Brooklyn’s mom, Patience shares with us all about Brooklyn and the BBSOAS life.
How old is Brooklyn and how did you choose her name?
Brooklyn is 6yrs old and I chose her name because of its meaning of water and stream. It was my hope that she would be a calm little girl however she has proven to be the opposite (lol).
Three words that describe Brooklyn?
Brooklyn is a sassy, intuitive, and a very determined little girl. She doesn’t let anything get in her way and is by far going to do it her way with an added flavor of sassiness.
How and when was Brooklyn diagnosed with BBSOAS?
Brooklyn was diagnosed with BBSOAS at the age of two. I can remember receiving the anticipated call from genetics requesting us to follow up for her genetic results. Initially, I remember feeling a sense of uncertainty, confusion, and fear. Honestly, I still have those days but am grateful that I do have a circle of friends and family I can talk to when this journey seems relentless.
What are Brooklyn’s favorite things to do?
Brooklyn enjoys being outdoors and surrounded by kids. She especially enjoys playing with her baby brother, watching music videos, and riding in the car to get some fresh air.
What are Brooklyn’s strengths?
One of Brooklyn’s strengths is definitely her determined attitude and “can do spirit”. No matter how difficult a task may seem due to her limited vision she is determined to do things her way and refuses to give up. She is currently working on learning how to navigate the stairs safely in our home. Brooklyn also has strong social skills and enjoys playing with her peers.
What has she taught you?
Brooklyn has taught me what the true meaning “Patience”. Every day she teaches me how to be more patient, compassionate, and kind to others. Navigating this journey, I’ve also learned about strength, love, perseverance and forgiveness. Most importantly she has taught me to embrace and respect her uniqueness and to simply just slow down and live in the moment.
What are the most challenging and rewarding aspects of raising a child with BBSOAS?
There are quite a few things that are challenging however sensory, communication, and sleeping issues have by far been the most challenging. Brooklyn is nonverbal and the challenges of guessing what she wants or not knowing what is wrong when she is ill can be extremely difficult. The most rewarding aspect has been watching her progress achieving milestones and being there to cheer her on every step of the way.
What is the hope you have for Brooklyn’s future?
It is my hope that Brooklyn will acquire more skills with patience and practice and continue to grow and be happy. I hope she achieves the highest level of autonomy and wish for her to have all the medical support she needs to live well and enjoy good health. Most importantly I wish for her to have caring doctors, nurses, and therapists to help her and that she is surrounded with a support network of family and friends that are committed to ensuring her best interest.
If you could go back in time and tell yourself one thing on the day Brooklyn was diagnosed with BBSOAS, what would it be?
I would definitely tell myself that I did not cause my daughter’s condition and God created her in his image. She is beautiful and wonderfully made. Don’t focus on her limitations and celebrate her accomplishments.
Carlie is the Vice President of the Board of Directors for the NR2F1 Foundation, a registered 501(c)(3) non-profit organization dedicated to those living with rare mutations on the Nr2f1 gene.
With a B.S. in Special Education and a M.S. in Counseling, Carlie has worked at EPU Children’s Center as a Resource Specialist serving parents of children living with disabilities and then directed a parent leadership group for disability advocacy through storytelling and public speaking.
Carlie lives with her husband Jeff and their two daughters, one of whom has the rare Nr2f1 gene mutation, in Royal Oak, Michigan. She wants all Nr2f1 families whose lives have changed dramatically to know they are not alone.
