
5. Baby, due in August 2014, baby sibling to Jacob (this child is actually the 2nd rainbow)

I will be writing more about each of these blessings in the weeks to come.

Ducks for Bucks - a fun way to help

What is Ducks for Bucks?

Breann's Story

Ducks for Bucks is a 501(c)(3) non-profit organization that was created in memory of Breann Chavez who passed away at the age of three from Niemann-Pick Disease, type C (NPD-C).  All money raised goes directly into the hands of families caring for children with NP-C, so they can personally apply it towards their greatest need at the time.

Our goal is to raise money for families who are still in the fight against this terrible disease.  Families faced with NP-C are looking at a very short amount of time with their child.  We would like to help them alleviate some of their financial burden so they can focus on enjoying the few years they have with their child.

Over the past few year Ducks for Bucks has had the privilege of helping these families with equipment needs, medical bills, and sadly, even funeral expenses. We also help provide travel expenses, allowing families to get to the Annual Niemann-Pick Disease Family Conference.  Here, families can network with other families and share ideas for caring for their terminally ill children.  With all the different complications associated with this disease, and because of the lack of experience most doctos have with this rare disease, this service becomes a life line for many families.

Ducks for Bucks also works together with the National Niemann-Pick Disease Foundation to help provide an  Equipment Exchange Program for NPD families. This program allows families to share costly equipment that they no longer need with other families who can benefit from the equipment.  http://www.nnpdf.org/familyservices_09.html

 How to Help?

The first Saturday of every June, we have our Annual Family Fun Day.  This is a day where we raise both awareness and money for our families.  It is held at Wines of the San Juan in Turley, NM (30 miles east of Farmington)  from 12-5pm.   There is live music, wine tasting, food, carnival games, horse riding, a silent auction, raffles, and everyone's favorite -The Dainty Duck Dash.  This rubber duck race is a local favorite with a $1000 first place prize.  We are always looking for sponsors to make this event possible.  If you would like to be a sponsor for this event or would like to pass the information on to you someone, you can download this year's brochure.


2013 Bucks for Bucks Brochure

All sponsors are fully recognized on day of the event.  If you are interested please let us know right away so we can be sure to recognize you on the posters and shirts.   You may also contact us by email

lisa@ducksforbucks.org
alex@ducksforbucks.org

   Buy a Duck - The Dainty Duck Dash is a rubber duck race that takes place at our Annual Family Fun Awareness Day.  Ducks are $5 each.  Ducks race in heats of 250 ducks at a time.  Winner of each heat qualifies for the final race.

1st place - $1000
2nd place - $500
3rd place $250 

 For More information on Ducks for Bucks, see their website at www.ducksforbucks.org

 

Rare Disease Day is Coming

Every year the last day of February is Rare Disease Day. For more information about Rare Disease Day click here and here and here

This day is promoted by The Global Genes Project. The logo for Global Genes is a pair of blue jeans. Get it? You can see the logo on the left side bar of my blog. If you click the logo it will bring you to www.globalgenes.org

Last year I asked a friend of mine if she would be willing to make some hair ribbons with the Global Genes logo. I purchased a few and other families affected by rare diseases also purchased some. I spoke with her a few weeks ago and she still has some in her inventory - hair bows and headbands. You can see her Global Genes items in her online shop Hart of Karen Creations.  She also has an Etsy shop. While there also take a look at some of her other creations.
 



The specific Global Genes items are here, here, here and here.

Disclosure: I purchased items from this store in early 2011 and have not received any compensation for writing this post. The opinions are my own, and she is a personal friend.

Random Musings

This is how I feel right now:

(source)

Let's see if I can make some sense of these lines.....

1. I wrote my first guest post!  You can read it at Sara Sherrell.  Here is a sneak peek:

In this holiday season, there are a lot of advertisements and wish lists for things.  The latest video game, the hottest toy, the newest piece of electronics.  But what happens when those items are no longer popular or break? The holidays are a good time to evaluate what you need and what you want.

2. I absolutely HATE, HATE being sick!!  I had a sinus infection in mid-November and got rid of that.  But I haven't been able to knock this cough and tired feeling and cold chills since then.

3. Christmas was quiet for us.  Found those last minute gifts and went to my parents for a Christmas dinner.

4. We are supposed to be getting our first major winter storm in a few years.  Possibly up to 12 inches.  It has already started as I write this.

5. I finally tallied all the donations from Dan's Dreams, the fundraiser I had to raise awareness and research funds for Niemann-Pick Diseases.  We raised about $2,200!!!

