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.

Saturday, April 27, 2019

A letter

Dear Dan,

You were an unexpected blessing. I never saw myself as a mom. You made me see the world in a different way. You taught me what it means to love unconditionally. You wrote on my heart. I watched you grow and learn, as only you could. I watched you struggle. I was scared out of my mind every day that I wouldn't be able to say goodbye.

You taught me so much. I learned to stand up for myself, stand up for what I believed in.

You sent your sister to help me learn more of what you tried teaching me. I see you in her everyday. She sees you and plays with you.

Patience. Creativity. Fun. Presence. Love. Kindness.

Your 11’s are a message. A message to follow my instincts and my gut. A message to be the best person I can be to myself, dad and Shelby. A message to believe in myself.

I love you Dan. You will always be my baby, no matter how “old” you get.

Love, Mom

Sunday, April 7, 2019

April Showers (in the eyes)

Springtime always seems to bring me some tears.  It's an odd time of year to get sentimental and teary-eyed, but that's what grief is.

Unpacking the backyard firepit, cleaning up the yard.  These remind me of the fun times that Dan had in the backyard - driving around on his kid quad, chasing after us with sticks - laughing all the time.  I can't easily find it, but I remember putting him in snow pants because our backyard is usually soggy for most of April and sometimes into May.

Friday, December 7, 2018

December 7

This poem was shared with me today, for Dan's 12th birthday.

Mom to An Angel
Mommy, mommy,

I'm in heaven now,
God is keeping me safe and warm,
just as you did from the day I was born.
We need to cherish the memories,
till the day you're here with me.
Think of all the times you made me laugh,
and smile.

You made me the little boy I am today,
now let God take over he has his ways.
I'm an Angel now Mommy,
watching over you,
Oh I wanted to let you know I have
received my wings,

When we see each other again,
I will teach you how to use these things.
I want you to laugh Mommy,
and I will too.

Some days are tougher than others.  Today was one of those days.  Even our Elf "Love" knew we needed extra hugs.

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.