Rare and Far from the Shallow Now


Defined as “seldom occurring or found : uncommon.”

When #rare is your normal, you seek comfort in #gaga and #shallow from #astarisborn to show the world what rare can do.  An #oscar performance so rarely gains so much interest and attention that it must be uncommon and it must be #rare.

@BradleyCooper and @ladagaga – an exceptional performance like yours and a speech from @ladygaga reminds our family to keep fighting.  A reminder of our journey is perfect timing as we near Rare Disease Day, 2019.

Rare Disease Day is held on the last day of February each year to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

Building awareness of rare diseases is essential.  Statistically, 1 in 20 people will live with a rare disease at some point in their life.  Many go undiagnosed and few have a cure.

Our rare is difficult.  Our rare is painful.  Our rare is far from the shallow now…

To quote @ladygaga “What it’s about is not giving up.  If you have a dream, fight for it.  There’s a discipline for passion: it’s not about how many times you get rejected or you fall down and get beaten up, but how many times you stand up, and are brave and you keep on going.”

To all those who keep on going in search of a cure and awareness for the rare diseases they face; stand up and keep on fighting!

Kindness Hero

As she sat creating her kindness challenge poster with rainbows, peace signs, and wonder woman in the center, a tune was sung over and over again.  She made up this song because she was so happy and filled with joy.
She sang:
“It’s a sunny day.
It’s a sunny day.
Kindness on my side.
Nothing in my way.”
To know Kelsey is to love Kelsey.  Though she selected Wonder Woman as her kindness hero this year, she continues to be ours.
May you have a sunny day today.

Golfing for a Cause

In the midst of questions and concerns, we find hope in our generous family and friends.

Our inaugural golf outing is fast approaching.

If you are interested in attending, making a basket for raffle, or donating something for a basket, please let us know.

We are grateful for you.

Click on the link below for more information:

Golf Outing

Is that okay?

Weekends with two young children can best be described as a constant scheduling conflict.  Kelsey has lacked interested in group sports until this season, and to our delight, she has started basketball.  Her confidence has soared and her friendships on the team have started to blossom.

The first few weekends were full of joy and smiles when she made a bucket or missed.  There was always a chance to rebound.

Last weekend, a parent even came over from the opposing team to say he could watch our daughter play all day.  “She is always smiling.  She really loves it out there,” he noticed.  We noticed, too.

This weekend, when a slow pace ensued and a lack of interest was displayed, it was our first sign that something was happening below the surface.

A two hour nap followed this forty minute game and our alarms were on high alert.

We check in with our doctors to forge a positive plan.  A restful day is hers and a great night of sleep is had.

After sleeping in until 8, she wakes and laughs with her family.  Then she turns to say she would like to take a nap at 9. “Is that okay?” she asks because she knows that it is always okay to listen to her body, but she also knows that it is another signal.

Is that okay?  We pray it will be.