Day 19 of Blogging for TSC Awareness

by Shannon Hanks-Grandia  (Riverside, California)

Twelve years ago I first heard the words tuberous sclerosis complex and my life was forever changed. I do not have TSC, but my husband and three children do, Rob (38 years old), Rylee (14 years old), Jake (11 years old) and Luke (8 years old). Each is unique in their manifestations and levels of severity. As a spouse and a mom, I have been to countless doctor appointments, lived through numerous hospitalizations, watched my son fight for his life, attempted medication after medication and a diet to try and control seizures, battled and continue to battle the school district, had my child scratch, bite and yank out my hair in an attempt to communicate and felt defeated more than I care to admit. But through it all I have been surrounded by an incredible family, friends and a community that supports with love and understanding.

I did not ask for this journey, and to say that I would not change a thing would be a lie.  If given the choice, I would NEVER choose this road. Yet, there are many things in life that we do not ask for, but life goes on. Our job is to find the joy, hope, strength and love to make a positive impact not only for those we love, but for others traveling a similar journey.

This last year my husband and I have been given the opportunity to be Adult Regional Coordinators with the TS Alliance. This is a position that simply allows us to try and support the adult community. In our attempt to support others, we have been given so much. It would be impossible to name the many extraordinary adults that we have met and the profound impact they have made on me as a spouse and a mother. I love my husband with all that is in me, and although his manifestations tend to be more on the mild side, TSC is there. To watch him speak to and connect with other adults is simply beautiful (not sure how else to describe it).

Then there is the impact these incredible individuals have made on
me as a mother. The future is uncertain, this disorder is unpredictable, yet our community is strong and filled with fight. I have met young women that will one day be my daughter. I hear about their trials and their triumphs and they teach me how I can help my daughter navigate her own TSC journey. I see young men whose manifestations are medically and behaviorally severe. Watching their smiles and joy of life, despite the obstacles and meeting their caregivers and how they have traveled this journey is empowering.

Over these last 12 years I have come to terms that my children will never be “normal,” yet that does not mean that I do not still mourn for what my children will miss out on life because of TSC. With that being said, it does not mean that I cannot celebrate the life that we have been given. I have a unique privilege of watching my husband and children make a positive impact each and every day. I see the people that are touched by their smiles and strength. And most importantly, I see them show the world that being different can be amazing!

Despite the obstacles there is so much to be grateful for. I am grateful that those of us traveling this road have the privilege of learning to celebrate the little details of life that most overlook. I am grateful for the amazing man I married and the three extraordinary children that he gave me. I am grateful for those that have traveled this journey before us and are helping to pave the way for a brighter future. I am grateful for the Alliance and the individuals that have committed their lives to the fight, and one day the cure, of TSC. I am grateful for daily smiles and the understanding and love of those around me. I am grateful God allowed me to be their mom. Simply said, I am grateful for life!