The Island

I have a running joke with my friends: Let’s run away and buy a private Island. On it we will build our true village. We will be surrounded by our “family” that gets us.  No explanation needed. Just comfort and company.

The Island would have a school that was privately funded by us. We would have traditional and special educators that collaborated together to get provide the best academic opportunities possible.  The would arrive by ferry every day, eager to work with our children. Not guided by what the Federal/State government mandates, but what their educational experience allows them (and our child) to shine.

The Island would have a therapeutic center where our children can thrive. We would have OT / PT / SPT / ABA therapists arrive by ferry every day. Energized to truly see results and work with parents who are not expecting them to “fix” our child, but help them acquire skills to succeed in the world beyond our Island.

The Island would have bonfires and happy hours every night.

Jimmy Buffet music will be played, maybe he will visit.

The Island would have a weekend “restaurant” where our children (if they desire) could work, showing off their life skills while we parents enjoy a communal meal served with a  smile.

The Island would have fields and adaptive play structures where our children can just be children. Dance in the sunlight, do cartwheels and run around to expel all the pent up energy they have been trying so hard to contain.

The Island would be one of support and community.  Where parents share experiences, where siblings share how they deal with a life not so typical and where our children connect with others who are more like them.

The Island is a secret dream.

The PACS1 Family Gathering weekend is not.

Children will dance in the lobby.

Siblings will share in the pool and around the breakfast table.

Parents will share a cup of coffee in the morning and a more adult beverage during happy hour at night.

We will meet with researchers interested in finding out what PACS1 is and how to create the best opportunities for parents to be involved in the research.

We will share.

We will cry.

We will laugh.

We will travel from around the world to no longer be alone in this PACS1 journey.

For one weekend in Texas, we will be at our Island.


Our PACS1 Family Gathering in Texas is only possible thanks to the hardworking efforts of my PACS1 friend, Erin. She has created a truly unique event and she is trying to offset costs for parents by creating a Go Fund Me.   Having Bridget is a miracle, however she is an expensive miracle. Having Bridget meet her PACS1 siblings? It is worth every penny. For anyone who is able to help us put on a true PACS1 Family weekend, I thank you.


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