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.

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. 

This sucks

As I'm sitting here looking at Shelby napping and the artwork on our walls from her playing with pens, markers, and crayons, I realized what I won't experience and what I will.

A few weeks ago, I picked up Dan's urn to bring it to the bedroom and Shelby reached up and wanted to hug it and carry it. I let her hug it, but it is still too heavy for her to carry.

That's when it hit me.  This is all she knows of her big brother.  All she has is pictures and what we tell her.  Kids are known to see into the spirit world, and I'm sure Dan has been to see and play with her.  I hope she doesn't lose that ability as she gets older.

The realization that Shelby is now doing things that Dan did, and some things that he will never do, also hit me hard the past few weeks.  Her laugh reminds me of Dan. She is throwing things like he did (typical toddler).  But he never really mastered holding a crayon or drawing.  She has masterpieces on the walls.

Every parent compares their children, and when they did certain things.  I am quickly losing that ability. By next year it will be gone.

This is supposed to be a joyful time of year, and Shelby helps remind us of that. But it is also a difficult time of year for so many. Grief never ends.

Can you imagine?

I'm guessing that most of you have lost someone close to you. Whether it was a parent or a close friend.

I don't know how many of you have lost a child.

It is hard to imagine if you haven't experienced it. Now try imagining losing 3 children.

Unfortunately for one family, that is the reality. Three of their four children are NPC angels.

The Smith family created the Smith Family BReaK Thru Fund in honor (now memory) of their 3 children fighting NPC - Brandon, Riley and Keaton.  Over the weekend, they said goodbye to Keaton.

The Smith family had a close relationship with Coach Matt Painter at Purdue University.  Coach Painter won the Infiniti Coach's Challenge this year, and just  last week picked up the big check.

Please keep the family in your thoughts this week.

You can read more about the BReaK Thru Fund here: http://www.breakthrufund.org/

You can read Keaton's obituary here: http://www.soller-baker.com/memsol.cgi?user_id=1588635

A Second Angel

This has not been a good week in the Niemann Pick community.  We lost another child to complications this week.

This is a family I have met a few times, we only live an hour or so apart.  Every child lost hurts, but this one hurts just a little more.

Ashlyn joined her brother Zachary on March 25.  She was almost 7 years old and had recently started school.

You can read her obituary here.  Although not requested, I'm sure they could use some support at their GoFundMe page to cover some of the funeral expenses.

The Newest Angel

Tristan Lindsey
04/09/2002 ~ 03/25/2015

Tristan Lindsey, beloved daughter of Tracy & Derrick Lindsey, lost her battle with Niemann-Pick Disease type C on March 25th, 2015 at the tender age of almost 13 years.

In remembrance of her daughter, Tracy lovingly wrote:
"It is with a peaceful heart that I share our daughter Tristan peacefully returned home to our Father in Heaven. She was such a blessing to our family and everyone who knew her. Her beautiful smile and eyes that could say a million words with out her ever speaking, will forever be missed. I know she's running, playing and eating everything in sight. Thank you everyone for loving our baby and loving us as well.
~ Love the Lindsey Family"

I had the pleasure of meeting Tristan and her family in Nashville a few years ago at the NNPDF conference.  The family was easy to spot in their bright yellow shirts.

Arrangements have been made for Tristan. The visitation will be Friday from 6-8 and the service will be Saturday at 2 at Croley Funeral Home in Gladewater, TX.  Her obituary is here.

Rare Disease Day

Today Is Rare Disease Day.  It is always the last day in February, the rarest month of the year.

This is my angel, my inspiration for this blog.  Please take a few minutes today to think of all those who have a rare disease.  Combined, those with rare diseases out number the number with AIDS and Cancer COMBINED!

I am wearing that I care a little differently this year.  My headband is from my friend Tia, who has a great shop at Hart of Karen.  My nails are 2 custom designed Jamberry nail wraps.  The deep purple was designed by Kacey Lynne Tuls for Quinn Madeline Inc, in memory of a sweet little girl.  The other nail wrap is the periwinkle one I designed for all Niemann Pick Disease families.

So what did you do for Rare Disease Day?

More goodbyes

I have written about Isaiah Atkins a few times:

2014 Rare Disease post here
A Random Act of Kindness here

Unfortunately, I am not writing a happy post now.

Isaiah "Zay" Adkins
01/24/2004 ~ 02/05/2015

Isaiah Adkins, known lovingly by his family as Zay, lost his battle with Niemann-Pick type C on February 5th, 2015 at the tender age of 11 years.

Zay will always be remembered as a treasured son, and a beloved sibling who was always ready with a sweet smile for anyone who had the pleasure to know him in his short time with us. 

His mother, Angela Tackett, writes adoringly about Zay and shared these thoughts about him:

"What comes to mind about Zay is that he never met a stranger or other families whose hearts he didn't touch. He loved the Lord and praised him often. As Zay grew, he was full of love and spread happiness to everyone he was ever in contact with. He is greatly loved and missed by all."

A time of Goodbye

It's been awhile since I posted one of these awful entries....and this one is as bad as they come.... and it isn't even timely.

Three handsome boys.  Two are gone, only one remains.

Brisan Stults (in the center), lost his fight with NPC on March 4, 2014. Brother Parker (on the left), lost his fight on January 23, 2015.

There isn't much more to say other than head to the family website at http://www.bripardun.com and read the touching stories.

December 26

Some people call December 26 Boxing Day.  Others call it "Return All The Unwanted Christmas Presents" Day.

As I was scrolling through my Facebook feed yesterday I realized that for a few families it is very bittersweet.

