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.

Thursday, July 31, 2014

Christmas In July

The Northeast Bloggers Network hosted a Christmas in July party with Secret Santas.  Those members of the Network interested in participating signed up and then were assigned another blogger to be the Santa for.
 https://sp1.yimg.com/ib/th?id=HN.608009232945711745&pid=15.1&P=0
The Santa was supposed to review their blog and any other social media accounts that they had to "get to know" them.  Once you "got to know" your recipient, you went out and purchased items that reflected who they are and mailed them  to the recipient.


So what did I get?

Monday, July 28, 2014

5 For Five - July 28

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Read 12 newspapers this week. Done.
2. Clean off desk at work. Almost done.  Just the items from Friday are left.
3. Mail my Christmas in July present. There will be a post about this soon. Mailing done.  Watch for the post this week.
4. Remove 3 "adult" things from Dan's room. Nope.
5. Gather documents for NNPDF Conference next week. Partly.  I know what I need, it is just a matter of putting it together.

So this was a 3.5 out of 5. I'm getting my groove back. I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

Thursday, July 24, 2014

A new NPC Angel

It has been some time since I have had to write one of these angel posts.

I had the pleasure of meeting Mindy and her family in both Nashville in 2012 and Baltimore in 2013. I even wrote about Mindy in February during Rare Disease Month.

Malinda M. “Mindy” Fagan , age 15, of Michigan Center, earned her Angel Wings to Bloom into Heaven on July 23, 2014 following a lifelong illness. In her final days she was surrounded by family and friends that she had touched in a small way throughout her short but very memorable life. She is survived by her Daddy- Allen, Mommy-Ronda, sister - Allie, two brothers - Justin (Kayla) and Kyle (Tabby), Papa - Ron, Grandma - Linda and several aunts, uncles and cousins. She was preceded in death by her grandma Char Roebuck and Grandpa Allen Fagan Sr. Mindy showed us how to persevere with her beautiful strong willed smile, her strength and her ability to overcome all challenges. She was the strongest of fighters. She loved being with her family, friends, music, camping and cuddling. Services celebrating her life will be held at the First Church of the Nazarene, 3905 Clinton Road, Jackson on Friday, July 25, 2014 at 11 am with Pastor Rod Walker of the Harmony Baptist Church officiating. Visitation will be at the funeral home Thursday, 2-8 pm and at the church one hour prior to service time. Contributions in Mindy’s memory are directed to the NNPDF, PO Box 49, Fort Atkinson, WI 53538 –www.nnpdf.org

Nichols-Arthur Funeral Home
820 Fifth St
Michigan Center, MI 49254

The full obituary and guest book can be seen here.

There is a Go Fund Me page set up to help defray some of the funeral expenses. Mindy's grandma died a few weeks ago too. Her grandma was a big part of her life and traveled with her to Baltimore where my husband had some great conversations with her.

Wednesday, July 23, 2014

Webinar - Successful Online Fundraising on July 30

I saw this on the Global Genes webpage


Using Successful Online Fundraising Strategies
Date: July 30, 2014
Time: 10:00 am PT / 1:00 pm ET

Register here!

Online fundraising has made it easier to raise money to support your cause at anytime, anywhere. But if the possibilities are endless, why do so many of us feel disappointed when all of our efforts amount to very little?

This webinar will address why this often happens and the steps you can take to ensure your fundraising efforts run more smoothly and successfully. This includes understanding the necessary prep work, the importance of relationship building, social media implementation, and other considerations.

Panelists will share strategies they have adopted, challenges they have overcome, and success stories.

If you are unable to attend, please register and we will send the link to the slide presentation and recording after the event concludes.


Panelists:
Bill Strong, Founder, Gwendolyn Strong Foundation
Bill Strong is husband to Victoria and proud dad to Gwendolyn and Eleanora. Bill and Victoria started the Gwendolyn Strong Foundation (theGSF) in 2009 after Gwendolyn was diagnosed with spinal muscular atrophy (SMA) type I, a degenerative and terminal disease. The GSF focuses on harnessing the power of technology and social media to advocate and fundraise for the SMA cause through its motivational NEVER GIVE UP. brand.

Annie Mitchell, Social Media Director, Cure JM Foundation
Since 2008, Annie Mitchell has volunteered as the Director of Social Media for Cure JM Foundation, a nonprofit organization devoted to Juvenile Myositis (JM) research, support for families, and awareness of a rare autoimmune disease her daughter had been diagnosed with the previous year. Collaborating with Cure JM leadership, staff and volunteers, Annie led international social media teams’ efforts to help win grant contests based upon either crowd-funding or internet/social media voting – Crowdrise Holiday Challenge (2013) – $100,000; Chase Community Giving Grant (2012) – $50,000; Pepsi Refresh Grant (2010) – $250,000. Annie Mitchell has served on the Board of Directors for Cure JM Foundation since 2011.

