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, October 11, 2016

It's October

Ok, so we are over 10 days into the month.  Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

Friday, September 16, 2016

Save or Spend?

Growing up I was a saver.  Even after I got married, we saved.  Then somewhere along the line we started spending. And then Dan was born, and we spent more for co-payments and medical supports that weren't covered by insurance.  And now Shelby.  Thankfully we have been blessed with a basement full of toys, some of which were Dan's, others were hand me downs.  We have also been blessed with family and friends from near and far who have purchased clothes and diapers.  We did not ask for these, people just love us and love Shelby.

Which leads me to a question, or a few questions.  Would you be able to ask for financial help?  Or admit you are a saver or a spender?  Would you be able to pull youself out of a financial hole without bankruptcy?

If you've read my blog for awhile, I've written about Lauren and her website I Am THAT Lady.  Lauren started her website about 6 years ago as another piece in her quest to get out of the credit card debt that she put her family in.  Lauren has also been on Dr. Oz, the Today Show, and Good Morning America, among other shows.

Well, Lauren has a new book out, The Recovering Spender which I was thrilled to be able to preview.  In it, she details how she got into the debt (and it isn't as simple as "I charged everything on my credit card.").  After she very candidly opens up about her life, and her spending addiction, she walks you through 12 steps that she took to get herself out.  And stay out.

It's one thing to be in debt and get out.  It's another to understand why you got in debt in the first place and how you can stay out.  Lauren walks you through all the steps to understand your reasons for spending.  She makes you evaluate every dollar spent.  She helps you assess what are need and what are wants, and are your needs really your wants?  She gives you actual practical steps to take.  This isn't theory or "pie in the sky" advice.

For example, Step 5 has you printing all your credit card and bank statements for a few months and categorizing each transaction so you get an average amount of spending per category.  Later steps help you identify where you can lower your spending in certain categories.

These steps are easy enough for anyone to do them  - from a fresh out of school college student, to an established career person, to a family, to grandparents.

Even if you consider yourself a saver, or are on good financial footing, reading through her book and going through the steps if well worth it.

And for a limited time, Lauren is giving away over $100 worth of freebies if you buy the book.   These freebies include budgeting and planning worksheets and her other books!  After you buy the book, head on over to the book's website to claim your goodies.

Thursday, September 8, 2016

Do you read Huffington Post?

Huffington Post had an article recently on grief.  You can read the article here.

The author writes about a bunch of myths and realities of grief.  Anyone who has experienced grief (which will be all of us eventually) can relate to at least a few of the situations in the article.

Here are a few quotes from the article that stood out to me:
It’s become easier to hide our emotional depth than to reveal our vulnerability and risk harsh judgment. When asked if we are alright, it’s simpler to say yes and fake a smile then, to be honest, and show genuine human emotion.
Western culture asks us to suppress our pain, stuff our emotions and restrain our cries. Social media has given many who grieve the opportunity to open up dialogue, be vulnerable on a large scale level and take the combined heat that comes with that honesty. As a whole, society does not want to hear or accept that grief stays with us in some capacity for the rest of our lives. Just like so many other aspects of our culture, we want to hear there is a quick fix, a cure-all, a pill or a healthy dose of “get over it” to be handed out discreetly and dealt with quietly. 

Friday, August 26, 2016


Do you remember  bringing the kids to the doctor and being asked if they were doing certain developmentally appropriate tasks?  Like crawling or walking or using multiple word sentences?

For many years, I was always saying that Can wasn't doing something he should be doing...whether it was throwing a ball or potty training.

At her 3 year visit, my beautiful daughter was doing everything she was supposed to be doing on the developmental checklist.

So this is what normal is supposed to be?

I'm not used to normal.  I'm not used to being told "no" in a preschooler tantrum.  I'm not used to sitting and coloring.  I'm not used to make believe stories and playing and sharing toys.

I love all these things.  Yes, I'm exhausted. But this is what normal is.

Monday, August 15, 2016

Another year

We just returned from the most recent NNPDF Family Support and Medical Conference.  This year we were in Danvers, MA.

Every year I meet new people, see old friends ("family") and we all feel safe.  It's a place to learn from the research, learn from each other, and not be afraid to share your thoughts and feelings.

Among all the sadness, with the memorial service and seeing kids you saw walking 4 years ago now in wheelchairs, there is always fun.  We celebrate life, we celebrate each other, we celebrate milestones.

Wednesday, August 3, 2016

Moving On?

I stumbled across this great blog post this morning.  You can read it here.  It's a reminder that angel parents are not broken and we will never be the same.

It's fitting for that reminder this week.  A birthday party for a 3 year old (yes, she is 3!) and then off to the NNPDF conference.  My emotions will be all over.  I think I need my Niemann Pick family this year, even though there are more angel parents and more affected children and I can see the disease progression.  It's comforting to know that others have walked in my shoes and understand and don't judge.

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 ❤️