Abraza tu rara verdad: el raro consejo de Becky para encontrar el apoyo adecuado
Un compañero de cuidados raros: "Estoy luchando mucho con los sentimientos de aislamiento. La triste verdad es que he compartido mi corazón con las personas más cercanas a mí y he salido sintiéndome aún más sola. Tenían las mejores intenciones, pero todavía nadie me apoya de la manera que necesito. ¿Debería dejar de buscar ayuda? ¿Quizás estaría mejor así?".
La respuesta de Becky: Quiero empezar diciendo que cuando sucede lo impensable y todo tu mundo se siente al revés, es totalmente natural que necesites a alguien a tu lado. Cuando lo que ves por delante te parece demasiado enorme y aterrador para manejarlo por ti mismo, puede hacerte sentir solo y vulnerable. Puede haber mucho ensayo y error antes de encontrar a la persona que finalmente te escuche y te diga esas palabras que tanto anhelas oír.
Está bien sentirlo, TODO, sumergirse en lo bueno, lo malo y lo feo de lo que estás pasando. Acepta con amor para ti mismo que todo es una parte natural del proceso en tu viaje. Hacia la curación, el crecimiento y la aceptación.
"Cuando decidimos en nuestros puntos más débiles ser fuertes, seguir poniendo los pies en el suelo cada mañana y mantenernos firmes para afrontar otro día, nos convertimos en el héroe de nuestra historia".
I think the key word here is acceptance as you cannot process what you don't accept as part of your story. I had to accept the heavy, painful, tearful weight of guilt I carried as a result of passing on a rare syndrome to two of my three beautiful children. Through acceptance, I could become the hero of my own story. Compassionate insights from a genetics counselor were extremely helpful for me. She gave me permission to feel and accept the dark depths of my raw emotions, my guilt, and my trauma; and, with acceptance was healing, from which I rose with an inner strength that I never knew existed. It was always laying dormant within me, I had just never had life shake me up enough to need to use it. When we decide at our very weakest points to be strong, to keep putting our feet on the floor every morning, and to stand tall to face another day, we become the hero of our story. That is a gift we can only give ourselves and our rare and wonderful children who need us most.
The most important people you can meet in this life are not the ones who make it all feel better at the moment. Instead, the ones that serve as a powerful reminder that you already have it within you to be who both you and your family need to thrive. By embracing and living the real truth about yourself and fully exploring all you can become, you will see that you are the constant companion you need most. Not only that, you will find those genuine friendships and connections that you longed for. You will find people that are able to relate and connect to the real you and meet you where you are at. You and your family are never completely alone on your rare journey as long as you truly have your own love and support. Not only that, but the wonderful, memorable one-of-a-kind, diamonds in the dirt, rare partners who soon teach you that you are so much more capable than the person you once were.
Your tribe is out there and only the raw truth of who you are will draw them to you. Dare to speak your truth and share your story, as in doing so lonely isolation will be replaced with authentic connection and you can be the voice reminding someone else in their darkest times, that they too are never alone.
Becky shares her experience living with and parenting kids with Koolen-de Vries Syndrome. Click here to access the full article!
