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, September 29, 2012

Wildwood Inn

My dear husband has a knack for finding interesting cozy little places to go.

So as we were planning our drive to Tennessee for the NNPDF conference, he found this cute little theme suite hotel.  We looked at the pictures, read reviews, and planned when we were going to go.

After about 11-12  hours of driving, we stopped at the Wildwood Inn in Florence, Kentucky.  We didn't make a reservation because we didn't know if we would stop on our way down or on our way back.  I walked in and was greeted warmly and the young woman at the desk opened a brochure and pointed out the theme rooms that were still available that night.

We chose the Venetian Room.  Most theme rooms have spas/hot tubs.  Unfortunately, we were too exhausted to use the hot tub.

When we walked in, we were immediately amazed by the wonderful artistic work on the walls.  Yes, it was entirely painted.

The floor around the bed was a cushiony blue and looked like water.  The rest of the room was tiled.

 (This is the side view of the bed...note how low it is to the ground!)

The bathroom was a bit small, but fully functional. 

The next morning there was a small continental breakfast, with fruit, cereal, coffee, make your own waffles, danish, bread, and juice. They also have basic/standard rooms and a game room, a lounge, a sauna, an indoor pool and hot tub in the main building (also called the Tropical Dome).

Below are the pictures we took of the room.  If we ever pass this way again, we would definitely stay there again, but in a different theme room!

(A front view of the bed.  The post and lights, chairs and tables are real, but the water and other boats are all painted.)

The hot tub.  The columns and chairs and table are real, the rest is paint.

The door to the bathroom and the alcove for our suitcase.  You can see the ceiling in this picture a bit.

The small fridge and microwave in the cabinet on the right, the tv in the cabinet on the left.  The room door is there somewhere!

Me sitting on the edge of the hot tub.
 My husband, Faron sitting at one of the tables. 

The entrance to the Safari Village, which had huts that could be rented.

The exterior of the huts in the Safari village.

Friday, September 28, 2012


I always had some interest in the paranormal, ghosts, and spirits. But I never really knew how to explore it.

My sister-in-law tells a story about going to a psychic to get a reading and the psychic told her some information about a family member. Little did she (or anyone else) know that what the psychic saw and said would come true a few years later.

I didn't want to spend a lot of money when I wasn't really certain if I really felt comfortable going to a psychic or medium.

There are tv shows and "theatrical" shows with psychics/mediums. But how much is real and how much is made up?

I saw an ad in a local newspaper for a local psychic. She does a message circle every week for $10 a person, no reservation required. So I figured what's the worst that can happen? I blow $10 and never go back.

I never met this woman, had never seen her around town, and she had never seen me before. But that first time made me a believer.

As she was going around the room giving messages to people, she looked straight at me and asked me if I knew someone who had lost a child. There was no need to answer her, as the tears started. That night she assured me Dan was ok - and told me that he can do more where he is now than he ever could here. And he is a very, very strong presence who fills the room when she let's him.

Yes, I've been back to the message circles. Several times. Every time Dan is there, and every time he provides a source of inspiration and comfort.

Psychics/mediums are not for everyone. I have not yet brought myself to have a full reading because I know it will be emotional for both of us. But one of these days I will.

Wednesday, September 26, 2012

Dan's first 6 months in pictures

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Monday, September 24, 2012

Mom to an angel

Yesterday I met with some new friends and some old friends at a monthly gathering of parents and kids with different abilities.  The old friends knew Dan at his worst.

One of my new friends introduced herself, "Hi! I'm (name), mom to (name)."  I answered her, "Hi! I'm Jill, mom to an angel."

She paused a minute, looked at me and then a few minutes later, asked how old my child was.  I answered "He would be 6 in December."

She paused again, looked at me again, and then realized what I had said.

I am mom to an angel.

There I've said it.  It naturally rolled off my tongue, just as if I said "Hi! I'm Jill, mom to Dan."  I didn't cry when I said it.  Maybe because of the company I was in - parents who understand special needs.  Parents who understand life challenges.

It's not a phase I ever wanted to say.  It's not a group I ever wanted to be a part of.  But sometimes you just don't have control over your life.  If I did, Dan would still be here, healthy. 

But I have to accept that he isn't.  Accepting it doesn't make it any easier, doesn't make it any better.  It's just reality. 

I will always be Dan's mom.  But I am also, now, mom to an angel.

Friday, September 21, 2012

A flood of angelverseries

Scrolling through the Facebook postings of my Niemann-Pick family, I found an interesting series of events

Event 1
I came across a beautiful picture of Trek Atlas Ingram.  Trek's mom, Chelsea, commented that it had been 3 months today (the 21st) since Trek passed away from Niemann-Pick Type A. 

Chelsea has been blogging about Trek and the rest of the family, traveling around the world here

Jarrett, Trek's dad, has published one book, and is currently working on another, that celebrate Trek's life.  Information on his books is here.

Event 2
Underneath the picture, Shannon Laffoon commented that it had been 2 months yesterday (the 20th) that her Warrior, Wylder James passed away from Niemann-Pick Type A. 

Shannon, Wylder's mom, has also been blogging about her life with Wylder and her ambitions for the future.  Her blog is here.

Shannon has also published a book, and has other Wylder Nation items for sale here.

Event 3
Further underneath the picture, Chip Bourgeault commented that it had been 6 months tomorrow (the 22nd) for his daughter Kaitlyn, who also passed away from Niemann-Pick Type A.

