Being the mom of an ambitious, artistic dreamer has been a fun journey. From a very young age, Brinley always said, “mom, I want to change the world,” and has always been determined to do just that. It wasn’t until being diagnosed with PH in January of 2020 that my then 14-year-old truly started to see her path in being able to make the difference she has always wanted to.
Brinley took her diagnosis very well, and her only concern was missing school while being admitted to the hospital. My heart was broken when I learned that my daughter might not see her graduation and likely wouldn’t make it to 17. I honestly didn’t know how to take my next breath. Every parent sees something special in their child, and I am no exception. The day Brinley was born, I knew she was meant to do big things. Never in my wildest dreams did I think this would be her journey; however, as a family, we believe that everything happens for a reason, and we are determined to remain positive.
So how do I stay positive while watching Brinley have bad PH days and trying to wrap up her grade 12 year? Our family has made a family ritual of “collecting the wins.” You are probably wondering what that looks like, and honestly, it may look different for your family, but here is what it looks like for ours. We recognize our positive successes (wins) throughout the day. Then at the end of the day, before we go to bed, we sit down as a family and talk about each other’s wins, and then we CELEBRATE with a family dance. We put on a silly song and dance our silly dance and laugh. I have found this so good for my soul for so many reasons. I challenge everyone to try it!
Brinley has done almost all her high school at home because of the pandemic; it is a decision my husband and I wanted her to make along with her team and one we supported. It's been such a wonderful experience watching Brinley dedicate herself to her studies, ensuring her schoolwork gets completed, balancing her health/appointments with her school schedule and enjoying time just being a teen.
I think back about how I was at her age, and I don’t think I was half as organized as she was. Seeing Brinley so driven has inspired me to push myself every day. As I always say to my mom….''Brinley is everything I want to be when I grow up.'' Brinley hasn’t just been on a PH journey; she has been on a journey of being a high school student while being determined to pave the way for the younger PH kiddos. Brin's efforts are a testimony that they can and will achieve everything regardless of a PH diagnosis and its challenges.
I honestly didn’t know how I would be able to make this journey. However, being surrounded by the PH community and having the resources and support from PHA Canada has given me the strength and hope I need so I can be the best Mom and Caregiver for Brinley as she transitions from pediatric to adult health care and from high school to university.
As we prepared for Brinley to walk the stage, tears flowed seeing her in her graduation dress, picking out her corsage from her dad, and getting sized for her graduation cap and gown. Still, one thing is for sure; these tears are much different than those cried at the beginning of her PH journey, and the hopes and dreams I have for her future are much brighter.
Comments