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.

Saturday, May 31, 2014

Celebrating Elks

Every May, the New York Elks hold their annual spring convention.  This year it was in Buffalo.  This is actually Shelby's 2nd convention.  She was 6 weeks old when we went to the one in the fall.

At the spring convention, the new State President is elected and installed.  There is a big celebration to mark the event.  Guess who got into the festivities?

Wednesday, May 28, 2014

Taking Control of Your Finances

Many of you probably don't know me or my background.  I am a licensed Certified Public Accountant.  In my non-blogging life, I have a wonderful government job with great benefits.

So this post is written from that point of view - the practical side of me.

Did you know??

Monday, May 26, 2014

5 For Five - May 26

So what is 5 For Five? In the short form, it is 5 goals you 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. I am determined to get these done before Shelby turns 1 in 3 months! I'm mid way through November, so I'm making progress...  Done!
2. Pre-schedule some blog posts. I did a few, but really need to do more.  I need to get the ideas down and then scheduled.
3. Cross off some items off my technology "to do" list. Yes, I have named my "to do" lists. It seems to help me manage them a bit better.  Yes! I cleaned out the garbage off my phone. I moved some of Shelby's photos too.
4. Make a list of summer clothes needs for Shelby. Done! And some were even purchased (thanks Mom!)
5. Make those phone calls! Nope. :(

I'm calling this a 3.5 out of 5.  Not too bad.  Really need to get the blogging one nailed.

So what are my goals for this week???

Sunday, May 25, 2014

Memorial Day

Many people think of Memorial Day as the start of summer. There are picnics and barbeques and parades.  But the real meaning of the holiday has been lost in the hustle of life.

Last year I wrote about the local Memorial Day parade and some of the history of Memorial Day.

Thursday, May 22, 2014

A Simple Way to Make Someone's Day

I have written about many people with Niemann Pick Disease. Unfortunately, most of the time I'm writing about when they become angels.

This post is different. I am writing about a young boy who loves to receive mail.

Monday, May 19, 2014

5 for Five - May 19

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

Here were the goals from last week:

Saturday, May 17, 2014

Guardian Angel Wylder

A few weeks ago I wrote about five rainbow children - babies born after the loss of another child.  Today's post is about Wylder and Koa.

Warrior Wylder was affected by Niemann Pick Type A.  This tough little guy started a Warrior movement in his parents, who created Wylder Nation to fight Lysosomal Storage Disorders.

Dad Steve and Mom Shannon
at the NNPDF Conference in Baltimore
August 2013

Wednesday, May 14, 2014

Who couldn't use a few extra dollars?

My mother cut grocery coupons when I was younger. I learned the basics from watching her. I've always couponed to an extent, but I really kicked it up a notch when Dan started getting sick and we needed to dedicate dollars to doctor visits.

Occassionally I have posted a few of my amazing grocery trips. See here and here for two. I wouldn't be able to do that good without some help from some of the great coupon bloggers in my area.

One of my favorite bloggers, and someone I would also consider a friend, has published an e-book on how to coupon. Lauren Gruetman (from I am THAT Lady) has published her first e-book, How to Coupon Effectively. At $8.97, it is a great deal if you want to learn couponing basics.

Everything she talks about in her book she has done. She slashed her grocery budget from $1000 a month to $200 a month to help her and her husband get out of debt and allow her to be a stay-at-home mom.

In the book she talks about 7 important things:
1. How to avoid the #1 mistake most people make when using coupons.
2. Why Coupon? The hourly wage way of thinking about couponing.
3. Where to find Coupons. Learn how to get coupons for free!
4. The best digital coupons. Discover the best 6 money saving apps.
5. How to organize your coupons. The best 4 ways to organize your coupons to save more money.
6. How to Create a Successful Grocery Budget. Simple tips to set a grocery budget that you can actually stick to.
7. Meal Planning Strategy. How to meal plan around sales and coupons to help you save 50% or more off your grocery budget.

A few quotes from the book:
"Almost everyone who starts couponing does so with the goal to save money, but many don’t know where to start or how to do it effectively. Couponing is a learned skill, and it takes time to master it. It takes practice to establish an effective routine that works for you
and your family."

"One common misconception about couponing is that you have to have a lot of free time in order to save a lot of money. This simply isn’t true. You decide how much time you want to devote to it. You can spend 45 minutes per week or 10 hours per week – it’s all about developing a system that works around your schedule. In this book, I aim to teach you how to do this in two hours or less and I know that by following my simple tips you will see success no matter how much time to put into it."

The book is about 40 pages and easy to read and understand. Lauren provides some great practical tips and plenty of space to make notes. She also gives you lots of options to contact her to ask questions. She doesn't get into the deep details of couponing, but how to start to make the most of your time.

Buy Now

You don't need any special gadgets or anything to read the book. You can download the book immediately or wait for the email link. I saved my copy to my computer so I can look back at it at any time. Even for me, someone who isn't an "extreme" couponer, but does fairly well, found something new in her book.

