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.

Chicago

The 23rd NNPDF Family and Medical Conference was held in Chicago this year.  That meant it was drivable...12 hours each way.  Yes, 12 hours in a car with a 2 year old.  Truthfully, I would do it all over again! We split the trip into 2 segments of about 6 hours each.

We had leisurely and scenic drives.  We had new experiences. We spent lots of time together.  We enjoyed our trip.

Yes, it was emotional.  There were new friends to be made and old friends to hold close.  Here is the short version of our week: https://goo.gl/photos/VJzP4rpPe8nRiBRG7

NNPDF Conference - Baltimore

The first four days of August were spent in Baltimore at the annual Niemann-Pick Disease Family and Medical Conference.

This year the International Niemann Pick Disease Alliance also joined us at the conference.  It was a unique chance to meet international families and realize that we are all bound together by the same issues.

We had the wonderful experience of welcoming Greg Crawford, Dean, College of Science, at Notre Dame University.  Greg was completing a cross-country bike ride in support of Niemann Pick reseach.  You can read about his ride and his fundraising efforts here.

I shared the photo of the yearly memorial service and the names of those lost since last conference.

I was also able to meet Kristen Lopez.  She lost her son Gavin to NPC just 12 days before we lost Dan.  At the time Kristen had a blog explaining all the changes and issues she was experiencing with Gavin.  We bonded over emails and Facebook, but had never met in person.  Here is a picture of the 3 of us at the Greg Crawford welcoming ceremony.

We also had a chance to meet a family that used to live a few hours from us but recently moved back home to Rhode Island to be closer to better medical care for their son Chase, who just turned 4.

There were so many families that I had only met online and many families that came to the conference for the first time.   Although it is an emotionally difficult time watching the disease progress, it is also an uplifting time meeting with other families and sharing a laugh or two.

Another Weekend Wander

As I was writing about our beautiful trip to Nantucket, I realized that I never wrote about our first weekend wander after Dan died.

Over the summer I heard about a family with two young boys that have Niemann-Pick Type B.  They live near Watertown, NY, which is about 3 hours away.

We took the scenic route through the Adirondack Mountains and a bit of a heavy rainstorm.  What started out as a rainy day, turned into a nice afternoon. 

We had a wonderful day talking with family and friends and listening to music.

That evening they had a fire dance routine. Sorry if these are dark, but it was night-time.

Through some amazing generosity, we were able to stay at a summer cabin and enjoy a beautiful sunrise on Lake Ontario.

We had a lovely breakfast with some of the family and drove home.

On our way home, we stopped a met another mom and her two children, one of whom has Niemann-Pick Type C.  They only live about an hour away.  We had a wonderful conversation about how you move forward after losing a child - she lost her son - and doctors and therapies.  I know that we will be seeing more of her and her family.

A Beautiful Trip

Before Dan was born, hubby and I would take random weekend trips.  Some were just day trips, others were for the weekend.  We would typically go "off-season" so it wasn't as expensive or as crowded.  Yes, there were sometimes that we missed some things because they were closed - it was off season after all.

As anyone with a child knows, it becomes difficult to travel - diapers, formula, toys and lots and lots of clothes.  So we put our weekend wanders on hold.

After our trip to Nashville this summer for the NNPDF conference, we realized how much we have missed our weekend wandering.  So.....

About 6 weeks ago, a fellow Niemann-Pick angel mom posted in her blog that she was planning on spending about 4 weeks in Nantucket, Massachusetts.  Since Nantucket is only about 4 hours by car away, it made for a perfect weekend trip.  So I contacted Shannon Laffoon and we decided that yesterday was the best day for a visit.

We got up early and drove out to Hyannis, Massachusetts.  There are only a few ways to get to the island of Nantucket - ferry or plane.  We opted for the ferry.  We took the noontime high speed ferry, which was an hour trip.  When we got off the ferry, we met Shannon and shared some hugs.

We had a beautiful sunny day, about 40-45 degrees to go wander the island.  We first grabbed some lunch and talked about our beautiful children.  Shannon blessed us with Wylder Nation wristbands, in memory of her Warrior, Wylder.

 

 We walked around part of the island - looking at architecture, talking about all sorts of things.  We wandered out to a lighthouse

It was a bit windy so instead of walking around the beach we went and had some hot drinks.  As we headed back to the afternoon ferry, we stopped to take a picture of the floating Christmas tree.

And to prove that we really did spend the weekend together, we asked someone to take a picture of us with the Christmas tree

We had a wonderful visit and I am thrilled that we had a chance to meet Shannon and help with her healing journey.

Thanksgiving-Reunion Weekend

Last weekend I had my 20 year high school reunion (so do the math...)  It's the first reunion we have had and I was skeptical of going.  But I am so glad I did!  I reconnected with an old friend who I haven't talked to since during high school.  I spent time with others that I haven't seen since high school!  And I found a classmate that now only lives a few minutes from me (which is over 3 hours from where I went to school).

 The favor table

 

 Some of the favors

Our school colors

Me taking pictures

Musical chairs

(boy was this competitive)

 

My husband with the "girls"

(from l-r: my best friends wife, my hubby, a teacher, another best friend and me)

 

My best friend and her husband

Since I was in my hometown area for my reunion, and didn't get there for Thanksgiving, I wanted to stop in and see my grandmother and my uncle.  I don't get to see either of them that often.  Grandma has Thanksgiving at her house every year (and in recent years has had help from her daughters in cooking).  We've missed the past few years for various reasons, so it was nice to see her this year.

Here are some pictures from other years:

My grandmother and my son

My uncle and my son (many years ago)

Reunions!

As you are reading this, I am on my way to my hometown (about a 3 hour drive) to go to my 20th high school class reunion.  Out of 145 classmates, we will have between 40-50 people (including spouses).  Some of us have moved to far-flung places, others are spending time with family over the holiday weekend.

I never thought about going to either my high school or college reunions...it just wasn't something that interested me.  I had a few friends in school, and some I still continue to talk to and consider very good friends.  But for the most part, I did my own thing when I was in school and didn't really care what other people thought.

In 20 years, we have lost 2 classmates.  Both under age 40 (as all our classmates are).

I don't know what to expect, but I hope to have a good time catching up with lost friends and seeing some teachers that I have missed.  Moving 3 hours away made it difficult to keep up with everyone.


Who else has gone to a high school reunion?

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.

Nashville

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!