6. I don't want to go back to work. :-(  I had a nice 4-day weekend and then another day working from home.  It's back to the office for 2 days (unless the storm says otherwise) and then another 4-day weekend.

Another Weekend Wander

As I was writing about our beautiful trip to Nantucket, I realized that I never wrote about our first weekend wander after Dan died.

Over the summer I heard about a family with two young boys that have Niemann-Pick Type B.  They live near Watertown, NY, which is about 3 hours away.

We took the scenic route through the Adirondack Mountains and a bit of a heavy rainstorm.  What started out as a rainy day, turned into a nice afternoon. 

We had a wonderful day talking with family and friends and listening to music.

That evening they had a fire dance routine. Sorry if these are dark, but it was night-time.

Through some amazing generosity, we were able to stay at a summer cabin and enjoy a beautiful sunrise on Lake Ontario.

We had a lovely breakfast with some of the family and drove home.

On our way home, we stopped a met another mom and her two children, one of whom has Niemann-Pick Type C.  They only live about an hour away.  We had a wonderful conversation about how you move forward after losing a child - she lost her son - and doctors and therapies.  I know that we will be seeing more of her and her family.

A Beautiful Trip

Before Dan was born, hubby and I would take random weekend trips.  Some were just day trips, others were for the weekend.  We would typically go "off-season" so it wasn't as expensive or as crowded.  Yes, there were sometimes that we missed some things because they were closed - it was off season after all.

As anyone with a child knows, it becomes difficult to travel - diapers, formula, toys and lots and lots of clothes.  So we put our weekend wanders on hold.

After our trip to Nashville this summer for the NNPDF conference, we realized how much we have missed our weekend wandering.  So.....

About 6 weeks ago, a fellow Niemann-Pick angel mom posted in her blog that she was planning on spending about 4 weeks in Nantucket, Massachusetts.  Since Nantucket is only about 4 hours by car away, it made for a perfect weekend trip.  So I contacted Shannon Laffoon and we decided that yesterday was the best day for a visit.

We got up early and drove out to Hyannis, Massachusetts.  There are only a few ways to get to the island of Nantucket - ferry or plane.  We opted for the ferry.  We took the noontime high speed ferry, which was an hour trip.  When we got off the ferry, we met Shannon and shared some hugs.

We had a beautiful sunny day, about 40-45 degrees to go wander the island.  We first grabbed some lunch and talked about our beautiful children.  Shannon blessed us with Wylder Nation wristbands, in memory of her Warrior, Wylder.

 

 We walked around part of the island - looking at architecture, talking about all sorts of things.  We wandered out to a lighthouse

It was a bit windy so instead of walking around the beach we went and had some hot drinks.  As we headed back to the afternoon ferry, we stopped to take a picture of the floating Christmas tree.

And to prove that we really did spend the weekend together, we asked someone to take a picture of us with the Christmas tree

We had a wonderful visit and I am thrilled that we had a chance to meet Shannon and help with her healing journey.

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.

Thankful Thursday

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

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.

Reunions!

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?

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?

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.

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.

Family Businesses

October is Niemann Pick Disease Awareness Month.


Caring for a child with any sort of special needs is difficult.  Losing a child is a whole different thing.  Many families turn their challenges and loss into positive, productive businesses.  Please take a minute and look at these businesses. 


Willow Wicks - candles and spa products in memory of Breann Chavez (NPC)

Wyler Nation - merchandise and Warrier Baby book in memory of Wylder Laffoon (NPA)

Jarret Ingram - The Three Brothers go to the Beach! and Following After Trek in memory of Trek Ingram (NPA)

Rozetta Beckman - What Matters Most, Living with Young Adult Onset NPC, in memory of Chuck Beckman (NPC)

Stults' Sweets - cake pops and other sweet goodies in and around the Kansas City, MO area. Mother to Brisan and Parker (NPC) and Duncan.

*****

Below are several 501(c)(3) charity organizations that have been set up by families to help fund research.  If you have some extra money, please donate it to one of these organizations or the NNPDF.


Ducks for Bucks - All money raised goes directly into the hands of families caring for children with NPC, so they can personally apply it towards their greatest need at the time.  Created by the Chavez family.

Lee King Bass Tournament - Hold a fishing tournament for adults that will provide funds for Niemann-Pick disease research  to find a cure for this devastating disease.

Breakthru Fund - We have established the Smith Family BReaK Thru Fund in honor of three of our children, Braden, Riley and Keaton, who have been diagnosed with Niemann-Pick Type C disease (NPC).

Cycle 4 Sam   - The Sam Roberts Family Fund is dedicated to the memory of Sam Roberts who passed away on April 19, 2005 at the age of 4 years 10 months. 