Tuesday, May 13, 2014

A New Angel

I really hate writing these posts.

It is with great sadness that tell everyone that Mariarosa Martino, an adult with Niemann Pick Type B died last week after complications from a recent surgery.  Her obituary and a place for condolences is here: http://www.mhfh.com/martino-mariarosa-assunta/

I remember meeting Maria at the NNPDF conferences.  She also purchased some jewelry during my fundraiser for Dan last year.

Mariarosa on the left, Rebecca on the right

Rebecca White, a fellow Niemann Pick mom, was creating a book of Niemann Pick families.  Mariarosa shared the following with Rebecca:

I was diagnosed with Niemann Pick Type B when I was 3 years. I am currently 28 and have been managing this condition my entire life. Niemann Pick has affected me physically, emotionally and spirituality. Physically, I have an enlarged liver and spleen, weakened immune system, chronic fatigue, & osteoporosis to name a few. This condition has made me question my self confidence and my life purpose. I have felt despair, pain but most of all hope. It is through acknowledging and accepting how this disease has affected me, I have been able to embrace my true self and purpose. I have learnt the importance of people, compassion, humility, love, strength in self-love, and strength in accepting this disease as a part of me and not defining me. I have learned to embrace my true self which includes expressing grateful to wake up each morning and embrace the beauty of the sun. It has taught me to be present today and not to be consumed by the past or future, to have the courage to accept the things I can not change, learning and realizing that a good life is not measure in time, money or materials but in being true to who I am. I dedicate myself in helping other by sharing my story, being open to all life experiences. I have learned that my body is just a vessel and that though I have this disease, it is my body that is sick and not my spirit. It is when I have been most ill I have learnt my true strength and the strength of humanity. It is this disease that though not upon anyones choice has brought a community of amazing spirits, souls and individuals that have left their imprints upon the world that very few every leave. I continue to strive for a cure for all of us affected and am dedicated to continue raising awareness. I owe my ability to persevere to those written within this book because it is their stories that continue to fuel my courage.

Monday, May 12, 2014

5 for Five - May 12

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

Here were the goals from last week:

Sunday, May 11, 2014

Happy Mother's Day

To all those who are moms.

Whether your child is with you are not, being a mom is a difficult job.

Saturday, May 10, 2014

Navigating Insurance Issues Webinar - Part 2

On April 30, Global Genes sponsored the first part of a webinar on Navigating Insurance Issues with Rare Diseases.

On May 28, the second part of the webinar will be presented.  Even if you can't attend, register for the program so you will be notified when slides and audio are posted.

Navigating Insurance Issues Part 2 Webinar

Date:  May 28, 2014
Time:  10:00 am PT / 1:00 pm ET
Register here!

Health insurance coverage for patients with rare diseases has undergone significant changes in recent years. At the forefront are changes in how the insurance industry designs and delivers benefits and new coverage options created by the Affordable Care Act.

This upcoming webinar will not only provide further discussion on your questions and concerns following Navigating Insurance Issues Part 1 webinar, but also detail points to consider when attempting to overcome obstacles to accessing your provider or treatment in both government and commercial health insurance plans. It will also include a discussion on shrinking provider networks and helpful information on how to navigate the appeals process, should one or more of your formerly in-network providers be moved out-of-network.
Find out how you can better evaluate what option is best suited for your individual needs by joining us on May 28th.

Panelists: TBD

Register here!

Thursday, May 8, 2014

A Change in Attitude

Last fall I was given the opportunity to read a preview copy of Say Goodbye to Survival Mode: 9 Simple Strategies to Stress Less, Sleep More, and Restore Your Passion for Life by Crystal Paine, the woman behind Money Saving Mom.  I also wrote about her 7-Day Challenge during the winter.  And every week in my 5 for Five post, I reference her SMART goal setting.

But the book is really about approaching your life with a different attitude.  And until Saturday May 10, you can get the Kindle book for only $2.99!

Wednesday, May 7, 2014

Nine Months

Today is Shelby's 9 month birthday. It's hard to believe that is has been 9 months already. Emotionally it is also difficult. I know all kids are different, and they progress differently. But in looking at some pictures over the past few weeks, it is hard to miss the signs of Niemann-Pick now. At the time was a different story.

Monday, May 5, 2014

5 for Five - May 5

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

Here were the goals from last week:

Sunday, May 4, 2014

It's been a long week

Have you ever had a day or a week that just drags by? That was this past week for me.  

There were so many little things going on- lose ends that needed to be tied up on quite a few projects- that it just never seemed to end.

Saturday, May 3, 2014


Sorry I've been quiet this week.  I've had a bunch of little things going on that add up to a lot of time.  I have a bunch of posts in draft, it's just a matter of putting the finishing touches on them.

I hope to get a few posted this week. Thanks for sticking around during the quiet time.