Background Information
I am the proud mom of a sweet nine year who has taught me more about life than I could ever have imagined. Everly was born with a very rare and life threatening syndrome called Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (see mmihs.org for more information). Currently, there are a few hundred patients worldwide that we know of and no present cure. MMIHS affects the motility of the intestines and bladder and because of this, Everly requires around the clock care and monitoring. Everly has spent many, many days in the hospital and has had more surgeries than any nine year old should have to endure. She has been through far too much in her little life, but she continues to fight, and we continue to fight for her.
Caring for Her
The saying that a mom (or any caregiver) must wear many different hats has taken on a life of its own with Everly. One of my most important hats I proudly wear as Everly’s mom is her advocate. I have learned through experience that when you have a medically fragile child, it is not a question of will you need to advocate for them that day, but in which arena will you be advocating on that day? My biggest goal in life is to do everything in my power to provide Everly the quality life that she so deserves and with this comes advocating for her day in and day out.
Caring for Me
Throughout this journey, I have also learned the importance of also advocating for myself. It has taken me time to come to a place of awareness of my needs in each piece of our journey. In order to take care of my daughter, I need to take care of myself. This means listening to my mind and body for what is needed in that period of time in order to maintain my health as well.
About the Advocacy Tab
I have chosen to dedicate the Advocacy drop down items to my work as an advocate for children with special needs, along with families and caregivers. I plan to include resources related to advocacy, my story as a medically fragile mom, a question and answer section, along with stories from other families who have stories to share!
Please make sure to check the “Advocacy” drop down menu at the top of the website for more information:
- My Story
- Their Story
- Advocacy Resources
- Q&A
Let’s Work Together
For information related to my past work in these areas, along with possible collaboration opportunities, please see the “Lets Work Together” section on the homepage (Advocacy Work). Additional information can be discussed by contacting me at [email protected].