Tree Decorating

We set up our Christmas tree a few weeks ago.  When we brought it upstairs and put it together, we were greeted with this surprise:

A teddy bear and a dove that were still stuck inside the branches near the top of the tree.  These aren't small ornaments either.

So we left them there and decorated around them.  And of course we had some help....

The train set is a Christmas Geo Trax set that we bought for Dan and he enjoyed it.  We left most of the smaller pieces in the box this year but Shelby does carry the big remote around with her.

Finally Home

When Dan died 3 years ago, the only things we knew were which funeral home we were going to use and that he was going to be cremated and brought home because he had never been left alone during his lifetime and we were weren't going to leave him alone in death.

Guardian Angel Trek

A few months ago I wrote about five rainbow children - babies born after the loss of another child.  Today's post is about Trek and Vesper.

You may know mom Chelsea and dad Jarrett from their travels around the world or the books Jarrett has written.


 Like me, Chelsea is experiencing life with a girl - and all the pink frilly things!

Not only does this beautiful girl have are angel big brother Trek looking out for her, she also has 2 other older brothers who love her.



Stop over and read Chelsea's blog at oursonnylife.com to keep up to date on Vesper.

In Memory

A new NPC Angel

It has been some time since I have had to write one of these angel posts.

I had the pleasure of meeting Mindy and her family in both Nashville in 2012 and Baltimore in 2013. I even wrote about Mindy in February during Rare Disease Month.

Malinda M. “Mindy” Fagan , age 15, of Michigan Center, earned her Angel Wings to Bloom into Heaven on July 23, 2014 following a lifelong illness. In her final days she was surrounded by family and friends that she had touched in a small way throughout her short but very memorable life. She is survived by her Daddy- Allen, Mommy-Ronda, sister - Allie, two brothers - Justin (Kayla) and Kyle (Tabby), Papa - Ron, Grandma - Linda and several aunts, uncles and cousins. She was preceded in death by her grandma Char Roebuck and Grandpa Allen Fagan Sr. Mindy showed us how to persevere with her beautiful strong willed smile, her strength and her ability to overcome all challenges. She was the strongest of fighters. She loved being with her family, friends, music, camping and cuddling. Services celebrating her life will be held at the First Church of the Nazarene, 3905 Clinton Road, Jackson on Friday, July 25, 2014 at 11 am with Pastor Rod Walker of the Harmony Baptist Church officiating. Visitation will be at the funeral home Thursday, 2-8 pm and at the church one hour prior to service time. Contributions in Mindy’s memory are directed to the NNPDF, PO Box 49, Fort Atkinson, WI 53538 –www.nnpdf.org

Nichols-Arthur Funeral Home
820 Fifth St
Michigan Center, MI 49254

The full obituary and guest book can be seen here.

There is a Go Fund Me page set up to help defray some of the funeral expenses. Mindy's grandma died a few weeks ago too. Her grandma was a big part of her life and traveled with her to Baltimore where my husband had some great conversations with her.

Dan Growing Up

Here is a Shutterfly photobook of age 3.5 to 4. Looking at these pictures now, you can really start to see how NPC is taking its toll.

Click here to view this photo book larger

Start your own Shutterfly Photo Book today.

Wordless Wednesday

There are many link ups for Wordless Wednesday's - where a picture is supposed to say it all.

Guardian Angel Wylder

A few weeks ago I wrote about five rainbow children - babies born after the loss of another child.  Today's post is about Wylder and Koa.

Warrior Wylder was affected by Niemann Pick Type A.  This tough little guy started a Warrior movement in his parents, who created Wylder Nation to fight Lysosomal Storage Disorders.

Dad Steve and Mom Shannon

at the NNPDF Conference in Baltimore

August 2013

A New Angel

I really hate writing these posts.

It is with great sadness that tell everyone that Mariarosa Martino, an adult with Niemann Pick Type B died last week after complications from a recent surgery.  Her obituary and a place for condolences is here: http://www.mhfh.com/martino-mariarosa-assunta/

I remember meeting Maria at the NNPDF conferences.  She also purchased some jewelry during my fundraiser for Dan last year.

Mariarosa on the left, Rebecca on the right

Rebecca White, a fellow Niemann Pick mom, was creating a book of Niemann Pick families.  Mariarosa shared the following with Rebecca:

I was diagnosed with Niemann Pick Type B when I was 3 years. I am currently 28 and have been managing this condition my entire life. Niemann Pick has affected me physically, emotionally and spirituality. Physically, I have an enlarged liver and spleen, weakened immune system, chronic fatigue, & osteoporosis to name a few. This condition has made me question my self confidence and my life purpose. I have felt despair, pain but most of all hope. It is through acknowledging and accepting how this disease has affected me, I have been able to embrace my true self and purpose. I have learnt the importance of people, compassion, humility, love, strength in self-love, and strength in accepting this disease as a part of me and not defining me. I have learned to embrace my true self which includes expressing grateful to wake up each morning and embrace the beauty of the sun. It has taught me to be present today and not to be consumed by the past or future, to have the courage to accept the things I can not change, learning and realizing that a good life is not measure in time, money or materials but in being true to who I am. I dedicate myself in helping other by sharing my story, being open to all life experiences. I have learned that my body is just a vessel and that though I have this disease, it is my body that is sick and not my spirit. It is when I have been most ill I have learnt my true strength and the strength of humanity. It is this disease that though not upon anyones choice has brought a community of amazing spirits, souls and individuals that have left their imprints upon the world that very few every leave. I continue to strive for a cure for all of us affected and am dedicated to continue raising awareness. I owe my ability to persevere to those written within this book because it is their stories that continue to fuel my courage.

Brothers

A Shutterfly photobook of the 3 brothers:

Click here to view this photo book larger

Turn your favorite photos into a photo book at Shutterfly.com.