Race for Adam - The Race for Adam Foundation, a volunteer non-profit organization dedicated to funding research projects to find a treatment and cure for Niemann-Pick Type C disease (NP-C)

Hadley Hope - a non-profit corporation which allows us to raise awareness and funds for research, therapies, medication, clinical trials, and research that may potentially provide a cure for our children as well as others in the U.S. and around the world. 




All of these businesses and charities are available here, on the right side of the page.

International Friends

October is Niemann-Pick Disease Awareness Month.

NPD is not just confined to the United States.  There are several families that I talk with in United Kingdom that have also lost their children, and others that have children who are affected.  Below is a small sampling.

Below is a video of Calum Burdon, from the UK, who lost his battle on December 26, 2011.  Calum reminds us so much of Dan, although Calum was a couple of years older.




This is a video of Ben (and his sisters), from the UK, who also lost his battle to NPC in April 2012.






This is Anabel in Portugal.





This is Nanami in Japan.

From Australia.  Sadly Matt (Sitting) lost his battle with NPC Disease on July 14, 2012. 

Damien in Switzerland with NPB

Amber in New Zealand  with NPA.  We had the wonderful pleasure of meeting this darling and her parents when we were in Nashville.

Mom to an angel

Yesterday I met with some new friends and some old friends at a monthly gathering of parents and kids with different abilities.  The old friends knew Dan at his worst.

One of my new friends introduced herself, "Hi! I'm (name), mom to (name)."  I answered her, "Hi! I'm Jill, mom to an angel."

She paused a minute, looked at me and then a few minutes later, asked how old my child was.  I answered "He would be 6 in December."

She paused again, looked at me again, and then realized what I had said.

I am mom to an angel.

There I've said it.  It naturally rolled off my tongue, just as if I said "Hi! I'm Jill, mom to Dan."  I didn't cry when I said it.  Maybe because of the company I was in - parents who understand special needs.  Parents who understand life challenges.

It's not a phase I ever wanted to say.  It's not a group I ever wanted to be a part of.  But sometimes you just don't have control over your life.  If I did, Dan would still be here, healthy. 

But I have to accept that he isn't.  Accepting it doesn't make it any easier, doesn't make it any better.  It's just reality. 

I will always be Dan's mom.  But I am also, now, mom to an angel.

Rare Diseases

Rare diseases are just that - rare. I think the official definition is less than 200,000 cases in the USA. Do you know how many that really means? Over 7,000! The searchable list is here: http://rarediseases.info.nih.gov/RareDiseaseList.aspx?PageID=1


In my little area of the world there are 3: Dan had Niemann-Pick; another little girl, Kaitlin, has Batten Disease, also known as late infantile neuronal ceroid lipofuscinosis (LINCL), (see her blog here: http://comingtogetherforkaitlin.blogspot.com/); and a third young woman, Emily, has Cerebro Costo Mandibular Syndrome (see her blog here: http://emilysjourney94.weebly.com/index.html). Each is quite different.

Just on the heels of our trip to Nashville, TN for the Niemann Pick Conference (more in another post), Kaitlin's mom had her 4th annual benefit for her daughter. So we went. And I now proudly wear two rubber bracelets - one for NNPDF and one for NCL.

I met Becky, Kaitlin's mom, about a year ago, shortly after Dan died. I was getting rid of some supplies and posted them on a Facebook group that lets people share unused, excess supplies for the cost of shipping. Becky responded to a post and when we realized that we didn't live to far from each other we decided to actually meet. Since then we have kept in regular contact and totally understand what the other is going through.

I have not met Emily in person yet, but I'm sure I have seen her around town....especially since we live in the same school district. I met Emily through another Facebook group related to those who have rare diseases.

Friendships

I never really had good friends when I was in school.  I was too smart and kept to myself.  In college I came out of my shell a bit (thanks to those crazy theatre folks in Stage III!).  I never really considered myself as having those "good friends" who I could really talk to.  I had a few during school, and they are still around - thanks Greg, Shannon, Kelli!! - but they were few and far between.

In the past few days I have had two - yes two! - really great afternoons with two totally different people, both of whom I have met only in the past few years, and both of whom I consider good friends.

Given my life, I should have learned to expect the unexpected, but it just dawned on me that I consider these two really good friends.  So thank you Joni and Alison for some wonderful conversations and true relaxing time.

I also count several people who I have only met online or talked to on the phone as good friends too...some who have lost children, others who haven't.  So thank you to you as well - Kristen, Shannon.

Hmmm...looking at this post again....the Shannon from my years growing up is different than the Shannon now...but interesting how the names are the same.