This is the face

This is the face of a preexisting condition:

Boo 1m old in CHB

It’s a pretty face. I think it is the most gorgeous face in the world. I remember looking at this face and thinking how beautiful, simply beautiful my child was. What you do not see at first glance is this picture was taken at Children’s Hospital. This was Bridget’s third month of life and third hospital admission, after five ER visits.

This picture represents the face of a preexisting condition. Continue reading

It’s still complicated

To those in our Government that stood up against the repeal/replacement of the Affordable Care Act, I thank you. Even if it was for a reason I do not support. The work to save our system is far from over.

I’m not quite sure why you thought this would be easy, any of you that are for or against the Affordable Care Act.  Let me debunk a few myths: Continue reading

We can handle the truth

Dear Teacher and/or Educational Support Personnel,

You do a wonderful job of caring for our children. You nurture them. You hold a parent’s expectations in check. You challenge the child and keep the parents honest. Yet sometimes in your quest to be empathetic to our families, your kindness becomes a falsehood. Especially for parents whose child has a special need. You try to understand how difficult our life can be. You want us to focus on the positives, the milestones that are achieved and the goals that are finally captured.

You also lie like a rug. Continue reading

Simons VIP

On April 30, 2017 during our PACS1 Family gathering we were so thankful to have Dr. Wendy Chung join us for a mini-conference. Dr. Chung is a geneticist from Columbia University in NYC. She works with Simons VIP to provide families access to research opportunities, support and information.

Initially, Simons VIP focused on certain copy number variants associated with autism. They have expanded their research to include a wider variety of genetic events that cause neurodevelopmental disorders, (like PACS1).  The main goal of Simons VIP is to help provide treatment and care by identifying the genes that cause medical, cognitive and intellectual disabilities.
Continue reading

This photo….

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.

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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…

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

Accountability

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

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