A few years ago some of our very close friends lost their little girl. She was VERY much like Casey and we have become very close with this family through our daughters. There is not a day that goes by that we don’t miss Giulianna. Last year we really wanted to find a way to …
What Does a Deaf-Blind Diagnosis Look Like?
Shortly after Casey was born, while we were still in the NICU, we were told that Casey failed her hearing screen, but that many babies fail this test. They went on to tell us that they will be doing additional testing and that we should not worry about anything just yet. They performed an additional …
10 Things You Should Know About Having a Child With Complex Medical Needs
There are lots of articles on sites like The Mighty that cover topics like “Invisible Disabilities”, “Being a Parent to an Autistic Child”, etc. While I know there are a lot of families that can relate to these articles, that is not my world. My world is the complex chronic side and we have a …
Book Drive
Fall is in the air and that means one thing- our book drive is in FULL effect! We gladly collect books all year, but during the fall we really step it up a notch. This year we have teamed up with Dell Children’s Medical Center’s Palliative Care Team as well as CPATH Texas for our …
2015 Holiday Events
We will have more details for these events as we get closer, but be sure to save the date for this year’s holiday events. 2015 Special Needs Holiday Party We are teaming up with CPATH again this year for our annual Special Needs Holiday Party. This year we have also teamed up with the Palliative …
Mother’s Day Connection
This past weekend I celebrated my 9th Mother’s Day. There is nothing I wanted more in this world than to be a mother and there is nothing I cherish more than my daughter, but Mother’s Day can be a tad bitter sweet. I have learned how to process all of my feelings like jealousy, anger …
My New Normal
The first 2 years after the birth of my daughter were extremely dark for me. I had moments of joy, but most of the time I was hurt, angry and jealous. I would see a mom and daughter in the store shopping together and start to cry because I could not take my daughter to …