Embrassez votre vérité rare : le conseil rare de Becky pour trouver le bon soutien
Un autre aidant rare : " Je lutte beaucoup contre le sentiment d'isolement. La triste vérité, c'est que j'ai partagé mon cœur avec mes proches et que je suis repartie en me sentant encore plus seule. Ils avaient les meilleures intentions du monde, mais personne ne me soutient comme j'en ai besoin. Devrais-je simplement arrêter de chercher de l'aide ? Peut-être serais-je mieux comme ça ?"
La réponse de Becky : Je voudrais commencer par dire que lorsque l'impensable se produit et que vous avez l'impression que le monde entier est bouleversé, il est tout à fait naturel d'avoir besoin de quelqu'un à vos côtés. Lorsque ce que vous voyez devant vous semble bien trop énorme et effrayant pour être géré par vous-même, vous pouvez vous sentir seul et vulnérable. Il peut y avoir beaucoup d'essais et d'erreurs avant de trouver enfin la personne qui vous entend et vous dit ces mots que vous avez envie d'entendre.
C'est normal de le ressentir, TOUT cela, de plonger dans le bon, le mauvais et le laid de ce que vous vivez. Acceptez avec amour pour vous-même que tout cela fait naturellement partie du processus de votre voyage. Vers la guérison, la croissance et l'acceptation.
"Lorsque nous décidons, à nos points les plus faibles, d'être forts, de continuer à poser nos pieds sur le sol chaque matin et de nous tenir debout pour affronter un autre jour, nous devenons le héros de notre histoire."
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!
