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.

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 ❤️

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