The Wrong Words… “I don’t know how you do it”… Do I really have a choice??? This is not the life I chose but the life that chose me! I would not change it. Just like most moms (we all know the other kinds) you fight for your child, you do not take NO as … Continue reading The Wrong Words…
Tag: Mommy of BOS Blog
Raising a child with Bohring-Opitz Syndrome. Blogging about love, hope, life, therapies, and everything in between. I am a mother of a beautiful baby girl, Talynn. She has taught me so much in the little bit of time she has been here. I have learned how to become an advocate, nurse, teacher, physical therapist, respiratory therapist, dietitian, and most of all a MOM! The title MOM has a whole new meaning when your child has been diagnosed with a rare genetic syndrome called Bohring-Opitz! I am writing this blog to help raise awareness for this syndrome and to let others know what it is like walking in this journey!
Preparing for Talynn <3
God's Plan... I entered the world on October 3, 1990. Little did I know God's Plan had already started. I always had that little spunk and attitude but on the inside my heart was still loving. As I got older I begged my mom for siblings. Little did I know then that she was told she … Continue reading Preparing for Talynn ❤
What is an adjective…
An adjective is a word that modifies a noun (or pronoun) to make it more specific: a "rotten" egg, a "cloudy" day, a "lovely" lady, or a "tall," "cool" glass of water. http://www.vocabulary.com/dictionary/adjective Not many people think about it... Not many people even realize it... I catch myself doing it... But thought I should still … Continue reading What is an adjective…
Sharing <3
Children with Bohring-Opitz Syndrome are very prone to respiratory infections. With this being said, Talynn is kept inside majority of the time and is not exposed to a lot of people. Of course when we go out Talynn can sometimes go but we keep her covered. It is not easy explaining to people to stay … Continue reading Sharing ❤
Disability or Disabled… that is the question I may NEVER understand!
Let's start from the beginning.... Talynn was born at 35 weeks and spent 3.5 weeks in the NICU. During that time, I stayed at the Ronald McDonald house in Norfolk. After being discharged, we ended up with TWELVE different doctors and hospitalizations EVERY month since July. During each hospitalization we stayed anywhere from 2-5 days. … Continue reading Disability or Disabled… that is the question I may NEVER understand!
Is it easy?
Is it easy?!? The answer is NO! I have learned over time that if the outcome is good then the task is NOT easy. Over the past year, I have learned so much about myself, my daughter, my husband, and our family. Like every family... there is always the dysfunctional ones. These are the ones … Continue reading Is it easy?
Talynn's Journey 