Empowering Hope For Parents

by Becky Tilley
RARE Patient, Advocate & Caregiver

Becky Tilley

Looking back on my life’s journey, I see it was always in me to be hopeful, yet I was scared to let it in, to believe anything contrary to what the world told me I was. A slow learner, dumb and a misfit are a few of the labels I adopted as my identity and doing so inspired no hope for my present or my future. I got comfortable being who other people told me I was and what they expected of me which was nothing from what I could gather. Growing up with learning difficulties and the treatment that went along with it made my school, work, and social life very difficult. My lack of hope was reflected in my lack of standards for my life and relationships.

The truth is, I had no role model for what hope looked like, least of all hope in oneself. I had written myself off as a nobody who would amount to nothing as that is how I knew everyone saw me. I had been bullied so many times by classroom peers and work colleagues due to my lack of confidence and learning ability that it felt a safer to live with no hope either for me or my future. I thought if I kept my head down, nobody would be able to attack me, and I would just be able to fade into the background.

I couldn’t understand why I was so different from everyone else, and it was my now husband who showed me that maybe I have actually been wrong about myself all these years. He was the first person to come along and call out the beauty, the strength, and the passion in me that I kept buried so nobody could steal them from me. He saw the value and worth in me that I blinded myself to out of fear I’d have to step into a new life and identity of hope and of courage. I fought hard against his faith in me as it made me feel uncomfortable and pressured into believing I was somebody rather than a nobody. I didn’t feel ready to let hope in, the hope from within that I kept myself from embracing, right up until I felt I had no choice but to fully and completely surrender to it. As my lack of hope no longer just affected me, it affected my precious gift of a family.

After mine and my children’s diagnosis, I was directly confronted with the devastating effect no hope in myself was having. I was utterly anxiety ridden with no personal hopes or plans for the future, and I knew carrying on that route led to a dead end, both for me and my loved ones. I was finally shaken up enough by the diagnosis for my kids and I to step up and make a new decision. I had a unique opportunity to take hold of a new identity as someone genetically rare. I was given a whole new understanding of who I am and why I operate the way I do, I no longer considered myself stupid or less than neuro typical people, I just considered myself as different and that I could live with and be empowered and emboldened by.

Just the thought of my kids growing up with the same self depreciating attitude towards themselves I had and negative beliefs about who they are and what they can achieve is too much to bear. I don’t get a chance to back and re-do my own childhood, giving the sweet girl I once was a voice and self-confidence. Yet I can teach my children how crucial they are to have. My hope for my children and their tomorrow comes from hope within myself, a hope greater than circumstances and that has the power to turn a challenging present into a faith filled future. The more hope I find within myself, the more my children witness me putting it into action by pursuing my dreams of being a person and writer of positive influence.

I once saw hope as only a wing and a prayer, something outside of myself I desperately wanted to work out but truth is, life for me didn’t respond to that, it never changed anything in reality. Only when I put hope in action  by allowing myself to believe myself and my kids are rare and wonderful for a purpose to show the world a unique way to be and dare to celebrate it did my hope truly come alive.

I truly believe that hope for our children as rare parents begins with hope within ourselves. Our kids will always pay more attention to what we do than what we say. So let us demonstrate our hope within them by living out that hope within ourselves.

Resources that Becky recommends:
Courageous Parents Network
Koolen-de Vries Syndrome Foundation
Instagram: @Koolen.Mama
FaceBook: Mama’s Heart International Support Group