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.

Sunday, May 6, 2018

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.



Tuesday, May 1, 2018

Book Review: Beauty in the Broken Places


I  have been fortunte to be on several launch teams.  I joined this book launch team for Beauty in the Broken Places because I could relate to Allison's journey into being an unexpected caregiver.  When I received my copy to read, I kept putting it off because I didn't know if I wanted to re-experience the emotions what I went through with Dan - the sudden earth-shattering news, the loss of the life you expect to have, and your life being changed unexpectedly.

I eventually sat down and got completely immersed into Allison's and Davy's life - from the time they met, through his unlikely stroke, and into recovery.  In reading the words, it felt like an old friend talking to me. Allison has an amazing way with words, an easy conversational style that sucks the reader into the story.

There were times I cried, because I had felt the same feelings.  There were times I smiled and laughed, because, wellw ell just can't make up what happens in life.  It was hard to put the book down, even knowing how it ends.

But, overall, it's about the strength of two people who fight through the challenges that life throw at them.  Their marriage goes through challenges and they, and their marriage, come out stronger in the end.

If you have had marriage challenges, health challenges, or love to read memoirs, this book is definitely for you!

Here are just a few quotes from Lee Woodruff's forward and Allison's text:







Friday, April 20, 2018

Child loss awareness in an unexpected place

I'm sure almost everyone has heard that Barbara Bush died recently.  Have you read her obituary or any stories on her life?  I can tell you that I learned something the other day while reading her obituary.

She lost a daughter at age 3 to leukemia.

Yup.  One of the most respected First Lady's experienced child loss.  One article I read said that she refused to let anyone cry at her daughter's bedside while she was in the hospital.  Another article said they traveled the country looking for treatment.  Guess what?  Many parents of those affected by rare disease do the same.

What really caught my eye this morning was an image of Ms. Bush greeting her daughter Robin in heaven, with both of them running to each other.  Have you seen it? You can see it in this article. There are many other articles with the same image.  I chose this one because of the 2 videos in it - one of Mrs. Bush talking about her daughter and the other a letter.

Although many years have passed, talking about child loss and grief is still a difficult subject.  How many more years will it take to be an acceptable topic of conversation?

Thursday, March 1, 2018

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.


Sunday, February 18, 2018

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.

Sunday, January 21, 2018

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".

Thursday, December 14, 2017

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.