Molley Lindquist, Founder & CEO, Consano
Molly Lindquist, a mom and breast cancer survivor, founded Consano, a 501(c)(3) crowdfunding platform for medical research, after her cancer diagnosis in 2011 at the age of 32. Before taking on her toughest job as stay-at-home mom to her two daughters, Molly travelled the globe sourcing products for World Market and doing company planning for the Banana Republic brand of Gap Inc.. Molly blogs about her cancer experience for the Huffington Post and was named a 2014 Orchid Award Winner by the Portland Business Journal.

Moderator:
Daniel Levine, Founder & Principal, Levine Media Group
Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.

Monday, July 21, 2014

5 for Five - July 21

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Read 12 newspapers this week. Finish February. Done!
2. Pre-plan dinner for 3 nights this week Did at least one night, maybe 2.
3. Put together a Shutterfly book. Nope.
4. Finish my Christmas in July shopping. Done. Now to mail it.
5. Clean out the "adult" stuff from Dan's room.  Ms. Shelby is crawling in there and moving things around! Did get a few things out. Need to tackle a bit more.

So this was a 4 out of 5, with 2 that I am counting as half each (#2 and #5). I'm getting my groove back. I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

Sunday, July 20, 2014

New Chef in the House

What's that old saying?  You can judge the quality of a chef by the size of the mess.



Well, I think I have a good quality chef. What do you think? 


 

Wednesday, July 16, 2014

It's Only Wednesday???

Have you ever had one of those weeks that you want to start over again? Well, this is one of those weeks.

The week started with bulls. Yes, bulls. You know those big creatures that have horns?

We live out in farm country. We have deer, fox, turkey wandering our yard, as well as the usual birds and chipmunks and squirrels. We had a few pigs from the farm that surrounds our house. We've had horses walking down the street from the horse rescue farm. We live across from an apple orchard. So animals are normal for us.

But bulls. Not something we expected. And not at midnight on Monday morning.

Monday, July 14, 2014

5 for Five - July 14

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. SMART goal - read 12 newspapers this week. Finish February.  I didn't finish February, but I did read 12.
2. Start a meal plan for the month. SMART goal - Go through the freezer and make a list of what we have.  List made and dinner for Monday pre-planned.
3. Put together a Shutterfly book. Nope.
4. Do some blog updating. SMART goal - download the files I need. Yes!
5. Clean out the outdated coupons since it is a new month. Yes! Did my coupon book and my extras too!

So this was a 4 out of 5. I'm getting my groove back. I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

Saturday, July 12, 2014

Do you remember your first experience?

Do you remember the first time you experienced fireworks?  Where were you?  How old were you?  Were you scared?  Did your ears hurt?


I don't know if these were my first fireworks, but I remember being about 10 or so and sitting on a blanket in a field with my parents watching fireworks.


But the most important fireworks were the ones that I saw on New Year's Eve the night I met my husband.  Second to those were the fireworks we took Dan to see.  We did see quite a few of them...from 4th of July to Charlton Day (a hometown celebration) for several years...

Although I have the memories, the memories aren't memorialized in photographs,  with the exception of the first time he saw fireworks - at SPAC for the 4th of July



Thursday, July 10, 2014

Dan Growing Up

Here is a Shutterfly photobook of age 3.5 to 4. Looking at these pictures now, you can really start to see how NPC is taking its toll.

Start your own Shutterfly Photo Book today.

Tuesday, July 8, 2014

5 For Five - July 7

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. SMART goal - read 12 newspapers this week. Done! With some! Well into February.
2. Put the Elks Flag Day book together and mail it. Done!
3. Start a meal plan for the month. Looked at a few recipes, but need to figure out what we have in the house to start with.
4. Put together a Shutterfly book. Nope.
5. Enjoy some fireworks! Yes! See post later this week.

So this was a 3 out of 5. Not bad. I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

Saturday, July 5, 2014

Mixed Emotions


The past few weeks have been emotionally difficult. As Dan grew up, we sold or gave away alot of the smaller baby type items. So when he started regressing, I started to again collect the baby type items - the ones that are easy to operate and don't require a lot of dexterity. Many of the toys we were buying or asking for as gifts were in the 6-18 month age range when he was age 4.

Guess who has now entered that age range? And guess what she is playing with??