Bereaved Mother's

The Mother's Day I was pregnant with Dan, I looked at all the Mother's Day cards and couldn't wait for Dan to pick one out or create one in school.  He would be so proud of what he picked out or created.  

I had 5 Mother's Day's with him.  5 glorious days - with the last one just before his diagnosis of Niemann-Pick.

Then came the Mother's Day after we was gone.  One of the worst days I have had.  I felt like a failed mom - I couldn't keep my child safe, I couldn't protect him - I had failed as a mother.

The Mother's Day I was pregnant with Shelby, I started to look forward to those hand picked or hand created cards.  I was confident that I would have many years of those cards to look forward too.  My job as a mother wasn't complete - I was given a second chance.

The past couple of years, I have seen posts and articles about International Bereaved Mother's Day.  I usually see them the day of, and I never realize when it is coming.  I just realized that it is the 1st Sunday in May.

Anyway, today is that day - International Bereaved Mothers Day (#internationalbereavedmothersday).  Yes, it's a real day.  Would I say "Happy International Bereaved Mother's Day"?  Um, no.  But I have seen that phrase today.  Must be from someone who just didn't realize what it meant.

I found a great article on Huffington Post today.  Click here to read it.  You can visit the official page about this day here and some additional "holiday" information here.

Another Rare Disease Day is done

Usually I post quite a few items related to Rare Disease Day, held on the last day of February.

I obviously didn't this year.  It wasn't for lack of wanting, it was for lack of knowing what to write.

One year I focused on those with Niemann-Pick Disease.  Another year, I focused on a bunch of rare diseases.  I've even included a list of some of the rare disease statistics.  Some of these articles are still some of my most popular.

Other than losing quite a few of the people I featured, not much has changed in the rare disease world.  I've been blogging for about 6 years, and not much has changed. Yes, there are now some treatments and some clinical trials for some of these rare diseases.  Yes, awareness has increased.

Rare Disease isn't just an awareness campaign once a year - it is a daily struggle for so many.  And so many are dealing with ultra rare conditions, they don't have a name yet.

The 2018 theme was Show Your Rare, Show You Care.  We all need to be a bit more caring to others, no matter if they have a rate disease or not.

I've Been Thinking book

I've been fortunate to be asked to be part of a book launch team for Maria Shriver's new book, I've Been Thinking, due out February 27, 2018.

In one section she talks about grief and grieving.

Grief is not linear or time bound.  Sometimes the unexpected causes grief to bubble to the surface.  It never goes away, it is always under the surface.

And it is a subject that needs some talking about.

Get Over It

Thankfully I have never actually heard the words "Get over it".  There have been many people, by their actions, who have made me feel like I should be "over it".

Well, here's the news flash - there is no "getting over" the loss of a child.

I read a great article about "getting over it" the other day.  I encourage everyone, especially those who have never lost someone close to them, to read this article.

The loss of a parent is similar to the loss of a child.  There is one significant difference - a parent had a lifetime of experiences - including going to school, getting married, having kids, etc.  Losing a child also means losing all those experiences.  It's a very different grief process, one that you never "get over".

Melancholy

This time of year always makes me think about the past year and I always get a bit melancholy.

This year it's hitting a bit harder.  I was going through some "On This Day" posts this week.  I think I realize why.

2011: I spent almost 24 hours editing videos and saving them to CDs to bring to Dan's doctors.

2014: Dan's urn arrived and we were finally able to give him is permanent resting place.  I remember ordering it as soon as my Jamberry bonus arrived and Shelby kissing the bag of ashes (at 16 months) and saying "I love you".

This meteor shower last night also didn't help with the emotional balance.  Plus the frigid weather is keeping me huddled up with comfort clothes and food.

Shelby doesn't quite understand why mommy locks herself in the bathroom at times.  Sometimes a deep cry is healing.

