Wednesday, April 16, 2014

Tears of Joy and Sadness

I knew this was going to happen. And I know it won't be the last time it happens. Actually, I'm sure it will happen quite a bit more.

Watching Shelby explore and learn brings tears to my eyes.


Tuesday, April 15, 2014

Easter is Almost Here!

For me, Easter is the beginning of Spring. Yes, I know the calendar said it was spring a few weeks ago, but here in the Northeast, that doesn't mean much when we can still get cold and snow.

But Easter is usually in mid-April. And by then most (if not all of the snow) is gone, and the weather is starting to warm up. We can open the windows and sit outside. Some of the early season flowers are starting to grow. So for me Easter means spring.

Monday, April 14, 2014

5 for Five - April 14



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:

Friday, April 11, 2014

Let's Make Aug 30 National Grief Awareness Day

Angie Cartwright from Good Grief Worldwide and Grief The Unspoken is trying to make August 30 National Grief Awareness Day.  This day is designed to increase awareness and education of grief of all types, not just child loss.  (There is another day for child loss.)

Wednesday, April 9, 2014

What an Elks Year!

It was about this time a year ago I was writing about the honor my husband received being elected Exalted Ruler (CEO) of our local Elks Lodge.

His term technically ended on March 31, however the official ceremony installing the new Exalted Ruler was on Sunday, April 6.

Here are some highlights from the past year:

Monday, April 7, 2014

5 for Five - April 7



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, April 5, 2014

Mommy wants to sleep!

I have had 7+ months of sleeping bliss.  My beautiful girl has slept great, even in the hospital~ 10-12 hours a night.

Until recently.

Thursday, April 3, 2014

It's Tax Time!

You hear this old saying alot this time of year:
there is nothing certain except death and taxes
There are less than 2 weeks left to file your income tax returns for this year.

Wednesday, April 2, 2014

Are you a bike rider?

On Saturday, May 3, 2014 there is a Million Dollar Bike Ride to benefit world-wide rare disease research. This bike ride is on the University of Pennsylvania campus in Philadelphia.


Monday, March 31, 2014

5 for Five - March 31



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, March 29, 2014

Guardian Angel Monica

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

Friday, March 28, 2014

Teleworking Benefits

I am incredibly lucky to be able to telework from home one day a week.  Couple that with my oddball work schedule which gives a full weekday off. So I have 3 (non consecutive) weekdays at home every 2 weeks.

I started my oddball work schedule about 18 months before Dan died and I began teleworking 1 day every other week a few months before Dan died but it is nice to now have that 3rd day.

So here are my benefits to teleworking: 

Thursday, March 27, 2014

Rare Disease Webinar on Navigating Insurance

Global Genes has announced a new webinar on Navigating Insurance Issues related to Rare Diseases. I have copied the webinar information below:

Navigating Insurance Issues Webinar
Date: April 30, 2014
Time: 10:00 am PT / 1:00 pm ET

Register today

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.

Whether you are continuing with an existing insurance plan or newly enrolling in a Marketplace plan or Medicaid, there are lingering questions about how plans will function and what individuals living with rare diseases can expect from these new insurance options.

Find out how you can better evaluate what option is best suited for your individual needs by joining us on April 30th. You’ll learn about the different types of health insurance and emerging trends in benefit design and affordability for individuals with rare diseases.


The webinar will help you:

Better understand health insurance and the roles of individuals, insurance plans, employers, and government
Learn how health insurance has changed in recent years
Determine how to be evaluate plans to meet your needs as a rare disease patient or caregiver


Panelists include:

Moderator: Michael Illions, Pediatric Hydrocephalus Foundation
Larry LaMotte, Immune Deficiency Foundation
Joel White, Horizon Government Affairs
James Romano, Patient Services Incorporated (PSI)

Register today!

Wednesday, March 26, 2014

Being an Angel Mom

Another Angel mom posted this today to her Facebook page. She, unfortunately, had to lose 2 girls to Niemann-Pick Type C. I have shared this with her permission to help raise awareness.

There are no words to adequately describe how you feel or live your life each day, but she does a good job to trying to explain.

I can't believe today at 5:20 pm will mark 7 years that my precious Bailey Grace grew her wings and flew to heaven. It still doesn't feel real. There is not a single second that I don't think about her and wonder who she would have become.... This day 7 years ago all my wishes, hopes, and dreams died with her. It is not fair that I stare at a pink urn everyday and to be reminded of a life that once was and that my precious little girl is never coming back. A reminder of my broken heart that will never ever heal. Days feel like years and years feel like centuries. Why does any mom have to feel this?? When will it feel normal again?? Why do I feel like my life is at a stand still and everyone else's has moved forward??