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.

Monday, May 9, 2016

Another Mother's Day

Mother's Day was yesterday.  My Facebook feed was covered with pictures of moms with their kids or adults sharing memories of their moms who have died.

I also saw many people post about remembering those moms who don't have their children with them...due to miscarriages, stillbirth, accidents,  or diseases.  I hope more people realize that this is one day that will always be difficult for these moms.  Having a living child does not change the fact that there is one (or more) that aren't alive.

I spent my weekend doing fun things.  My mom took me and my daughter (and the guys too) to see Daniel Tiger's Neighborhood Live in Friday night.  If you don't know what I'm talking about, you don't have toddlers.  Then Saturday morning was spent with Elsa and Olaf.

Saturday evening, we ran to the store so I could pick out a pot of mixed flowers.  While there Shelby picked out a Mother's Day card for me.  It had Cookie Monster on it.  And she was upset when my husband took it away to sign it.  That simple act...her picking a card...brought tears to my eyes.  Both happy and sad tears.  I realize with the little things she does like that, how much Dan really couldn't or didn't do.

So on that note, I hope all the moms had a wonderful day, in whatever form that takes for you.


Friday, February 26, 2016

Rare Disease Month

February is Rare Disease Month.

Here are some current statistics:
• 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
• 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
• 95% of rare diseases have not one single FDA/EMA approved drug treatment
• Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
• Rare disease is often referred to as an “orphan” disease
• Orphan or rare diseases are often not pursued by the pharmaceutical industry because they provide little financial incentive for the private sector to make and market new medications to treat or prevent them and because there are not enough patients to make research cost-effective
• It can take several years to diagnose a rare disease
• Rare Disease Day is on Leap Day. Fitting for rare diseases, the national awareness day is on February 29, a date that’s only on the calendar every four years. (It’s moved to February 28 on non-leap years.)

It's also nearing the end of this year's ESPN Infinity Coach's Challenge. Each year coaches select a non profit organization to raise funds for.  Matt Painter from Purdue University has completed for The Smith Family BReaK Thru Fund, a charity created to help fund research into Niemann Pick Disease to support their 3 children with the disease. It is easy to vote, and you can vote every day. There is no spam, no extra e-mails, and it's FREE!   Please take a few minutes each day for the next few weeks and vote at www.votemattpainter.com

Sunday, January 3, 2016

Need a Little Less Stress?

Need a little more control in your life?  Want to be more productive?  Check out Crystal Paine's Make Over Your Morning course!  Crystal is behind the Money Saving Mom blog.




So what is Make Over Your Mornings?  It's a 14-day (2-week) course that has a short video, a short workbook reading and then steps to implement immediately.  Each day is about 15 minutes.  Crystal launched this course in June, and I remember doing the course then.  I probably should do it again to rejuvenate my mornings.  This isn't a "one-size-fits-all" program.  This could easily be called Make Over Your Evenings.  It is just simple, practical strategies to take control of your life.

Do any of these sound like you?  Not sure if you really want to commit to the entire course?  Try Day 1 for FREE!  Yes, FREE!  And Crystal offers a money back guarantee.  So can you really go wrong for $9?
  • Do you often wake up feeling behind—before you even get out of bed?
  • Are you constantly frustrated that it seems like you are so busy, but you have very little to show for all your effort?
  • Are you worn down and worn out by all the hats you are wearing and balls you are juggling?
  • Do you wish you could find time to refuel your tank, improve your health, invest more into your family, or even just to slow down and breathe? 
  • You don’t have to keep living life feeling constantly behind, overworked, and overwhelmed!

You don't have to get up at some crazy time or stay up later than you usually do.  And yes, it really does only take 15 minutes a day to a better life.

I'm going back through my course. It's been 6 months and I need the refresher to start the year off right.  Between work, Jamberry, and Shelby, I'm starting to feel pulled in too many directions.  Want to join me?

* Affiliate disclosure:  I may be compensated if you click on the links in this post.

