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.

Tuesday, July 12, 2016


I posted this on the Facebook page I have for this blog.  I don't know where it came from or who wrote it.  It was seen by over 500 people with a bunch of comments and quite a few shares.

You miss the things I haven't done,
the goals not scored, or races won.
The steps my feet have never walked,
the words my lips have never talked.
In my wide eyes you know my fear.
You take my hand and hold me near.
In children, all around you see, the child that I may never be.
Not so able, tough or agile, often tired and much more fragile.
You see the tears I've often cried, and cried them with me, side by side.
Your heart is heavy for my trials, but you wear it well,
with weathered smiles.
I know that you know, I am enough.
But I know the bad days can be tough.
You thank God for giving me to you,
but you're sad for all I cannot do,
and not because you feel let down by me,
but you can't help wonder how I'd be.
if I could do what others do,
like ride a bike or run to you.
You think of all the things I'll miss
first dance, first love,
first date, first kiss.
Yet here I am, as I should be,
not missing out on being me.
Do not fret or worry so
and make your spirit tired with woe.
And when those nights are feeling longer,
lean on me until you're stronger.
Hold my little hand in yours,
peacefully we'll pass the hours.
For all we have is one another,
special child and care worn mother.
Nothing matters more you see,
than seeing all the life in me.
I don't need to be able to,
do the things that others do.
See the words I do not say,
in the smiles I give you everyday.
when I'm tired let me rest,
with my little head against your chest
and for that moment in that peace,
let your loving worries cease.
Look at what I can achieve,
and celebrate me, do not grieve.
Please do not be sad because,
I'm not the child I never was.
different isn't less you know,
and you're the one who told me so.
and some days will be hard to take.
And you'll  feel as though your heart might break.
but we'll bounce back,
we always do.
Because you've got me and I've got you ❤️

Tuesday, June 14, 2016

Feeling off

For the past few weeks, I've felt "off".  Not quite sure what I'm feeling.  Not sad, not angry, not upset, not happy.  I didn't know what the feeling was.

I know that I'm dreading the winter holidays this year...it's the year the pendulum swings the other way and Dan will be an angel longer than he was here.

Last night I figured it out.  I was going through my Facebook memories and I found one from 2012 that talked about the year before.  And another memory this morning from 2011.

This week was the beginning of the end.  This is the week Dan was admitted to the hospital and brought us to his Niemann Pick diagnosis in a few weeks.  Exactly 5 years later, the days of the week are lining up exactly.

There is no way to describe the emotion or feeling.  It's just a weird feeling of "off".  I guess that's part of grief.  Not quite knowing what you are feeling.

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
  • 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.