The end of October

The end of October Awareness Month is here.  That doesn't mean that I stop talking about Niemann-Pick Disease or my experience or asking for financial support for the families being helped by the NNPDF like we were.  Here are the final quick facts for this year:

October Awareness continues

If you have followed this blog enough, you know that October has a push for Niemann-Pick Disease Awareness.

If you are new, you can read the detailed story as to why this is so important to me.

For the short version, grab a tissue.  My son was diagnosed with Niemann-Pick Type C at age 4 1/2.  He died from disease complications before he turned 5.

Well before I knew this rare disease existed, and well before we were personally affected, October was designated as Niemann-Pick Disease Awareness Month.  We have an uphill battle each year, against some other more well known diseases. 

But the underdog has continued to rise - with your help.  By sharing my blog posts, sharing from the National Niemann-Pick Disease Foundation Facebook page, and donating, the disease is being identified earlier and treatments are becoming available.

So thank you.  If you are an affected family, please reach out to me.  I am happy to listen, talk, share my experience, and help you find resources to support you.

October Awareness - Vision of Hope

The National Niemann-Pick Disease Foundation has been around for 25 years, providing support to families and funding promising research.

In recognition of that, the Vision of Hope Campaign is encouraging donations of $25 in recognition of the 25 years.

In addition, I am giving 25% of all Jamberry sales during October to the NNPDF.

And I can't forget about the information squares for this week:

October Awareness has begun

Every October I post information about Niemann-Pick Disease.  October is the month selected to share Awareness.  Yes, we are in an uphill battle against some other awareness months.  But we persevere.

This month, I am donating 25% of all sales from my Jamberry business to the NNPDF.  In addition, my entire commission is donated for my Niemann-Pick nail wrap and a coordinating lacquer, So Presh.  Go check them out.

Here are the first 5 facts for October. Share them from new new NNPDF Facebook page

Diapers

Dan was in diapers from the day he was born (premmie) to the day he died (size 5/6).  I was fortunate to have family help pay for them for many years and then NYS Medicaid reimbursed me for some as well. 

Those families with children who have special needs have to find a way to pay for them until at least age 3, sometimes longer. 

 

The need is there for more  than just those with special needs. Can you believe that 1 in 3 families have to make a choice between buying diapers and buying necessities like food or electricity.

Let's make sure all babies have enough diapers.  Order some holiday gifts at http://jillflinton.jamberry.com and help support No Bottom Left Behind Diaper Bank!

Conference is over... Our work is just beginning

During May, June, July and early August, I spent countless hours organizing materials, helping with Conference logistics and making sure families were well supported.

One major aspect of the conference is our memorial table.  This year there were 9 frames.  Still 9 too many.

Progress is being made, slowly.  In the 5 years we have been going to the NNPDF Conferences, we have gone from 0 clinical trials to 4.  There is still much that needs to be done.

The other big highlight of the weekend is the Gala dance.  And a little girl enjoyed every minute of it!

October is coming.  That means awareness and a campaign: $25 for 25 years of support to families. Please watch for ways to contribute.

Middle of May means....

For many, it means Mother's Day, celebrated on the second Sunday in May.

Did you know the first Sunday in May is International Bereaved Mother's Day?

I saw this article the other day, What Grieving Mother's Want For Mother's Day. Mother's Day is recognized as a celebration of being a mother. But what about those who don't have their children to celebrate? Are they any less than mother?

So between last Sunday and this Sunday, please reach out to a mother who has lost their child.

It's never easy....

I know I vowed to write more. Living with a preschooler, working, and spending time with family have a way of making the time fly.

Until recently.  The first few weeks of April have been hard.  Really hard.

5 children, 1 week

Life is difficult, seeing this cluster reminded me of how difficult life can be and know much we need to just live it.

Five families need to move forward without someone.  It's times like these I am happy to be a part of the Niemann-Pick community. We all "get it" and many of us have been where these families now are.

So I ask all of you to please hold these families in your thoughts, as they will need support to get through some of the hardest days they will ever know. 

It's October - Post 4

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

It's October - Post 3

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

It's October - Post 2

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