Monthly Archives: May 2017

And then I was fixed, well more a work in progress

I was asked recently about “fixing” Bridget. I was very happy Bridget wasn’t there to hear the question.

I understand that Bridget is different, but I do not want her to see different as bad or something that needs to be “fixed”. She isn’t a flat tire but a person.  Continue reading

Shhhh they can hear you

Imagine you are in the restroom at a function. You are going about your business and you hear people coming in. Not wanting to be eavesdropping you try not to listen. Then you realize they are talking about you. How you need to be fixed. You are not talking properly. You wore the wrong outfit. Gasp, you were very excited. You sit there and listen to these people who know you, but don’t understand you. You sit there in the stall but am unable to speak up for yourself.  Continue reading

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

We have enough fights, don’t make us fight you too

Dear Senator

I called your office and offered our story. You didn’t return my call so I thought I would write you this letter to introduce you to my daughter, Bridget.

 

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Bridget was born with a congenital heart defect, laryngomalacia, hypotonia, intellectual disability, Reynaud’s Phenomenon, reflux, autism and PACS1. All of these are considered pre-existing conditions. When you vote on the repeal and replacement of the Affordable Care Act, I need you to be fully informed on how your vote will effect those who without the ACA would be left to harm. Continue reading