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.


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. 

There was no awkwardness. Strangers, really. A few of us had met in person. Some of us had “met” online and have had fantastic conversations. None of that mattered. There was never that moment of wondering how to get along. We just did. We barged into one another’s hotel rooms like we were college roommates. At breakfast in the lobby we sat down next to another PACS1 member like we were sitting down to a family reunion.

This is what I wanted, a family reunion. And it was, except there was no drama.  Six months ago I asked if any of the PACS1 families would like to go on vacation with us. I thought maybe 3 families would join us. I was too limited in my expectations.

Families arrived throughout Thursday and Friday. Friday night we had an impromptu dinner at the Outback in Williamsburg with five of the families. We showed up without a reservation for 16. Most hostesses would have balked. The Outback staff were not only accommodating but truly interacted with our children. As the adults began getting to know one another, the children (siblings and PACS1 both) were seen dancing together and being truly joyful.


On Saturday night is when our plans really came together. The College Delly allowed us to use their patio for a pizza and pasta party. Michelle, their manager, was unbelievable. She and her staff provided the perfect location for our families to join one another for a meal. Knowing our families had disabled children proved no barrier to their staff. They helped us lift wheelchairs onto the patio. When they realized we had runners, they quickly closed the outside doors and then stationed a staff member close by so no child disappeared. (We thought Bridget did but she’s just short). The College Delly provided our buffet within our budget constraints and then had plenty of waitstaff on hand for anything else we needed. And what a meal! Simply delicious. (On a side note, if you are in Williamsburg you must go to the College Delly for brunch, lunch or dinner–and definitely the cannoli’s!)

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After dinner instead of retiring to our rooms we took over the hotel lobby. The discussions we had were not centered on PACS1, but life in general. Every child was ours, it did not matter who it was if a child ended up on your lap you were happy to see them. The children milled around, the siblings amused the parents and the parents just were happy to be together. As one mom said, this was the first place she has ever felt accepted. We all have friends and support at home. But on this weekend we were with people who completely understood. Child having a tantrum? Wait a minute it will be mine. Child not eating (or won’t stop), yup we have that too.

One of the most eye-opening things to me was one I realized how different the PACS1 family get together was so different than a party we might attend at home. Usually the moms are chasing the kids and the dads are tending the BBQ (or enjoying their beer). The PACS1 party all the dads and mom shared an equal load. All of us were in-tuned to the children. We all had eagle eyes on them, even as we raised our glasses in toast to one another.

Sunday we were beyond lucky to have Dr. Wendy Chung and her team from SimonsVIP join our group. Dr. Chung gave us three hours of information on PACS1 that we did not know before and gave us advice on how to stick together and really become a group for advocacy. (More on SimonsVIP later)  We had a chance to ask questions and while maybe not get answers at least get direction.

The weekend was full of laughter, sharing, margaritas, dancing and most importantly….family.

Thank you to every PACS1 family that answered my “who wants to go on vacation” post. I will see you in Texas 2018 for the 2nd annual reunion. Although between now and then if you are in the area I will have a room ready for you!


I’d like to give some special thanks to all of those who made this weekend so easy and yet extraordinary.  Our PACS1 group and my family were not paid nor did we receive any compensation from the following companies. What we did receive was acceptance, courtesy and most importantly the best weekend of our lives.  Traveling with a child who has a disability is difficult.  These are the people who made it easier:

Hampton Inn & Suites, Bypass Road in Williamsburg, VA. While there were plenty of screw ups with our rooms the staff did everything in their power to fix the mistakes. Plus they never kicked us out of the lobby. I am hoping we can see you in Texas 2018.

Carrabba’s Williamsburg, VA. Four families arrived on Sunday 4/30 without calling ahead. While we had to wait for tables, their staff sat the 15 of us as soon as they could. They made room for a wheelchair and never judged us for the IPads that were used at the table.

Outback Steakhouse, Williamsburg, VA. They let our kids dance on the patio. They managed to sit five families and a total of 18 men/women/children next to one another. The waitress addressed our children at their level. She never got impatient with the girls wanting to talk about her bun or if she would like a pony tail. We never felt hurried or like we were taking too much time.

Jose Tequila, Williamsburg who sat five families and gave us the best monster margarita ever created.

The entire staff of the College Delly, I know I already praised them. Yet I cannot stop smiling at how wonderful Michelle and her staff were to our families.

Dr. Chung and her SimonsVIP staff who gave up a Sunday to be with our familes.

Last but not least, the PACS1 families that spent their vacation savings and rearranged their lives to meet and join together.

4 thoughts on “We came, we shared, we joined together

  1. mek59614

    So wonderful you all got to spend such an amazing time as an extended family sharing memories that will last a lifetime.
    Also, I love how the various locations you were at made your vacation together so pleasant and went above and beyond. They truly deserve the recognition! I know how difficult going out or traveling can be when someone has varying needs and other patrons or personnel may not be so understanding.
    I hope your 2018 trip is as awesome as Williamsburg!


  2. Pingback: Happy PACS1 Day | (Un)Diagnosed and still okay

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