Many of you may have read Kaitlyn's Korner, the blog that Deanna, Kaitlyn's mom, wrote for many years.

Please take a moment and remember these three families as their little ones have angelverseries.  The feelings and emotions are still very raw and the families are still trying to find their "place in the world".

Wednesday, September 19, 2012

A poem

One of the pages that I follow on Facebook posted this poem.  I do not know the origin.

Sunday, September 16, 2012

Easy way to help the NNPDF

Here's an easy way to raise money for the National Niemann-Pick Disease Foundation. Just start using Yahoo! powered GoodSearch.com as your search engine and they'll donate about a penny to your favorite cause every time you do a search!  You have to designate the charity you wish to support before you start searching.  The charity page is here, so please click and support us!

In addition, do all of your shopping through their online shopping mall, GoodShop.com, where you can shop at more than 2,600 top online retailers and a percentage of your purchases will go to the charity or school of your choice. You pay the same price as you normally would, but a donation goes to your cause!

You can also enroll in the GoodDining program. Eat at over 10,000 participating restaurants nationwide and you can earn up to 6% of every dollar spent on the meal as a donation for your charity or school.

Here's the web site — http://www.goodsearch.com/. You can also read about GoodSearch in the NY Times, Oprah Magazine, CNN, ABC News and the Wall Street Journal.

If you want, you can download the toolbar to make searching (and donating!) easier.  No money leaves your hands - the only thing you have to do is search using the Goodsearch.com website (and the related websites).

As of today, a bit less than $400 has been raised by using Goodsearch and the related sites.  Please help us raise that figure!  I have also included a link on the right side of the page to help you too.

Thursday, September 13, 2012

Measuring blood pressure in kids

If you've ever had to take your child to the doctor and had their blood pressure taken, you know that it is either the easiest thing in the world or the toughest.  Who wants to have their arm or leg squeezed while "tied up" with a whirring machine nearby?

But did you know that where and how blood pressure is taken can make a difference in diagnosis?

Boston Children's Hospital has created a new app like system to help doctors and other practioners make sense of kids blood pressure readings.  Read all about it here:  http://vectorblog.org/2012/09/new-app-distills-the-fine-art-of-interpreting-a-childs-blood-pressure/

(I am in no way affiliated with them - I just thought this was interesting information.)

Photo Book - Holiday Celebrations

I created another photo book....this one has all the holiday celebrations, including Easter, Christmas, Birthday and Halloween (and maybe some others too!)

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Monday, September 10, 2012

10 Months

Wow...10 months already.

At 10 months old we were considering putting Dan in day care but the cost was too expensive. I was also thinking about what we were going to do for Halloween. Trick or treating door to door was out of the question since we are in farm country. We wound up going trick or treating in the mall.

But the first 10 months of grief seems to pass way too fast. Faster than the first 10 months of life.

I still get up every morning. I still get dressed and do something with my day. Most days it's going to work - or at least being physically at work.

People ask me - how are you so strong? How do you do it each day? I don't have a choice. I have to work in order to eat and keep a roof over my head.

Yes, I wish life was different. I wish I was thinking about Dan's first week at school or his next Halloween costume. But instead I'm thinking of fundraisers and memorial services.

Losing a parent or a friend or a sibling is difficult. Losing a child just makes you numb. But the world doesn't understand. Maybe, just maybe, the medical community will add the loss of a child to the definition of complicated grief.

Friday, September 7, 2012


Stress. At some point everyone has it. There is the good stress of a new baby, new car, new house (no, I'm not getting any of these). There is also the bad stress of health issues, job issues, car problems, etc (yes, I have some of these).

But stress is all in how you manage it. If you acknowledge it then you can deal with it and move on. If you bottle it up it just keeps getting worse and worse until it finds its own outlet.

Some of this blog is about letting the stress out, so bear with me.

Tuesday, September 4, 2012


This was the 20th Medical and Family Conference for the National Niemann-Pick Disease Foundation.

We considered going last year to Virginia, but it was way too soon after Dan's diagnosis and we were still adjusting to g-tubes and meds and all sorts of things. We also didn't want to live out of a suitcase again. So we missed last year. We promised we would go this year - and we did!

Yes, Dan wasn't physically present in a recognizable form, but he was there. And all the other kids were too, unfortunately, way too many in spirit.

A picture of the yearly tribute to those who were lost since the last conference.  There are 15 photos and candles on this table.  Once lit, these candles burned whenever the conference was in session.

Lisa Chavez created this wonderful tribute to those who were lost this past year.  Lisa makes all the candles that the NNPDF sends to those who lose a loved one.  You can see her creations here.

But we had a wonderful time.  We met so many wonderful people!

 Heather Taillefer, mom to Princess Monica (see Monica's story here: http://nnpdf.org/MonicaTaillefer.html)

Deanna Bourgeault, mom to Kaitlyn.  This was at a NNPDF Board of Director's meeting at 7am!  Yeah, we needed our coffee!

Kayla holding Kamryn Brumbeloe

Lisa Chavez, mom to angel Breann, and Melissa Higgins

Karen and Gene Quandt, parents to Ty.

 Rebecca Spencer, with her son Johnathan.

Jami Chavez (dad to angel Breann), Chip and Cole Bourgeault (dad and brother to Kaitlyn)

There were so many others!