When I look at this photo, I remember Abby telling her kindergarten class that her new sister was in the hospital (again) but she was going to be home soon.
When I look at this photo, I remember Abby telling her first grade class that there was nothing wrong with her sister. That Bridget just threw up a lot so if you want to be near her make sure you are not wearing nice clothing. White would be a good choice because then you can use bleach. Continue reading
It’s the last day of school. We have thanked the administrators and secretaries for the year-long efforts to keep the lights on, the programs running and balance the well-being of their staff, their parents and their students.
We have thanked our teachers and support personnel for giving our children the foundation of a fabulous education, the emotional support to get through 2nd period and how to maintain their balance on the beam. They have received holiday presents, Valentines, and according to Bridget ate her cupcakes.
We have thanked the office staff and the nursing staff who healed the boo-boo and let our children call home when they needed. We have remembered them on teacher appreciation day, administrative professional day and on nurses week.
There are a few groups we often forget to show our appreciation. Continue reading
Dear Special Needs Dad,
I see you.
I see you in the NICU scared out of your wits but holding it together for your partner.
I see you in the waiting rooms, rarely speaking but always listening. Continue reading
When you have a child that has a disability it is easy to not hold them accountable. They struggle so hard to do the smallest things, that they get the biggest breaks. Bridget frequently gets away with things her sister would not. For example at a restaurant Bridget will be seen watching Sofia on my phone. Her sister? Never in a million years would she be allowed to use a device at the dinner table. Continue reading
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
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
I love us, my village. My friends I just met. My friends I have known my whole life. My friends that live next door and my friends that live in the next country. I love that I can say I have a friend in my town and in the United Kingdom. Continue reading
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. Continue reading
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.
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
Recently I was attempting to plant my vegetable garden when Abby “informed” me that she and Bridget were going to take a walk. Um, what?
“We are bored, so we are going to see the neighbor’s sheep”.
Again, I paused.
When did they get old enough to go for a walk, I thought? Continue reading