I love big families – I love Moms who are honest even if it might hurt – and I love the Reidmiller family! After reading this interview with Rachelle, I know you will also!
Tell me a little about yourself and your family.
My name is Rachelle. My family and I live in Nebraska. My husband Shawn and I have five children. They are John, age 15, Tommie, age 12, Joey, age 4, Emma, age 3, and Abbie, age 2.
Tell me more about child’s disabilities. Did you know when he was born that he had disabilities. If not, how did you feel when you discovered it?
Our son Joey was born in 2004 with a rare genetic condition called Cornelia de Lange Syndrome (CdLS). We were unaware that he had a disability until he was born. The pregnancy was uneventful and it was the day after he was born that our doctor approached us and said something may be wrong. We were devastated, of course.
This wasn’t supposed to be happening to us ~ to our baby. We were very scared and full of questions. What does this mean? Will he survive? How did this happen? What do we do now? ~ dozens and dozens of thoughts raced through our heads. After several exams and tests and trips to all kinds of specialists, it was confirmed that Joey had CdLS.
Cornelia de Lange Syndrome affects about 1 in 10,000 births and the children share a lot of the same facial characteristics. They have a slow growth rate, physical and developmental delays, and a host of medical problems. They can also have feeding difficulties and the majority of CdLS kids battle reflux problems. For more information about CdLS, please visit www.cdlsusa.org.
You blog a lot about your child’s issues, and that is so valuable to me and I’m sure, to others that read your blog.
For me, blogging is a great way to keep family and friends updated on our family happenings. I blog not only about Joey, but the other children as well. It keeps everyone updated on Joey’s progress and is a great tool for raising awareness about CdLS. I personally enjoy blogging because I have made a lot of new friends in the blogging world.
How have Joey’s disabilities affected you as a person and as a mother?
I think Joey’s disability has affected me both as a person and a mother in a very positive way. I have come to realize how strong I can be emotionally. I used to be very shy but have come to find out I do not have to be afraid to meet new people. I try to face every obstacle we encounter with a positive attitude. I have learned not to take so much for granted and to try and enjoy every second possible. I have also learned to slow down a little ~ stop and smell the roses as they say.
What did you do right? What do you wish you had done differently?
The best thing I did was to contact the Cornelia de Lange Syndrome Foundation. The only regret I have is not facing Joey’s disability right away. I spent a lot of his first year of life in denial ~ a fact that I am not proud of. As soon as I accepted his diagnosis, things changed for the better. He was able to get the services he needed and would not be where he is today if not for therapy and early intervention.
What do you want other parents to know?
I would like other parents to know that even though it is hard, the best thing to do is to face your child’s disability head-on. Don’t be afraid to ask questions or ask for help from someone. The comfort and support you will find will be overwhelming. It helps to know that you are not alone.
Make sure to visit Rachelle’s blog, Take A Walk With The Reidmillers!