Thursday, December 31, 2015

Start the New Year off right!

This is a post I have been meaning to write all week - but I was spending time with my hubby and daughter - which was soooo worth it!

Now it is the end of the year/beginning of the year and we have all made some resolutions to help us be the best we can be in 2016. 


The Financial Renovation E-Course

Lauren and Mark Greutman (from I Am THAT Lady) are offering a FREE 4 video series on restructuring your financial lives called The Financial Renovation. Here are the details on the 4 videos:
  • Friday January 1st - HOW TO START A BUDGET
  • Monday January 4th - HOW TO STICK TO A BUDGET WHEN THEY HAVE FAILED IN PAST
  • Thursday January 7th - A COMPLETE FINANCIAL BLUEPRINT FOR 2016
  • Monday January 11th - WHY NOW IS THE TIME TO START  
Head on over to her website and sign up for this free video series!  This free e-course is for you if:
  • You want to learn how to budget and stick to it.
  • You want to save more money on your bills.
  • You want to learn how to get your spouse on board with your finances.
  • You feel like you are stuck and don’t know where to turn.
  • You want to get out of debt.
  • or… you just want a refresher on your financial health.
  • I will also give you an opportunity to go much deeper into learning how to get financial freedom in 2016.
I know that after you watch these videos you will want to sign up for her continuing 7-week video course.  She is offering some great bonuses in the 7-week course. But don't wait until February to start thinking about this.  These videos are only available until January 11th and the 7-week course is only available until January 15th!

Lauren was also on the TODAY show this morning sharing some of her favorite tips.

Both Lauren and Mark amazing people, whom I have had the pleasure of meeting a few times.  Lauren has also created these amazing $150 Aldi meal plans!  Following her over the years has helped us pay off some of the bills we had from Dan and helped us find some good deals for Shelby.


*Affiliate disclosure:  I may receive compensation if you click on the links in this post.


Monday, December 28, 2015

Mommy and Daughter love

As I was changing my Jamberry wraps tonight, Shelby climbed up next to me and kept asking for "stickies".  So I found some small pieces I had left.


She was so thrilled she ran running to Daddy to show him.  I am so thrilled to be able to share Jamberry with her.

While we are talking Jamberry, did you know that you can help children with disabilities receive therapy?  Every purchase of the Now I Can wrap will have $2 donated to fund grants to help disabled children attend a 3-week intensive therapy program.



Thursday, December 24, 2015

Christmas Eve or not

It's Christmas Eve and I really am not feeling all that festive.  I think the 70* we had today and lack of snow and cold is keeping me from really feeling like it is Christmas.

Shelby is tracking Santa using an app on my phone.  We took the "I hate Santa" 2 year old picture, even though all she talks about is "Santi" and "presents".



Presents are being wrapped and placed under the tree.  The Christmas train is being played with.  Things are looking a lot like Christmas around here.



I want to give her the best life and the best of me.  But it doesn't feel like I am.  Seeing her grow up, knowing that I'm missing all these things with her brother hurts. I wonder what he would have bought her, would it have been something he liked so that she wouldn't play with it? Or would it have been a Disney toy?  Something is missing, and that hole will always be there.

 

Monday, December 14, 2015

Help others and be beautiful

I know it's been a while.  It's the crazy, hectic (and emotional) time of year.  I will get back to writing about surviving grief soon.

In the meantime, I wanted to share this opportunity with all of you.  Many of you know that I am a Jamberry Independent Consultant.  I help women have beautiful nails without the time and expense of a salon.

Through December 31, Jamberry is offering 2 different sets of nail wraps.  Both sets will have $2 from each sale donated to the Now I Can Foundation.  You can read more about Now I Can here.  The funds donated are being designated to help cover treatment grants for families to participate in their 3 week intensive therapy program.  This video shows you what the Foundation does.

So what do these wraps look like?  You can purchase (U.S. and Canada only) both of them, one is a regular set, one is a junior set (for small nails) at my website.



Can you help children with all types of disabilities have the best lives they can?