“We need to learn that obstacles and challenges may always prevail in our lives, but we do not have to hurt.” Sri Swamini Mayatitananda (Maya Tiwari)
Denial seems to be built into the consciousness of our families, our society, and our conscious reality. We would much rather ignore than embrace. We would much rather not accept than accept. Somehow this seems to be much easier, because it requires no work at all, whereas accepting and embracing all of it takes deep inner-work.
Living in denial is not accepting some part of your life that you don’t like or want to be different. Life is miraculously imperfect and perfect.
When your child has something wrong, has an incurable condition, or genetic condition it is extremely difficult to accept. Actually, it is very painful and heartbreaking to accept. How do you accept that your child has a rare genetic condition? I will tell you that accepting that my daughter has Tuberous Sclerosis Complex is a daily practice. I share my story because I know that other parents are facing similar situations. This is not limited to my particular situation. We all at times are in a process of accepting the most challenging parts of our lives.
I have come to the conclusion that being in denial is not helpful for anyone, especially my daughter. If I deny that she has Tuberous Sclerosis Complex, I am not accepting reality and or prepared to face what she may experience with presence and compassion. I have to be present when I sit at the doctor’s office with her, give her vitamins, be attentive when she swims, gets an MRI, and watch her grow into the person she will be.
If I accept, and embrace all of it then I can work with her. I can fight and advocate for her, and work to support, and nourish her. When I accept the situation, I am ready and willing to meet what happens fully. Then, I can do everything in my power to help her heal. Yes, heal. There is no cure for this condition, yet there is a way to change the expression of her condition—I believe.
Some days more challenging than others. I pray and wish that she didn’t have this condition, and I worry about her daily. I have a choice. I can worry, and deny reality or accept it. Most days, I choose acceptance as challenging as it is. Deep breaths, prayer, meditation, asana, and mantra—it all makes a difference.
The blessing is that my daughter is doing well. She is making progress. She is seizure free, and her lesions have not grown as far as we know. She is strong willed, independent, fiery, and determined. She is not her condition, and none of us are the conditions that we have.
If we are willing to step into empowerment, we can transform our suffering and denial into the light of acceptance where it all can be healed.
Thank you for taking the time to read this. If you would like to know more about Tuberous Sclerosis, please visit the Tubersous Sclerosis Alliance’s homepage.