Tag Archives: support

We came, we shared, we joined together

I’m finding it difficult to put into writing. Go figure, here is usually where I just let it all out. Last weekend our family traveled to Virginia to meet our PACS1 family. The weekend should have been an absolute disaster. We had 14 families traveling from around the world.

One PACS1 family traveled from Australia. The trip with their 2-year old son took 36 hours and upon entering the lobby the poor thing suffered a seizure. Being PACS1 parents meant that while the dad checked in to the front desk the mom gave medication and handled the situation. I’m sure the front desk clerk almost puked in her mouth. But PACS1 parents continue on with their lives.

Another child began vomiting and had to be admitted overnight. Again, the PACS1 parents handled the situation. One stayed at Busch Gardens with the older sibling while the other parent handled the ER. Then they switched off.

The hotel messed up 5 of the 14 reservations. Again, some would have thrown their hands in the air and gone home. Not our PACS1 families. We traveled from 4 countries to be together. Three families traveled from Texas. One family drove from Michigan. Two families from New York and another two from New Jersey. A family crossed the border from North Carolina, while still another flew from Kansas. A newly diagnosed family from Ohio was lucky when one parent couldn’t make it a friend said I’ll drive with you and became our weekend photographer. Bridget met her new best friend from Tennessee. Families from the US, Canada, Australia and Spain. Oh and our family from the Cape.

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It was different than I had expected but so much more than I could have imagined.

It should have been an epic failure, but it was more awesome than I can fully describe.  Continue reading

Want to change the world? Make it personal

Warning…I’m on a bit of a soapbox.

I just finished reading a book about WW2 (Escape from Davao). A quote from the book resonated in me as it applies to everything: Natural and man-made disasters, the horrors of the news, the treatment of our elderly, 9/11, Ferguson, police being killed, domestic violence, the drug war and (insert horrendous thing here). I honestly think words from 1944 are still true. Until it becomes personal,until we understand that WE must feel we cannot win.

“We’ve got to have the nature of this war drilled into us Day after day before we sense the whole horror of it, the demands of it, the danger if it….This War has not yet become personal with us…But if we hear the truth day by day … We’ll silence the babble, sober the feather-minded and fight like hell” (Palmer Hoyt page 332)

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TBT–Kaylee is determined to Pay It Forward

Today’s Throw Back Post is about my friend Kaylee. A girl who is an incredible hero. Once again she is participating in the Polar Plunge to support Comfort Zone. The camp that allowed her a safe place to grieve and to grow. Please consider to once again donating to her cause. No child should lose a parent, but if they do then they need places like Comfort Camps. Her plunge is coming soon, Feb 28, 2015. Given the current arctic winter we are having, I am hoping she doesn’t have blizzard conditions!

I am in awe of children. Children who want to make a difference in other’s lives. Whether it is a huge movement like Malala or providing comfort for another child. I would like to introduce you to a beautiful seventh-grader named Kaylee.

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It’s only 7 days old and 2015 is kicking our butt

On Dec 31st we all made resolutions: more me time, more patience, more living and (a favorite) to enjoy 2015 to the fullest. But it seems that 2015 is going to be very difficult to tame.  As a friend of mine recently posted: she is done with 2015.

For many of us 2015 hasn’t begun well. Back to school and back to Every Day Freaking Math. The amount of life changes in just 7 days seems overwhelming.  Friends have received deployment orders (so much for no more boots on the ground). Another special friend has suffered a tremendous loss. Still one more has lost their job.

Even Mother Nature is picking on us. Did I mention it was only 18 degrees this morning? Continue reading

My Challenge: Kerri, yes me

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Today’s Challenge is one of my own. I have to admit I love the Christmas season. Not the season that starts the day before Halloween, but the true Christmas season that begins at noon on Thanksgiving day when Santa appears in the Macy’s Day Parade until the evening of Christmas Day when we sit around with our families and just connect.

Then I had children. Continue reading

Name change

At the beginning of the summer we took Bridget to see a Specialist 20 hours away from our home in the hopes to find an answer to Bridgetitis. We had gone on a search for our own Dr. House. We allowed them to perform Exome sequencing, where Bridget’s DNA would be (in layman’s terms since I really am not a scientist) broken down and reviewed by computer strand by strand allows the scientist to discover where the gene may have gone awry.

We got the results. Finally. Continue reading